United Brachial Plexus Network, Inc.

Has anyone had to worry about scoliosis as an affect of their injury? My son James, 8 ROBPI, was just diagnosed with scoliosis. We are now going to a spine doctor to find out the degree of the scoliosis and what to do further. One doctor said that we should just monitor it to see it progression. Any help would be appreciated. Happy Holidays to all.
Elisabeth

I too ended up with a slight case of scoliosis due to my LOBPI. But we never did anything about it really. I am fine, no back pain, but I also had strong back muscles due to Ballet and competitive figure skating.
Mine was only evident when I turned 15/16 because I had a very late growth spurt!
I am careful as to how how I sit (try not to lean to exagerate the curve), and how I move when doing tasks, but I am in nursing school and we are told to be very careful about how we move/work with patients and in doing our job.
So yes, it is possible it is due to the OBPI.
Marieke (30 yrs, LOBPI)

I have a slight case of scoliosis. My back muscles were much stronger when I was young. I took all sorts of gymnastic lessons and swimming and dance. But once I carried my children and had to do all the normal lifting one does as a parent I began to have some real problems. My back was so weak when my children were young I think it was all the lifting my first two children were a year apart.
I have spinal stenosis of both cervical and lumbar regions of my spine. I don't think that is connected but I don't know for sure. One PT said he felt that it was due to compensation and the way I move to compensate for the weak muscles on the right side.

Kath Adult/robpi

My PT told me that my back/BPI side joint pain is due to over-compensation & accomadation but the routine set of exercises he gave me to do is helping alot..& then I do jump into a hot tub now every chance I get for instant pain relief which lasts along time for me.
Carolyn J
Adult LOBPI

I ASKED MY SONS DOCTORS AT GILLETTE ONCE ABOUT THIS AND THEY SAID THAT ZAK DOES NOT STAND A GREATER CHANCE OF DEVELOPING SCOLIOSIS THEN ANYONE ELSE. I HEARD BP KIDS STAND A GREATER CHANCE. SO I AM EXPECTING MY SON TO NEVER HAVE IT BECAUSE OF THIS INJURY. IF HE DOES I KNOW WHERE I STAND WITH THE DOCTORS, BECAUSE MY SON SEEMS TO ALWAYS FALL INTO THAT LESS THEN 1% CATAGORIE.
THE SPECIAL DOCTOR AT BIRTH ALSO SAID HE WOULD BE SURPRIZED IF ZAK DID NOT HEAL AFTER 2 WEEKS AFTER BIRTH. AND THEN WHEN WE DID THERAPY WE WERE TOLD HE WOULD HEAL COMPLETLY. HERE WE ARE 3 YEARS LATER... GO FIGURE.

My daughter who is now 14 has had scoliosis since she was 4 years old. Therapy seemed to help lesson her degree - but what we've found over the years is that her severity goes high and low at times - depending on her activities. Some specialists say that it can never go 'lower' - that bad x-rays must have been taken - but I can personally see a difference in her posture at certain times of the year. This past Feb we saw doc Davino who thought that she might need surgery because her degrees were 27 and 31 ('S' curve) going on - but Dr Hanson at Baylor said that she was fine for now - no surgery needed and that this was a problem of OBPI injured and that there is not a whole lot of 'experimental' things that work like braces, e-stim, or therapy, but that surgery would help if it got that bad. We have seen so many docs with differing opinions - but go figure - since Feb her spine looks straighter again and she has always been active - now more than ever, and I DO believe that being active with sports does help her strengthen her back and stomach muscles... sorry I am on my way out the door so I hope this response made some sort of sense. She swims, plays soccer, runs, is in athletics in 8th grade - always on the go - and her spine is looking great for now (hard telling what it would look like if she weren't so active.... (my opinion)
Good luck,
Christy

My daughter has a left bpi. Her left leg is weaker and turned in so she does not weight bear on her left leg. It is now physically shorter. Her right hip is higher so now they are warning me that she's on a scoliosis watch. She's supposed to wear an insert in her shoe but she's so used to being tilted that she hates the insert. We are actively working on weight bearing now.

Scoliosis, in general, tends to run in families. My grandmother(m) lost at least 4 inches due to "hump back". My father used to have his clothes custom made as his legs were "different lengths"--of course they were the same, his hips were different. My brother has a severe case of scoliosis and has (at age 50) lost a few inches off his 6'1" frame already. He may soon have a rod inserted as his breathing will be affected in the coming years. Being active and strong will hold scoliosis in place. In his 30's, my brother was quite active; he ran mini marathons, worked out daily in a gym and was generally active. For the last 10 years or so he has become sedentary. And his back has worsened. My oldest sister has scoliosis as well, but she is very active and it has not changed too much since her 20's. I have it and so does my other sister. My mother was just diagnosed with lumbar scoliosis (she is 75).

One of my twins (11) was diagnosed with scoliosis at 9. The doctor we go to checks all of the kids as they are all at risk considering my family history (no scoliosis in my husband's family). Isabel is due for a recheck in a week or so, and we will see where she is. Two years ago and about 6 inches in height she was at 17 and 21. Not enough to do anything. Growth spurts tend to be the culprit. They treat scoliosis differently than they used to. My friend wore an awful brace for much of her high school years that left her with terrible back pain. My understanding is that they brace differently and not as often as they used to.

The doctor we use seems to feel that Juliana is at higher risk for scoliosis because she has a double whammy: family history AND bpi. She is a big time compensator, has the head tilt. And didn't weight bear on her affected leg for YEARS. We used to call her "the crab"! She sort of walked sideways...

We bring all of the kids to the scoliosis appointments so he can check all of them.

Isabel is a competive diver and I think it is helping her back (I could be wrong--we'll see soon!). Her coach starts each practice with 400 crunches and 40 tuck-outs, plus they run to the top of the 10 meter platform about 10 times and then do jumping jacks up there. Form is so important in diving and she can hold it. I notice sometimes that her shoulders don't look even. But then I am a mom and I notice everything. ahahhahhha.

good luck,
claudia

I want to thank everyone with their input. We are in the beginning stages of this and are going to see a spine doctor next week to further investigate the degree of scoliosis.

As far as we know, there is no family history.

We are just going to take this by stride and see what life brings us. The spine doctor we are working with does say that unless the degree is 30 or more, they will just monitor James. He does want us to keep up with the therapy we are doing as well as the baseball and soccer.

Thank you again for all your help and support.

Elisabeth