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Need advice or info

iowarobiniiowarobin Posts: 1,268
edited 06/11/2012 - 8:40 AM in Back Surgery and Neck Surgery
Hi All. Went to my pain Dr on Monday. I was wanting to switch meds as my fentnyl patch and oxycodone were not working well anymore. He looked at my MRI and CT reports and said that I shouldnt be having this type of pain. He decided that I needed muscle relaxers as he feels my mucles are too tight, so he put me on baclofen and flexaril until the baclofen kicks in. Said it would take a month or so for it to help.
I was to say the least disappointed as I wanted to go down on my meds and change them as I have been on the same thing since 2 level PLIF in Dec of 08. He also decreased my bt oxy to no more than 10 per day. I was taking 12 most days. I think he is a very good pain Dr, and he didnt want to change to many things at once, thinking that he wont know what is working. But honestly, if I dont take my bt meds, and i dont change my patch until 72 hours, I am one hurting unit. If I change it every 48 hours, I am alot better on the third day. I still have a torn disc at L3-L4 right above the fusion. My CT and MRI didnt show it before, it took a discogram to find it.
My Question is, has anyone taken baclofen with my type of situation, and if so, did it do that much good? Also, the pain is a very deep feeling pain, like prior to my fusion. My Ortho wants to wait six months and give me more time to heal. But I am so tired of hurting and wonder if I should go back to the spine clinic I went to that originally found the problem, and they are the ones who said that the nmri and ct dont always show small tears.
I am just so tired of this whole thing. I know I should be paitient, and after having three surgerys in the past 9 months, that it might take longer to heal. But I just feel like I am wasting my life away by constantly waiting to see what happens. What are your thoughts? I hope this makes sense to you, as it is late and I am trying to express my frustrations. Thanks for any thoughts you have on this, it is appreicated. Love,Robin


  • Hi Robin,I don't have any experience with any of these meds,but I am sorry you are having such a bad time---I think I have seen baclofen mentioned on here,and several people have taken flexeril----please keep us posted---sometimes it helps to just talk it out!Looks like you were up very early,I hope you get some rest-sincerely,Jeannie
  • Hi Robin,
    Unfortunately I don't have much experience with the meds you are discussing either. I do, however, have plenty of experience with the "hurry up and wait" game you feel like you are playing and I understand your frustration.

    Let me guess you go from telling yourself, "This is as good as it's going to get." to "This can't be as good as it's going to get." a hundred times a day.

    You said your Ortho wants you to give it 6 more months for you to heal. I guess that's at least a goal to look forward to. When the spine clinic found the small tears what was their recommendation?

    Hopefully you have a good enough relationship with your pain Dr. that if the change in meds doesn't work you can contact him and make adjustments.

    I know how you feel. Really I do. You go to bed at night and you say another day has ended and there is still a message out there I haven't gotten-something I needed to hear that I didn't.

    Hang in there. I've been going thru the same thing for quite some time. "No Answers." I'm just now trying to use this time in my life as a call to live not just exist. I'm trying to enjoy what I have right now.

    Take Care,
  • I also am unfamiliar with the meds you mention. I just want to offer support. i feel like a winey baby when i think of the fact that you have been suffering and going through all these surgeries for over a year now. The "wait and see" phases suck. Like Frog said since you have a good relationship with your PM hopefully more adjustments can be made if you call. You are in my prayers.
    God bless and keep You,
  • Nice to see your back on the board more frequently. If I were you I'd go back to that spine clinic that found the tear. Unless you have developed a systemic reaction to pain since you have had more surgeries, which would be another topic entirely, six months is really long enough for you to sense if this is part and parcel of the healing process, or something that requires attention.

    Yes we all know nerve pain can take at least a year or longer to clear up...nerves take a really long time to regenerate, etc. But we patients also know sometimes a nerve cannot regenerate completely and we are left with pain. Sometimes it is worth checking out if there is another reason for the pain, or perhaps a different pain generator.

    Oops just looked at the clock. I need to leave as I have an appt with my "rearranger." I'll finish my thoughts when I return....sorry.


  • Gwennie, As usual looking forward to you finishing your thoughts. Yes, Please do tell, please explain systemic reaction to pain . Oh, and can I ask? Who is a "rearranger."

    Maybe I should just hit google.

  • who have replied to this and given me support. To answer Gwennies question, I had my surgery by the Ortho that I went to for a second opinion. The Spine Clinic Dr that found the tears wanted to do a 3 level fusion and for me to be off of all pain meds for a month before he would do the surgery. I went to the Ortho that did the fusion and he said only 2 as 3 levels have more chance of failure. He said he would do the other one if it became an issue down the line. So I did the two level. Now I am afraid to go back to the Spine Clinic after not having the fusion there. I am also feeling like if I keep waiting I am wasting time. I just dont know. I think another discogram is in order to see if the other level is what is the problem. I just dont know what to do. I am just tired of hurting after over 3 years, and expecting after a year the fusion to have helped more. Thanks again to all of you, you are my life line and a great support during this time in my life and I appreciate all the support, Love, Robin
  • Hi Robin sorry to hear of these "new" er problems :(

    I too would go back to the spinal place that found the issues.

    Is there any reason why you can't/should not go?

    You have been through this long enough to "know" when your body is waving a red flag at you ;)

    Prayers this all works out (( HUGS ))

    PS: flexaril did not touch me except to make me very very tired. My daughter said it helped her enough she fought the tired feeling and in time it was not as bad.
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • that sometimes your body is so used to being in pain it forgets to feel OK. I was told about this by my neurologist back in the beginning. He said the longer you are in pain the better chance you have for this to happen.

    Basically you are so used to saying this hurts that you forget what it is like to not hurt. Kind of phantom pain.

    Now before everyone says - not me!! Think about it a little. When was the last time you didn't feel pain? And do you really remember what it was like? Also when was the last time you didn't EXPECT to feel pain?

    No one says this is a concious reaction. Your body can learn feelings and reactions. If you feel heat in your finger your brain thinks - burn and pulls the finger away and sends fluid to that spot to aid the burn. If your brain has learned that your arm hurts it may react in a way to protect it which might cause real pain or your brain may just say PAIN.

  • I'm sorry to have posted a confusing term. I do not know how to identify this person who has helped me more than anyone. I was referred to him by an orthopedic surgeon and I have been going in for treatments for over a year now.

    He's one of those people who has training in a variety of modalities, including acupuncture, massage therapy, Chinese medicine, and various types of bodywork. He also used to compete in extreme skiing. He developed disc problems and came up with this "system" out of necessity to treat his own issues.

    Eventually, he came up with a treatment system that was originally designed for athletes who participate in the long distance events, 100 mile races, triathalons, iron man competitions, etc...except that now most of his patients are orthopedic, and are referrals from spine specialists. It combines aspects of acupuncture, Chinese medicine, and some modalities from physical therapy and body work. He uses acupuncture to warm up the body, then uses a hand-on treatment to balance alignment.

    He basically works with muscles and soft tissue to rebalance and realign the body's structural posture. When in proper alignment the body works more efficiently without causing additional wear and tear on the spine...especially important for fusion patients who hope to avoid adjacent disc problems.

    There is not a label to attach to what this guy does...but when I come out of an appointment, I always feel very well aligned and balanced.

    He goes around the country and teaches his modality and now that the demand for his time is greater than the amount of time he has to teach, he is creating a program on DVD that can be used to teach his system to other therapists.

  • What Kris describes is similar to what I meant. Just like headache sufferers can end up with more headaches from taking medications too often ("rebound headaches"), a similar thing can happen with chronic pain.

    Chronic pain is a very complicated mechanism and I am the first to admit I do not understand it all that well. I don't think most of the medical establishment understands it well either ((not that I am in any way comparing myself to the "medical establishment"... @) ) but I do know there is tons of research going on concerning chronic pain and how to treat it.

    When a part of the body is injured, either through injury, illness or disease, it sets up a series of complicated transmissions that run between the brain and the central nervous system. This process apparently results in changes at all levels of the central nervous system.

    When pain is not resolved within several months, there is a continual activation of the nerves that can result in changes to the spinal cord and brain. Eventually the brain becomes confused and does not perceive pain signals correctly any longer. It can remain in a state of uproar -- of constantly being "on." The signals no longer function properly, turning off and on and off again. It is almost like the whole central nervous system short-circuits.

    I like to think of it as a little kid that is over-stimulated. He can function OK for awhile, but when there is no relief from the stimulation, eventually the child cannot deal with it any longer and he loses control.

    The part of the nerve that carries the message of pain to the brain is called a nociceptor. With chronic pain there is even the possibility of another part of the nerve turning into a nociceptor, thereby carrying even more of the message of pain to the brain.

    I was just thinking in Robin's situation, where she has had a number of serious surgeries within a short period of time, and all that goes with that, such as taking a variety of pain medications, etc., her brain must be overloaded by now. It must be difficult for it to handle the various nociceptors and sort them out. I would think it would be in such a state of arousal that it no longer remembers how to quiet down. The nerves have been under siege and bombarded with so much that they no longer remember what "normal" is.

    When I was writing the first post, I was more or less "thinking aloud" and I did not have my thoughts fully formed. I was just thinking that with all the major surgeries she's been through, her part of the brain that sorts out the pain messages must be overwhelmed by now.
  • Regarding going back to the spine clinic, I would think they would still take you on as a patient, but you might have to listen to a bit of criticism about the surgery you had, etc. Most surgeons have large egos and always assume their decisions are best. They'll be saying, or at least thinking "You made a mistake by going to someone else...but now you recognize the folly of your decision and want to rectify it by coming to the good, wise surgeon"...you know...that sort of thing.

    It is only human nature to want to have the least amount of surgery done. Two of my opinions wanted a 3 level fusion, but said it might end up being 5 levels when they got in there. Six others all told me I needed a one level. Of course I went with one who said I needed one level!! And now, two years later, I am going to have the other two levels done. I probably could have saved myself two years of ongoing pain if I'd done 3 levels to begin with...but I didn't know that at the time.

    In my case, my surgery was fine...no problems. I fused early and well...everything was textbook perfect...except for one little problem. It did not take care of my radiculopathy. And, when I have my next surgery, we are only HOPING it will take care of it. It's a crap shoot!! There are no guarantees, as we all know only too well.

    Will someone do a discogram for you?
  • what you are saying. I have often wondered how all these surgeries have effected me. I think that is why the pain Dr wants to try muscle relaxers, as he says my back muscles are hard and tight from all of this.
    It is an interesting thing, about how nerves work, and sometimes I wonder about being overloaded. The top of my head is numb from that surgery. So again there are a bunch of nerves that are wondering whats up. I did get my head examined in Iowa City and they said it was ok =)) =)) .
    I thank you for trying to help me understand and I hope that I am making the right decision, in waiting another six months to see what happens. Gwennie, you are a doll and I appreciate all your support. Love, Robin
  • Why don't you just take it month by month? I don't think I would wait another six months if I were in your shoes! What about going to another pain management doc? Have you tried a physiologist? They are very good at getting people back on their feet after a traumatic event such as a stroke or spinal cord injury...and deal with pain, all the injections etc. that a PM does.

    I think many doctors form an opinion about you at the beginning and it takes quite a lot to get them to think about you in a new way. If what they are doing isn't working, it is hard to get them to try something new...My PM guy had a one-track mine and it is a spinal cord stimulator. And he didn't even put them in. I would have been referred to someone else for the surgery to implant it. Every appointment I told him NO, and I had good reasons for saying that. One day, he said..."So, why are you here?" I said I had been wondering that exact thing...and I never went back.

    I don't understand why you'd be given the same meds for over two years. I must admit I don't know that much about long-term pain meds, but don't they lose their effectiveness after a period of time? And they aren't controlling your pain anyway, so it seems like something needs to be done differently. Unless you're really attached to this guy I think I might look for someone else -- maybe just to talk to...it may be that Doc #2 will suggest the same thing...but then you'd know and could stop wondering if you're getting the right treatment.
  • As I had said before, I'm new here and do not have any experience with fusions, well..till I have mine,lol!, but I just want you to know I hope you will get the answers you need and will be reading here to see how you do.
    Take care and a big..gentle...hug!!
  • The Dr at the Spine Clinic that wanted to do the three level fusion was so arragant, that I find it hard to face him again, although I am truely thinking about it in a month or so. My pain meds have changed over the past 3 years. I have been on the same thing, for the past year, but the fentanyl patch was increased after surgery, and gradually got to where it is. I wanted to have my pain meds changed but he said because my back muscles were so rock hard, he wanted to start with getting them relaxed. He said if he changed all of it, he wouldnt know what was working. Kind of made sense to me, I am hoping that the Baclofen works. It has to be used for 4-6 weeks to feel the effects of it.
    Living in rural Iowa, I dont have many choices for pain Drs or other types of Drs. I dont like to travel because of pain, and every other pain DR and Ortho is 2-3 hours away. The ones that are worth it anyway. Thanks for your help. You are so knowledgeable, I am amazed at how much I learn all the time.
    Thanks Jenifer for your support also. Good Luck on your surgery the 9th. I hope that it goes well for you. If you need anything dont be afraid to ask me any questions. Love, Robin
  • I understand. I went to Chicago to see a neurosurgeon over Christmas vacation. It was about a 90-minute drive from my home on an interstate that carries all the truck traffic. Luckily he proposed the same procedure done the same way, that my doc here in town is proposing...so I wasn't even tempted.

    It is very inconvenient to have to travel any distance, particularly if you are a high maintenance patient, as I consider myself to be. I like to see my doc. if I feel something is not quite right...I don't wait for the assigned intervals after surgery.....my current surgeon is right in the neighborhood and it is very convenient!!

    The pM doc makes a good point in changing things one at a time -- just like if you have nerve blocks at several levels, you have no idea which nerve is responding.

    So ignore my comments and just stay on top of your current doctors. If the muscle relaxant doesn't do enough, then you can express your desire to shake things up medication-wise!

    I learn a lot, too. People ask about things I have never heard of, so I run a search and learn something new. You never know when it might come in handy!!

    Take good care,
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