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Where to Turn - Who to Trust!!!

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  • Where to Turn - Who to Trust!!!

    Does anyone have a curve like mine? I have a “S” curve – Thoracic 47 degrees and Lumbar 40 degrees. My pain management Doc. (very sympathetic and understanding) referred me to an orthopedic surgeon for an assessment for bracing and surgery. Well, although it was good health wise I was surprised at the lackadaisical attitude I was presented with. I’m slim about 106lb and have always kept fit. I was surprised that I was told I have no limitations even though, there’s progression. He says bracing wouldn’t work, because of my age, (I’m 42), and I’m not bad enough for surgery, (which I’m hesitant about anyway). He also said, I was on the right track with keeping fit etc. and said, “That if I was fat you wouldn’t even notice the scoliosis.”(If that was so, I would still have the curvatures regardless). I realized I’m quite lucky having the two curves, as they balance themselves out and I don’t look too bent over and have more control over my posture than if it was one curve, but that doesn’t mean I’m not in a lot of pain at times, and also have balance problems along with I have good days and bad days. This Doctor told me that he’s not concerned about my progression because you have to allow for a margin for error. Well what if the error is on the side of worse. Not that I want to think negative, but I guess I want to be safe. I have quite a high tolerance of pain and try no to take meds if I don’t need them. I lost 1 ½” in approx. and year and a half. I thought that was a lot. With today’s technology isn’t there someway of getting an accurate diagnosis, curvature and or rotation?
    I was also surprised to hear that no migraine headache is related to scoliosis nor is shortness of breath, (unless 90 degrees or more according to this doc). Is this so? A chiropractor years ago, told me that my left lung was smaller due to the curve taking up the room. Was he wrong? I was also told that I not only have the “S” curve but my spine was rotating as well.
    I feel like a should get another opinion, but I wanted to see if anyone had any advice or input that they could share with me, before I do.
    I also have a condition called Raynaud’s Disease. I’m told it’s not related (poor circulation to the extremities.)
    Thanks for any input or advice. I’ve been to this forum a few times, and learned quite a bit and saw the support that was given. It’s nice to feel like you’re not alone out there. I find the varying opinions very confusing.

  • #2
    First, you really need to see an Ortho that deals with ADULT scoli patients. Any doc that has "an attitude" is not someone you want to deal with. You may not qualify for surgery yet, 50* is the norm for possible surgery. But I would sure want to develop a relationship with a quailified doc simply to keep an eye on any progression...which appears to be happening if you have lost height.

    The only way to know for sure what is going on with your lung capacity (sp) is to have it tested. Your doc has to write a Rx for this.

    Do a search on this site for a doc in your area.
    SandyC

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    • #3
      Im sorry to hear that you were less than satisfied with the opinion of your referred surgeon. I too had a poor experience with my first surgeon, but stuck it out for a year and a half before I couldnt deal with the pain anymore.
      Almost no adult scoli patients get braces (I'm sure some have tried, but I have never heard of any). This is because studies have shown the the braces are most effective in adolescents when they are in the growth stage.
      Most spinal surgeons wont do surgery until you hit a certain point (most doctors around 50*) and show documented progression. This means from the time you were diagnosed until you decide to have surgery your curve has to have increased.
      I would get a second opinion and a third or even fourth if necessary. Dont stop until you are satisfied with the decision of one of them. Good luck.
      Mandy

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      • #4
        Where to Turn - Who to Trust!!!

        Thanks for the feed back...
        It confirms how I feel, and that's just so important.
        I absolutely love this site.
        It's amazing how a few words of support can have such a positive impact on anothers life.

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        • #5
          The surgeons Ive seen tend to want xrays dating back atleast a few years to decide if it progressing.

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          • #6
            How long have you had this Raynauds Disease? My 15 year old daughter had surgery two weeks ago. We noticed a circualtion problem a few months before the surgery. Her pinkies went numb and white after a soccer game. She also had a numb toe. Once since the surgery her whole hand went numb and white. These episodes only last 15-20 minutes then color and sensation return to normal. I looked it up online after the first episode and came to the same conclusion. I wonder if it could be related to your/her scoliosis. Anyone else have these symptoms? Good luck to you in finding the right road to travel with your scoliosis.
            Kate

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            • #7
              Hi everyone I'm new and thankfully I've stumbled upon this forum.

              I just wanted to say that I also have an "S" curve and I had surgery in 1992 (I was 12...scratch that...I was 11, on the verge of turning 12). Not too long after the surgery I started having circulation/nerve problems (in my hands and feet). I had a second surgery in 1997 to remove part of the instrumentation (it was protruding nearly through my skin), however this didn't alleviate the pain or loss of feeling. I went back to Shriners (in Erie) because of it, and they called in a neurologist to take a look. They ran blood tests to rule out diabetes (for some reason, on the toes where I wasn't getting adequate blood flow, the skin began to form small ulcers) and the neurologist immediately decided that I had Marfan Syndrome based on an arm span measurement. He informed me that I should be 6'2" whereas I'm only 5'10". I informed him that I had scoliosis, so he immediately ruled that out (I can never understand why doctors don't "get together" and discuss these things).

              Anyway, I firmly believe that scoliosis most definitely can be the reason for poor circulation. It makes sense. I agree with Curvy..get as many different opinions as you need to and make sure that they monitor your curves.
              Last edited by Etoile; 04-25-2006, 11:04 PM.

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              • #8
                Curvy- I had similar curvature before surgery (both curves in upper-40s). I had surgery at 14. I think that my doctor decided to do the surgery because it was clear that my curves were going to continue to progress. Why not get another opinion? All the comments on this board makes it pretty clear that treatment can vary quite a bit and is ultimately up to the doctor's discretion.

                Good luck!
                Sann

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                • #9
                  Where to Turn - Who to Trust!!!

                  Hey, everyone. I 've been off line for a while.
                  Breeze, I've had raynauds for about 9 years. Is your daughter cold when she gets her symptoms? I think I have raynauds which is not related to scoliosis (from what I've been told), but I also have lost total circulation in my right arm and left leg when I'm sleeping, and I'm not cold. I think that's the scoliosis, but nothing seems to show on the MRI's.
                  I did switch my GP, back to the Doc. that 1st told me I had scoliosis and got a referral to another surgeon who specializes in adult scoliosis.
                  I definately don't want to jump into surgery, but it would be nice to know someone you can trust, is there for you, just in case.
                  I too, don't understand the lack of communication between Doctors. I also which that they were more up on Holistic approaches, but I guess business is business.
                  I've started using a eliptical trainer for exercise (which has helped the stiffness) and I'm taking a natural product from Omnilife which is helping with the pain.
                  Always listen to what your body is telling you.

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