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Old 6th May 2014, 02:10 AM
Mrs. Krier Mrs. Krier is offline
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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!
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Old 6th May 2014, 06:29 AM
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Amazed Jean Amazed Jean is offline
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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.
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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.
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Old 6th May 2014, 01:46 PM
Mrs. Krier Mrs. Krier is offline
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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!
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Old 6th May 2014, 05:36 PM
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tonibunny tonibunny is offline
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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
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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.
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Old 7th May 2014, 03:28 AM
Mrs. Krier Mrs. Krier is offline
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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!!
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Old 7th May 2014, 05:39 AM
Rod Stewart Rod Stewart is offline
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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
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Old 7th May 2014, 04:07 PM
Mrs. Krier Mrs. Krier is offline
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Default Re: Great news...more questions for veterans ?!

Ed,
I wouldn't say that I'm not ready more like I'm shocked and amazed and how much progress was made in One appointment as I've been going at this for quite some time now. as far as pulling the emergency brake, I don't know that I would ever be more ready or not ready than I am now. I'm always hesitant with new scary things it's hard to say "yes hurry let's cut my back open'! That being said, I think I'm as ready as I'll ever be. I think it may be normal for me to be nervous and have lots of questions but I could be wrong. But thank you for the advice. I am nervous more now about the discogram in 2 weeks! 😒 But glad to be moving forward.
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Old 7th May 2014, 08:10 PM
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Default Re: Great news...more questions for veterans ?!

Wow, things are certainly moving at a pace all of a sudden!
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Old 8th May 2014, 02:04 AM
Mrs. Krier Mrs. Krier is offline
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Default Re: Great news...more questions for veterans ?!

Gilly,
Yes indeed they are! I skipped the part where after the KU specialist i contacted 3 more out of state scoliosis surgeons, they all corresponded with me through phone and email because i was so far. They took my old and new xrays as well as my mri and actually all of them agreed that i needed to do something sooner then later. They found old charts and iv shrunk over an inch amongst other things. Feels good to be heading in a direction for the better, but as i mentioned to Ed i am pretty sure its normal to have anxiety and questions, as well as to be scared. I dont know that that means i should put the brakes on, especially when one of the last things Dr. Moskowitz said was' take your time deciding however i wouldnt recommend putting it out another year" Am i wrong? What do you know about a discogram, or disc ct?
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Old 8th May 2014, 10:01 AM
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GillyG GillyG is offline
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Default Re: Great news...more questions for veterans ?!

It is absolutely normal to become anxious once the prospect of surgery looms, no matter how much you might want it. The older you get, the stiffer your spine can become, making correction more difficult for the surgeon and harder to recover from for the patient. I am always in awe (tinged with just a little jealousy ) at how quickly our young 'uns are back to normal activities after surgery!

I don't have any personal knowledge of the discogram procedure, but this article seems to explain it pretty well:

http://www.spine-health.com/treatmen...gram-procedure
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  #11  
Old 8th May 2014, 02:39 PM
Mrs. Krier Mrs. Krier is offline
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Default Re: Great news...more questions for veterans ?!

Gilly,
Thank you, sounds painful but I suppose necessary. I'll keep you posted!
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