Newbie here...

[4monkeys4me]

Hi,
My daughter was dx w/scoliosis last Sept. with a lumbar curve of 18. She was 12.5, no period yet. Now in March a f/u xray showed an S curve of 20/24. If you look at the first one you can see a slight upper curve, but it was not measured b/c it was pretty small. Anyway, she is now 13 as of Feb., still has not had a period, and is a Risser 0.

She was originally taken to the doc b/c she was complaining of shoulder and back pain. She did a few months of PT and tried non-steroidals. Her shoulder pain did get better but her back pain moved into the lumbar area and has stayed.

My husband and I are both in the medical world and are working with 2 different pediatric orthopedic surgeons. One says to brace at 20, the other at 25, but would be fine with bracing her now at 24. One wants to put her in the Providence night brace, the other the Rigo-Cheneau. We have another daughter who has a back problem from gymnastics (spondylolysis) and was recently fitted for a hard back brace. When I started reading about scoliosis braces I realized that we are very fortunate to have already met and worked with an orthotist who is an expert in scoliosis. We just met with him again and he was really pointing us in the direction of the Providence. Then I reminded him of my daughter's pain. She had actually said she wanted the full time brace b/c she thought it would help her pain. When she said that to the orthopedic surgeon he said he had never had a 13 year old girl want a full time brace and maybe something else is going on causing the pain. She then had an MRI which was completely normal. So when I reminded the orthotist of her pain he said the RCS may be helpful with her discomfort.

I really don't know what to do. I really think she doesn't know what she's asking for and will hate wearing a full time brace especially in the summer at camp. If the night time brace is enough to halt the progression I would rather start with that. I think she is also very worried that the night time brace is significantly more uncomfortable because of the over correction.

Anyone with any thoughts?

[LindaRacine]

Hi...

Welcome!

I agree that your daughter doesn't know what she's asking for. There is the occasional child who doesn't mind their full time brace, and who is therefore totally compliant. I think that's pretty rare however. Once she's in the brace, and the novelty wears off, she'll probably be far less enthusiastic. Especially if the pain doesn't go away.

If I were the patient, I'd probably try another course of PT, selecting a PT who specializes in spine. I assume you know that it can be the pain that is causing the spine to curve. If that's the case, and if the cause of the pain is addressed, the curve may stop progressing, and perhaps even go away.

Good luck.

Regards,
Linda

[michael1960]

4monkyes4me

Welcome to the forum.

This forum is great to get a lot of opinions and different perspectives. I have learned a lot from this forum and I have learned of treatments never mentioned to us by our pediatrician or first couple pediatric orthopedic surgeons.

My daughter is 8 with a 36 degree curve but down to about 30 right now. When she was 7 it progressed from 23 to 36 in about 4 months. The curve can progress 10-20 degrees between 4 month periodic examinations.

She currently wears a SpineCor (flexible) brace to school and sporting activities and a Boston brace at home and at night. Her correction in the SpineCor brace is about 30 degrees down to 18 degrees and down to about 13 degrees in the Boston brace.

I had already made a decision that when she turned around 11 we would go with a Rigo-Cheneau brace. The greatest risk of curve progression are during the years of greatest growth which for girls can be 11-13 (but it can vary). If my daughter was at risk of curve progression I would be cautious wearing only a night-time brace. Plus some of the night-time braces are impractical for wearing during the day so they are limited in how long they can be worn. And if you realize you need a full-time brace you have to go get another brace. You may want to factor in what insurance will cover and what you can pay for yourself when making the bracing decision.

If she is willing to wear it 22-23 hours per day, that, in my opinion, would be the best approach. Maybe the worse case is that she would not wear it during the day while at school, camp, at the pool, etc. but wear it as much as she can. I have seen some Rigo-Chenau braces have some significant correction. The success of a brace is very much dependent on the amount of time it is worn.

I wished we would have started full-time or near full-time bracing when my daughter was only 23 degrees. Once the curve reaches the mid 30s it is harder to bring it down, it is much better to just keep it from getting there. With the proper wearing of a brace you may be able to stop any progression, and with any luck, get some curve reduction. My personal recommendation is to brace as much as you can and keep it where it is, keep it out of the 30s. The risk of curve progression increases when it hits the 30s.

Also, I would recommend that at some point you begin to research some of the less invasive surgical methods because some of them are only available while the curve is less than 35 degrees (VBS). I know you do not want to think about it, but it helps to know the options because it may influence your bracing decision. My daughter going from 23 to 36 missed VBS that is recommended for curves below 35. Now she is in the brace trying to get back down between 25-30, where the doctors want her to be considered for it again.

Also, have you discussed a genetic test (scoliscore) with anyone? I think it is used for 9-13 year olds who have had no prior scoliosis treatment (there are some other criteria too). It is usually recommended when a child is first diagnosed with scoliosis. But it is able to predict curve progression. If you daughter has a very high score then bracing will be recommended full-time. If the score is very low, then part-time bracing may be enough.

I hope this is helpful. Please let me know if you are interested in any more information on bracing, scoliscore, VBS, etc. I can quickly point you to some articles and videos that I would recommend viewing (vs google searching).

Sorry that I have not addressed any of your points regarding pain, but wanted to give you my input/opinion on bracing, etc.

Also, make sure your pediatric orthopedic surgeons specialize in scoliosis. There are many many treatment options (and opinions) regarding scoliosis. You want to be working with someone who works primarily with scoliosis patients, preferably JIS and AIS patients.

Michael

[twinsmom]

Newbie and Post Surgery Questions

Hi, i am a mother with a set of identical twin girls. Scoliosis and Kyphosis run on both sides of the family, with my mother in law having a terrible times as she aged. My two older daughters have it as well but surgery was never an option for them. My sister in law had a spinal fusion a long time ago with complications with lasting pain. Her mother had a fusion as well in her 80's with pretty bad results so we were very well aware of what could happen.
One twin was never seen - refused to go until her sister started to have problems with pain, clothing, and sitting in school. She went in the next month and was 10 degrees greater then M had measured for weeks earlier, M was measured and had the same measurement. This was scary and the doctor reccomended surgery before age 18. This was from a MD trained in the surgery and from a good hospital. We didn't feel the need for another opinion we liked him alot. So we went for a same day surgery sooner rather than later. They did well although they didn't follow through with rehab. They did play soccer. Above average players they managed to play average ball.
M was hit three times in the back and sprained her ankle twice. But she is fine and no broken anything. Later on that year her sister complained of back pain. I didn't pay attention because PT had been reccomended for both again. On the return visit, They found her insturmentation a hook was getting loose. Said we could keep it in or get it out. Maddie said wait. So we waited until after 16th B day. Two days before the surgery blood work should really high blood work showing infection. Doc went in and not only cleaned out area but added another inch to the spine. She had begun to look funny with her back and shoulder. Also had pain going down her spine. ID showed up and said the hardware would have to be removed probably sooner rather than later. Infection was P acne which forms film on hardware. Most research says get it out. We almost had surgery but surgeon was reclunctant due to the cervical healing process. Second opinion also said out. Maddie wants to wait so we are waiting. She is on high high levels of antiobotics doing much better than after she was discharged. Meds will be d/c after mid June. Did we do the right thing? She is still at home- surgery in Janaury and on narcotics for pain. HAving the surgery in June will mean the third year in a row she will have missed multiple months in school. Thanks for any help!!!!!!!!!!!!!