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48-year-old with chronic and constant pain from scoliosis

AnonymousUserAAnonymousUser Posts: 51,464
edited 06/11/2012 - 8:25 AM in Scoliosis
Hi there! Sorry for the not-very-cheery subject header!

I was diagnosed with scoliosis when I was 12 and wore a Milwaukee brace for 4 years. For the last 20 years or so, I've had problems with my back. For the last 3-4 years, I've had chronic and constant pain, no matter what I do. My curvature is 50 over 35. I'm looking to connect with other people dealing with this type of pain, considering surgery, and any other pain management options.
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Comments

  • Hi Zumba girl,
    I'm a man, 57 and I live in Britain and have been suffering with scoliosis for many years, more over the past 15 years.
    I havn't worked for the past 5 years living off benefit, I think I am more than justified with claiming benefit after paying into national health for about 40 years and now I need help, but cannot get it.
    The changes in Britain are that everyone has to do some kind of work. I don't mind at all and it would be good to get out of the house and be useful. But I cannot do many things and I am really scared I will have my benefit stopped and then loose everything I have worked really hard for all my life. I've seen a surgeon and she was very unhelpful saying I was too old for any surgery and when I said I didn't work was very indignant against me.
    I hate this kind of unjust thing against me cos sometimes I cannot move at all and lay on the floor there where-ever I am when the pain comes on and I lay there wishing I was dead cos I cannot stand all this anymore. I was born with it I don't want it and have tried my best for over 15 years for help off the health service, but I think they just fob me off all the time.
    I am a genuine case and I am not a lead swinger that doesn't want to work. I want help to stop my disability cos I am in pain all the time in various degrees for being able to stand it or just collapse where-ever I am, even in the street if I step off the pavement a bit too heavily.
    I am also sorry for this downbeat blog but I hope it may help me feel better.
    God bless.
    Swampboy.
  • I had the same story, numbers and all. I had my spine straightened 9 levels and donor bones. it was a major 12 hour ordeal. I am not totally recovered yet. The original pain is gone, but I have new pains, plenty of struggles and my lump is gone. This op is not for the weak, or meak it is tough, really tough, but worth it if you can handle it.It has been 1 year, I suuppose at 2 years it will be vastly improved.
  • 8> :H Hi, I am a new member who is very interested in talking to others with spinal problems. When I was age 7, I was told I had scoliosis,but back then I guess that nothing was done. Now at 45, I just had lumbar discectomy and fusion in Dec 2008. Still in pain, now they want to go back in and do L1/2 because that looked really bad during the surgery. They didn't fix it due to the amount of work required. I have also had fusions at C4/5 5/6 and 6/7, and just found out that C4/5 fom 3 years ago, has never healed, has no bone and must be re-done. I have not worked for 3 years,and take 4 anti-depressants and Xanax to mentally deal with all this. Luckily my husband is super supportive. Would like to know what others do to cope, or if any one is in similiar condition. I am on oxycodone,fentanyl patch,and the xanax to control pain. Glad I found this site, helps talking with others who understand. If I can be of any help to anyone else, please contact me. Thanks for letting me join this forum.You can e mail me at:
    donnajeanmcwhite@yahoo.com Also would like to hear from anyone with Reflex sympathetic dystrophy (Chronic regional pain syndrome)as my left arm was diagnosed with it.
  • I wonder if bracing would have helped me at age 13 (1973), however, my mom said I was being silly & picky for thinking I looked "crooked"... I am now 49, and due to my 50 + degree scoliosis, I now have 5-6 herniated discs... I am in constant pain, yet I love my job... I help folks ages 16-70 earn their GEDs... I am currently taking 120 mg.s MS-Contin per day, yet still am in pain... Pain mngmt. docs refuse to up that limit or help fill out a form to help my insurance pay for Provigil which would help keep me alert from the morphine I must take...
    I am on the wall considering surgery, don't want to leave the work I do!
  • who are afraid or been told they are too old for surgery. I guess there are many things to be considered, including bone density. But I was 2 months short of my 58th birthday when I had my surgery and it has gone very well. I am pain free and can do almost anything except cut my own toenails! My advice is always to keep searching for the right surgeon, one with tons of experience - mine does 2 scoli surgeries a week - and don't give up. I know, easier said than done. Good luck!
  • ~X(
    I am 48 years young but feel like my back is 90. I was diagnosed with severe scoliosis at age 9. My most recent x-rays in 2002 show the worst curve at 67%. I can't hold a full time job anymore. Right now i work part time...5 hours a day for 3 days and then spend the rest of my time recooping. There are days where I can hardly make it from my truck to the house after getting off work. I've been on so many pain meds through the years and few of them work. I've been red flagged at the E.R. as a "drug seeker". I've been on numerous anti-depressives as well. I don't know what to do anymore! I spend most of my time in prayer. I have applied for disability twice and have been turned down. This is without a doubt the most difficult time in my life. I am trying to find information on spinal cord stimulation with scoliosis patients.
  • Sherilyn, this may be a silly question but have you seen a surgeon specialising in scoliosis?
  • At age 13, my scoliosis started to show. Mom told me to stand up straight and I would tell her that I WAS standing up straight.It all went untreated, but I noticed over time that I seemed to be tilting to the right more and more.I'm in some pain from this a lot of the time in my upper back; Not much seems to help and activity brings it on. I have to work, but sometimes it's hard to get through the day, even with meds. I'm 54 years old and the doctors mention the scoliosis, but seem to think it doesn't cause pain.
  • I had two Harrington Rods placed in my back in 1976. I've had back pain for as long as I can remember. Eight years ago one of the rods was irritating a nerve, so I had them both removed. Five years ago I found out that I have arthritis in my lower back due to my scoliosis. Nine months ago my left leg started going numb if I stood too long or walked any distance. My left leg actually buckles. It turns out that my problem is very common in older scoliosis patients. I went back to the doctor's office where I originally had my first surgery. Their suggestion is to fuse the last two remaining discs by going in through my abdomen. Those two disc have been doing all the work for all these many years and are completely worn out. My pain has gotton so severe that I have to take pain pills. I am trying to find anyone that has had this procedure. My doctor tells me that this is a common operation and that it will eleviate a lot of the pain. I just need to know if the operation has actually helped anyone. It sounds so wonderful, no more pain. When I had my first surgery, no one told me that I would have all these problems later on in life. Maybe they didn't know way back then.
  • well all of your stories sound very familiar
    I had the brace for about 2 years
    Began to have trouble sitting at a desk in
    my mid 20's but that was just the beginning.
    It got worse and worse. I thought I could
    tough it out. Then a few years ago, I thought,
    as soon as we pay the house off, I'll have
    surgery. My back had other ideas.

    It completely went out on me last Oct. My Dr.
    said this is it and sent me to the surgeon.
    He operated on me Feb. 24 th of 2009. I had
    a 360 fusion, from right below my shoulders
    to my tailbone, he went in through the front
    and then through the back, removed a rib &
    did a discectomy. I was in the hospital over
    3 weeks and also spent 8 days in a rehab
    hospital.

    I am stronger than I was a few months ago. I
    have nerve damage on my left side, the surgeon
    said he had to make such a deep incision. The
    truth is I waited way, way too long.

    My spine was pushing my diagrahm out of place,
    that's why I was short of breath. The summer
    of 08 my left ankle and leg started hurting.

    The surgery and immediate few months afterward
    were just horrible. I did have a very severe
    case though and like you guys, my curves, I
    had 2 - were bad. They were corrected to an
    acceptable degree, the best they could do.

    I have a lot of pain, low stamina, weakness -
    but I am stronger than I was. I hate to say
    it but one of the most exciting things, is
    to go shopping, buy a sweater or just anything
    and look in a 3 way mirror.
    I bought a beautiful fitted trench coat and looking
    in the 3 way mirror, the back of it was hanging
    totally straight. The last year or so I had been
    buying larger clothes to go over my - I called it
    my lump, it was actually my back starting to grow
    sideways - like off my left side, where the worst
    curve was. Nothing fit right. But now, my shoulders
    are so straight, the tilt is gone.

    They told me my ribs would have eventually pushed
    my lung out of place & would probably puncture it.
    Also, that my spine was before much longer, going
    to start pushing my heart out of place. This was
    very serious and I was so foolish to wait. I was
    49 when I had surgey 9 months ago. My surgeon
    said I would always have some pain & also, yes,
    I have nerve damage but he said what I have lost
    is nothing compared to what I have gained.

    I never realized it was a matter of life or death
    or quality of life, I just thought I would have
    the surgery when I was ready - well, it didn't
    work out that way. I still am weak, I still hurt,
    I will never be able to really bend over or do
    lots of things, I still cannot drive but the
    surgery is over. I'm stronger, and wiser - I should
    have checked the surgery out with the MRI's and
    scans & XRays - not just visited with my regular
    doctor about it. I just didn't realize.

    Sorry for the long post - but I've just been through
    it and thought I'd share. One thing I noticed I can
    do, Is sit in the chair at the salon and have my hair cut & colored without feeling like I was going to scream in pain - an hour without moving around before surgery was impossible. Good luck to all of you struggling with decisions about surgery, susie
  • tsback, scoliosis surgery has improved in leaps and bounds in the last 10 years. Surgeons still have to toss up about those last two levels, do they leave them alone for flexibility or do they fuse them so they don't have to do all the work in the years to come, often necessitating extending the fusion.

    Harrington rods were all they had back then. It was the beginning of fusions with hardware. Lots of people who had themm had problems and needed them removed, causing the curvature to return. You did well to cope as long as you did. My advice would be to see a surgeon with plenty of experience in revisions. Good luck!

  • Susie, you had a very big operation and it could take 2 years to be fully recovered. That's what my surgeon told me. I've heard that some patients say it takes 3 years. So it's still early days for you.

    Of course, the younger you are when you have this surgery, the shorter the recovery, but at 49, you are by no means too old. I know two women in their mid-late 60s who had it and though their recovery was long and hard, they call it a success. Everyone recovers at a different rate. If your surgeon is following up on you and says you're fusing and the hardware is where it should be, you will find life gets better with time. As you've found, you can manage the hair treatment now, that used to cause you pain. One day you'll be standing in a queue and realise you're not in pain. Slowly but surely, life gets better. Don't lose hope.
  • Hi JenG
    I have scoliolis and am seeing a surgeon in Brisbane about an operation. Mine will be the whole lower part of the spine from the ribs down. It will be day long surgery and is scaring the daylights out of me. Could you tell me the name of your surgeon as I don't feel comfortable with mine. He does not answer my questions and when I ask am I ready for it he just says you tell me that. If your pain is bad enough then have it done, but the risks are enormous.
    I also have arthritis, osteoporosis, the bones of an 110 year old. I have fibromyalgia, sweets syndrome, arachnoiditis, spondylitis, & a few other non related problems. I am 67 & walk with a walking stick. I had a laminectomy in 2007 which did not help & I have been told after by several surgeons it should not have been done. I take daily 3x60mg of MS Contin plus 8 Panamax, 2xTegretol 100mg, Endep 50mg, 2xValium 5mg plus others for various conditions. It is a deadly amount of drugs & cannot take any more yet still I have pain. No way to live.
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