spinecor

[cherylplinder]

Rachel needed to be taken back in September. She had a growth spurt right after her appt. At the least, if this happens and straps are not what you're used to, send photos and call.
I'll always wonder what would have happened if I had.

[emarismom]

Jill,

Emily was diagnosed in Sept. 2004 with a 28 degee curve. She was 5 years old, so immediately an MRI was done since curves of this range are generally not found in children that young. She was found to have a Chiari Malformation and Syringomyelia (cysts inside her spinal cord). This is the cause of her scoliosis, she is not an idiopathic scoliosis case.

In Nov 2004 she had brain surgery to correct the CM/SM. The hope was that the scoliosis would stabilize or improve after the surgery. Thankfully, it did. For the last 3 and 1/2 years her curve has stayed in the 17-24 degree range. None of the doctors I have seen recommened bracing her yet as they wanted to see progression before any type of treatment (if we can call hard bracing treatment).

However, when scoliosis related to Chiari does progress, it tends to be harder to control with bracing than other forms of scoliosis. Because of that, and the fact that Emily was getting older (she just turned 9), I decided to get her into a Spinecor to try to be proactive.

As for the Chiari/SM, she has never had any symptoms from them except the scoliosis. In some ways the scoliosis was a blessing, as it led to the diagnosisof the underlying cause. Left untreated, she would have faced almost certain neurological damage as she got older.

By the way, according to the Ped. Ortho.-he has been with us since the start of this journey when she was at 28 degrees- Emily really has not progressed at all because she is still not where she was when all of this began. Ya think he was trying to make me feel better!!

[RugbyLaura]

Thinking aloud about the whole washing question.... It is important to wash the brace once a week at a temperature sufficient to "shrink" (my word - probably not a good one) the elastic back to the correct size. If this is not done the brace will not be as tight as it's meant to be.

Hope all Spinecor users are well. It's gone very quiet here without Cheryl & Celia. Please don't give up on this marvelous brace. I am extremely grateful to the makers and to everyone on this thread for bringing it to my attention. If this had not happened Immy would be wearing a hard brace, not dancing and having a completely different lifestyle. If the best that Spinecor can do for her is to put off surgery while allowing her to enjoy her childhood - I still think it's the very best that I can do for my child at this moment in time.


Love to all & Merry Christmas (again!)
Laura

[WNCmom]

Laura--

I'm still here! And very grateful for Spinecor, too. Sidney is much happier in it than in the Boston brace.

And I so appreciate this forum and this thread.

Merry Christmas to everyone--I'm off to Vermont for the holidays and will be without email; see you all in the new year!

Mary Ellen

[rtremb]

I am still here too - not much new to add right now and a bit busy with Christmas preparations too.

Esme's dent in the lumbar area seems to have mostly disappeared again especially after today's structural integration session which straightened her back and her little rib hump quite a bit. She certainly loves these treatments - they eliminate a lot of her back pain. She describes it as feeling like it is "opening up" her back - maybe because her back is so tense and the treatments loosen it up.

Anyway, Merry Christmas to everyone. Thanks again for all the advice and support.

Ruth

[jillw]

Ruth, I"m glad to hear the dent has mostly disappeared! So the SI she has is similar, but not the same to Rolfing?? I have read that Rolfing can be a bit uncomfortable, but it sounds like this one is not? I forget, wasn't it Esme who was in a really good mood the day after the first session? Does she still get that happy feeling after these other sessions? How long does it last (of course ignore the questions if I had her confused with someone else!)

Happy Holidays to all! We're in that rush mode right now....

[rtremb]

Jill:

It was Mary Ellen's son who had the good feeling. SI is the same as Rolfing. Esme's therapist was trained at the Rolfing Institute. The SI is uncomfortable at times, ticklish at other times and feels really good at other times. Esme does not get bruised though (as our paediatrician suggested). The "massage" is deep sometimes which is why it can be uncomfortable but the theory is that years of tight fascia are being released. Any discomfort is very temporary and Miranda stops right away if Esme says it hurts.

Esme is very tired after the treatments and usually falls asleep in the car on the way home or when we get home. She is a bit of an emotional wreck for a day or so afterwards too. She has really big highs (laughter and high energy) and really big lows (outburts of anger and lots of tears). This tapers off though after a day or so. The rolfing books say this is to be expected.

The SI is said to have long lasting benefits to posture. I guess only time will tell if this is the case for Esme.

Ruth

[emarismom]

Merry Christmas! I hope that this new year will bring you all the hope and peace that we want for all of our children. Happy New Year!!

[jillw]

Happy New Year to all!

I was just trying to remember, does anyone have a spinecor check up coming up in the next month or so?

Ruth, that's interesting about the mood swings that can happen post Rolfing session - do they say why that is? (I seem to recall reading something about it decades ago - but I can't remember what they attributed it to). My daughter already has swings without Rolf, I wonder what she'd be like with Rolfing! I am hoping to find an experienced practitioner near us in the next month or so (initial searches uncovered names that appeared to be pretty novice- we don't live in a big market so I may have some trouble finding somebody; we'll see)

[christine2]

Happy New Year

We have a re check in February - no date yet- we are hoping for the week of our Feb vacation. I will call next week to see if we can book an appt.

[braceguy76]

update on your daughters progress

Dr. Deutchman is the one who fitted Nicole and he is considered to be one of the best in this country. People travel from all over to get fitted by him because of his expertise. He has an office in N.Y. city which is only a one and a half hour trip by train for us.
Dr. Deutchman was both surprised and pleased when we did the x-ray in Nicole's brace. Unlike the hard brace, you don't achieve anything near a 50% reduction in the brace. It usually only shows about a five degree reduction, I think. However, Nicole went down something like 14 degrees in the brace. I don't know if that means anything as far as likelihood for success. We will not know if it is working until at least Christmas when we get the x-rays without the brace.
In addition to 10 hours of dance per week, Nicole does specific stretches on a ball and standing. She also is working on a balance board. She does eye exercises, gets electric stim and gets some gentle massage and manipulation from the chiro. She wears her brace 22 hours a day. We are doing everything possible to try to halt this curve. Only time will tell. Best of luck with your decision. Melissa

I was wondering as of Jan 2008 how is your daughter? is she still wearing the spinecor brace? any curve progression/reduction>

[braceguy76]

looking for spinecor reports

I am interested in anyone who has been wearing the spinecor brace for more than 2.5 years. I'm interested in outcomes or progress.

[MATJESNIC]

My daughter Nicole had spinal fusion almost 4 months ago and is recovering well. She was diagnosed at age 11 with a 40 degree curve. Only a miracle would have prevented her from the 90% chance of surgery.

[mpj]

appointment

Hi Jill,

We have an appointment on the 14th. I will post after we get back.

Sarah

[Carly's Mom]

Daughter wearing SpineCor for almost 10 months now

My daughter Carly has Right Thoracic Lumbar curve of 40 degrees. T10-L3 She started with a 32 degree in March when she got the brace. There was no correction in the brace but they said that doesn't always happen and that the brace may be keeping her spine from getting worse. We see Dr. Marco at UT Imaging in Houston, Texas. The Orthotist that works with him is Miguel Gomez. We just got back yesterday from a 6 month check up and she went from 35 to 40. They said that measurements can be off by 5 degrees. Due to our insurance last year we had to have a medical doctor write the prescription, not a Chiropractor.

They also said that excercises are not all that important. I took her to three doctors last year for opinions. One said she was a Risser 0, another said 3 and another said 4. It is so frustrating to know who to see and where to go.

Her back pain has decreased but now she may have a mild Chiari. She has complained of neck pain for 6 months now. Plus all the other pains that go along with scoliosis. whole body muscle pain, fatigue, knee pain, headaches. We will finally see a Rhematologist at Scottish Rite in Dallas next week.

She does do some excercises and swims a little and we give her extra suppliments and other things to help her but she is not 100% in good health.

Does anyone have simular situation?

I now see that Dr. Lamantia flies into Plano Texas which is 1 hour away from us and I am waiting for him to call me back to see what he can do for my daughter.

I just wish our insurance co. would cover Chiropractic care. I know surgery is the thing we are trying to avoid and also avoiding her getting worse. We want the best care but are low income with insurance.

Any advice or ideas out there?