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Thread: Pain Post Scoliosis Surgery

  1. #1
    Join Date
    Oct 2006
    Location
    North Providence, RI
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    2

    Pain Post Scoliosis Surgery

    Hi my name is Stephanie and I am a 24 year old scoliosis patient. I was diagnosed with scoliosis at age 10 and put into a day and night brace for 4 years. My doctor realized that my curvage was only getting worse over time and surgery was my only option. At the time before my surgery, my curvage was 54 degrees and increasing at a rapid rate. At age 15 I had the surgery and experienced no back pain or discomfort at all. My doctor got my curvage down to about 20 degrees. For the most part I lived a normal pain-free life. About a year ago I started experiencing extreme discomfort and pain in my back. My doctor who performed the surgery has sent me for many tests and is puzzeled as to the cause of my pain. All of my tests have come back normal. My doctor has said that surgery, to take out my rods, may be my only option. Everyday it gets worse and I am now feeling numbness and pain on the left side of my body. But I really can't live with this pain much longer. I am wondering if anyother scoliosis patients have experienced this type of pain years after their surgery and if there is any remedy other than surgery. I am lost and puzzled as to what to do about my discomfort. Any suggestions or input will be greatly helpful and appreciated!!!

  2. #2
    Join Date
    May 2005
    Posts
    42
    Hi, there!

    It sounds as if it could be the rods, but if your doctor isn't sure I'd hesitate about having them takien out 'just in case'. By now, the bone will have started to grow around them, so it could be a really tricky procedure - it would be worth asking about this.
    It is also the case that the vertebrae that aren't fused have to tke the strain after the op and so do start aching some time later, so it is worth checking this out, too. A lot of people on these boards have found this, but, since your doctor seems baffled about your pain, maybe he knows this isn't the case with you.
    I would ask a few straight questions and get a second opinion if possible.
    Best wishes, Diana

  3. #3
    Join Date
    Apr 2005
    Posts
    913

    Removing rods

    It's really not recommended, even if many doctors still say that when a fusion is solid, they can be taken out and the curve won't come back.

    A lot of people have had them removed when doctors thought the fusion was solid, and the curve did come back. Sometimes if the pain is located, then a partial removal can be done, but that's when the pain is really constant and debilitating(I had that experience). Also, many times bone scans can't detect a non union, so it's best to trust your instinct when you're in pain and the doctor is not always right.

    Good luck.
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

  4. #4
    Join Date
    Oct 2004
    Location
    CENTRAL FLORIDA
    Posts
    21

    rod removal

    hi, Just thought I'd tell you I just had my rods out of the lumbar region after carrying them around for 10 years. No problem removing them. Now I'm pain free for first time since their insertion.
    Has your surgeon taken side-to x-rays? Bending x-rays? Sometimes movement can only be seen when the back is put thru the paces. Good luck
    Jeralyn is Queen!

  5. #5
    Join Date
    Apr 2006
    Location
    Columbus, Ohio
    Posts
    115
    Jeralyn,

    What was your pain like? Just curious...
    Angela
    29 y/o f w/76 degree curve.Surgery done on June 26th, A/P, rods, instumentaion, rib removal- now 18 degrees!!

  6. #6
    Join Date
    Oct 2004
    Location
    CENTRAL FLORIDA
    Posts
    21

    pain was like breathing

    I woke in the morning barely able to stand the pain of staying in bed one more minute and that was after fighting until 4 am to get 3 or 4 hours of sleep by taking enough pain meds to drift off, if I was lucky. I didn't have to sweep a floor or make a bed to trigger pain, it was present 24 hours a day. Sweeping the floor or making the bed just made it slightly worse, until I took the appropriate dose of painkiller to lower the intensity back to normal which for me, "6" was "normal" on the 1-10 pain scale. I never went ANYWHERE without plenty of high octane painkillers to get me out of a jam if I started having severe pain. I could only attend my sons' graduations, ball games, or go out to dinner, or to a movie, with three or four forms of painkillers in my purse for emergency counterance. I didn't take them all at once, mind you, but depending on the level of severity, I would take vicoden, percocet, oxycodone, or hydrocodone. Finally, for the past year I was on morphine round the clock. That brought my "normal" level down to a 3 or 4, but I still used breakthrough morphine for pain spikes to 7 -9.
    Before my pain management doctor put me on morphine, I tried cortisone injections, neurontin, physical therapy, various painkillers for years -there seemed to nothing we could do to reduce my pain significantly. The trouble with morphine is that every 2 or 3 months I had to increase my dosage. Although the pain doc advised me not to have surgery #8, and I had probably visited 3 or 4 doctors a year over the past 8 years in search of one that would take one my "failed back", I knew something was wrong and if I didn't find someone to correct it if that I may end up in the state I was in 1986. In 1986, my ortho, who had inserted a Harrington rod in 1976 as a revision extension to the t2-t11 fusion I had had done in 1969, though he would help me regain the use of my right leg by routing out whatever bone spurs or matter may have been impinging my L5 nerve. I was experiencing foot drop, numbness, swinging my leg to the side to take a step, spasmodic paralysis, all that fun stuff. Unfortunately, he had to interrupt my surgery to find my husband and get permission to do a complete rebuild of my de-fused spine. All the tests we had performed in the previous 5 years of suffering never showed that the entire backbone had become the consistency of crushed eggshell. A week later he fused anteriorly as well.
    For the next 5 years I felt pretty good. I walked about 5 miles a day, but that wasn't the end either, in 1996 I needed several spots of refusion and TSRH rods installed AND the anterior fusions redone. Unfortunately, a screw penetrated the nerve to my right shin and crippled my intra-abdominal nerve. I had difficulty walking, going to the bathroom, & some other stuff. I tried to endure the outcome for 10 years, including the problem that at some point a portion of the rod came loose. Then, I finally found a surgeon who understood how wrong these things can go, and he was brave enough to push aside his fear of liability and give me another chance for a life I was born entitled to, but fate, medical failures, and ignorance made elusive.
    For the first time in 14 years I fall sleep without pain. I know there are alot of people afraid of revision surgery. And it doesn't always work out well. I also know that I am going to do some things in the future that I didn't think I would ever get the opportunity to do- like travel! Who knows what's waiting around the corner, if it's a dump truck I'll be right back to square one, but I'll keep fighting for better days ahead if that happens. The worse days are those when you say " No one cares whether I am suffering, I never did anything to deserve this. I am so alone." Hopefully, this forum will offer a union of souls who feel this despair and can be open and honest with each other and offer hope and guidance. Good luck to you and your loved ones.
    Jeralyn is Queen!

  7. #7
    Join Date
    Oct 2004
    Location
    CENTRAL FLORIDA
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    21

    all that blabbing and I didn't answer your question

    sorry, I got carried away and then some.
    After my surgery in 1996 I had neuralgia in my right shin. The movement of air across the flesh was excruciating. It felt like the skin had been removed and raw nerve endings were being brushed with a choreboy. My ankle felt like it was in shackles lined with thorns. I couldn't cover my leg with a sheet, even in winter. I couldn't wear slacks, stockings, if someone accidently touched my leg I would scream. On the upside, this wasn't permanent. Eventually I got to where I could tolerate certain fabrics for 2 to 3 hours.
    Since the removal of 36 pieces of stainless steel last month that pain is 95% gone. And I think it is fading still.
    Now, that's the good news
    Get ready for the bad, ......sorry.
    During this past surgery they think I may have crushed my pelvic nerves. They are certain this will pass, But I wonder whether it is from the 2 screws they inserted to bind L5 to my hip bones. Now I have neuralgia in my upper outer thigh. It's much more tolerant than the other neuralgia was, but last week I was out and about and got a serious pain in the muscle. Doctor says it was a cramp. [Kind of cramp that felt like getting your big toe ripped off in an excalator.] Fortunately, this hasn't recurred. And 95% of the time I am pain-free, or at least under 3 on the pain scale.
    Jeralyn is Queen!

  8. #8
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Lightbulb For Jeralyn

    There is a helpful forum for situations like yours/and like mine was:


    http://health.groups.yahoo.com/group/Flatback_Revised/

    I suspect you might get good help there.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  9. #9
    Join Date
    Jan 2006
    Location
    Houston TX
    Posts
    288

    Stephanie

    I am sorry that you are having pain.

    I had my rod removed without any complications. That was 5 years ago (15 years after my scoliosis surgery) and my curves have not returned. I knew what the problem was before I went into surgery. I also knew that having the rod out would reduce my pain but not totally eliminate it.

    Since you haven't had pain for about 10 years, and now you do, then something must have changed. Many people experience a "broken rod", but it doesn't always cause pain either. Since all your tests so far have been negative, there is a chance that having the rod taken out won't help your pain. Think second opinion.

    Best wishes.
    p

  10. #10
    Join Date
    Oct 2006
    Location
    North Providence, RI
    Posts
    2

    Wink Update...

    Thanks for all who responded to my inquiry!!! I will be seeing my surgeon on the 17th of November and hopefully we will find some answers to my problems. I will keep everyone posted!!!! Thanks again, Steph!!!

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