Newly Diagnosed - First post - 13 year old girl with AIS

[titaniumed]

It has been extremely emotional for the family to deal with this situation and we are doing everything we can to keep a brave front while we deal with this situation.

Initial reactions to a scoliosis diagnosis can be a scary, heartbreaking thing.....Our minds whirl with questions of the unknown(What is going to happen?) while we are in shock, then after a while we do calm down, we do, and we accept our situations after time passes. Try to remember that its nobodies fault, these things happen. Learn to breathe to control anxiety.

Your daughter has a 40 over 50 at age 13....it’s a good size curve for that age, some are way worse and some are not. Dingo’s boy was around 9 years of age with a 10, and nipped it in the bud, nice to put the fires out at an early stage....Please remember that curves have errors in measurement due to many factors(+/-5°) so I simply round numbers. Progressing from a 38 to a 39 isn’t worth too much worry and worrying and stressing the little things isn’t good for the health.

She needs to be seen by a scoliosis surgeon. Not just a regular orthopedic, scoliosis surgeons go through extensive training, and it should be done at one of the known scoliosis training centers. HSS, TCSC, UCSF etc....I did consult with a “regular” ortho years ago and he was honest enough to back down, at least he had some integrity. Initial selection of your surgeon regardless of if you do surgery or not, is very important. My surgeon trained for 19 years and came out of Twin Cities Scoliosis center which was where the SRS was founded, in Minneapolis in 1966. Direct all of your surgical and scoliosis questions to your surgeon, these guys can rule out things that others will miss.

There are some really knowledgeable people on this forum and I’m sure many will chime in after recovering from Thanksgiving dinner....Sometimes I wonder if this recovery is worse than scoliosis? (smiley face)

Deep breaths.....and welcome to the forum

Ed

[Pooka1]

Hi Sam. I am sorry to hear about your daughter's diagnosis. It's like a ton of bricks. I'll try to answer your questions but I hope others do so also.

1. What else I can do to try other non-surgical routes? Is there any danger in trying all of the above simultaneously (Yoga, Schroth and Medx TR).

In terms of what to try, do you mean all available treatments or just treatments shown to be effective? In re simultaneous treatments, nobody know the answer to that because it hasn't been studied. For something like TR, only 35 people in the world have been studied for example and it certainly hasn't been studied in conjunction with other PT.

2. How to meaningfully measure her progression without getting x-rays in short intervals?

That's an important question. There are low radiation and no radiation imaging techniques but I am not sure where you can find them. Ask your surgeon.

3. I read about Fibrillian-1 and Fibrillian-2 gene mutations as potential causes for AIS and is there any hope for gene therapy (which is probably too late for my daughter).

Did someone mention Marfans to you? There is a genetic test for this but there is about a 10% false negative so Marfans can't be ruled out with it. But scoliosis associated with Marfans is only a small percentage of AIS. If someone is working on gene therapy for Marfans I'd like to know about it. I doubt it.

4. If her curve progress and situation gets into surgery territory, should we consider doing it now versus six months from now or a year later etc so it would not become very difficult surgery.

With a TL curve, my immediate question to the surgeon would be how low the fusion will go if you do it immediately versus if you wait. There are surgeons who operate on TL curves below the 50* trigger for the sole purpose of saving levels in the lumbar. This matters because it might mean the difference between only having one fusion surgery in her life versus needed a second that goes to the pelvis (fusing all the lumbar). Only a surgeon can answer that. Your daughter is Risser 0 so that is going to matter in terms of avoiding crankshaft. Again, you need to ask the surgeon.

5. Should we get an MRI now to rule any other causes of scoliosis, one of the Orthos suggested since she said we will do one before a surgery (she was assuming we will go for one soon)

One of my daughter's had an MRI and the other didn't. The reason was the extremely fast progression rate.

Good luck going forward. This is fixable. Some things are not so there's that.

[saminD]

HI all,

We found out about my 13 1/2 year old daughter's AIS scoliosis last month with an S curve (38 degrees right thoracic and 49 degrees thoracolumber per the official X-ray report though surgeons gave slight variations of this measurement still within 5 deg error range). The doctor said her Risser sign 0 as she just started her Menarche at the end of September and so we are afraid the curve progression would get worse.
We met with 3 Ortho surgeons and all are of the opinion that she is close to surgery range (above 50 degrees) though 2 suggested trying Boston brace, which is coming soon.

I want to try all possible non-surgical options before we consider surgery.
We met with PT where they had Medx TR equipment and I gave her the Dr. Mooney research paper to review (along with Dingo’s list of exercise he uses with his kid) and suggest a good routine to try for us. As my kid does not have any pain right now, she was having hard time justifying a routine due to insurance reasons. She is reviewing and will get back to us. I am having trouble finding an expert in this area who could guide us to ensure we do the exercises properly and not cause harm. Any help from forum experts is appreciated here.

We also met with Schroth trained PT and starting few sessions starting next week.

We met with a Yoga teacher who trained with Elise Miller (Yoga for Scoliosis DVD) and she gave some initial exercise to try which we have not started yet.

It has been extremely emotional for the family to deal with this situation and we are doing everything we can to keep a brave front while we deal with this situation.

I got few questions and appreciate forum experts responses:

1. What else I can do to try other non-surgical routes? Is there any danger in trying all of the above simultaneously (Yoga, Schroth and Medx TR).
2. How to meaningfully measure her progression without getting x-rays in short intervals?
3. I read about Fibrillian-1 and Fibrillian-2 gene mutations as potential causes for AIS and is there any hope for gene therapy (which is probably too late for my daughter).
4. If her curve progress and situation gets into surgery territory, should we consider doing it now versus six months from now or a year later etc so it would not become very difficult surgery.
5. Should we get an MRI now to rule any other causes of scoliosis, one of the Orthos suggested since she said we will do one before a surgery (she was assuming we will go for one soon)

Thank you all in advance for your time and responses. If I missed providing any additional information that would help to answer a question, please let me know.

Thanks.

-Sam