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Neurologist told me Scoliosis Causes No Pain!

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  • Neurologist told me Scoliosis Causes No Pain!

    Thought everyone here on this forum would get a kick out of this....

    I have been having a lot of pain issues throughout the past two years, particularly in my lower back. I have also had burning, tingling, shooting pain for 3 years on the lateral part of my foot and tingling pain in my pinky finger, middle finger, forearm, elbow, and tricep. I have a "S" curve, both of which measure in the fifties. My MRI shows some herniated and bulging discs in my lumbar spine and my cervical spine. Well, this summer the pain was getting worse and worse (I think this is because I am running after a 2 year old and a 4 year old all day long!) and so I went to a reputable neurologist in NYC whom someone recommended to me. During my first visit, when I mentioned I believed the pain is mostly a result of my scoliosis, he proceeded to tell me that scoliosis does NOT cause pain, and then gave me a 15 minute lecture on how one can live until 80 years old without pain! I couldn't believe it! Then he showed me a spine and curved it in about an inch to demonstrate what scoliosis looked like...he wouldn't even look at my x-rays...I almost wanted to jump up out of my chair and take the spine and really curve it like how mine really is to show him! Boy, it goes to show you that these doctors who don't specialize in scoliosis or back disorders really have NO idea! I practically walked out of his office in tears! Obviously, the scoliosis causes me to have poor posture which in turn has caused my discs to herniate and bulge. I have a herniated C5 which is pressing on the nerve root which is causing the pain in my pinky finger and arm. I just couldn't believe this doctor! He flat out asked me what else is going on in my life to be causing this much pain! Has anyone else had a doctor that said scoliosis doesn't cause pain? Also, this doctor prescribed me topamax for nerve pain. Has anyone else been prescribed this? I have done a search on this forum and see that some people are taking Lyrica, which is in the same class as Topamax. I am on my fourth week and so far I don't notice any difference. I have so much pain in my neck I still can't even turn my head to the right. I'm wondering if anyone out there with scoliosis has neck pain along with their back pain.
    Surgery date: June 8, 2010 with Dr. Boachie
    Thoracic curve: 55 degrees, corrected to 25 degrees
    Lumbar curve: 58 degrees, corrected to 27 degrees
    Posterior-only surgery, Levels T3-L3
    31 year old mother of 2 young kids

  • #2
    Hi Jen
    sent you a private message re: other stuff about doctors..

    i have a lot of neck pain/stiff neck...but, i had very bad lyme disease years ago...so i am going to ask one of my doctors to order some kind of xray or mri or something of my neck to see if it is lyme related or scoli related..it has been getting worse lately...then again, it could end up being arthritis related in my case too...

    i never had a doctor tell me scoli didnt hurt, but the geniuses at the great & wondrous sloan kettering cancer hospital in nyc told me my benign tumor in left femur "is not supposed to hurt, that is not what your pain could be from...", etc, etc...bunch of crap, pardon my language...i walked out & wrote to their human resources dept...they sent me half my 650 $$ consult fee that i paid cash for!
    also acknowledged that the particular old coot i had seen was known for being "difficult"....so if a major famous hospital in manhattan can have doctors who pull that stuff, i would expect it can happen any & every where!!!
    but when i run into it now, i refuse to accept it, & it doesnt matter to me how famous or not the doctor is...i spent way too many years hearing "what else is going on in your life" & all those implications from doctors during really awful lyme disease...went undiagnosed for a year & a half while doctors called me "hypochondriac,"...by the time i got the diagnosis, i was in a wheelchair..then the pompous doctors at stonybrook hospital (circa 1989) proceeded to tell me i didnt need pain pills cause "lyme doesnt hurt that much"!!

    guess they havent come very far in all these years!

    keep your chin up..the patients often know more instinctively about their bodies than the geniuses do!

    jess

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    • #3
      Hi Jen,
      Previous to my surgery, I had neck and arm pain. It was most severe in the last three weeks before surgery. One day i got so desperate, because I was stiff and stuck in a silly 's' position. The pain was unbearable and no painkillers worked,so I went to a Chiro. Soon as I walked through the door( I had not told him anything yet or filled out any forms) he says "oh dear we have a serious scoliosis here, lets see how we can make you more comfortable". I was lucky that both my Neuro and Ortho were very skilled in the area of Scoliosis, otherwise I would have hit the roof with comments like that. Take care.
      Vali
      44 years young! now 45
      Surgery - June 1st, 2009
      Dr David Hall - Adelaide Spine Clinic
      St. Andrews Hospital, Adelaide, South Australia
      Pre-op curve - 58 degree lumbar
      Post -op - 5 degrees
      T11 - S1 Posterior
      L4/5 - L5/S1 Anterior Fusion

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      • #4
        Jen,
        My surgeon told me the same thing when I went in to see him the first time. I have a 55* thoratic curve and a 40* lumbar curve. I have been experiencing a lot of pain from the thoratic for the past two years. He said that generally curves of that degree do not cause pain, but when he did an MRI and a bone scan to see if there was anything else that was causing the pain, he determined that I was one of the ones that does experince pain at this level. You are probably just like that. I think you should definately see a scoli surgeion to get a proper diagnosis. Good luck to you.
        Age: 40
        Diagnosed @ at of 11
        Muscle Stimulator for 1 year
        Milwaukee Brace from 1982-1987 47* (center curve)
        (was told would never get worse)
        Surgery November 11, 2009
        Fused T6-T12
        Pre Op 25* - 54* - 40*
        Post Op 24* - 33* - 21*

        Comment


        • #5
          I think the entire medical community agrees that scoliosis does not cause pain. The majority of kids who have scoliosis have no pain whatsoever. If the simple fact of the spine curving caused pain, then everyone with scoliosis would have it. Instead, it's mostly degeneration that causes pain.

          When I've heard MDs say that scoliosis doesn't cause pain, it's usually within the context of explaining that the patient probably has other issues that need to be addressed. In other words, they're not trying to tell the patient that they're wimpy.

          --Linda
          Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
          ---------------------------------------------------------------------------------------------------------------------------------------------------
          Surgery 2/10/93 A/P fusion T4-L3
          Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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