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Hi, I'm Chuck, and just had L5/S1 anterior fusion done 3 weeks ago, and have had a very hard recover

HopeforChuckHHopeforChuck Posts: 166
edited 06/11/2012 - 8:25 AM in Back Surgery and Neck Surgery
Hello Everyone,

Well, I have been a lurker for a couple years now. I have found the information on the board to be both encouraging and sobering. Here's my story:

I am 36 years old and was very athletic before all of this started. The LBP started when I was 20. At that point, my lower back would hurt after I would play basketball, or do heavy yard work, or whatever. The pain would be moderate to severe for a few days, but then wane and I would be OK. Well, about 6 years ago, I got very serious about exercising. I have never been overweight, but I found myself to be out of shape by my standards, so I began running in earnest. I did 5Ks and actually ran one in 20:30 which is "flying." Without back pain. At the same time, I was moving from house to house during the real estate boom, basically flipping our living quarters by painting the whole house myself, and by doing yardwork (planting trees, etc). At the same time, I was running almost every day without back pain. One day, I did very heavy yard work--as in planted 10-15 fairly large trees. I knew I would pay for it the next day and I did--the bad back pain came but I figured it would go away in a few days like it had always done before. Well, it never went away! That was six years ago.

I kept running through the back pain, even did yardwork. Took me a while to see someone. Finally did and found I had a herniated disc at L5/S1 on the MRI. I kept up with all my activities--just kept going. Didn't take any pills-nothing--just did what I had to do. I did not have much leg pain at all--just throbbing pain in my lower back. I did physical therapy--it just flared it up. Tried the shots--nothing. Finally, I went to see a neurosurgeon, then an orthopedic, then another guy. All of them recommended the fusion. The neurosurgeon--who is renowned in this area--said, "perhaps you can try a discetemy, but I don't think it will help...but it is worth a try." So...I did the discetemy with the neurosurgeon. I had decided that I was going to push it like all get out before the surgery--I was going to run, run, run, and plant a boatload of trees and shrubs in my newly purchased lawn--and I did just that. The reason was I wanted to go into the surgery with the pain at it's worse so I would know if the surgery "worked." Huge mistake. Now I know that the discetemy--really any surgery for that matter--inflames the area around the bad area. So, he took the disc fragment out and when I woke up, I had the worst pain of my life. I was literally crying in the recovery room. As you know, this is an outpatient procedure and not known to cause this kind of post-pain--but it did to me because of my prior stupidity. All I kept saying was, "it didn't work, it didn't work." And it didn't. The only improvement I have noticed that may or may not be in relation to that operation is that my back stopped "catching"...I still don't think any of the doctors have understood what I mean by this term. My back would "catch"--while I was painting, bending or whatever...a sudden sharp pain that would literally freeze my whole body. Well, it hasn't done that anymore--big deal.

The lower back pain persisted. At this point, I was still at the peak of my training. I remember needing to run after this little surgery. This is when things began to slowly degenerate. After the surgery, the doc gave me vicodins--this was the first time I used narcs on the pain. The vics didn't work--so he switched to Oxycontin. Oh my goodness, the rush of the first few weeks of Oxycontin was something. BE CAREFUL. Those whose bodies don't react well to narcs have a huge advantage.

The discetemy was four years ago. After this, I started using the narcs off and on for the LBP. I kept active--did whatever I wanted to do--but paid dearly later. When the pain would get too bad, I would go to one of the docs--and actually scheduled the fusion several times only to chicken out. Here were my concerns about having this barbaric surgery:

1. Why could I still plant trees, run a few miles, play basketball...yes, I would have pretty bad pain later on and a baseline of pain that was unacceptable long term...but I could still "do" these activities. Isn't fusion for people who literally can't walk, or couldn't run if they tried? I still think this is a valid question to consider pre-surgery.

2. I have very tight hamstrings--as in freakishly tight. It sends a chill down my spine to think that my problem all along has been tight hamstrings and not the disc I just had fused. Can't go there anymore. But for considering this thing--cover your bases.

3. That I was overestimating my pain. My worst fear was that I would get this fusion done and then long for the days of pre-surgery. According to several docs I have spoken to, many fusions are patient generated. Especially in the case of DDD.

So, I waited and waited and waited. I was also watching the technology--the ADR, the minimally invasive stuff. Read thousands of pages online about this stuff. In the meantime, more and more pain pill popping.

This past summer, again, I was scheduled for the fusion with the neuro guy. However, I was haunted by his lack of decisiveness. He said at my first appointment that he never goes from the back anymore. At the next appt, he says he wants to go from the back and front. At the pre-op appt, he is still asking me what I want him to do--front and back, just from the front, do I want flexible rods put on the disc above it. So, I cancelled the surgery literally a day beforehand knowing that I was basically closing the door on having this top guy operate on me.

I went back to the orthopedic. He is the one who from the very earliest days of my back pain walked in the room and was very sure of himself. He said, "you have a clear cut problem, it is L5/S1, the rest of your back is great, you should be 90 percent better." I also liked that all he does are spines--plus, he is very cutting edge involved in the ADR trials. The neuro guy, while brilliant, was getting up in age, what incentive does he have to be well read--plus, I found a study on my own that states that 360 fusions are no better then anterior only (the neuro had planned a 360 when he finally figured out what he wanted to do). So, I scheduled the anterior fusion with the ortho. The ortho told me that I had been wise to wait the past 6-7 years--he said the progress made since the first time I saw him back in 2001 was huge--even on the fusions. He said that the disc replacement had also advanced with the ProDisc being approved. He said that I did well by waiting but he really didn't see how much more I had to gain by waiting any longer. Made sense. He said he was 50 percent sure he could get the ProDisc in--the PA said more like 20 percent--this ortho is known to be very optimistic. He suggested I authorize him to do the Prodisc with the understanding I would be fused if he "couldn't get it in." After lots of back and forth--I finally authorized him to do the Prodisc if he could. As it turned out--he said the way my bone is shaped wouldn't allow him to get the Prodisc in. He realized this during surgery--so he just fused it. I was very uneasy about going with the Prodisc anyway--but was trusting the Lord that if He wanted me to have the replacement it would fit in. I have read that when it is L5/S1 you fuse--but I know there are other opinions on this.

Surgery day was surreal. To go into a hospital and basically allow them to disable me was tough to do. As I have said, I was still able to do most activities, only with pain. The issue had become the pain pills I was taking to control the pain (I am pretty confident there is no real mental addiction--but we'll see). I was up to 20 mg Oxycontin a day, plus vicodin as needed (read: a lot). The doctor told me that, "when you wake up from surgery, the original pain will be gone, you will have the incisional and surgery pain but that's it." That false statement has haunted me to this day. Obviously, it was untrue. I have read of those who had this great experience--I was not one of them. It may be due to my prior-pain-pill-use. Could it be that some go into the surgery without having been on pain-pills, so they have the surgery, get that great initial feeling of Oxycontin--it carries them for a month or so, then by that time they are healing anyway? I have thought of all these issues.

So, I woke up from the surgery in pain I wouldn't wish on my greatest enemy. I am just trying to be honest. The first two hours were hell. At one point, I asked my wife if she had a towel I could "bite down on" like I've seen in the movies. I was crying, tears streaming down my face with my poor family watching. They had made a big mistake with my pain meds. They KNEW beforehand that I was coming in to this with a tolerance to high levels of meds. I offered to come off the meds a few weeks before the surgery. They said not to, that it would be OK. Well, they were wrong. I def recommend at least thinking about coming off the meds before the surgery. They had me on a morphine pump--this was a mistake--the doctor had ordered a Dilaudid pump. It took an hour or so for them to figure it out--they finally got the Dilaudid going and it became bearable. Here are some things about the surgery in the hospital that I haven't seen posted online in my extensive reading:

1. Had a very hard time peeing the first day or two after they took out the catheter. It took lots of will power for me to get it out--but I did. I imagine others would have given up and ended up with the nurse putting in the straight catheter. For me, there was no way I was going through that and I just kept trying to get the pee out and I did.

2. Make sure you clean yourself out the day before the surgery to reduce constipation issues.

3. My doctor does not use braces. Still don't understand why he wouldn't have the patient go to all lengths to make sure the fusion takes. Then again, I have read studies that have found no difference with the braces. For those without the brace, make sure you don't bend--not even to tie your shoes. Also, make sure you don't stay in a sitting position in the hospital bed too long. I know these things are "duh"--but I wasn't told these by the doctor, the nurses, or anyone. Had to figure it out on my own.

4. I had a private room and can't imagine how it would have gone with a roommate. I mean, it is a pretty gross recovery seems you would want privacy.

5. Helps to have supportive family.

Post surgery....well, today is the three week mark and these have been some of the hardest days of my life. The pain at times has made me cry--and I am 6 foot 4, fairly tough. I have the pain down the left leg, the pain in the back, weird sensations in the hip, the legs. I am on Oxycontin and break through Dilaudid. The doctor has me walking around the house as much as possible. But nothing else. The PA told me I could stretch my hamstrings--this was 10 days post-surgery. Huge mistake. I stretched them and literally could not stand in one place for the next week without extreme "stretching pain" in the hamstrings. They are still sore--although I never felt anything pop.

I didn't mention that I had a discogram done--very painful test--but bearable (anything is bearable now that I have gone through this recovery). They could barely get the needle into the L5/S1 disc space--but it did create my back pain. The neuro had this test done--the ortho says it was totally unneeded.

I also didn't mention that I am a concert pianist--so lots of sitting--as in hours at a time without support. The day before the surgery, I gave a concert as soloist playing Rachmaninoff's second piano concerto.

The doc told my family after the surgery that it went well--I should have 80-90 percent pain reduction, that the nerve is now in a more healthy location--he did the decompression--although leg pain was never a severe issue--I'm wondering if he caused more issues--because today nerve pain is a huge issue and I can't live like this the rest of my life.

Again, the biggest issue for me has been that the doctor was wrong about the recovery. If he just would have warned me that the recovery would be hell for a month or two, I would have appreciated that. Now it makes me think something went wrong when I have this kind of pain. I have talked to the PA about the pain level--she said it is normal--everything I read online seems to indicate it is normal--especially on this board. She said that the swelling inside is hitting the nerves and the screws in the spine cause pain. Also, she said that my prior-pain-pill-use is amplifying things. They really haven't upped my pain meds all that much from the pre-surgery levels--I understand why--we are already at too high levels. Her point was that since they aren't giving me all that much more then I had pre-surgery, I am pretty much feeling the full effects of the surgery.

To be quite honest, I have had moments of regret--questioning why I did this. There was one doctor who was honest with me--as it turned out, he didn't do fusions very often, so he wasn't the right guy to go with--but he told me while I was going through the decision process: 1/ Your pain meds are way too high for DDD. Oxycontin is crazy for this type of pain. 2/ For MY problem, DDD at L5/S1, my chances were 70/30 at best. 3/ That he himself had the same problem and that he took anti-inflammatories every day, he showed them to me from his pocket, and determined to get into the best possible shape whatever it took and avoid the surgery--he really was in good shape--rock hard abs, etc. 4/ That due to my pain pill use, when I woke up from surgery, I would say, "Holy S%&$" because of the pain. So far, I would have to agree with this guy. Part of me is glad I had the surgery--the implant is in, the incision has healed, I am 3 weeks out and, while in a lot of pain, haven't had any of the big side issues (retrograde, infection, bowel problems, etc)--so I am on the other side of the mountain--I need to keep remembering the nagging pain I was in all the time that had caused me to take all the pain pills.

So...here I am...the pain is bad...3 weeks out and lots of pain. The PA said it takes 4-6 weeks until most people say they are glad they had the surgery. I have also read that it may take 3-4 months for most people to have resolution to their leg pain issues.

Sorry this is soooooo long. I have appreciated all of your stories--some of them have literally gotten me through. I also want to say that those of us in this situation tend to go online and scare ourselves to death with all the horror stories. Last night I tried something different and looked for success stories from fusion surgery. I found that Phil Jackson, coach of the Lakers, had fusion in 1970, then played in the NBA and of course coaches. I found that TJ Ford, a rising basketball star, had fusion last year and is now averaging 15 points a game for his NBA team. I found that several WWF wrestlers have had this surgery and went back to wrestling--that is nuts-crazy--but true. We need to look at the good success stories. The jury is still out on me. If anyone got to the end of this--I wouldn't mind some advice on what the pain levels should be at this stage--not that it matters--it is what it is--but it helps to know I am not alone.

God bless,

Dr. Chuck

Constant LBP since 2001
Microdiscetemy with Neurosurgeon in 2004
Been scheduled for fusion several times only to cancel at last minute.
Injections/PT didn't work.
Discogram--semi-positive in 2008
L5/S1 Anterior fusion by Ortho November 11, 2008

**3 weeks in: more pain then I have EVER had in my entire life. However, it does seem to improve (then get worse again). Battling to be hopeful that the disc really was the pain generator (apparently, that is the number one reason for failure of fusion for DDD--that the disc wasn't the culprit in the first place, so the operation was irrelevant).

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Comments

  • I am so sorry you are suffering so. I have not had my surgery yet. But I'm also a L5 S1 person. I had a microd in January for a 11 milimeter herniation which didn't work, so now it's fusion for me.
    I'm sorry I can't share my personal experience with you yet, but you will find several people on here who can.
    Just try and take it one day at a time, and know in time it will get better.

    God Bless,

    Caity
  • One thing I'm glad about my doctor is he has been totally honest with me. He said the first 2 weeks are going to be tough, then i should start to feel a little better day by day. All I'm hoping for now is the pain from the surgery isn't as bad as my back pain now. One weird thing that happened to me yesterday is I met a new neighbor who had the same surgery I'm having and he said when he woke up from the surgery, he knew instantly that the injury back pain was gone. I guess that gave me a little jolt of confidence.

    Good luck with your recovery!

    Mark
  • God bless you, you sweet boy! I had almost the same surgery back in June. Recovery is a long, long road for some of us. You should see an improvement in your pain at about the 4 month mark, at least it was for me. I don't have any of the pre-surgery pain...just a heaviness feeling in my back. I'm almost 65 and a smoker, so I know you will heal faster than I do! Wish I was there to give you big hugs! Hang in there, big guy, you WILL feel better soon!

    I agree with you about folks being on high levels of meds pre-surgery. The body builds up a tolerance and it takes so much more to get any relief. I'm only taking Vicodin maybe 3 times a week now. The nerve pain is the last to go...and it takes its sweet time leaving!

    As many will tell you, walk as much as you can...it promotes good blood flow to the area and helps so much with the healing.

    Take care and let us know how you are doing.
  • hi ya my god that took some reading lol
    well now im propa shiting my self iv got to have done what you have had done and on the same place i even get that which you call catching your back. omg thanks sounds totally brutal.i wont sleep tonight lol good look with recovery ill post my story when i have it hope its not like yours horror lol latters tready
  • It's still quite early in your recovery, and it will take months to get better. Your progress will initially be judged at 12 weeks to see how far you've come. Some people with success stories were off the pain pills by then, or didn't need them as much. I'm basing this on what I have read here, but remember everyone is different. I know you have a good chance because you were physically fit before, and unfortunately I was deconditioned by the time I first herniated L4-5 and L5-S1. I had a discectomy and it did nothing. Last June I had a 2 level fusion with hardware and laminectomy and I am still struggling with the pain. I have severe DDD, among other problems in the lumbar spine which makes things difficult and have to take fentanyl, norco, muscle relaxers, neurontin, cymbalta, and motrin.
    Like I said, it's going to take time to fully recover and flare ups are common. Always let your doctor know what's going on and call if the pain worsens. I hope nothing but the best for you, and wish you a successful recovery.
  • . . . for your post. I read it all and the thing that struck a cord in me was your statement about going into the hospital and allowing somebody to disable you. Yup -- been there! Before me surgery, I had suffered through a 28 day pain flare and was really debilitated due to the severity of the pain. I scheduled surgery during that time, but had to allow time for my parents to get from Maine to Florida for me to actually have the surgery. My pain cleared up, I returned to work and then counted down the days until my surgery . . . knowing that I was going in doing well and would come out disabled.

    It's a hard thing, Chuck.

    Peace and blessings during your recovery!
  • I wrote you a nice Loooooong reply and my connection went wonky and I lost it! I have had almost a mirrored experience regarding the hospital and pain management there. I woke up screaming and thrashing. Within a matter of just a few hours they had pumped me full of 6 different pain meds intraveineously. Nothing worked, and I mean nothing. Finally after almost 5 hours in recovery I told them to let me see my family. I am feeling much better now though although I am having some nerve pain in my hip/buttock/thigh that I hope will go away soon. I hope that you recovery nicely and that it is smooth sailing from here!

    One Love,

    Stphanie
  • I just wanted to say hang in their. I have not had the surgery you have had because I am not ready even if I found a Dr. to so call fix me. I know the days are more darker than lighter sometimes, but think of the outcome after you break out of the pain you lived in. I wish you so much luck and it is good to vent here. Blessing to you. :H
  • Hi Chuck, hang in there! This is definitely a long haul surgery. I, like you, was managing to function day to day, so was a hard decision to go forward, but with increasing flare ups and confirmed instability, I went for it. I am glad I did so far. I am back to work for a week and a half and doing well. I had posterior fusion, although my NS prefers anterior, I wasn't a candidate due to gross instability of L4. Good-luck to you. This is a great group you have found here on SH. See ya round, >:D< Cali-Sue
  • caityc said:
    I am so sorry you are suffering so. I have not had my surgery yet. But I'm also a L5 S1 person. I had a microd in January for a 11 milimeter herniation which didn't work, so now it's fusion for me.
    I'm sorry I can't share my personal experience with you yet, but you will find several people on here who can.
    Just try and take it one day at a time, and know in time it will get better.

    God Bless,

    Caity
    Hey Caity!

    Is that pronounced the same way as "Katie?" Cool spelling!

    I am sure you know this, but make sure you have exhausted all options before doing this surgery. Although my story sounds like a typical back surgery horror story--I do feel like I may be getting better. If I had just been prepared by the doctor that I may possibly be in for extreme pain, I would have fared better. My biggest fear was that maybe it didn't work--and when you are all drugged up, everything is amplified. God bless you too, and I hope your surgery goes well. Hopefully you will be one of those people who wakes up after surgery and doesn't feel any pain--I still don't get how that is possible--but obviously it is!!

    Chuck
  • Sparky123 said:
    One thing I'm glad about my doctor is he has been totally honest with me. He said the first 2 weeks are going to be tough, then i should start to feel a little better day by day. All I'm hoping for now is the pain from the surgery isn't as bad as my back pain now. One weird thing that happened to me yesterday is I met a new neighbor who had the same surgery I'm having and he said when he woke up from the surgery, he knew instantly that the injury back pain was gone. I guess that gave me a little jolt of confidence.

    Good luck with your recovery!

    Mark
    Hey Mark!

    I just don't get how someone could have this surgery and wake up with no pain. I've heard the same thing you have--although not directly from a patient. The only way this seems possible is if the patient wasn't previously on pain pills and maybe the pain pills given after surgery were enough to mask the pain. Who knows. When you think about the surgery--how could one NOT have post-surgery pain? In my case, the doctor placed four screws in my spine--I would think those would be pain generators for a while. He messed with the nerve--from what I understand, you TOUCH a nerve and it will take a while to heal, but if you decompress it, it is going to take months to heal. Everything gets swollen up in there--it would have to hurt. From what I've read online, it seems the first few weeks are killer and then it should resolve at 4-6 months, but then again, everyone is different. Back pain really is tough. Good luck with your surgery,

    Chuck
  • Joy said:
    God bless you, you sweet boy! I had almost the same surgery back in June. Recovery is a long, long road for some of us. You should see an improvement in your pain at about the 4 month mark, at least it was for me. I don't have any of the pre-surgery pain...just a heaviness feeling in my back. I'm almost 65 and a smoker, so I know you will heal faster than I do! Wish I was there to give you big hugs! Hang in there, big guy, you WILL feel better soon!

    I agree with you about folks being on high levels of meds pre-surgery. The body builds up a tolerance and it takes so much more to get any relief. I'm only taking Vicodin maybe 3 times a week now. The nerve pain is the last to go...and it takes its sweet time leaving!

    As many will tell you, walk as much as you can...it promotes good blood flow to the area and helps so much with the healing.

    Take care and let us know how you are doing.
    Joy,
    Thank you so much for your kind and loving note. It REALLY helps to hear similar stories--it gives me hope that all of this is normal and perhaps I will be healed, Lord willing. Today was not bad. I actually went outside and walked a mile (it has been cold here so I've been walking in doors). I was in pretty good shape before the surgery--at times, I would walk 5-7 miles a day with no problem. So...I could walk more--I just don't want to push it. I read somewhere that we should be working towards 2 hours of walking a day. Of course, my doctor is not much help in this area--he has a very loose mentality when it comes to rehab--"walk as much as possible and see you in 6 weeks." Thanks again Joy--God bless you,

    Chuck
  • I should have said "No injury pain", they had pain from the surgery, for about 3 or 4 weeks, but the original pain(the reason for the surgery) was gone.
  • tready said:
    hi ya my god that took some reading lol
    well now im propa shiting my self iv got to have done what you have had done and on the same place i even get that which you call catching your back. omg thanks sounds totally brutal.i wont sleep tonight lol good look with recovery ill post my story when i have it hope its not like yours horror lol latters tready
    Hey Tready!

    Yes, I know it was LONG. Maybe it was the drugs :) I wish I could tell you, "it's no big deal...go for it...you'll be fine." But I can't say that in good faith. This surgery is risky and you just don't know how you will do. One doctor told me "you need to look yourself in the mirror and ask yourself if you have done EVERYTHING you know how to do to either adjust your lifestyle or live with the pain before you commit to this surgery." It's true. I did everything I knew how to do--I waited it out for 6 years--it wasn't going away--it was time for a change. One of the negatives of the surgery is that "it changes the mechanics of your back forever." Well, in my case I thought, "maybe that isn't a bad idea to make a change in my back!" Go slow...be cautious...once you do it there is no turning back--and then you just have to move forward. I am hopeful today--so...we'll see...

    Chuck
  • meydey321 said:
    It's still quite early in your recovery, and it will take months to get better. Your progress will initially be judged at 12 weeks to see how far you've come. Some people with success stories were off the pain pills by then, or didn't need them as much. I'm basing this on what I have read here, but remember everyone is different. I know you have a good chance because you were physically fit before, and unfortunately I was deconditioned by the time I first herniated L4-5 and L5-S1. I had a discectomy and it did nothing. Last June I had a 2 level fusion with hardware and laminectomy and I am still struggling with the pain. I have severe DDD, among other problems in the lumbar spine which makes things difficult and have to take fentanyl, norco, muscle relaxers, neurontin, cymbalta, and motrin.
    Like I said, it's going to take time to fully recover and flare ups are common. Always let your doctor know what's going on and call if the pain worsens. I hope nothing but the best for you, and wish you a successful recovery.
    Hey there, Meydey:

    My doctor told me that it was ashame I was having so much pain for so many years before surgery because other then L5/S1 my back "looks great." That was good to hear. It sounds like you have other challenging issues in your back. No one knows the pain unless they have gone through it. To go through this surgery and then to still have pain a year later has got to be very difficult. I hope things continue to resolve for you. It's hard. Thank you for giving me some perspective--you are right, it is so early for me--I have hope that it may work out yet--we'll see. God bless you,

    Chuck
  • SoftEclipse said:
    . . . for your post. I read it all and the thing that struck a cord in me was your statement about going into the hospital and allowing somebody to disable you. Yup -- been there! Before me surgery, I had suffered through a 28 day pain flare and was really debilitated due to the severity of the pain. I scheduled surgery during that time, but had to allow time for my parents to get from Maine to Florida for me to actually have the surgery. My pain cleared up, I returned to work and then counted down the days until my surgery . . . knowing that I was going in doing well and would come out disabled.

    It's a hard thing, Chuck.

    Peace and blessings during your recovery!
    Hey there SoftE,

    The morning of my surgery was VERY strange. That is the challenge of this surgery--it seems most people have to get worse before they get better. The days before my surgery, I was out playing ball with my son--now, I would hurt afterwards and I was taking Oxycontin to get through the day--but at least I could still throw the ball to him. When you go into surgery, you are being disabled for at least a couple of weeks--maybe more.

    It sounds as though you have had quite a journey. We just have to keep pressing forward.

    Chuck
  • downinmyheart said:
    I wrote you a nice Loooooong reply and my connection went wonky and I lost it! I have had almost a mirrored experience regarding the hospital and pain management there. I woke up screaming and thrashing. Within a matter of just a few hours they had pumped me full of 6 different pain meds intraveineously. Nothing worked, and I mean nothing. Finally after almost 5 hours in recovery I told them to let me see my family. I am feeling much better now though although I am having some nerve pain in my hip/buttock/thigh that I hope will go away soon. I hope that you recovery nicely and that it is smooth sailing from here!

    One Love,

    Stphanie
    Hey there Stph:

    I had a strange experience--when I first woke up in recovery--I think my mind reset to when I woke up four years ago in recovery from my micro-disc surgery. It was strange. At my first surgery, one of the nurses was a friend of mine. Before the surgery, her and I are talking--I'm being all polite and what not. Well...after the surgery...when I woke up...I was in soooo much pain...and I don't wake up easily from surgery...and I started saying, "where is Tracy (my friend's name)? She is sooooo pretty...I need Tracy...please get Tracy for me...she's soooo pretty...please...etc." How embarrassing. Actually, it wasn't too big of a deal :) I saw her a month later and asked if she was in the recovery room---because I later remembered my words. She just smiled and said, "Yep..it's OK." Well....at the fusion surgery...when I woke up...I started asking for Tracy again. Same thing--how pretty she is, I need her. Strange.

    Chuck
  • ellin said:
    I just wanted to say hang in their. I have not had the surgery you have had because I am not ready even if I found a Dr. to so call fix me. I know the days are more darker than lighter sometimes, but think of the outcome after you break out of the pain you lived in. I wish you so much luck and it is good to vent here. Blessing to you. :H
    Hey Ellin,

    Thank you so much--I have found the night time to be the hardest. I am very hopeful that this surgery worked--I kind of have to be hopeful at this stage, right??!! :) Thanks for letting me vent and caring enough to write a nice note.

    Chuck
  • Cali-Sue said:
    Hi Chuck, hang in there! This is definitely a long haul surgery. I, like you, was managing to function day to day, so was a hard decision to go forward, but with increasing flare ups and confirmed instability, I went for it. I am glad I did so far. I am back to work for a week and a half and doing well. I had posterior fusion, although my NS prefers anterior, I wasn't a candidate due to gross instability of L4. Good-luck to you. This is a great group you have found here on SH. See ya round, >:D< Cali-Sue
    Cali-Sue,

    Thank you so much! Thanks for the Bible verse too. I know not everyone has the same faith--but I have found great comfort in the Scriptures through this whole process. It has been quite the journey. God bless you,

    Chuck
  • Sparky123 said:
    I should have said "No injury pain", they had pain from the surgery, for about 3 or 4 weeks, but the original pain(the reason for the surgery) was gone.
    Hey Sparky--

    I understand, no worries at all...

    the PA was trying to tell me that it was quite possible that my original pain is indeed gone, but has been replaced by this pain of unspeakable magnitude (just kidding!) In my case, I feel like my original pain has simply been amplified--but I could be wrong. I do feel that the 3 week marker (which was yesterday for me) has been a good one. talk soon,

    Chuck
  • Copy from other thread:

    Pain getting worse 4 weeks post-fusion

    Hello Everyone,

    I am 4 weeks post ALIF. I felt like I was doing better last week. The past few days I feel like I am back to square one. I can barely move my back without feeling like something is going to pop. Also, I have had constipation issues. Let me ask a question--how is it possible to keep the fusion hardware in tact when you are basically giving birth to a baby every day whenever you sit on the toilet? I'm not trying to be gross (or minimize childbirth--I am sure it is much worse then severe constipation)--but I am concerned that I may have done some damage with all the pushing through the constipation. I'm not talking little pushes--I'm talking about using every muscle in my body to get it out. Will broken screws and such show on a simple X-Ray? I have an appt. next week and they will X-Ray me--but I'm starting to wonder about this pain--it just feels that the back is unstable and has gotten worse. I can't live like this the rest of my life. I saw one guy on here who is on Oxycontin 80mg 2 times a day plus break through pain meds and he had the same operation I did (maybe it was worse I don't know). Maybe my meds aren't strong enough--I'm "only" on Oxy 20 mg twice a day and baby Dilaudid pills. Should I try to become even more of a drug addict and up the pain pills? This is no win situation. I am usually a positive person--but I relate so well to so many others on this board who find themselves in tears all the time, feeling sorry for yourself, struggling not to always talk about your pain, worrying too much. Any of the rest of you have no zero tolerance for noise? That doesn't help when I'm trying to be a loving father of four.

    My doc didn't use a brace--I think that was a huge mistake--I have bent too much--I know it.

    Why would the pain get so much worse over the past few days? I did start walking more then I had been--when I walk I feel pretty good--but then right after it is hard. All the doc will say is that I had major surgery, I'm healing, etc. Maybe he's right. This is a challenge.

    Chuck


    _____________
  • Pulmonary Emobli at 7 Weeks (from another thread)

    Very Bad Weekend

    Well, I thought I would give up update because I think my experience of the past four days is an important factor for people to consider--for those who are having the surgery, those in the early stages of recovery, and those considering the surgery. I've also decided today that I am going to stay on this site for years to come regardless of whether or not my pain goes away. I have been so encouraged and blessed by the recent thread of success stories. I really think I am going to recover and when I do, I want to be here for others who are facing the same nightmare I did. I am a pastor and have walked through painful situations with so many different people, but until you are the one sitting in the hospital bed or facing daily chronic pain, you just really don't have a clue. I have also faced the loss of loved ones--my brother was killed when he was 16 and I have lost many others who were too young to die. This may sound like a stretch, but I now say that facing this kind of pain with the prospect that it may never get better is not the same as losing a loved one, but is almost as difficult. I've experienced both, so I know.

    So I had the anterior fusion L5/S1, on Nov. 11. I was supposed to be a "slam-dunk" case--the rest of my back is great, I am young, non-smoker, in great shape, no nerve damage, just constant persistent back pain that was interferring with my lifestyle. I was on too many pain meds--still not able to do the things I wanted to do.

    Recovery has been hard for me, but I felt like I was hitting my stride at week 6. I was back doing some things at church (I run a staff at a mega church and lead worship). December 24 is the height of the church year, so that was my target date back, very part-time. I came back and we had an awesome 12/24 service--we did Trans Siberian Orchestra's Carol of the Bells--we were rockin--I was rockin. I was walking A LOT.

    About 2 weeks ago, I started to have pain in my left calf. Some of you may already know where this is going. I thought it was part of the recovery process because all of my tighter muscle groups have reacted poorly to the surgery. My hamstrings are extremely tight (comes from sitting at the piano for hours), so they rebelled at week 2. I just figured my calf was now doing the same. I stretched it, kept walking, all of this in the middle of coming back during Christmas.

    Well, the pain got worse and worse. It would feel like a sudden charlie horse only worse and last for 10 seconds. Eventually, it felt like the calf was going to explode when I would have these episodes. This was a level 12 pain just for 10 seconds or so that would knock me off my feet. This went on for 10 days. Finally, I called the surgeon. They told me to go to the ER--this was 12/26.

    I went in, and we had to endure the usual ER experience--so much hopelessness all around us--especially right after Christmas. People hurling like crazy. At one point, I told my wife, "let's go, I'm not waiting any longer...it's fine." We stayed and they scanned my leg for blood clots. Well, they found them--in the left calf.

    So...the doctor came in and said about 1/2 the doctors now days do not treat blood clots in the calf unless they are above the knee. They just let it run it's course. However, my wife then told the doc about my shortness of breath episodes. There have been several times during my recovery that I have had to "take a knee" or I would have passed out. Was told this was part of the recovery--body is tired from the surgery, etc. However, I have also had shortness of breath issues and slight chest pains for years. So, they did a cat scan of the lungs. A couple of hours later, she came back in the room and told me I had bi-lateral multiple pulmonary embolisms (clots in the lungs that had moved through the heart).

    She said I would be admitted and they would figure out what to do from there. I was admitted into a private room. A good friend of mine is one of the nurse managers at the hospital and when she heard I was in, she changed the room assignment while I was being transported from a shared room to a private room in the brand-spanking-new wing of the hospital. That was a blessing.

    My primary care doctor started me on Lovenox shots. You give these to yourself in your stomach twice a day. He also started me on Cumidin. They put me on a heart monitor and kept me there until 12/29. One thing that still makes me wonder is that the nurse who did the initial scan of my calf was called back in to do another scan of my whole leg as I was worried the clot had moved up. She told me she had followed my chart and was "shocked" to see I had PE's. She said my clot was in such a non-consequential area of the calf, that she had rarely, if ever, seen a clot move from that area of the calf (or the calf itself) to the lungs. She didn't have any answers, but I have leared to listen to the "little guys" in health care who are on the front lines running these tests--they tend to know their stuff.

    I talked to many doctors and nurses. I asked about contraindications between the blood thinners and the fusion and one doc said, "the fusion will probably be fine...but...so?" His point was the blood thinning was going to come first since we are talking life and death.

    Well, my surgeon called and said I was pretty far from my surgery--7 weeks--for the clots to have been caused by the surgery--but, who knows? He said the fusion should be fine with the thinners. He said they have to put people on thinners all the time post-surgery if they develop clots during the actual surgery. For some surgeries, they put you on thinners ahead of time or during the surgery to prevent the clots.

    The time in the hospital was VERY painful for my back. The hospital bed was a problem, lack of sleep. Also, on Saturday, I had a very bad bout of depression. I could not get control of myself. We have all gone through so much, but then to have this happen and to feel like it was a major set back was just over the top. I also thought about my four young children and wife--the life that I love so much--and realized I could have been gone--and perhaps I am going to be gone soon due to these clots or who knows what else--what will my family do? On the other hand, I knew that staying on this earth meant continued back pain, pain meds, and now these blood thinners that I am sure are bad for me, and again, what will my family do with me in this lame condition? I was very down, but collected myself by Sunday.

    My surgeon and the PA have assured me that this should not interfere with the fusion. I am home now, and giving myself the shots twice a day. I also now have a standing order for blood tests every Wednesday so they can adjust the prescription levels in the Cumidin. They said I will be on this stuff for 6 months and maybe the rest of my life if the tests come back that I have a disorder.

    I will tell you this--back in the summer, well before my fusion--I went to the local medical emergency center with pain in the same calf. It was the same kind of pain--although not nearly as severe, but it was enough for me to go in. They looked at it and said it was nothing. They didn't scan it. If they had scanned it they would have found the start of this blood clot--there is no doubt in my mind. Then they could have put me on blood thinners, I would not have had the PE's, and I would have timed the surgery with this in mind. You have to be persistent with health care--these people are wonderful--but they are human.

    Many people have asked me since the surgery if I would do it again if I could go back (why do we trouble ourselves with these types of inane questions??) I have said that even with the severe recovery pain, things were looking up, and I was glad the implant was in, and I, with great fear and trepidation, if given the opportunity would still have gone through with the surgery, before this weekend. Well, this past weekend, I began to verbalize that the surgery was the biggest mistake of my life. I was in so much back pain--probably from the stress, not being at home, the beds in the hospital, and no sleep. Now I am home and my back pain is basically back to what it was the days before all this happened--so I am thankful. Perhaps the 3-4 days of being immmobilized was good for the back long term, since I had been doing so much. So, I am back on the road to recovery, ready to start walking again.

    So--don't ignore the blood clot issue, pain in your calf, insist on a scan, and perhaps insist on the CT of the lungs even if they say it doesn't happen--it DOES happen--it happened to me.

    We can do it.

    Chuck


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    255 reads Print This Page quote

    Posted on: Tue, 12/30/2008 - 12:44 #1 Lakeside


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    Oh Chuck! Thank you for posting all this, in your dibilitated condition, with all you have on your mind & coping with everything going on in your body...I will keep you in my daily prayers (4th generation Lutheran here) and hope that you continue to get better, in every way.

    Thank you again for sharing this. Blessings to you today & please keep us posted when you feel up to it

    ~Lakeside


    _____________


    Nov.'06 Lammy @L4/L5 for benign lumbar cyst/mass
    Dec.'06 Re-op & another lammy for post-surg dural leak, leaving nerve damage, instability, spondy,sciatica & neuropathy r. leg/foot,epidural nerve root compression & DDD @ L4/L5
    Jan. '08 PLIF w/autograft from iliac crest, 3rd lammy, a discetomy w/ cages & pedicle screws w/ instrumentation @ L4/L5. At 1 year now, I am fusing, per NS & x-rays. Pain continues, but hey, I can WALK! Hoping for the best!



    reply Flag as offensive quote Posted on: Wed, 12/31/2008 - 16:50 #2 HopeforChuck



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    Lakeside wrote:
    Oh Chuck! Thank you for posting all this, in your dibilitated condition, with all you have on your mind & coping with everything going on in your body...I will keep you in my daily prayers (4th generation Lutheran here) and hope that you continue to get better, in every way.

    Thank you again for sharing this. Blessings to you today & please keep us posted when you feel up to it

    ~Lakeside


    Thank you so much for your prayers. I have hope for a full recovery--I have to stay positive. Happy New Year!

    Chuck


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    edit reply quote Posted on: Tue, 12/30/2008 - 14:04 #3 scinmyheart



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    Add buddyHoly Mackeral!

    Thank God (and I do mean that literally) you got to the ER in time...who knows what a few more days or maybe even hours would have resulted in...I'm glad to hear that you're on the road to recovery, and gopefully you won't have to take Coumadin for life...that's such awful stuff

    take care Chuck and hang in there!


    _____________


    If you actually think that I am a medical expert, then we're all in trouble.



    reply Flag as offensive quote Posted on: Wed, 12/31/2008 - 16:54 #4 HopeforChuck



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    OnlineFirst Blood Test


    scinmyheart wrote:
    Thank God (and I do mean that literally) you got to the ER in time...who knows what a few more days or maybe even hours would have resulted in...I'm glad to hear that you're on the road to recovery, and gopefully you won't have to take Coumadin for life...that's such awful stuff

    take care Chuck and hang in there!


    Well, I went for my first standing order weekly blood test today. They have to check the blood levels and adjust the Coumadin weekly. She told me if I don't hear back from my doc within 48 hours....well, that it is life and death...she felt I should have a hematologist overseeing this...but they said no in the hospital...that the PCP does it. The woman who took my blood said, "are you on Coumadin??? You are so young and healthy!!" I told her my story and she was shocked. So far, I don't feel too bad on the Coumadin, but the list of side effects is scary. I am also on pain meds--not too too much--but enough to qualify as a potential problem. Thanks for your nice note.

    Chuck


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    edit reply quote Posted on: Tue, 12/30/2008 - 14:11 #5 kathyy



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    Add buddySometimes only prayer gets you through

    You've been through so much and it hardly seems fair. But then, as a Christian, you know that bad things often happen to good people. I am nearly 6 weeks post op - PLIF/decompression/synovial cyst removal. Am 56 so I'm not such a "perfect" candidate, esp. since I had such severe stenosis and accompanying symptoms for several months before surgery. Got thru my 6 hour surgery. Then on Christmas day, just when I was sorta beginning to feel more myself, my dear husband's brother died and my daughter had a miscarriage. I can't even travel with my husband for his brother's funeral! Not the same type of suffering that you have had to endure. But I know that it's true - God never gives us more than we can handle. And He always gives us a way to handle it. Thanks for your courageous post and at the risk of sounding trite -keep the faith. My favorite "inspirational saying" is as follows and it has gotten me through so many dark days -

    With God's strength behind you, His love within you and His arms underneath you, you are more than sufficient for the days ahead." God bless. Kathy in Atlanta


    _____________


    Kathy in Atlanta - 11/18 PLIF,decompression,removal of synovial cyst. No other spine surgery. Hope it's the last! 56 years young. My glass is always half full! Cheers.



    reply Flag as offensive quote Posted on: Wed, 12/31/2008 - 16:49 #6 HopeforChuck



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    kathyy wrote:
    You've been through so much and it hardly seems fair. But then, as a Christian, you know that bad things often happen to good people. I am nearly 6 weeks post op - PLIF/decompression/synovial cyst removal. Am 56 so I'm not such a "perfect" candidate, esp. since I had such severe stenosis and accompanying symptoms for several months before surgery. Got thru my 6 hour surgery. Then on Christmas day, just when I was sorta beginning to feel more myself, my dear husband's brother died and my daughter had a miscarriage. I can't even travel with my husband for his brother's funeral! Not the same type of suffering that you have had to endure. But I know that it's true - God never gives us more than we can handle. And He always gives us a way to handle it. Thanks for your courageous post and at the risk of sounding trite -keep the faith. My favorite "inspirational saying" is as follows and it has gotten me through so many dark days -

    With God's strength behind you, His love within you and His arms underneath you, you are more than sufficient for the days ahead." God bless. Kathy in Atlanta


    Kathy,

    I am so sorry to hear about your brother in law and your daughter's baby. Life can be so hard at times. The room I had while in the hospital had a wall window that overlooked the landing strip of the ER. All day and especially all night the helicopters are flying in and out, rushing people on stretchers into the ER. The ambulances are coming in and out. At one point, the line to get into the ER was all the way outside. It was sobering. I know we are all supposed to be happy on New Year's--and I am in some ways--but this life is so fleeting. For me, I just have to continue to have hope. I hope things get better for you quickly. Please keep in touch,

    Chuck


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    edit reply quote Posted on: Tue, 12/30/2008 - 14:16 #7 meydey321


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    I'm sorry all of this happened to you, especially since you had a fusion prior to this. I can't imagine what you're going through, but I'm glad and relieved to hear from you. Take it easy and thanks for letting us know about this scary experience.


    _____________


    History: L4-5 central disc herniation, left lateral HNP L5-S1, L4-5 recurrent post op herniation, L4-5 Grade II retrolisthesis, severe DDD, chronic degenerative endplate changes, facet arthropathy, OA, mild DDD in cervical & thoracic spine
    Back Surgeries: Microdiscectomy/ laminectomy,
    2 level TLIF/Laminectomy w/ instrumentation
    Meds: Fentanyl 75 mcg, Norco 10/325 mg, Cymbalta, Zanaflex, motrin.

    Spineys Rule!



    reply Flag as offensive quote Posted on: Wed, 12/31/2008 - 16:56 #8 HopeforChuck



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    meydey321 wrote:
    I'm sorry all of this happened to you, especially since you had a fusion prior to this. I can't imagine what you're going through, but I'm glad and relieved to hear from you. Take it easy and thanks for letting us know about this scary experience.

    MeyDey,
    I'm not going to softpedal it--you are right that this was scary. I have shed many tears the past few days. Especially the morning after the diagnosis. Thanks for your support.
    Chuck


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    edit reply quote Posted on: Tue, 12/30/2008 - 18:20 #9 SoftEclipse



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    Add buddyYour post . . .

    . . . moved me to tears. Feel so helpless that I can't do anything -- but offer my love and prayers for your continued safety.


    _____________


    2.5 year history of intermittent nerve pain flares due to 2 herniated discs at c5/6 and c6/7, with nerve involvement at c6/7 and descending c/8.

    11/17/2008 -- ACDF at c5/6 and c6/7 with donor bone and titanium plates and screws.



    reply Flag as offensive quote Posted on: Wed, 12/31/2008 - 16:57 #10 HopeforChuck



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    SoftEclipse wrote:
    . . . moved me to tears. Feel so helpless that I can't do anything -- but offer my love and prayers for your continued safety.

    In a strange kind of way, we are all in this together. Thank you for feeling my pain. I'm laughing and enjoying life today. I just can't think of the "what ifs." Hey, isn't that a song by ColdPlay? Yep, it is.

    Chuck


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    edit reply quote Posted on: Tue, 12/30/2008 - 18:37 #11 Lo



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    I was just wondering who said you could have a bad weekend? Hmmmm....

    Crazy stuff. Blood clots scare me. I should say, though, that I used to be quite the hypochondriac. I think I was the only one asked my pediatrician to test me for Leukemia, and to scan my head for a brain tumor, and to check my neck for skin cancer. So it comes with the territory. I'm just a weirdo. It's good that your wife spoke up. Who knows what could have happened otherwise. If I were your wife I'd request chocolate and diamonds as a reward. However, I'm 22 and far from married, so we'll see how I feel when I reach that point Maybe I'll be over chocolate and diamonds. Or is that an eternal thing? Is there a female that doesn't like those things?

    I am loopy lately so I apologize if my silliness sucks. I can't help it. I think I'm PMSing because another thread yesterday made me crave brownies... What the heck.

    I think in situations like this it just makes you realize that no matter what we say or do, God's plan will prevail. He'll take you when he's ready for ya. And not a day sooner!!! There's obviously a reason for this setback... Will be nice when you get to see the positive aspects of it...!

    I gotta keep quiet for the next few days, I swear... It's like... Endorphin overload! Must be all the sugar & fast food. Makes me happy. Anyway, I am just too smiley and joyful lately, I'm sure it's gotta make some people want to wring my neck. I'm sure eventually I'll be back to my cynical self, though.

    I hope things start looking up from here. You seem pretty self aware and I think you got this. God will never give us more then we can handle! So he must think you're pretty strong I'm basically in awe of the whole sticking needles in your stomach yourself thing. That's like, hardcore. Major props for that! (Okay, I know. ENOUGH ALREADY, I'm shutting up now.)

    *HUGS*


    _____________


    22. Single mommy of an Autistic 5 year old. Trusting God's plan for me.

    Back pain for as long as I can remember.
    Neck pain/arm pain on and off for the past 5 or 6 years.
    Severe Sciatica in right leg.
    No injuries whatsoever.
    Conservative treatment: Physical therapy, medication, Chiro, Injections, Aquatic physical therapy, TENS.
    Out of work since: June 2007.

    Dx: Broad based herniation at L4-L5, bone spurs in the Cervical vertebrae, irregular curve in the Cervical area, as well as stenosis, small herniation at T11-T12.
    May 1, 2008~ Hemilaminectomy, Microdisectomy.

    Dx: DDD @ L4-L5, right lateral recess stenosis.
    Reherniated disc September 2008, right leg numbness, near foot drop.
    September 26, 2008~ Scar tissue removal, Radical Discectomy, 360 degree fusion (anterior/posterior) @ L4-L5.

    Starting P.T. soon

    Meds: Wellbutrin SR, Percocet, Valium.

    ~CT scan looks really good, fusing is going well. The new pain is the right SI joint. Fun.



    reply Flag as offensive quote Posted on: Wed, 12/31/2008 - 17:13 #12 HopeforChuck



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    OnlineLo


    Lo wrote:
    I was just wondering who said you could have a bad weekend? Hmmmm....

    Crazy stuff. Blood clots scare me. I should say, though, that I used to be quite the hypochondriac. I think I was the only one asked my pediatrician to test me for Leukemia, and to scan my head for a brain tumor, and to check my neck for skin cancer. So it comes with the territory. I'm just a weirdo. It's good that your wife spoke up. Who knows what could have happened otherwise. If I were your wife I'd request chocolate and diamonds as a reward. However, I'm 22 and far from married, so we'll see how I feel when I reach that point Maybe I'll be over chocolate and diamonds. Or is that an eternal thing? Is there a female that doesn't like those things?

    I am loopy lately so I apologize if my silliness sucks. I can't help it. I think I'm PMSing because another thread yesterday made me crave brownies... What the heck.

    I think in situations like this it just makes you realize that no matter what we say or do, God's plan will prevail. He'll take you when he's ready for ya. And not a day sooner!!! There's obviously a reason for this setback... Will be nice when you get to see the positive aspects of it...!

    I gotta keep quiet for the next few days, I swear... It's like... Endorphin overload! Must be all the sugar & fast food. Makes me happy. Anyway, I am just too smiley and joyful lately, I'm sure it's gotta make some people want to wring my neck. I'm sure eventually I'll be back to my cynical self, though.

    I hope things start looking up from here. You seem pretty self aware and I think you got this. God will never give us more then we can handle! So he must think you're pretty strong I'm basically in awe of the whole sticking needles in your stomach yourself thing. That's like, hardcore. Major props for that! (Okay, I know. ENOUGH ALREADY, I'm shutting up now.)

    *HUGS*


    Lo,

    You are sweet. I wish you could pass some endorphins my way!

    Chuck


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    edit reply quote Posted on: Tue, 12/30/2008 - 19:01 #13 charry



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    I'm glad you're allright. That's a scary experience and you got through it with persistence and tenacity. I know it's difficult to go through all that but you're more than a conquerer and what He promised he will do it! God bless. Take care. Charry


    _____________


    L5-S1 herniated disc with tear with disc material in contact with S-1 nerve. 3 Epidurals. Facet joint injections and last epidural on Dec. 6. DDD C5-C7 osteoarthritis hyperextension of cervical spine. Off work one year due to pain. ER-RN
    MS Contin,Flexeril,celebrex,Lyrica,wellbutrin,lasix,amitriptyli
    ne,Oxazepam
    http://www.livestrong.com/article/14700-self-affirmations/



    reply Flag as offensive quote Posted on: Wed, 12/31/2008 - 17:15 #14 HopeforChuck



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    Onlinethank you


    charry wrote:
    I'm glad you're allright. That's a scary experience and you got through it with persistence and tenacity. I know it's difficult to go through all that but you're more than a conquerer and what He promised he will do it! God bless. Take care. Charry

    Charry,

    Thank you for the Words of hope. I need them right now.

    Chuck


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    edit reply quote Posted on: Tue, 12/30/2008 - 20:48 #15 caityc



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    Add buddyWow Chuck!

    I am so sorry! Blood clots are definitely scary! I'm glad your pain level has gone down somewhat. You are on the right path it seems. I know you have had such a hard time with your recovery. I'm just so sorry there was another loop thrown in.

    Take care. This too shall pass.....

    Caity


    _____________


    34 year old
    Microdiskectomy 1/10/2008
    Spinal fusion/artificial disk surgery date tbd....
    Completely collapsed disk at L5 S1
    Going in or first Epidural Injection on January 5th.



    reply Flag as offensive quote Posted on: Wed, 12/31/2008 - 17:17 #16 HopeforChuck



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    caityc wrote:
    I am so sorry! Blood clots are definitely scary! I'm glad your pain level has gone down somewhat. You are on the right path it seems. I know you have had such a hard time with your recovery. I'm just so sorry there was another loop thrown in.

    Take care. This too shall pass.....

    Caity


    I have another friend who keeps saying, "this too shall pass." Life is pretty amazing.

    Chuck


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    edit reply quote Posted on: Tue, 12/30/2008 - 23:45 #17 griff



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    Did you ever stop to wonder that, had it not been for the surgery, that you would have ignored the pain in your calf for just a little longer and been in bigger trouble? Sometimes God DOES work in mysterious ways.

    I'm glad that you're on the right path now and hope that your pain continues to subside. I wonder how they didn't catch any of this in your pre-op work-up though.

    Keep us posted on your health, please. We'll be pulling for you.

    Griff


    _____________


    Lots of stuff done on my neck and more on it's way.
    No use dwelling on it, right?



    reply Flag as offensive quote Posted on: Wed, 12/31/2008 - 17:19 #18 HopeforChuck



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    griff wrote:
    Did you ever stop to wonder that, had it not been for the surgery, that you would have ignored the pain in your calf for just a little longer and been in bigger trouble? Sometimes God DOES work in mysterious ways.

    I'm glad that you're on the right path now and hope that your pain continues to subside. I wonder how they didn't catch any of this in your pre-op work-up though.

    Keep us posted on your health, please. We'll be pulling for you.

    Griff


    Griff,

    I've considered so many what if scanarios...you are right, we just have to stay positive and assume these things happen for a reason. I do know if they had properly diagnosed me back in the summer, it would have changed the timing of this whole thing and I would have handled the blood issue first. But, I can't go there. Thanks again,

    Chuck


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    edit reply quote Posted on: Wed, 12/31/2008 - 08:12 #19 Joy


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    Thank you so much for posting about your experience. It serves to remind us that God is watching over us always. Even though we go through very trying times which are not removed, He is there in the midst WITH us! Thank you for that reminder. My faith has been getting a little thin here lately, and you gave me a boost in that regard.

    Having gone through so much, you will be an even better pastor. You can identify so much with others who are having bad things happen to them. You will be even more compassionate to those that are hurting.

    May our Father richly bless you and your family this coming year!


    _____________


    DDD, spinal stenosis, Spondylolisthesis, herniation at L4/L5
    2 spinal cysts pushing against nerve roots

    6/26/08 TLIF fusion L4-L5 with instrumentation,Laminectomy L4-S1, facetectomy, foraminotomy, autograft



    reply Flag as offensive quote Posted on: Wed, 12/31/2008 - 17:25 #20 HopeforChuck



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    Joy wrote:
    Thank you so much for posting about your experience. It serves to remind us that God is watching over us always. Even though we go through very trying times which are not removed, He is there in the midst WITH us! Thank you for that reminder. My faith has been getting a little thin here lately, and you gave me a boost in that regard.

    Having gone through so much, you will be an even better pastor. You can identify so much with others who are having bad things happen to them. You will be even more compassionate to those that are hurting.

    May our Father richly bless you and your family this coming year!


    Joy,

    You are soooooo right. I have a totally new perspective now on those who suffer with chronic pain and scary health issues. I've always been empathetic--but now I know that most people put on a face, but when night falls, it can be terrifying. Before all of this happened, I had written on another thread that we all just have to life in the moment. We have eternity past and eternity future: each of those is a vast ocean of possibility, both good and bad. But then we have this moment called the present. The words I wrote above are now a past event. Right now, to be totally honest, in this present, I am doing just fine. I know I am going to hurt when I move from this spot on my bed--but that too will become a past event. Sorry...I've been developing this theology of time thing...I'm so weird.


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    edit reply quote Posted on: Wed, 12/31/2008 - 19:25 #21 Pika


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    Chuck, as I read your post and the following responses I realized I didn't know how or what to say. I just know I feel sorry for what you and your family are going through, and that I wish I could help. I also know what doesn't kill 'ya makes you stronger. Sometimes we just don't want to be stronger. I will say a prayer for you this new years eve. I also realized that people everywhere are going through so much we all need to show some patience, love and kindness to each other. Peace


    _____________


    Pika



  • Risky Subject--Here it Goes...

    I have questions about Oxycontin and the pain med routine....I know this is a touchy issue...but here it goes.

    I was on heavy duty pain meds for a couple years before having the fusion. I consider heavy duty to be Oxycontin and up. Well, I was on Oxycontin 20 mg twice a day, plus Vicodin, with no real controls in place (if I needed another I'd take another, not writing it down, no one else really knowing what I was taking with a doc more then willing to fill the prescription at will, etc).

    Since the spinal fusion--7 weeks ago--I have continued with the Oxy 20mg, plus now Dilaudid (new) for break-through at 4 mg, then up to 8 mg, a couple times a day. The past week, I have stopped the Dilaudid by weaning down, with no real issues except more pain (but then again, today, I feel the best I've felt....hmmmm).

    Now, I am on the Oxy 20mg plus Vicodin 750 for break through. I am nowhere nearly healed or even ready to say my fusion was a success. I am still in pain--both in the leg and back--but it is bearable with the meds. It has gotten better every week, besides a major set back just last week--ended up in the hospital 3 days with blood clots...long story. But I'm back towards recovery now.

    I've been told by the surgeon's PA (I have grown to trust this girl) that my case was hard because I came to them already on heavy hitters. She said that easily THE hardest part of my recovery would be coming off the pain meds (she said this a month before I had the fusion). Not because of the withdrawl, although that would be an issue. But because I would perceive pain differently for many months. I would not be producing the endorphins to fight the pain naturally--my body would cry out for the meds to fight pain that normal people would fight off without pain meds. She said there have been studies showing that those on the heavy hitters perceive pain up to 30 times more then those not on pain meds.

    So then...If it is true that I am perceiving pain 30 times greater (or even 5 times greater) then others who would have the same pain, then I need to get off the meds ASAP and pain meds are really quite the potential problem both pre and post surgery. It also makes me question whether or not the meds talked me into this whole thing. Is it REALLY true that the meds mess up your pain sensors THAT MUCH? I just can't wrap my brain around that. Here's bad Chuck talking: My pain is my pain--regardless of the pain meds I'm on--my back has been stretched apart, they have drilled into my back, messed with my nerves, so I'm going to be in pain if I don't take the pain meds. Right? OR--is it true that, as my family is telling me (who aren't on drugs), that the first few weeks off the pain meds I will perceive that I have this terrible pain, but eventually it will wane because the natural endorphins will be built back up and then start acting once again as the pain meds used to?

    Any thoughts on this? Why wouldn't those of us who are 6-8 weeks out of surgery, with a level 4-5 pain during the day and on the pain meds, just wean off, bear with it for a few weeks while it spikes to a 6-7 level while the meds go out of our system and the endorphins start coming back, and then enjoy it when it comes back down to a bearable 2-3, but without the pain meds?? Man was that a long sentence.

    Sorry guys--I'm a writer--I wrote a 400 page doctoral diss--one night I wrote 40 pages. So, I'll stop. I really want to get off these pain meds more then ever.

    Chuck


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    649 reads Print This Page quote

    Posted on: Thu, 01/01/2009 - 13:40 #1 downinmyheart



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    Is try it. That is all I know to tell you. Just try to come off of them and see how it feels. Take it down, little by little til you are off of them. If you are in extreme pain, and you can't stop it with other things like ice and breathing and tens and whathaveyou, then go back to the meds.

    I have a VERY high tolerance for medications and alcohol. Always have. I woke from my surgery screaming and thrashing in agony as I was not given enough meds during. I was given 6 intraveneous pain killers in about 3.5 hours, including ketamine, all of which were unable to bring my pain level to a tolerable place. It took two days to bring my pain down so that I could rest.

    I left the hospital on dilaudid. After a few weeks, I stopped taking it altogether. I now have percs, and I take them if I have to. Usually one or two in the late afternoon evening.

    My point, although a bit long winded, is that everyone is different. Give it a go and if it works for you to be off of them, YAYAY! If not, don't beat yourself up.

    One Love,

    Stephanie


    _____________


    "If we fall, we don't need self-recrimination or blame or anger - we need a reawakening of our intention and a willingness to recommit, to be whole-hearted once again."--Sharon Salzberg

    27yo female, pain for the last 10 years, DDD, Stenosis, Recurrent rupture at L5-S1, Herniation at L3, Annular Tear L4, Low back pain, Leg Pain, Numbness, Partial paralysis. Discectomy Sx 2000, nerve block 2001, 2005, 2008. Discogram 10/9/08. Two level (L4-S1) TLIF (transforaminal lumbar interbody fusion) completed on 11/21/08. New stuff going on after surgery that I hope will go away, burning and odd nerve sensations in right hip buttock and thigh, clicking noise in back when I move forward or back (not painful, TG!), and sciatica and numbness in left leg and foot.

    Currently taking percocet, robaxin, and gabapentin and walking as much as possible!

    www.myspace.com/dwninmyheart
    www.journeythroughthepainbody.blogspot.com







    reply Flag as offensive quote Posted on: Thu, 01/01/2009 - 13:56 #2 Terri


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    Chuck - my hubby was on much higher doses of Oxyxontin than you pre-surgery (for several years). It has been a long tough road for him but he is now down well below the pre-surgery levels and hopefully on his way to no narcotics. Each step down has been difficult until his body begins to accomodate. Each drop in oxycontin has been accompanied by a short term increase in break-through pain meds and then he slowly weans down on the break through meds. He tries to stay at each and lower oxycontin plateau for a few weeks and then he has taken a step lower again. It has been a long process (9 months since L2-L5 revision fusion)with a few set-backs but his PM doc has thought it best to tackle it slowly. Watching the process and living it as a care giver, I know it can seem impossible but stick with it and know that you will think so much more clearly once you get to lower doses or get the drugs out of your system. Best of luck. Terri


    _____________


    Looking for help for my husband. 3+ years of back pain. He used to love to walk, golf and laugh.
    1/07: L2-5 laminectomy w/ L4-5 partial diskectomy AND C5-6 ACDF
    3/31/08: revision L2-5 laminectomy & L2-5 posterior instrumented fusion w/ L4-5 TLIF



    reply Flag as offensive quote Posted on: Thu, 01/01/2009 - 14:38 #3 Ming



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    Chuck,
    My ortho said the same thing about the endorphins. He said to wean off the pain meds and gradually increase physical activity since this will naturally release the endorphines. This was working good for a couple of weeks and I was down to 2-3 vicoprofen per day as opposed to 4-6 per day. Then I fell down my steps outside and hurt my ankle, knee and of course back. I am trying to wean down again and do this all over again. I too have a high tolerance to meds, alcohol etc so it does take more than the usual to touch my pain. Lately, the vicoprofen isn't touching the pain and I've been taking up to 6 or more per day again, which means i will run out sooner than I am supposed to and pain mgmt doc said I should try oxycontin, pain patches or something else (can't remember). I am scared to death to go on something stronger but would like something longer lasting like extended release where I only have to take 1 per day but not be all doped up. I just want to be able to feel good enough pain wise to go to work without being all doped up.

    I totally know where you are coming from Chuck. I would love to wean off the meds but I don't want to hurt so bad I am stuck doing nothing again. I can't do much but I can do somethings that I wouldn't be able to do if pain was 7 or higher all the time. I am at about 4-5 all the time on meds today is 6 sometimes spiking to 7 because I over did it last night.

    Happy New Year!


    reply Flag as offensive quote Posted on: Thu, 01/01/2009 - 14:54 #4 RichT


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    Hello Chuck,

    Risky subject? No, I don't think so. In fact I'd say it is an EXCELLENT subject.

    I have not been on the "heavy hitters", just Vicodin. And no surgery at this point in time.

    Okay, my story (if you haven't read it before on another topic).

    When my lower back pain started to extend down my right leg, and I had a tingling sensation in the lower part of my leg I knew it was time to see a spinal surgeon. (Pain level about 4 not more than 5.) I did some research into spinal surgeons in my area. I saw the spinal surgeon at the top of my list. After his exam and x-rays he put me on Vicodin to at least reduce my pain short term.

    Chuck, I was on Vicodin for only two weeks and I KNEW I had to get myself off of that pain med. I was literally sleeping my days away. There was NO WAY I wanted to spend the rest of my life in that state even if the pain was somewhat less.

    It took me about 10 days to slowly get off of Vicodin, and another 2 weeks to be free of the withdrawal symptoms. Best thing I ever did. And how was the pain after I was off of Vicodin, certainly no worse than before and at least I could feel like myself again.

    For me Chuck, I'm going to stay off of pain meds as long as I can. And if someday I have surgery, and will need pain meds, then I will get myself off of those horrid pills as soon as I can. Currently ESIs keep the pain down at about 1-2.

    A side note = Chuck, there is a wonderful lady in the UK who has SEVERE, I mean REALY SEVERE back pain. Being under the NHS in the UK she can't even get to see a specialist without having to go through a review panel. She has tried so many times. So how does she cope? Her PCP just feeds her stronger and stronger pain meds. The last I heard she was on a lot of morphine, etc. Amazingly, she has still retained that fantastic sense of British humor. Oh, and don't ever refer to God as HE. She let me know early on that it is MRS. God.

    There is a SUPERB spinal surgeon in the UK not far from where the lady lives. If it wasn't for the "pond" that separates us I would have seen him months ago. He is highly respected by his peers. Would you believe the NHS won't even approve for her to at least have an appointment with MR. K. Sad Oh yes don't ever call a surgeon or other medical person "Dr. in the UK. The respected "title" is "Mr.".

    Okay enough of my rambling.

    Forty pages in one night. WOW

    Chuck, my thoughts and prayers are and will be with you. Mrs. God and I chat quite often.

    May 2009 be all that you hope it will be. Your faith will see you through this difficult time.

    RichT


    reply Flag as offensive quote Posted on: Thu, 01/01/2009 - 14:51 #5 shar51


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    Everything you said makes sense to me. Prior to my surgery I had never taken anything but an asprin or tylenol. When the surgeon looked at my MRI he could not believe it, he said I was a 9-10 on a scale of 1-10 of bad necks. I had become so use to the pain in the neck, felt like a bad crick to me. It was the arm pain that sent me to the doctor, never knew it was my neck. After surgery he told me it was far worst than the MRI showed, guess I am lucky. I have always had a high tolerence for pain, give birth twice all natural, no epidurals. After the first cervical spine surgery I really felt great, did not need any pain meds but the first few days and that was from the incision in the hip where they took bone. Now my second surgery which was a revision surgery was a different story, they sent me home with 10mg lortab and I was screaming in agony. The revision was done posterior and I had no idea that nerve pain was a whole different pain, narcotics will not touch it. That was my first real experience with any bad pain in my life and never want that feeling again. It took weeks of neurontin and finally lyrica to get a dose that eased that pain up. That will be 2 years this Feb and I still take the neurontin and probably always will.

    Sharon


    _____________


    ACDF C4-C7 Sept 06 and then revision surgery posterior Feb07...I think the surgeon got it right this time. The way I look at it, they broke my neck and put it back together. I am 1/2 inch taller now but still in pain.



    reply Flag as offensive quote Posted on: Thu, 01/01/2009 - 15:49 #6 Pika


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    Chuck, I feel you pain and agony over your ordeal. I am 6 weeks out of 360 fusion with hardwear and ADR. I was on pain meds for years prior to surgery and let me tell you it was horrible during the drug detox. I tried to lower the dosage to make stopping manageneable but that was not working so I did something dumb, cold turkey. I paid the price and was a wreck for at least a week. I am off narcotics completely as I feel great. No back pain, front pain, just minor nerve issue in the left leg/top of foot.
    There are medications to help come off narcotics but I am not sure if you could/should take them because of the Coumadin. Talk to your doctor when you are ready because rest assured, your brain will not be happy when you cut out meds too much too quick. Best Wishes to all.


    _____________


    Pika



    reply Flag as offensive quote Posted on: Thu, 01/01/2009 - 17:06 #7 haglandc



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    Something that I was fortunate enough to get, was Auricular Acupuncture. It is awesome and helped to kick the natural endorphins in as well as helped me get some sleep.

    Prior to surgery I was on 30mgs of Oxycodone an hour. 2 days prior to that, I was on Oxycontin and Oxycodone and Percocet. The doc took me off the Oxycontin and Percocet and adjusted the Oxycodone to the equivalent. Anyway, I went through UROD Ultra Rapid Opioid Detox under general anesthesia. My natural endorphins had been long gone due to the high level of opioids I'd been on for so long.

    The Acupuncture was started 2 weeks after the rapid detox and continued for several months. The natural endorphins started to kick in about a month into it. Just being able to sleep after the first two treatments, was a blessing.

    I'm not sure what your Pain Clinic has available, but I would never have been able to bounce back after all those opioids trashing my systems for so long, had it not been for the acupuncture being a part of the detox protocol.

    I also started exercising by riding a stationary bike, walking and using light weights on the machines at the gym. The combination of everything was awesome!

    "C"


    _____________


    "Everyone is entitled to be stupid, but some abuse the privilege"



    reply Flag as offensive quote Posted on: Thu, 01/01/2009 - 17:54 #8 meydey321


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    This is an excellent question and what you proposed makes sense. In my case, I'm 7.5 months out of my fusion and the pain is still rampant as ever. I was on Fentanyl before my surgery, and still continue to take it, along with the other meds listed below. I haven't made any progress with either surgeries I had, and I'm waiting to see what my diagnosis will be later on. If you are able to come off your meds and have your body produce endorphins, then I will be really happy for you. I know you have the mental fortitude to do whatever you put your mind to, and I hope you'll be able to have a complete recovery.


    _____________


    History: L4-5 central disc herniation, left lateral HNP L5-S1, L4-5 recurrent post op herniation, L4-5 Grade II retrolisthesis, severe DDD, chronic degenerative endplate changes, facet arthropathy, OA, mild DDD in cervical & thoracic spine
    Back Surgeries: Microdiscectomy/ laminectomy,
    2 level TLIF/Laminectomy w/ instrumentation
    Meds: Fentanyl 75 mcg, Norco 10/325 mg, Cymbalta, Zanaflex, motrin.

    Spineys Rule!



    reply Flag as offensive quote Posted on: Thu, 01/01/2009 - 17:57 #9 kathyy



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    Add buddygreat subject! my only concern is------

    I am doing really well 6 weeks post op. Early signs of fusion, etc. But I am 56 and am used to being on aspirin and advil for my neck, knee and shoulder pain for years (arthritis). So now, I can't take ANY of these as they will interfere with fusion. So I am down to 30 mgs of oxy a day and the oxy includes tylenol at 500 per so that would be 30 mgs oxy and 1500 mgs tylenol. I have been diligent about cutting down the oxy. Was on 70 mgs a day 6 weeks ago. My plan is to keep cutting down until I get to the point that I only medicate when I really need it. But without the use of iboprofen or aspirin, I am willing to keep oxy in my life for awhile while I fuse. I guess if I were younger and had fewer "war scars" to deal with, I might feel differently. The closest acupuncturist is 50 miles away so that isn't an option. Maybe it's my generation - (better living thru drugs) but I'm happy to reduce yet unwilling to totally leave all pain meds.

    On the same subject, can't wait to get the good ole regime of ibuprofen. Tylenol has NEVER done anything for me. I don't think it will be that hard for me to keep reducing the oxy - but I am really cautious which is why I keep cutting back.

    I'd love to hear other opinions on this subject. It is really productive!


    _____________


    Kathy in Atlanta - 11/18 PLIF,decompression,removal of synovial cyst. No other spine surgery. Hope it's the last! 56 years young. My glass is always half full! Cheers.



    reply Flag as offensive quote Posted on: Thu, 01/01/2009 - 18:45 #10 cherish22



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    suffer from permanent nerve damage, and the heavy hitters do nothing but numb my mind. Until I get the permanent SCS, though, I have no choice. As it is, I live in a recliner 23 hours a day and on a good day, my pain is a 5 out of 10, on the meds I take.

    I just went through hell in the hospital, and after what I just experienced, I WILL be getting off all meds. I was taken to the ER in severe pain and NO ONE listened to me when I told them the meds I was already on. (Oxycontin 30 mg 2 X a day and Percocet 10/325 2X a day for breakthrough, and I was at 2 a day.) From the ER, I was admitted for acute pancreatitis and only given Dilaudid. NO ONE continued my regular meds. (I found out my family physician did not have privileges at the hospital I was at, so I was assigned to a very old-school family doc who was anti-narcotics.)

    They couldn't figure out what was wrong with me, and tried to send me for tests where I had to lay still for an hour. I was beyond hysterical, begging for help, yelling that I deserved pain control, I deserve pain control. I refused the test and there are over 20 people who saw me writhing and begging and hysterical. I did not know then to yell "I'm Opioid -Tolerant". That apparently would have been a phrase that would have garnered some attention.

    Anyway, I was thrown into withdrawal, in the middle of acute pancreatitis and subsequent gallbladder removal. I am on record calling my pain clinic hysterically and my family physician hysterically for help. They told me they could not override that doctor. We finally dialed the number you see on the bulletin board that says "Code H - if any part of your care is being ignored". I had the nurse manager in my room in seconds, my blood pressure was 160/something, I was writhing and hysterical. The doctor finally showed up and said "I don't know what to do for you, you shouldn't be on all these meds, I will have to go figure something out." And for the rest of the week, they gave me potassium boluses every day. I asked one of the blood girls "what causes low potassium" and she said "Heart stress, damage". I think my heart was over-stressed during that withdrawal experienced. My 2nd hospitalization 3 days later, no more low potassium.

    Every time I saw him, he lectured me on narcotics. I repeatedly told him "That's why I'm getting the SCS, that's why I'm getting the SCS", but he didn't know what that was and didn't care. It was hell on earth. his horrible doc finally put me on a Fentanyl patch, 12.5 mcg, because he REFUSED to give my regular meds.

    Trust me, I've taken notes and am going to a lawyer.

    So, had I not been opioid tolerant, this would not have happened to me. The Dilaudid they gave me WOULD have helped my pain and probably knocked me out. But instead, it didn't do anything. I now have some sort of PTSD (post traumatic stress disorder), truly. The deep gut crying has ceased, but I'm mentally damaged at this point, I know. I'll be getting some counseling ASAP.

    Unfortunately, within 3 days of coming home, I was put back in the hospital for another 5 days (10 days out of 13). (Before I consented, I told the GI doc what happened and with that visit, he assigned an Internal Medicine doc who did nothing BUT handle my pain meds. That's all she was for. It was wonderful.) I had acute pancreatitis again, they ran all kinds of tests (Ct scans, Hida Scans, etc.) and never figured out why. I just got better with "nothing by mouth". But THAT trip, I was given my exact regular meds plus Dilaudid if I needed anything else. At that point, I was just glad to be getting some meds. I also have a very high tolerance to pain and meds as well.

    I'm sure LAWSUIT was written all over my file, because after we had dialed the Code H number, a few hours later a top hospital administrator showed up and played stupid, am I happy, etc. I told him NO, told him what happened, he took copious notes and said he was off to find out why the ER doc sent me to a room without proper pain control.

    PLEASE inform anyone that might be in any position to take you to the ER that you are opioid-tolerant. My poor husband just didn't know what to do at the time. I was begging him for my meds, for a gun, it was horrific. He was scared to give me anything because he thought they'd throw me out for taking meds behind their back. (He's one of those who 100% trusts the medical community, while I am NOT one of those people.)

    I walked out of the hospital the first visit on less meds after acute pancreatitis and gallbladder surgery than when I walked in with permanent S1 nerve damage. It was a NIGHTMARE. And I know a doctor/hospital who are getting sued. You guys honestly have no idea how close you are to hell on earth if you get put in the hospital and people don't listen to you.

    So, anyway......when I was in so much pain, we were concerned because with all my meds, WHY would I feel so much pain? One doc told me there are 2 ways to look at it: One is how I was. But the other is: He finds people in chronic pain and on major meds to feel pain WAY more than the normal person. And the doc struggles to decide what complaints of pain are clinically significant or not.

    In fact, with my 2nd hospitalization and no tests showed leakage, or stones, or anything (but blood results showed acute pancreatitis again), my body was in a major struggle - I couldn't regulate my body temp, I was cold but sweaty for days, etc. It was awful.

    My biggest wish now is for my permanent SCS on Monday (provided my blood results tomorrow are OK and my hives go away - I came home in a major hive outbreak, swelling my eyes shut, they decided I'm allergic to Benadryl. Let's just say my new middle name is TRAINWRECK. lol) Once I have the SCS, I will do whatever I have to to get off these meds so I never have to be tortured again. I just won't trust anyone anymore. And YES, I will be getting counseling!!! I know I need it BAD. It was a hostage situation - I was in too much pain to walk so I couldn't leave, but writhing and screaming and begging for help didn't do anything for me until we dialed that "number". Pain is the 6th vital sign - you MUST be treated for your pain, but it appears that if the hospital thinks you are a drug-seeker, they won't.

    Sigh, sorry for the novel. I hadn't shared here yet, as I just got home from the hospital Monday. I'm doing better and pray that no one has to go through that. I am considering also a Medic bracelet - something to help me out if I were to be unconscious ever, etc. Something the docs would trust since they didn't trust my mouth, my story, my rendition - I was at the ER with no proof, other than my pain meds.

    Cheri


    _____________


    42 years old - 3 surgeries in 2006 for L5-S1 issues. 360 PLIF with rods, screws, cages and BMP finally stabilized my back. Now have permanent S1 nerve damage. Must stay reclined and cannot sit or walk for longer than 20-30 minutes at a time without reclining off of my S1 nerve. Significantly limited life as a result. On long acting meds plus breakthrough meds, and muscle relaxers when spasms get out of control.

    12.4.08 to 12.09.08- ANS Eon Mini Spinal Cord Stimulator Trial SUCCESSFUL.

    1.5.09 - Permanent placement of the ANS Eon Mini spinal cord stimulator (SCS).

    1.12.09 - Doc is happy with everything, programmer gave me a few new programs, and all seems well. Pain relief is so wonderful - buzzing instead of burning pain. Still on long-acting meds, but have only had one breakthrough med since I got this put in on the 5th. Wow!



    reply Flag as offensive quote Posted on: Thu, 01/01/2009 - 20:15 #11 poollady



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    Add buddyOh My

    That is such a terrible situation you had to live through. Words are not suitable for your situation. That doc and hospital that would not give you the meds you needed and had been prescribed should suffer. You were very smart to call the number and report your problem. I hope all your current health issues are over and you can get back to your life.
    Thank you for letting us know the words "opioid tolerant". I will talk to my doctor that precribed my meds. It is something we all should know about if we are taking these types of medicine.
    I hope you get to couseling as soon as you are up to it.
    It is scary that the doc treating you would not contact your doctor that prescribed the medicine if he did not believe you. I am not one to sue, but if I was in your place I would too. That doctor that withheld your meds needs to find another line of work. I'm glad you have good notes if it comes to a formal hearing, your notes will be invaluable.
    At times it helps when someone in charge responds knowing they had a problem, but letting us know that it is now resolved and no one else will suffer. Not just on a fact finding mission, did the Hospital Official come back to check on you?
    I hope you have an uneventful, happy and healthy 2009. Thanks for posting.

    Stacey


    _____________


    41 yr old, 1996 Back problems started, conservative treatment until 9/2007 Chiropractor, 5 months (no help), Cervical MRI, Ortho Spine Specialist 3/2008 - C5/6 ACDF, Cervical Spondylosis & Disc Herniation, DDD, 7/2008 Cervical Myleogram ,Lumbar Back Pain 7/2008 Lumbar MRI L4-S1 - DDD, Spondylosis, Disc Herniation - PT 12 weeks, 3 ESI's little relief. Discogram 1/23/09- 2 bad discs, Surgery Scheduled TLIF L4/5 L5/S1, 3/24/2009.



    reply Flag as offensive quote Posted on: Thu, 01/01/2009 - 19:01 #12 ironman


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    Add buddyHi chuck, I didnt know what

    Hi chuck,

    I didnt know what Oxy was until after my lumbar fusion I had Isthmic spondylolisthesis that I lived with for ten years. I never really took much pain medicine, apart from celebrex

    It is an amazing drug. I could feel it wearing off and the shear releif from a new dose.

    With OXY I was very aware and could also feel its other side effects with clarity. My mood was affected, and my entire system, including bowels were thrown out of wack.
    I was on them for around eight to ten weeks and I would not have coped without them but, because of the side effects I wanted to get off them.
    After only that ammount of time I could sense my addiction.
    Coming off them I felt like an addict, with massive mood swings ang depression, tears and suicidal thoughts.

    I took other strong pain meds like Tramadol which is also an opiate and then swithched to high strenghth paracetamol.

    Its now six months since my fusion and I have no real pain.
    The occasional ache and twinge but I feel like its fixed.
    Im off restrictions and working on tight hamstrings with the Physio.

    My advise is get off em and take another med. It will be hell after the amount of time youve been on them so dont do it to soon, but cut them out slowly for sure!

    All the best man!

    Ironman


    reply Flag as offensive quote Posted on: Thu, 01/01/2009 - 22:12 #13 HopeforChuck



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    OnlineHey Everyone

    These are AWESOME posts. There is so much here, I'm pretty tired, but here are some random thoughts.

    I cut back to one Oxy 20 mg today and I felt a HUGE difference. It was hard, but I pushed through. I feel like a fog is being lifted from my brain--now, I needed something at 6:00pm--but it was because of the pain, not because I wanted a drug. My goal is to work down to break through only, the "as needed" stuff as opposed to the 24/7 stuff--but I think I may try coming off and giving it a few weeks/months even though I will be in pain. It's so hard--this is so hard.

    Cheri, I didn't have the same experience you did but I was afraid I was going to in the ER--that sounds horrible what happened to you--I almost was in your chair. When I went in this past weekend for blood clots and hospital admission--the nurse in the ER intially seemed like they weren't going to give me pain meds--but then my PCP took over, he knows me, and wrote for all my meds basically because I listed them for him. That is a very good point--when you go, unless you sneak in your own meds, they want you to take THEIR pills--if your doc doesn't or can't write the orders, you are in trouble. I'm starting to think that these fusion surgeries shouldn't be performed unless the patient has been off pain meds for several months before--just to be sure the meds aren't heightening the pain levels and thus causing the surgery (unless there are obvious nerve/bladder issues).

    I wrote in my first post that I was afraid the pain meds may have talked me into this surgery: well, they aren't going to talk me OUT of a recovery. I'm done. I want to be off in a few weeks--but if there are flare ups--it will be very difficult. I can see that. I have tried to come off in the past, I can get through the withdrawls--as unpleasant as they are--but the pain brings me back within a couple of weeks--it is so easy to reach for a pill. Now I am learning we are talking months to regain the endorphins, not weeks.

    Also, Cheri, I have one of those old school doc friends. He was with me in the hospital this past weekend. He was deeply concerned about the pain meds. He said they are used rampantly and were never used back in the day. He said that Oxy was designed to be taken by cancer patients who were going to die anyway to keep them comfortable. He said it was a crime that I was on these pre-surgery. Just an opinion.

    Another nurse friend who is brilliant, who also has a husband struggling through cervical fusion recovery (and on more pain meds then me): she reminded me that back/spine issues are a fairly new thing as are all the pain meds being thrown around like candy: isn't it interesting that we see this spike in back surgeries/pain while at the same time seeing a spike in pain meds.

    Keep the posts flowing--this has been SO helpful. I'll try to respond to others later.

    Chuck


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    edit reply quote Posted on: Fri, 01/02/2009 - 07:00 #14 kathyy



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    Add buddyCheri - what is SCS?

    The only thing I take is Lortab 10/325 2-3 times a day for a total of no more than 30 mgs a day. I haven't had experience with alot of the drugs being mentioned here. I'm not familiar with the term "SCS" and am curious as to what it is.

    I do know that these drugs are addictive. At what point and at what dosages is addiction most likely? I plan on getting down to 20 mg a day pretty quickly. I haven't noticed the fogginess that others refer to. Should I be concerned about that? Kathy in Atlanta

    PS-tragic that you had to go through such hell at the hospital and absolutely inexcusable.


    _____________


    Kathy in Atlanta - 11/18 PLIF,decompression,removal of synovial cyst. No other spine surgery. Hope it's the last! 56 years young. My glass is always half full! Cheers.



    reply Flag as offensive quote Posted on: Fri, 01/02/2009 - 07:13 #15 haglandc



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    SCS stands for Spinal Cord Stimulator, which is a permanently implanted device that send signals to your brain that confuses it so that it doesn't recognize pain signals.

    "C"


    _____________


    "Everyone is entitled to be stupid, but some abuse the privilege"



    reply Flag as offensive quote Posted on: Fri, 01/02/2009 - 10:30 #16 wahini202



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    Hi Chuck,
    I think you brought up an excellent topic. Medication is a tricky situation. When you mentioned that your nurse had said you would feel pain on a more intense level than the average person it could very well be true. Its hard to say as so many of us have different tolerances to pain, and different types of pain so really is there a scale or average of pain for the entire human race. Not really. This is what I do know about medications. RESEARCH THE HALF LIFE OF YOUR MEDICATION!!!! (if you would like to know more about the half life and how it effects you please pm me) I can not emphasize that enough. I have been on a different type of narcotic for many years to help with sleeping issues, panic disorder and genetic clinical anxiety. I don't have the symptom of "I need this drug I need this drug now!!!" I dont have a mental addiction to the drug but that does not in any way mean that my body has not developed a physical addiction to it. The withdrawl sypmtoms can be miserable on there own account, but I think what your nurse was talking about is "phantom" withdrawl. Let me try to explain that in the way I was told (it makes so much sense).
    Imagine if you had never used your right hand, you casted it and never used it to do one thing in your whole life. Now imagine taking that cast off and trying to use it for the first time. Your brain would have to LEARN everything about that hand. As soon as water hit it, it wouldnt recognize the sensation. Trying to write with your hand, your brain would have to learn how to hold a pencil. It would be ten times harder to use that right hand as opposed to your left hand. Eventually though your brain would right itself and you would gain control of that hand, sensations would feel equal to the left and so on.
    When your getting off medication it has been in a sense your brains crutch to dealing with pain. It doesnt HAVE to work to release the natural endorphines that assist in pain reduction. Once the drug is being removed your brain suddenly has to work to send those endorphines again and its not sure how at first because that part has been well...on vacation. So your going to feel that it is more intense because you dont have the medication and your brain is scrambling to try and get those endorphines going again. It is not so much that you are IN more pain, but that your brain is relearning how to take care of itself with its own natural chemistry.
    Now sometimes that chemistry isnt strong enough and we need the extra help, dont get me wrong. But the possibility that you will feel more intense pain could be like the right hand learning to feel again, or the brain relearning to release endorphines. Its a wierd akward stage and I have been through withdrawl after withdrawl due to trying to find the right mix for me with my panic disorder. Each time my brain had to readjust and I felt my symptoms were worse than they may have actually been. But each time the brain righted itselt, but to make my long story short I am one that needs the medication to help a brain that malfucntions in the sleep and panic category. Genetics!!!
    Please research the half life of your medication, and drop it in fractions. Cold turkey drop is dangerous as you know. I hope that made sense haha, I have what I want to say in my head but sometimes it doesnt register for other people, because I dont explain well enough.
    I knew the effect of the medication and having been through withdrawl before I got off my pain meds at week two post op. I knew what it would be like if I stayed on them too long. Its unfortunate but narcotics are handed out like candy and we are not informed well enough about them, that when the time comes to get off of them we are in what seems like a bigger mess. Please dont take this post as me trying to minimize your pain, I know you have it and its not all brain tricks, its just something to consider as you go through this. I cant tell you how much I understand and would never lessen the feelings you have right now..
    Good luck, God bless
    PM me anytime if you want to know more about half lives of medications and how it relates to dropping dosages, or for anything else
    Erica


    _____________


    27 years old
    PLIF multi level fusion December 2, 2008
    Disc herneation from L4 to S1,
    Drop Foot of left foot, with numbness from knee to big toe
    Degenerataive Disc Disease in Lumbar region, signs of stenosis from L3 to S1
    Buldge extending 1.3 cm at L4



    reply Flag as offensive quote Posted on: Fri, 01/02/2009 - 10:34 #17 Cath111



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    Add buddyI have been on...

    ...Flexeril since last June (at night before bed) and Vicodin 5/500 when needed since early October.

    After my surgery, I continued taking these (couldn't stand the Dilaudid and Soma) as prescribed.

    Now, I take a Vicodin and a Flexeril together when I start hurting, which could be one time a day or four times a day. I don't think there is a day when I don't take them at all, and I never take more than one Vic or Flex at a time.

    My surgeon says I should expect pain continuing through my PT (which begins in late Jan.) and refills my meds whenever I ask. Do you think I'll have withdrawal issues when it comes time to stop taking these meds? Opinions appreciated.

    This is a very interesting thread.
    Cath


    _____________


    ~ 3-lvl ACDF C4-5 C5-6 C6-7 with hardware on Oct. 21.
    ~ Jan 21 Update: Levels C4-5 and C5-6 are fused. Still waiting for C6-7 to join the party.

    "Our greatest glory is not in never falling, but rising every time we fall."



    reply Flag as offensive quote Posted on: Fri, 01/02/2009 - 10:55 #18 wahini202



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    Add buddyOne more thing

    About your pain sensors, does the medication really mess with them. Yes, they really can for most of us. The brain is an amazing thing. Think of this scenerio about how the brain works.
    Your being chased by a dog that is out to kill you, your heart is racing your legs are going as fast as they can, your mind is focused on getting out of this situation, then...you jump a fence to safety. When you jumped the fence you cut your leg. Your adrenaline is rushing you start to catch your breath, your panic subsides because you are now safe and then you bend down to get a sigh of relief and you feel your leg is wet. You notice the cut and suddenly. OUCH!!! Ive cut my leg!!!
    You didnt realize you were hurt because the adrenaline was stronger than the pain sensor. The brain...is amazing.
    Erica


    _____________


    27 years old
    PLIF multi level fusion December 2, 2008
    Disc herneation from L4 to S1,
    Drop Foot of left foot, with numbness from knee to big toe
    Degenerataive Disc Disease in Lumbar region, signs of stenosis from L3 to S1
    Buldge extending 1.3 cm at L4



    reply Flag as offensive quote Posted on: Fri, 01/02/2009 - 14:36 #19 HopeforChuck



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    OnlineToday

    Just a quick update--I will try to respond more later to all these wonderful posts. Somehow, someway, I was able to wean off Dilaudid for breakthrough last weekend with the last dose on Monday. This while in the hospital for blood clots. It was like everything came to a head at once. The Dilaudid is out of the house and the only way I can get to it is by asking my wife who would call whomever has it. I wasn't THAT addicted to it--but we were just scared of this drug. Yesterday, I only took one 20 mg Oxy. Today, haven't taken anything yet--but wanting it badly because of pain. Will probably take it again tonight for pain/weaning.

    I woke up this morning--for the second day in a row, feeling really great considering. I got up and got moving early. We went to the mall to exchange a few things, then we went to the YMCA and joined! It is brand new--state of the art. Just the walking around the joint was probably enough for me, plus the time at the mall, but we got on the treadmills--I lasted 25 minutes walking very slowly. I have walked tons around the house, or so I thought, you don't realize how much you've lost until you actually get on the treadmill and realize you are doing a 20 minute mile as opposed to 6:30's which I was doing just a few years ago. I loved just being around all the active people--it gave me lots of hope.

    Well--I feel like yesterday and today are probably the first days I have felt almost the full fury of the pain from the spine surgery. It hurts.

    I read somewhere that a surgeon told his patient no meds a few weeks after surgery because the surgeon wanted the patient to feel the pain so they would know where the pain was, what kind, just in case there are problems, etc. I can totally see that now. I have this burning pain going down my left leg that I've never truly felt until yesterday and especially today after activity--the L5/S1 root for sure, right into the bottom of the foot--I couldn't have tolerated this pain at what it must have been at 3 or 4 weeks in--can barely stand it at it's level now. I have Lyrica--never started on it--but I may--anyone know how long Lyrica takes to work? Nerve pain is horrible. I feel so badly for people with this--wait a minute, I have it now! Great!

    I can see why people don't get off the pain meds--the pain is a lot to bear when you know you can have releif by taking the pill.

    Chuck


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    edit reply quote Posted on: Fri, 01/02/2009 - 15:38 #20 HopeforChuck



    Posts: 87
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    OnlineThree Stories

    First story: A friend of mine--14 years old and pretty frail--wrought with health problems most of his life, but not confined to a wheel chair and as active as possible--recently had his ENTIRE back fused--every vertebrae. The spine was growing into his heart and looked like an "S" on the X-RAY. Scar from neck to bottom. He was sent home with Vicodin as needed for break through and Oxycontin 10 mg every 12 hours. Well, he came off the Oxycontin 2 weeks after the surgery and never asked for a Vicodin. Entire back fused.

    Second story: another friend of mine has a wrestling accident when he was 16 years old. Had to have a fusion. His mom tells me the doctor was from the Marines and gave him NO pain meds after the hospital. He recovered quickly and is fine. No meds sent home after fusion.

    Third story: doc friend who goes on third world medical mission trips reminded me they don't have pain meds in many of these countries.


    _____________


    Chuck

    Constant LBP since 2000
    MRI shows 90 percent degeneration at L5/S1
    Micro-Discetemy in 2004
    L5/S1 Anterior Fusion November 11, 2008



    edit reply quote Posted on: Fri, 01/02/2009 - 16:51 #21 wahini202



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    Add buddyMakes you wonder

    If pain meds are having some effect on the process of fusing. And also makes me greatful for how lucky I am. Thank you for sharing those. Those are amazing stories, and being reminded of how fortunate we are. Keep going strong!
    Erica
    PS I was off pain meds two weeks post op and was not on any pre op. Youve already made progress in dropping, I know you will succeed. Hang in there.


    _____________


    27 years old
    PLIF multi level fusion December 2, 2008
    Disc herneation from L4 to S1,
    Drop Foot of left foot, with numbness from knee to big toe
    Degenerataive Disc Disease in Lumbar region, signs of stenosis from L3 to S1
    Buldge extending 1.3 cm at L4



    reply Flag as offensive quote Posted on: Fri, 01/02/2009 - 19:41 #22 cherish22



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    SCS is the spinal cord stimulator.

    I also forgot to add this: When that anti-narcotic family doc put me on the Fentanyl patch for the first time in my life (instead of my regular meds), my pain doc FREAKED when I called her when I got released. She said the patch takes 14 days to reach optimal blood plasma level and NO ONE gives it for post-surgery acute pain, let alone blind switch on someone. That is why it was all so bad - withdrawal and all. Crazy doc. He did NOT know what he was doing, at all.

    Today I had to go to the same hospital for EKG, blood work and chest xray for SCS procedure Monday, and I didn't have an anxiety attack, so I thought that was a plus! lol I think I will be ok, but definitely want some counseling to just make sure.

    Chuck, good luck on weaning. Sounds like you are taking it too fast, so be very careful. You do NOT want the withdrawal to kick in - can cause heart issues for sure. I have another friend also weaning and trying to do it without notifying the doc. I wish you both good luck!

    For me, I had to take my first breakthrough tonight since I left the hospital Monday. I had thought my nerve pain was down from the toxic gallbladder being removed but then I remembered DUH, I'm on prednisone for the hives. That steroid is probably responsible for the decrease in pain due to the anti-inflammatory properties. As I'm finishing the Medrol pack and it is titrating down, less and less steroid, more and more pain. Monday can't get here soon enough and I PRAY that all my test results were fine today. Hives are smaller and smaller and I really think they might be gone by Monday. Crossing fingers and praying!!

    Oh, and NO, the hospital administrator did not come back and talk to me. However, on my 2nd hospitalization 3 days later, everyone from the nurses to the doctors treated me as if my pain were NUMBER ONE priority. I just really can't wait to get my records to see what it says!

    Cheri


    _____________


    42 years old - 3 surgeries in 2006 for L5-S1 issues. 360 PLIF with rods, screws, cages and BMP finally stabilized my back. Now have permanent S1 nerve damage. Must stay reclined and cannot sit or walk for longer than 20-30 minutes at a time without reclining off of my S1 nerve. Significantly limited life as a result. On long acting meds plus breakthrough meds, and muscle relaxers when spasms get out of control.

    12.4.08 to 12.09.08- ANS Eon Mini Spinal Cord Stimulator Trial SUCCESSFUL.

    1.5.09 - Permanent placement of the ANS Eon Mini spinal cord stimulator (SCS).

    1.12.09 - Doc is happy with everything, programmer gave me a few new programs, and all seems well. Pain relief is so wonderful - buzzing instead of burning pain. Still on long-acting meds, but have only had one breakthrough med since I got this put in on the 5th. Wow!



    reply Flag as offensive quote Posted on: Fri, 01/02/2009 - 23:51 #23 Lo



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    Add buddyMy roommate in the hospital

    My roommate in the hospital had the same surgery I did by the same doctor... She was on Fentanyl via IV during her hospital stay, and was sent home with the Fentanyl patch. She wasn't on it beforehand, because I was right there when they explained to her how to use it.

    My doctor is VERY good... So your pain management doc probably just has her own opinion. I doubt it's fact, because my roommate was actually put on the patch before she left, and she was fine with her pain, whereas when I first got there she was crying her eyes out.


    _____________


    22. Single mommy of an Autistic 5 year old. Trusting God's plan for me.

    Back pain for as long as I can remember.
    Neck pain/arm pain on and off for the past 5 or 6 years.
    Severe Sciatica in right leg.
    No injuries whatsoever.
    Conservative treatment: Physical therapy, medication, Chiro, Injections, Aquatic physical therapy, TENS.
    Out of work since: June 2007.

    Dx: Broad based herniation at L4-L5, bone spurs in the Cervical vertebrae, irregular curve in the Cervical area, as well as stenosis, small herniation at T11-T12.
    May 1, 2008~ Hemilaminectomy, Microdisectomy.

    Dx: DDD @ L4-L5, right lateral recess stenosis.
    Reherniated disc September 2008, right leg numbness, near foot drop.
    September 26, 2008~ Scar tissue removal, Radical Discectomy, 360 degree fusion (anterior/posterior) @ L4-L5.

    Starting P.T. soon

    Meds: Wellbutrin SR, Percocet, Valium.

    ~CT scan looks really good, fusing is going well. The new pain is the right SI joint. Fun.



    reply Flag as offensive quote Posted on: Sat, 01/03/2009 - 03:28 #24 cherish22



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    I'm sure physician's opinions do vary. My first thought is - would Fentanyl by IV be more immediate versus the patch which is long acting, slow release? I was taken cold-turkey off my regular meds and put on the 12.5mcg patch while suffering acute pancreatitis and having just had my gallbladder removed (and while still suffering my incessant nerve pain). Not given Fentanyl by IV. Had I not been opioid-tolerant, I'm sure I would have had more pain relief from even the very low dose patch.

    When I got released from the first hospitalization, I called my pain doc to ask what the heck do I do? That crazy family practice hospital doc told me to stay on the Fentanyl patches until I saw my pain doc next. My pain doc did the meds conversion calculation, told me how much lower that choice was, but told me I could do that or go back to my regular meds, which I opted to do. The important things was that I kept the pain doc apprised of what was going on so I could stay in good standing regarding my pain contract. (Allowed to be treated for pain for other things, such as surgery lol, just have to let them know.)

    This is why I plan to get off meds as much as possible. I want to return to being that person for whom "most meds" work. Were I not getting the spinal cord stimulator, however, there would be no way to do that. The nerve pain is indescribable and completely different than previous back pain, surgery pain after back surgeries, etc.

    The minute I had received my EMG results of permanent S1 nerve damage, all docs treated me differently. They know even meds don't help stop the burning, and unfortunately, I had bad reactions to the nerve meds such as Lyrica, Neurontin and Cymbalta and can't take them. Even the SCS has controversy and some docs are really for it, others really against it and others neutral. For me, the trial was amazing and I hope for similar results with the permanent placement. I believe if I had more or mostly back pain (rather than primarily nerve pain), the SCS would not have been recommended (I had 2 different neurosurgeons in 2 states because we moved in the middle of all this which delayed the overall quest for the SCS.)

    I can't wait until Monday (if it isn't postponed) and will report on how that goes. Getting very excited (and annoyed when I see more hives break out. They need to go away!!) lol


    _____________


    42 years old - 3 surgeries in 2006 for L5-S1 issues. 360 PLIF with rods, screws, cages and BMP finally stabilized my back. Now have permanent S1 nerve damage. Must stay reclined and cannot sit or walk for longer than 20-30 minutes at a time without reclining off of my S1 nerve. Significantly limited life as a result. On long acting meds plus breakthrough meds, and muscle relaxers when spasms get out of control.

    12.4.08 to 12.09.08- ANS Eon Mini Spinal Cord Stimulator Trial SUCCESSFUL.

    1.5.09 - Permanent placement of the ANS Eon Mini spinal cord stimulator (SCS).

    1.12.09 - Doc is happy with everything, programmer gave me a few new programs, and all seems well. Pain relief is so wonderful - buzzing instead of burning pain. Still on long-acting meds, but have only had one breakthrough med since I got this put in on the 5th. Wow!



    reply Flag as offensive quote Posted on: Fri, 01/02/2009 - 22:34 #25 meydey321


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    Add buddyPain meds

    This thread has been an eye opener. I applaud all who have weaned off narcotics or have not gotten any. Everyone is different; my pain tolerance is low to moderate. I have had 14 surgeries for different things in my life, the last 2 being back surgeries. I never went through withdrawals from all the times I've been on narcotics for surgeries or painful conditions like endometriosis. Back surgery takes the cake for me. It is so intense, more so than 32 hour back labor pains or hysterectomy. I have never had anything else take over my life like this pain, believe me- I have experienced a lot in my 30 odd years. I think the fact that I have an autoimmune disease that likes to attack my body, is one reason maybe I don't heal like I should. I always have inflammation going on, based on blood work. Everything from my heart, lungs, to my joints are affected. I guess what I mean to say is that I truly can't function in my present state without medicine. The pain is non stop and debilitating in my case. Anyone who has overcome this has my respect and admiration.


    _____________


    History: L4-5 central disc herniation, left lateral HNP L5-S1, L4-5 recurrent post op herniation, L4-5 Grade II retrolisthesis, severe DDD, chronic degenerative endplate changes, facet arthropathy, OA, mild DDD in cervical & thoracic spine
    Back Surgeries: Microdiscectomy/ laminectomy,
    2 level TLIF/Laminectomy w/ instrumentation
    Meds: Fentanyl 75 mcg, Norco 10/325 mg, Cymbalta, Zanaflex, motrin.

    Spineys Rule!



    reply Flag as offensive quote Posted on: Sat, 01/03/2009 - 00:21 #26 dilauro



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    Add buddyPaind Medications - is it the same for all?

    This subject has been touched upon several times in different
    form topics here. Tolerance to pain is a very subjective item. There really isnt any measuring device like using a thermometer to determine if you have a temperature.
    Pain tolerance and Pain levels go hand and hand.
    One person's pain level of 4 is another person's pain level of 9! Based on that, tolerance to pain is difficult to figure out.
    Lets say someone took a hammer and smashed it on your thumb.
    Now that is acute pain, but different people will handle it differently.
    What the overall impact of pain medications is to your body is something you you need to discuss with your doctor.
    I was on Oxycontin for about 2 years, starting at a fairly high dosage and eventually done to none. Today, I get by with Oxycodone IR, Neurontin and Zanaflex.
    I had monthly follow ups with my Pain Management doctor. She is very conservative and does not like to write scripts for pain medications. However, when the pain a person is having is real, she will always take the path to provide pain medications. Together we put a plan for myself to wean off Oxycontin 40mg 3x day down to 10mg 1x week to none.
    It all has to be done slowly and orderly


    _____________


    Ron DiLauro

    Ron's Story
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    The information provided by members of Spine-Health should never be considered as formal medical advice. It is recommendations based on member's personal experiences only.
    This can vary from person to person, so do not take comments as medical facts or rules




    reply Flag as offensive quote Posted on: Sat, 01/03/2009 - 01:25 #27 zachback


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    Add buddyChuck, you can do it!!!!

    Chuck, your story sounded exactly what I went through last year after my fusion surgery. I was taking oxy 20mg, increasing all the way to morphine IR and CR, and Dilaudid, too. I got to a point that I don't even recongized my wife. Can you imagine that I asked her, 'Who are you?' one day she came in with my lunch?

    You know how i got out of it? Cold Turkey and a lot of determination. I am not suggesting that you do it cold turkey, it will shock your body and the withdrawal is hell. Do expect a little withdrawal even you are tappering off. The worse withdrawal to face is the freezing.

    Sure, the pain will be at your face every minute. I got through it by blasing my ears with the IPOD. Replace the meds with walking and IPOD (never leave home without it) and sing on top of your lungs when you are walking. Carry your cell phone with you if you are walking alone. Believe it or not, walking will bring back your own body's endorphine. I did it in 2 months, and the pain went down to a 2.

    Believe in yourself. Believe that you are getting better and better each day. My leg got stronger each day I walk, and with each extra steps I made, I celebrate (I wore a pedometer).

    Chuck, I am going for another fusion surgery in a few days. What I just wrote is something I want myself to remember. I don't really want to go through the surgery mainly because of the recovery. But I keep reminding myself that everything will be OK. Have a determination and sitck with it till you get it. Set mini goals that leads to a large goal. Celebrate every success in the mini goals to keep you going.

    Never give up. Have faith in yourself. Do it for yourself. YOU CAN DO IT. YOU CAN BRING YOUR OWN ENDOPHINE BACK!

    Pardon me for being long-winded.

    zach


    _____________


    Used to be a spony, used to have scar tissues, and boney overgrowth, but now a new man - a pain free (almost) man.



    reply Flag as offensive quote Posted on: Sat, 01/03/2009 - 01:33 #28 dilauro



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    example of what positive attitude, win-win approach and maintaing emotional strength can do.
    Not everyone can take the cold-turkey approach. I wouldn't recommend it or condone it. That is something to discuss with your doctor.
    I know a got back a piece of my mind after eliminating
    oxycontin. (Now back then I had an excuse to forget things, now I have to own up to my short term memory problems!)


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    Ron DiLauro

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    The information provided by members of Spine-Health should never be considered as formal medical advice. It is recommendations based on member's personal experiences only.
    This can vary from person to person, so do not take comments as medical facts or rules




    reply Flag as offensive quote Posted on: Sat, 01/03/2009 - 01:51 #29 Bruce



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    Add buddyRon is right about us all

    Ron is right about us all having different pain tolerances and therefore it is hard to compare notes and think that what worked for one patient would work for another. Every doctor has a different view on pain meds. Take mine for example.... after my laminectomy and fusion, and then again after my hardware removal surgery, my surgeon only gave me ultracet/tramadol, which is really quite a lightweight pain killer, compared with Oxy. However, he gave me a strong COX 2 NSAID, even straight after the fusion surgery and I was on it for weeks. Now, NSAIDs after a fusion are normally considered taboo, but his theory was that the very good anti-inflammatory pain killing benefits outweighed the slight risk of the NSAID negatively affecting my bone fusion rate.

    At the end of the day, however, we should be guided by what our own doctor recommends rather than anecdotal stories like mine.

    Chuck, it sounds like you are doing really well now - congrats and keep it up!


    _____________


    Severe Degenerative Disk Disease and severe bilateral foraminal stenosis at L5-S1. Laminectomy & fusion in Dec 2006. Hardware removed due to issues, in July 2007. Now living a back pain free life.

    View my story
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    Important: My comments here and comments from other members reflect personal opinions only. You should not act on any advice or opinion posted in these forums without seeking proper medical advice from a qualified doctor. Please, ALWAYS check with your personal physician before taking any action regarding your health!



    reply Flag as offensive quote Posted on: Sat, 01/03/2009 - 02:07 #30 zachback


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    Chuck, congratulation on where you are now. Every step you took is an amazing step. I applaud you.

    I joined the YMCA last year after my 2 months period. They have a personal trainer to go through the machines with you and there is a personal key that you pay $20 for it. This key keep track of what you have achieved on a day to day basis.

    If you are going with the personal trainer option, I have to warn you that the people at Y do not understand people who go through fusion. Make sure that if you cannot do any of the machines, tell them to remove them from your program. NEVER ATTEMP the stomach cruch or the REFLEX pump. They are not good for your back or fusion. No matter what exercises or machine you use, make sure that you keep your back straight at all times. If you have a brace, wear it (forget about people starring).

    I did not know and followed my trainer to a T. Even pumping 50 lbs on the leg pumps, and guess what?!? I injured myself.

    I got a good scolding from my doc! DO NOT lift weight more than 5 lbs, no matter what, until you are totally fused!!! Please learn from my mistake. I need to go for a refusion soon.

    GO SLOW!!!

    zach


    _____________


    Used to be a spony, used to have scar tissues, and boney overgrowth, but now a new man - a pain free (almost) man.



    reply Flag as offensive quote Posted on: Sat, 01/03/2009 - 08:54 #31 kathyy



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    Add buddySome common drugs in order of strength-questions on addiction

    I found this on the internet and can't document it's validity but according to this list, aspirin is least "stong" and Levorphanol is "most strong." Accordingly, Hydrocodone (Lortab) is not as strong as Oxycodone (OxyContin, Percocet, Percodan)but I don't think the difference is that marked. I posted this because I get confused by all the brand names being mentioned in this post.

    Aspirin
    Difusinal
    Dextropropoxyphene
    Codeine
    ramadol
    Anileridine
    Demerol
    Hydrocodone
    Morphine
    Oxycodone
    Morphine IV/IM
    Hydromorphone
    Oxymorphone
    Levorphanol

    Here are some questions I have for those of you who obviously have much more experience with pain meds than I do. I've been taking Lortab for 6 weeks(now at 30 mg a day, down from 80 or 90 mg a day right after surgery). How likely is it that I have developed an "addicition" at 6 weeks? My plan is to stay on some type of dosage daily, probably wean down to 10 mg Lortab as needed until I am released from the prohibition against NSAIDS at 6 months. Is that being reasonably cautious? Should I still expect withdrawal issues at that rate? This is a wonderful post and really has me reevaluating my pain relief plan. Kathy in Atlanta


    _____________


    Kathy in Atlanta - 11/18 PLIF,decompression,removal of synovial cyst. No other spine surgery. Hope it's the last! 56 years young. My glass is always half full! Cheers.



    reply Flag as offensive quote Posted on: Sat, 01/03/2009 - 08:54 #32 kathyy



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    Add buddySome common drugs in order of strength-questions on addiction

    I found this on the internet and can't document it's validity but according to this list, aspirin is least "stong" and Levorp
  • Update (copy from other thread)

    Hello Everyone!

    Well, I had my 2 month post op appointment--more like 10 weeks. The PA said no PT until 3 months. At 3 months they will do a Catscan if I am still having pain issues. I say "why bother?" Do I really want to be exposed to the radiation? They aren't going to do anything anyway--apparently it takes 6 months to a year if the fusion is even going to work. She said the fusion needs to "stiffen up" and my pain will decrease. I asked her if there was anything I could do to move the process along--she said no--just walk one mile a day--I actually do much more. They took X-Rays and she said she couldn't tell if it was fusing. She said it was still "setting up." Whatever. I HAVE improved slowly. My pain meds are cut in half or less and my back doesn't feel like it is coming apart--like it did at the one month mark. It DOES feel like it is coming together. The pain down the leg is less as well. So--do you think the pain corresponds to the fusion process? So, if it is 30 percent fused (if we could see it), then 30 percent of the pain is gone, and so on? That's what it feels like to me. I guess everyone is different. Well, we just drove to Florida over a 2 day period (20 hours total driving)--got up and walked every hour for a few minutes, especially for my blood clots--I know it was crazy--but we did it and I don't feel any worse than I do at home. The only numbers that matter to me are the 10 day forecast: 72, 76, 77, 78, 80, 82, 80, 78, 76, 74. The expected weather here is the first stroke of good fortune I have had in a while--of course, I believe that God has his hand in everything--but you know what I mean. The past several days have been VERY cold for Florida--but we just arrived tonight (so we missed the cold) and it is supposed to be AWESOME the next 10 days. YEAH!!!!

    Chuck

  • Hello Everyone,

    I just read Chris' thread via his wonderful wife and I decided to combine my threads into one. It really helped me to read Chris' story from start to finish, so perhaps my story will help others as well. Reading many of your stories helps me put my pain in perspective.

    Well, I am three months post-op and just starting to feel like this surgery may have actually worked. The past few days have been great. I'm trying not to get too excited--but I really haven't had days like these for many many years. We went away from 2.5 weeks and did a lot of walking--I really think this helped. I can feel a difference in my back--like it is fusing and getting stronger every day. I had terrible pain post-op and there were times I felt it was a big mistake. I was not one of these people who woke up from surgery without any of the original pain. I woke up and felt an intensification of my original pain! However, it has gotten better and better.

    I am down to one Oxycontin 20mg a day--however, I have been tempted many times to pop a pill for pain during the day.

    I go for an appointment next week....we'll see how long this lasts...hoping.

    Chuck
  • Hi Chuck,

    I think you really have something on the pain med tolerance issue. My husband had a microdisectomy after years of major oxycontin use (eventually leading to an abuse level). He swears that his pain was SO much more than I can possibly understand.

    I had a 2 level fusion - 2 surgeries (due to complications) in 2 days. I had pain, but I can't even begin to imagine the pain he insists he had. Because of the abuse experience with my husband, combined with a terribly weak stomach, I only ever used ibuprofen for my pre-op pain.

    My minimal meds (roxicodone - 5mg up to 15 if I needed)took care of everything for me. I did wake up in pain (had demoral in the hospital for the first few days), but by the time I was released from the hospital I was in less pain than I what I had gone in with.

    I believe it when you were told that 'heavy hitters' experience pain so much more. It explains the 'my back surgery was worse than yours' mentality of that DH of mine. I guess I have to admit to him that I believe him now ;)

    Best of luck getting through this next year - it's a good thing you are such a tough guy, I have a feeling you're going to be needing that reserve of strength to make it out to the other side of this. Again, best of luck.

    oh, - p.s. your dr. seems to be a lot like mine - very casual and just walk, walk, walk, walk. I wasn't given any PT until I started to have atrophy complications at the 6 month mark.
  • I also have had a very rough recovery. I was just sure this was a big mistake. I'm finally getting to the point where I am not in constant pain. I took myself off the Fentanyl patches about three weeks ago. I just couldn't live in that fog any more. I take a couple of oxycodone a day. Sometimes only one, sometimes I need a little more, but my doc is very impressed by my progress. I agree that the walking really helps. I still use a cane because of numbness in my foot and because with a three-level fusion, I am so stiff. I sometimes feel as though I have been nailed to a board. It is getting better though. None of these surgeries are easy -- we are, after all, getting down to the nitty gritty of the nerve centers.

    Linda


    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • What a story Chuck! I hope you will continue to post your recovery for us. I am scheduled for L4-S1 PLIF on March 10th and am very apprehensive. I , like you, am functioning but barely. I worked up until last week for about 50 hrs a week at a sit down job in a call center. (so I could only stand on brks and lunch) I have had LBP for 15+ years first beginning when I was about 17. I have grade II Spondoloisthesis, Spondolosis, DDD and no disc remaining at L5/S1. Doc told me to find another job even after the surgery because of the constant sitting. These days that is not so easy.

    I take minimal pain meds for pain, I don't like Vicodan so I take Darvocet, Ultram and Motrin. I also have Fibromyalgia so I take Elavil for that, which actually helps my back pain a little bit. So no heavy hitting drugs for me. Biggest problem (besides the "catching" which I completely understand) is the nerve pain and the fact that I am no longer functional. I cannot do anything longer than 1/2 hr or 1 hr. ie: sit, walk, ride in car ect.... and my back has progressively deteriorated.

    I have tried it all, like most of us, with no relief. PT only aggrivated it to the point of not being able to move after a treatment.

    I certainly hope the path to your recovery is not one that I will follow. But they do say god doesn't give us more than we can handle! You sound like a very strong man both physically and spiritually with a loving and supportive family!

    Good luck to you and pleas continue to post as you recover!

    Jill
  • I got on this site this morning because I was literally in tears and looking for guidance. Thank God your post is the first one I saw. I had my ALIF at L5/S1 8 days ago. I am in SO much pain today, I just don't know what to do! My incision site hurts, my graft site hurts, but my lower back REALLY REALLY REALLY hurts! I can't find a single comfortable position to sit it, much less sleep in. I was up all night last night (bothering my poor husband) trying to figure out what to do. I'd requested a hospital bed so I could try to change positions frequently, but of course the ins co denied it. I was one of those who was NOT on any narcs before surgery (though suffered with grade 2 spondy for about 18 yrs), and now I'm on Oxycontin (which cost me $250 cuz the ins co wouldn't pay for it!!!). percoset and valium. I feel like all the drugs are doing are making me loopy but not helping with the pain at all!! I just put a call in to my doc to see what they say. I'm sure they're say "you're only a week out...hand in there," but I'm in so much pain, I didn't know what else to do.
  • lsteller said:
    I also have had a very rough recovery. I was just sure this was a big mistake. I'm finally getting to the point where I am not in constant pain. I took myself off the Fentanyl patches about three weeks ago. I just couldn't live in that fog any more. I take a couple of oxycodone a day. Sometimes only one, sometimes I need a little more, but my doc is very impressed by my progress. I agree that the walking really helps. I still use a cane because of numbness in my foot and because with a three-level fusion, I am so stiff. I sometimes feel as though I have been nailed to a board. It is getting better though. None of these surgeries are easy -- we are, after all, getting down to the nitty gritty of the nerve centers.

    Linda


    Linda,
    I'm not sure if this will encourage you or not--but I just want to say that I cannot begin to imagine how hard it must be to have multiple levels fused. I had ONE level--that's it--and I am in a constant battle. Just know there are people who appreciate the battle you are in--people who have not had back surgery don't realize it could possibly be one of the most painful surgeries to recover from--and the pain just goes up exponentially with every level added (I would think). For me, stiffness has set in the past couple of days. I really think it is because I am fusing. The pain is changing--hopefully that is a good thing.

    Hang in there--
    Chuck


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