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Thread: Great news...more questions for veterans ?!

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  1. #1
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    Default Great news...more questions for veterans ?!

    Well, I am not sure if anyone remembers or not but in March I Saw my first specialist "double curve, 52, 36 degrees" from KU med center and I was HIGHLY disappointed! Basically I was told I was fine, stay thin and keep working out.

    Today I saw Dr. Allan Moskowitz in Wichita Kansas and I was blown away at how thorough he was. I was measured in more ways then I thought possible, over 25 new x-rays done in over 15 positions, and over an hour spent discussing various things in grave detail!

    He basically explained that this is not going to stop or fix itself and I am progressing at 2.75* a year and we need to stop the progression. He said the sooner we stop it the better results I will more then likely have, that he can correct at least 50% and that decreases 10% yearly. My husband then asked what he recommended and he looked at us like we asked an insane question, and responded "She obviously needs an operation" ironically it was gut wrenching but felt amazing to know I wasn't crazy!!!

    Now...my questions. The first specialist said that due to the degeneration in L1-L5 primarily 4 and 5 there was NO way I would benefit from a fusion. Dr. Moskowitz says he needs to test the disc, if indeed its bad itll be taken
    out and a spacer used? What all does this mean? And secondly, I have a "discogram" or "Disc-CT" scheduled in 2 weeks. I am TERRIFIED of this! I read the most awful things about this test!! How bad is it that I am more afraid of this test then the surgery "for now"!!!! Thank you for any advice!
    Krier

  2. #2
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    Default Re: Great news...more questions for veterans ?!

    The first guy - was he a spinal specialist or scoliosis specialist? Forget him! I think it sounds like you know what to do. Do not let it go too long. Lung capacity diminishes rapidly.
    I am 61 years old and the resident SSO fossil. I live in Oklahoma,USA with my husband Allen. We have one daughter Jae and she has three kids.Our grandkids are: Aidan is8. He's the one pictured in my current avatar. Jenna Jean is 7 and Ryan Allen is just 4 It's full time chaos here! I was diagnosed in 1965 at 14 years with Kyphoscoliosis and 2 curves measuring 68 and 63 degrees. My last measurements were in 2004 at 155, 88 and 55+ degrees. I have never had surgery or bracing so I now am on full time oxygen and use a Non Invasive Ventilator at night. at night.

  3. #3
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    Default Re: Great news...more questions for veterans ?!

    The first guy from KU med was indeed a scoliosis specialist however am finding out that he prefers children opposed to adults as their bones are easier to manipulate. I am now well on my way to a fusion, scares me to death but even scarier is my future without it. I'll have more details after this disc-ct, or discogram. I have heard it called both. It's in 2 weeks! Looks very painful, having a hard time talking myself up about it!
    Krier

  4. #4
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    tonibunny is offline T Sr: Admin, Big Sister and Da Police!
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    Default Re: Great news...more questions for veterans ?!

    Hi Mrs K,

    If your curve is progressing as it is then most surgeons would advise surgery at this point I think.

    I'm very confused by your surgeon saying that your correction will decrease by 10% yearly - does he mean get better or get worse? In either case it's an odd thing to say; you can't straighten out further once you are fused, but neither should you expect to lose that much correction! A little "settling" occurs following the surgery, but once you're fused your spine should stay where it is. I would get this clarified as soon as you can.

    Removal of the disc and replacing it with a spacer (to restore the height lost from the missing disc) and then fusing that level is pretty standard treatment for a badly degenerated lumbar disc, whether you have scoliosis or not. It's odd that your first consultant didn't suggest this. Your current surgeon sounds much more on-the-ball. Please don't worry about the discogram; in my experience they are uncomfortable rather than painful.

    Hope this helps
    37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.

  5. #5
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    Default Re: Great news...more questions for veterans ?!

    Toni,
    Maybe I didn't quit explain that correctly? He meant that every year I wait I loose how much he can straighten it. Does that make sense? I was going 100 mph I am sorry. It was crazy talking to him, like I said it was like "wow I am not crazy" ha! The upcoming test very much so worries me because with my last baby 4 tries for the spinal, it was an experience I'd never wish on anyone so I think in my mind that's what I am thinking. Thank you for replying about that it did feel good to hear. The worries that flooded in hearing "yes you need a fusion" has been overwhelming! When I asked about loss of movement afterwards he replied that as of right now I don't have full movement, that I am not using all of my spine? Who knew! And that it would be very little, but he needs to determine the discs condition because he may have to extend the fusion into the lower area which would be towards my pelvic???? And that would cause slightly less movement??? It's all crazy to me, he wants to schedule as soon as the test is done and "flexibility x-rays are done"? Again. ...greek to me! Thank you again!!
    Krier

  6. #6
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    Default Re: Great news...more questions for veterans ?!

    Quote Originally Posted by Mrs. Krier View Post
    It's all crazy to me, he wants to schedule as soon as the test is done and "flexibility x-rays are done"? Again. ...greek to me! Thank you again!!
    Krier, If your not ready in your own mind, pull the emergency brake up. You donít want to get routed into surgery if you are not comfortable. All your ducks have to be in a row.

    This is serious surgery......

    I did cancel once in 2005 because I wasnít ready. My surgeon was ready but I wasnít.....

    Ed

    55 yr old male
    T70 L70 double trouble
    A/P T2-Pelvis BMP Jan 2008

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