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nojobro
25th October 2004, 05:08 PM
First off I suppose I should say that I am very happy with our most recent x-ray results (don't get me wrong about that!), but I am very confused about what direction we should take next.

Bronwen was diagnosed w/ infantile idiopathic scoliosis at age 18 months. Her curve was 20. We started bracing the same week she turned two, as her curve had progressed to 35. Now she is 5 1/2 and has been wearing a brace all that time (3 1/2 years). We have been going to Shriners in Chicago for 2 1/2 years, where her doctor has been Dr. Lubicky. Her curve has measured 25 the last two times we've been there, with Bronwen out of the brace for six hours prior to each visit. Dr. Lubicky, however, has left Shriners and is now at Rush Children's in Chicago. At our last visit right before he left Shriners, he recommended vertebral body stapling surgery. We had been discussing possible part time bracing, but he decided her curve changed too much from in brace to out of brace to recommend that. But because he is now at Rush, we have to get approval from our ins. co. in order to have the surgery done. There are not very many doctors who are doing it. As a part of the process to get this approved with our insurance, we had to see a doctor in our network and he must approve the surgery. So last week, we went to see the doctor here (the doctor we used to see before we went to Shriners). We had an x-ray done without the brace, but it had just been taken off. It measured 12. The doc said he'd discontinue bracing right then, but I balked and said I thought we should at least get one more x-ray with Bronwen out of the brace for a period of time beforehand. He agreed to this, and we went in the next day. Bronwen was out of the brace for about 28 hours before the x-ray, and the curve measured just 17. The doctor is recommending that Bronwen does not wear the brace for three months at which time we'll have another x-ray and based on that, discuss part time bracing at night with the Charleston Bending Brace.

I am not considering the surgery if the curve is measuring 17. (Note: vertebral body stapling is a special, technically still experimental, surgery for curves measuring 20-45; there are other posts on this forum about it if you are interested in reading more about it...it is NOT a fusion surgery and is for specific cases only.) However, I am very confused about what to do regarding the brace. I would hate to stop it completely and have her curve progress, and yet I would hate to keep her in it if she does not need it. I'm at a loss to explain why her curve has gotten better, anyway, as my understanding is that this is not at all typical, especially for a curve that has shown progression in the past.

I'm not entirely happy with the doctor here in town in general; he has a negative attitude about the vertebral body stapling surgery and a very spine-only approach (whereas I felt Shriners and Dr. Lubicky were very "whole child" oriented). I think this is making it difficult to jump on board with no brace at all. Though when I really think about how much we all hate the brace, I think I am crazy! LOL! What is wrong with me, anyway...this is really fantastic news, isn't it?! But I am still leery about being out of the brace completely. Any thoughts? I have left a message for Dr. Lubicky but I am not sure how much input he'll be able to give. Maybe I should call Shriners and make another appointment there for a second opinion. ??

Nola, Bronwen's mom

sins
25th October 2004, 05:55 PM
Hi Nola,
That's a fascinating development for your daughter. Taking into consideration everything that you've been through I can fully understand your reluctance to stop bracing for the three months.However lets focus on the positive.......she now has a very mild curve while being out of the brace for 28 hours.The good news is that she'll be spared a potential deformity.
if possible get your new x rays and send them to your Doctor at Rush and ask his opinion.I'm sure he'll be willing to offer input and if the vertebral stapling can be avoided then that's great.Perhaps he would share the view that Bronwen should temporarily stop bracing.......unfortunately it's the only way to find out.The doctor at least isn't considering stopping treatment, the Charleston bending brace is an option too and might be eaasier as she gets older.
I think seeing as your insurace company is placing you in a situation like this you may have little choice but to go with the recommendation made by your current doctor, while contacting Dr Lubicky to ask his opinion and all the time watching your daughter's back very carefully over the next 3 months.
Sins

Amazed Jean
25th October 2004, 06:29 PM
nojobro, I agree with Sins call the other doctor you had a rapport with tell him exactly what you feel. I don't know what the answer is since I never had anything done. They say that scoliosis is a slippery thing - it changes its direction - it changes its severity. Given that I think you do what you feel in your gut is right. Your daughter is in good hands if she's in your hands. Don't settle for a doctor that puts you off even a little bit. I know the insurance thing is a hassle but explain that to your old doctor, maybe he can help you out. If not - let me say this, do whatever it takes. There isn't any law that says you can't pay the doctor out at $20.00 a month forever. Her back should come first everything else is negoitable. Good Luck and God love ya!

Marti
26th October 2004, 12:41 AM
I live in chicago too! My doctor is Dr. Sarwark at Children's. he's great. i'm curious as to why the doctor didn't suggest trying wearing the brace just at night, since that's what the charleston bending brace would be...

titch
26th October 2004, 06:02 PM
It's great to hear that her curve seems to have improved :-) I can really understand your reluctance though. Perhaps as Martha suggested, it would be worth asking about reducing to night time only in the current brace. That way, if it is still holding after 3 months, you could try removing it then. It's difficult with the insurance issues involved in it all as well.

Sealy
28th October 2004, 09:34 AM
Nola,

Don't listen to that bozo doc. The fact that her curve progressed over a twenty four hour period indicates that her spine is STILL unstable. I've read so many cases of young children who were advised to stop wearing their braces prematurely only to have it progress - they ended up having fusion as teenagers. She has come so far and it would be a shame to lose all that wonderful correction. If it were me, I would keep her in the brace until her spine was without a doubt stable and improving on its own. Her spine is going in the right direction however, I think she still needs help from the brace.