Need advice about spine fusion with fibro

Discussion in 'Fibromyalgia Main Forum' started by lbuchanan3, Apr 9, 2007.

  1. lbuchanan3

    lbuchanan3 New Member

    Hi,

    I posted earlier in the week about having a consult with a neurosurgeon about getting a spinal fusion. Well the consult was today and I am even more confused than I was before about what I should do.

    He said he could do a surgery in my neck to help with nerve pain, but that he thought most of my pain was mechanical rather than nerve so he could only guarantee a 20% or less reduction in my arm and hand pain.

    So this is the question-I have Fibro, Arthritis of the spine and a positive conduction study for Carpal Tunnel. So far I have had no Carpal tunnel surgeries, because of the same reason (they think I have more neurological problems than just carpal tunnel so the outcome would be less than expected) and now I have a neurosurgeon saying because I have Carpal tunnel, spinal arthritis and fibro I would have less than expected good results getting a neck fusion. I also have diabetes and nobody seems to be testing for diabetic nueropathy, it is well under control with only 1 30mlg actos a day. I guess I am just going to be left untreated until something goes pop. I have an MRI showing that I have pinched nerves in both the right and left side of my C5-6 vertebra and a herniated lumbar disc. I could try to have surgeries for both disc but may still have problems.

    What I want feedback on is from anyone who had full blown Fibro and had a neck fusion or lumbar fusion done. Did you have any improvement in pain? Or did you find the surgery increased your fibro symptoms. At this point I am thinking 20% is better than not trying anything. Everything I have read suggest that letting a pinched nerve go might actually get to the point that I could loose my ability to turn my head and use my arms and hands (which I barely have the use of now.

    So please let me know what you have experienced, good or bad, but only if you had Fibro before the surgery.

    Thanks,
    Linda B
  2. survivor13

    survivor13 New Member

    sorry i have not had surgery yet but have full blown FMS and in the same boat as you as am having tests and consultations for a spinal fusion as we speak so will be interested in seeing your replies too. i am too in the same quandry as to whether or not to have it done as the success rate is really bad as you say with minimal improvement in many cases. just wanted to offer my support and i will watch this post with interest as well as it could also afford me some much welcome insight into a very difficult problem and decision. i can offer you my support though for what its worth and hope that there is someone who can give you the information you need to make an informed decision on your predicament. (((((((hugs)))))))) xxx
  3. lbuchanan3

    lbuchanan3 New Member

    Survivor13

    Hope I get some answers so we can both make a decision. Sorry you are in the same boat. Sometimes I wish I had never had the Fibro confirmed because now it seems noone wants to touch me.

    Good luck to you to

    Linda B
  4. Omacarole

    Omacarole New Member

    Yes, I've had C6 spinal fusion taking bone from my hip. The hip pain was worse than the neck! I could hardly walk for weeks, but I had no pain in the neck. For the past year I've had pain in my neck and shoulders (surgery was 10 years ago) and now C5 #C4 have weakened (degerative disc disease) Two years ago my lower back pained me so badly and it was found I have Spinal Stenosis. Pain Management gave me Epidurals, but they only lasted about 3 weeks so now the Pain Dr won't give them anymore. I'm in pain all the time, but the Dr's don't want to touch anything because of having Fibro...Fibro people don't heal well they say. I just started with a Chiropractor and have had 3 treatments and I feel no relif...makes more pain. Don't know what to do either, nobody wants to care for us. Had to have total knee replacements within the last 7 years and I have nothing but pain from them. Ortho says everything is fine when he hangs up the x-ray...he say my pain is Fibro. Had a Bi-Lateral Laminectomy on L5 2 years ago and it didn't do a bit of good. Now my whole spine hurts and it sounds like a ratchet when I move, but Drs won't touch me, instead they make a plan of exercises to strengthen my back and after doing them I have more then.

    Don't know what else to tell you...you alone must make the decision and find the doc that will help you.

    My thughts and prayers are with you.

    Carol
  5. blkkat

    blkkat New Member

    HI, i also just saw a neur. surg. last week . and also have FM, CFS, IBS, 3 bulg. dis. in neck and 2 in middle of spine and severe lower back /hip/ leg/feet PAIN 24/7 sale 10 plus like most.

    and that's on oxy.5 mgs 6 x day/ oxy.time release- 10 mgs 2 x day/ neurontin 500 mgs a day/ Prozac 30 mgs a day/ and 800 mgs muscle relax., & 1.5 mgs clonazepam to help w/ pain /sleep.

    I've fallen a few times and I'm getting worse , yes i've had a MRI to rule out MS but haven't got a spin. tap yet.
    even got 2 EMGS NOTHING SHOWS!!!


    I use a cane on a good day/ walker on a bad day / and a wheel chair so i can get out w/ the family and live as best i can.

    I can't tell you what to do, all i know is ((( WE ))) don't do well w/ surgeries and even w/ all this PAIN , I CAN STILL WALK!!!!!!!!! i don't mean to be a downer but you asked.

    GOD BLESS -- I"LL PRAY what ever you choose , its right for you. BLKKAT-- HOPE I HELPED .
  6. swehling

    swehling New Member

    Wow- I guess I'm not really surprised by how many of us have spinal degredation- I have degenerative discs and bone in low back w/ a mid herniation and a neck w/ 2 bulging discs. About 4 weeks I had radiofrequecy done on my low back. This is one of those 50/50 things to stop the pain. I was skeptical. You know it has worked so far- it was very painful before it got better and I thought they screwed me up more-but now at night I can actually turn over and not have it feel like someone taking broken glass and scraping the inside of my back! I'm in aquatic thearapy to rebuild my core. I don't know how long the radiofrequency will last, but while some of my major pain is under control, I'm going to fight. The less surgery you have the better. Look radiofrequency up on the net.
    I'm also Lyrica for sleep w/ a cpap machine, ultram er for daily pain. I have thyroid/Hashimotos-blah, bla, bla- But I tell you I actually have some energy back and you have to believe that you can help yourself by doing the research and finding the things that will work for you! This message board has been a god send for me. Getting info on people's reaction to drugs is a major thing. I didn't take certain things prescribed because of the majority of the forum members reaction and probably saved myself serious stomach and headach issues. Love you guys!
    Susan
  7. lbuchanan3

    lbuchanan3 New Member

    I would love to address each of you individually, but alas my brainfog makes me forget names from one screen to another.

    Guess we are all struggling with the medical community not wanting to touch us. It is so strange to me, but not exactly unexpected.

    I wish I could get a second opinion, my insurance and the clinic my PCP is in seems to limit me to seeing only the doctors within their clinic and unfortunately they only have one nuerosurgeon. So I guess I am stuck for now.

    I am going to request that my PCP send me back to the Rhuematologist I saw last year to get the confirmation for my Fibro. He was completely knowlegable and sympathetic with the Fibro and made my PCP come to terms that Fibro is a real physical illness and to get off her stand that it was just emotional (pretty much read her the riot act) and has been involved with her for my medications from the time he confirmed my diagnosis. I want to get to the bottom of the arthritis in my back, don't want to just settle for it's arthritis, I want to know as best I can what kind it is. I suspect it is OA as my RA blood tests came back negative and my mom has OA badly in all her major joints as did my grandfather when he was alive.

    Thanks everyone for your input.
    Linda B
  8. sh2angel

    sh2angel New Member

    I just had spinal fusion c5/6 and 6/7 so far so good I had the surgery done Jan 9th and the pain in my neck is really much better...they also took the bone from my hip...and I can tell you that is more painful then your neck..my neck really never bothered me once I had the surgery done..Hope this helps...if you have any questions fill free to write...
  9. texasmaia

    texasmaia New Member

    I did in September!

    C4 through C7 due to Degenerative Discs. It was a 5 hour surgery which my neurosurgeon told my husband was longer than usual due to the extensive amount of bone spurs he had to clean up.

    Other than the initial pain waking up out of surgery, (I did request a stronger pain relief and got it,) the pain I had in my neck and shoulders is gone. It used to burn ALL the time!!! I had that pain for 15 years and would just nearly want to die at times. It is gone.

    I used the bone bank so I wouldn't have the hip pain to recover from. Some docs are using a synthetic now.

    I have carpal tunnel also. The symptoms from that have significantly decreased after the surgery, don't know why, don't care, it's not a bother most days and I am on the computer all day with my job.

    I also have 2 lumbar discs that are bad. Terrible Sciatica. Docs said we had to do the worst ones first, (neck) and then address my lower back. So after the surgery I went to the Pain Doc as they wanted to try the shots first to postpone surgery awhile.

    They scheduled the spine injections and gave me Lyrica to take in the meantime. Lyrica gave me huge relief from all Fibro pain. I just wanted to eat all the time and I didn't want to gain any more weight so I quit taking it till I got the shots.

    Well....long story short..had to cancel the appointment and never rescheduled it because the lower back pain is gone most days. If I am on my feet alot, it kills me, but for average days I am good.

    Now ,...I will postpone further treatment on the lower back as long as I can, but the neck surgery really seems to have helped everything.

    It was a HUGE BLESSING TO ME!!!

    I hope I helped somehow. My only problem was waking up and the pain medicine they had me on was what I had been taking prior to the surgery, so it did nothing initially. Once they strengthened that for the first couple of days in the hospital I was good to go.

    My uncle passed away one week after the surgery and I made a trip (back seat of my suburban) 700 miles one way to the funeral, then home. I'd say I did pretty good.

    Blessings,
    Maia
  10. kevieb

    kevieb New Member

    spine fusion of the neck is only supposed to last for about 10 years---then the same problem can happen above and below the fusion. my mother is now past the 10 year mark and is having problems. i think that spinal fusion should be reserved for the worst cases. i get the impression that my mother wishes she had tried physical therapy---but i'm not sure if it was really presented as much of an option for her. remember, a surgeon will recommend surgery for most of what ails you because that is what surgeons do.
  11. jakeg

    jakeg New Member

    I have the same problem and it is very frustrating on what to do.

    Neck and lower back, arthritis through out and degenerative disk disease.

    Pain management doc said vigorous exercise will strengthen the muscles around the affect vertebra.

    What a joke vigorous exercise for some one with fibro, not to mention that I am home bound already.

    I wont be seeing him again.

    I am in physical therapy for it right now and the therapist found that even the slightest exercise is detrimental and makes things worse.

    What's a person to do?

    Take care

    JakeG
  12. obrnlc

    obrnlc New Member

    bump-informative!