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Yes! We did make it to Shriner's and are currently on the waiting list for tethering while we consider our decision. It is amazing to me how many people are dealing with this disease with so little...

Hi Resilience! It sounds like you and I are on a very similar journey with our daughters. I have been reading your thread and just have not had the time to sit down with thoughtful reply =)

I...

Thank you Maria =) I have visited the VBS site and am glad to see all the info. I will be looking at it more in depth hopefully today.

We have a list of questions and I think I am going to...

Thank you Sharon! I intend to do just that =)

Thanks Maria! I see that your son had the VBS and is doing well! I am impressed with the information on tethering but am nervous about the newness of the procedure. DD is very nervous about the...

WOW! You all were right on the money with Shriner's. They are unbelievably AWESOME! They do indeed take into consideration what you have to say! Janet, Dr. Samdani and all who were there were...

Just to update - we are headed to Philly for a Friday appointment :) We will be seeing Dr. Samdani. Janet and the staff have been as wonderful as everyone said they would be. I am trying to read up...

Thank you! I will definitely be contacting Janet at Shriners. After looking it up it's only 5 1/2 hours away!

Leah - she did have an MRI last year and they ruled out any spinal issues thank...

Thanks everyone for the encouraging comments.

Elisa, I read your whole story one evening and I must say it was quite an experience. i am so glad that you were able to get the help you needed...

Hello everyone! So glad I found this forum.

My 10 year old daughter was diagnosed with 2 thoracic curves and a compensatory lumbar curve at the age of 8 in early 2010 (she just turned 10 a couple...