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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 - 7:25 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
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  • 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.
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  • . . . 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
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