Pain with Spinecor brace?

[leigh9p]

Hi all - my daughter, Taylor, was fitted about 2 weeks ago with the Spinecor brace. It hurt the first day, but then she has been fine. She has been only wearing it at night while sleeping. This week she went to 8 hours, but has woken up with pain in her left hip/butt area. It seems to me like a pinched nerve - maybe sciatic. I have a call in to the Dr., but you guys have been there and seen it all. Is this something anyone has dealt with? Suggestions? We we planning to let her not wear it today (which would be the first day at 12 hours) but I wonder if skipping a day just makes the pain worse when you go back to it. Any advice would be greatly appreciated.

Thank you. Leigh

[WNCmom]

I don't have any experience with the spinecor yet and I can't remember if your daughter wore a rigid brace before the spinecor, but when my son began wearing a rigid brace, he had sore muscles in his hip (the same hip) several times--sometimes even my lightly touching the area would hurt him. I attributed it to newly stretched muscles being sore, and in fact, the pain always went away. When he woke up in the night, I'd give him arnica (a homeopathic remedy) and he'd go right back to sleep. I don't know if this is anything close to what you're dealing with, but thought I'd share.

[anwmom]

Hi Leigh,

My daughter is also in the Spinecor. She started with it in June of this year and had a rough transition into the Spinecor. She had been in the Boston Brace and when we got the Spinecor I expected it to be so much easier on her but that has not been the case. She has finally transitioned into the Spinecor during the day, but still can't sleep in it due to shoulder pain and feeling "trapped". She wears her Boston brace at night but sometimes has trouble with that one too.

I believe the Spinecor to be the BEST option for my daughter at this point so I wouldn't change making the decision to put her in it.

My recommendation is this from first hand experience: Have her wear the brace as much as she possibly can. I let my daughter skip a day and it just made getting into it the next day even harder. To make the transition easier, some days when she would wear it for a couple hours and then take a 15 minute break. We would do this on and off until she finally got used to wearing it. Also, my daughter likes to wear it on the outside of her clothes when we are home, but I found that it is much easier for her to decide she needs a break and will take it off than if she put it on under her clothes. Now my daughter wears it all day and for the most part does well.

Sorry for the long response. I just wanted to let you know that even if it starts out a little rocky, it will get better.

[leigh9p]

Thanks both of you. I LOVE long messages I will try Arnica - we put biofreeze on it this morning and gave her an advil. She does wear it on top of her clothes at night. I like your suggestion about wearing it with breaks. I was concerned about not wearing it at all.

[mpj]

Hi Leigh,

My daughter has not really had any pain in her hips. She did have some neck pain at first, but I think it was more like muscle soreness. Madeline always does better when she wears her brace more. In fact, she does not like to take it off, because she dislikes having to put it back on. It is like jumping into a cold pool of water. Once you are in it is fine.

Good Luck

Sarah

[leigh9p]

Hmmm, the Dr. didn't call me back. She tried it again tonight for 30 min. and the pain came back. I'm at a loss as to what to do. I don't know if this is a "getting used to it" thing since she's been wearing it for 2 weeks already, but only 28 hours the first week and 56 hours the 2nd.

[anwmom]

Hi Leigh,

My daughter has had problems with her right arm getting tingly and numb. Her orthotist has made some adjustments and the last adjustment has helped.

Just keep at it...it tooks us a while to get her transitioned.

How old is Taylor?

Good luck this weekend!

Stephanie

[leigh9p]

Stephanie - Taylor is 14. Thanks. I guess it is common then to have some adjustment problems. I guess I just expected them sooner. And, I still don't know if we should keep it off or keep putting it on til it hurts her again. I don't feel like we can make her wear it when it hurts that bad. It isn't numbness, it's pain. I feel especially empathetic I think because I have a lot of sciatica problems myself.

[anwmom]

Ali gets shoulder pain alot. It's such a tough spot for us and them. I want to give in and let her take it off but then I feel guilty and worry that if I let her and then if she has to have surgery that it's because I didn't force her to wear it. It's such a catch 22.

We're dealing with anxiety and mild depression now because of the brace, add on top of that she's not sleeping -- its just a mess. Hopefully with the help of a therapist we get those issues under control soon...it's affecting every aspect of her life. For example, she auditioned for a renowned children's choir and made one of their choirs but the exhaustion, anxiety and depression are keeping her from going. One on hand she wants to go but on the other its too much for her to handle right now.

I know we will get through this. I love having a forum that I can go to for support and to be supportive at the same time (if that makes sense).

[christine2]

Hi
Where did you get your daughter fitted for Spinecor? My daughter has only had some sparadic muscle spasms in her neck . Perhaps you should e mail or call Dr. Rivard in Montreal for advice. I don't think that your daughter should be that uncomfortable. My daughter started wearing her brace 22/7 immediatly after her fitting with no problem.
Good Luck!!!!!!
Spincor is AWESOME

[leigh9p]

Oh, I'm so sorry that Ali is having such a hard time with anxiety and depression. It's enough you have to wear the darn thing, but to have those side affects is so much worse. I would say that Taylor is up and down about it right now. Well, never UP about IT, but her attitude changes by moment. However, she IS a teen so it's hard to tell what's causing what. Is she wearing a hard of soft brace.

She was fitted by Dr. Marinaro from LA. I did reach him today and he said she should go to a local chiro and get adjusted - that there is a lot going on in her back and we should not wear it until she gets seen by a chiro. So that won't be until Monday. So I guess we'll just wait til Monday. I feel like you mentioned about the catch 22 - I don't want her to slow down her progress with wearing it, but he said she won't lose any ground. I did think about contact the Canadian Drs. and I will if it persists, but since they aren't my Drs. I hate to bother them too much.

[Sophiezp]

I'm new

Hi everybody I am the new kid on the block!

My name is Sophie, I am NEARLY 12 years old (my birthday is on Columbus Day, 10/8 [!!!!!!!!!!!]), and I live in Westchester/NYC. I am Chinese, about 100 lbs, and 5'6.5" (which is HUGE for my age, people think I am 16 or something)
I play a lot of sports, includin tennis and swimming. I have been swimming since 3 years old because I had asthma and swimming completely obliterated it from my life.
I was diagnosed with scoliosis on July of this year with a T45 curve and a L30 curve. The doctor referred us to a scoliosis surgeon and he recommended surgery. My family and I, however, decided to wait and see what would happen. In August we got another x-ray and this time my curves were T54 and L35. I was really scared and worried because our surgeon pressed me to have scoliosis ASAP in late September 07.
My mother spent countless sleepless nights searching the web, looking for an alternative treatment(s). Soon she found a man named Dr. Manuel Rigo in Barcelona, Spain. He teaches the Schroth method of physical therapy.
This year I started at a new private school in NYC so we could not go to Barcelona, but my mother e-mailed Dr. Rigo and the kind soul e-mailed her back during his vacation! What a nice person, I would love to meet him someday. He referred us to three people he taught who are currently in the US: Luke Stikeleather in Fairfax, VA, who makes Cheneau braces and Beth Janssen and Patricia Orthwein in Stevens Point, WI, who teach the Schroth method of physical therapy.
Just last week my mother and I went to Wisconsin to see them. They are a truly wonderful pair along with their co-workers Jan and Julyane. It is a great alternative to going to Barcelona if you can'y go to Spain. They even booked us a great hotel five minutes from their clinic, Scoliosis Rehab. Find out more at scoliosisrehab.org
Well, I am back in NY now but I still don't want surgery. If there is anything anybody knows please write on this forum or contact me:

E-mail: sophiezp@yahoo.com
AIM (but I am rarely on): sophiezp888

Thank you so much guys!

P.S. I'll stop posting long messages. Sorry for the inconvenience anyone! (just skip the boring intro parts )

[anwmom]

Leigh,

Ali is in the Spinecor. She started in the Boston Brace in March and then she got the Spinecore in June. B/c she can't sleep in the Spinecor (due to discomfort) she wears the Boston brace at night. Not the optimal scenario, but my belief is it is better for her to be in a brace than no brace at all. Her doctor is aware she is doing this (of course to quote him "I don't give the the Good Housekeeping seal of approval, but it's better than not wearing a brace at all.") She does go to a chiropractor bi-weekly for adjustments and massage therapy. (In April she began three times a week and is now going every other week). She likes the adjustments and the massage.

She is also going to start doing Yoga with me at home. I have been hearing great things about Scoliosis patients doing Yoga.

I noticed a difference in her behavior since getting the braces and it has just declined. Once school started, it became even worse so it has been draining on both of us since the end of August.

[christine2]

Leigh
The Docs in Canada will not feel bothered they want the brace to be used properly so it will succeed.

[leigh9p]

Well, we think it has to do with the bottom part. After testing various straps it came down to that. We loosened it, but there is still some pain. Although she is up to 12 hours now. she did go to the chiropractor and get adjusted, but since she hadn't been wearing the brace, she couldn't tell if that helped. Then after about 20 min. of wearing the pain came back - so guess not.

How old is Ali? Sounds like you are having a hard time too. So hard to see our kids suffer.