New to Forum, 5 yr.old w/Scoliosis

[kmahoney]

Scoliosis and NF1

Hi,

My son Oliver has Neurofibromatosis Type 1 (NF1). He is 6 years old. He was just recently diagnosed with scoliosis (T6-T10=31 degrees). It has been 16 days since we found out and I cry everyday. I think today the shock is finally starting to lessen although the tears still fall. I'm doing my best to research and find the best treatment for my son. Dr. Todd Lincoln from Kaiser Oakland, California, is his current doctor. He doesn't think a brace will help but we still asked for one just in case it helps to slow down the progression. Oliver will be wearing a Boston brace. We are waiting to get a second opinion from Shriner's in Sacramento, California (thank you MariaF for letting us know about Janet). Dr. Lincoln doesn't think Oliver will be a good candidate for VBS because he has NF1. NF1 bones are weaker and doesn't heal well.

For those with experience with VBS, what are the pros/cons that you've noticed? A friend who's daughter had VBS said that her curve is now shifting to the opposite side of the staples, past the midline. Is this a common complication?

Any advice will be greatly appreciated.

Sincerely,
Karla

[mariaf]

Hi Karla,

First of all, I'm sorry for your son's diagnosis. I remember all too well the shock, the tears and the fears of what the future was going to hold.

Did you call Janet over in Philly and she referred you to the nearest Shriners Hospital? Sorry, I was a bit confused

My guess would have been that if you were seeking an evaluation for VBS that Janet would have either had you come out to Philly or have one of the doctors review the x-rays and medical records first, before having you make the trip.

In any event, that's not important - what is important is that you remember that scoliosis is a very treatable condition and that these kids lead active, happy and normal lives.

There have only been two cases to my knowledge, where the curve has over-corrected as you described. It is very rare for that to happen - or even for the curve to get to 0. One girl currently has over-corrected about 10 degrees and is wearing a night brace. The doctors in Philly, where the vast majority of VBS surgeries have been performed, are aware of this remote possibility. The will look at the flexibility of the curve - and if it is extremely flexible, they may hold off VBS until there is less growth remaining (i.e., less time for the spine to over-correct).

Also, for example, if a young child presents with a moderate curve, they may wait until that child is at least 7 or 8 to perform VBS for the same reasons - to lessen the chance of over correction. You will see from my signature that my son had VBS six and a half years ago and over-correction has not been a problem. There are so many factors that are taken into consideration. There is no 'one size fits all' treatment plan.

If you have not already done so, I would strongly recommend you join the VBS support forum as well. It is www.vertebralstapling.com. There you will find dozens of parents who will be able to answer your questions regarding VBS from their personal experience.

Also, please feel free to e-mail me if you like.

Best of luck to your son!