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cello_mom
12-01-2013, 11:01 PM
We have the normal 6 month out of brace X-ray tomorrow. Our last check in was June showing no progression since December 2012. If tomorrow's X-ray shows no progress (please!!) would it be unreasonable to ask to have her wean from this brace? She's 14.75 yrs, menses for 1 year, 41 thoracic curve. What's the protocol?

Pooka1
12-02-2013, 06:41 AM
We have the normal 6 month out of brace X-ray tomorrow. Our last check in was June showing no progression since December 2012. If tomorrow's X-ray shows no progress (please!!) would it be unreasonable to ask to have her wean from this brace? She's 14.75 yrs, menses for 1 year, 41 thoracic curve. What's the protocol?

I wouldn't be surprised if there was still no progression. We have a few people here who got beyond where your daughter is and hung there. It's not crazy to hope.

I think you can ask for a bone age determination (hand/wrist radiograph). That will show if there is any growth remaining. No reason to wear the brace if there is no growth left.

Otherwise, our surgeon had mentioned two years post menses as when he would release my one daughter from post-op observation. I assume that is the growth issue also.

cello_mom
12-02-2013, 10:37 AM
48 degrees. He's referred us to the surgeon.

mariaf
12-02-2013, 10:39 AM
Good luck at the doctor's, Cello Mom!

No question is ever unreasonable when it comes to our kids so I would definitely ask about weaning if there's no progression (fingers crossed!).

I agree that the key will be her bone age.

Again, best of luck and let us know how it goes.

Pooka1
12-02-2013, 11:36 AM
48 degrees. He's referred us to the surgeon.

So sorry. Your daughter should be very proud of herself about trying so hard with bracing.

Good luck with the surgery. Hopefully it will be her only back surgery she will ever need.

Pooka1
12-02-2013, 11:38 AM
48 degrees. He's referred us to the surgeon.

By the way, that is still in tethering range. Tethering is a non-fusion surgical treatment. There must be growth remaining. If successful, your daughter will not need a fusion or at least that is the goal.

mariaf
12-03-2013, 09:14 AM
So sorry to hear this news, Cello Mom. (I think our posts crossed earlier - we were posting at the same time).

While I know this is not the news you were hoping for, remember that most kids do amazingly well following fusion. They are so resilient. If it is just a single curve, her fusion won't involve too many levels and that's a good thing.

And, yes, tethering is an option to consider IF there is some growth remaining. If you would like more info on tethering, you should contact either Shriners in Philly (see my signature) or Dr. Peter Newton in San Diego, depending on what part of the country you live in. As far as I know, those are the only two places tethering is currently being performed.

Best of luck and please keep us posted.

cello_mom
12-03-2013, 02:22 PM
We've scheduled a meeting with Dr. Grayhack at Lurie Children's In Chicago for 12/20 to ask questions, and I am speaking to someone this evening whose child had the tethering last month at Shriner's in Philly. I am hopeful there are options beside the fusion which scares me a lot.

Has anyone here has it done and know the protocol for how they choose it vs. fusion? I am scared of procedures that are "new" or "experimental" and of course we would be across the country from either location.

mariaf
12-03-2013, 02:33 PM
I am speaking to someone this evening whose child had the tethering last month at Shriner's in Philly. I am hopeful there are options beside the fusion which scares me a lot.

Has anyone here has it done and know the protocol for how they choose it vs. fusion?

If you would like, I can put you in touch with another mom whose daughter had tethering a little over a year ago. Her daughter's case was not much different than yours in terms of curve size, age, etc.

Just e-mail me at the address in my signature and I'll give you this mom's contact info.

cello_mom
12-08-2013, 10:40 PM
Following up. She's not in the tethering range at all. Discussed her situation with Dr. Newton's nurse at Raday in SD where they perform this as with her ortho. She's a Risser 4 and her Tri radiate cartilage is closed. They won't consider her with those numbers for any programs. Not even Shriners. Sigh.

Pooka1
12-09-2013, 06:45 AM
Following up. She's not in the tethering range at all. Discussed her situation with Dr. Newton's nurse at Raday in SD where they perform this as with her ortho. She's a Risser 4 and her Tri radiate cartilage is closed. They won't consider her with those numbers for any programs. Not even Shriners. Sigh.

I'm sorry cello-mom. You tried. This is not the end of the world. Your daughter will be a star. :-)