Our daughter Bethany

[Guest guest]

Hello everyone,

We are new to the group. has been helping us with information

on the the halo treatment and casting. She also encouraged us to join

the group. After reading many of your stories we now know we have to

pursue this avenue. We have felt such a srong feeling that there has

to be something or some way to try and avoid surgery.

Our daughter just turned 10. Our case is somewhat different than many

of yours.Bethany has a form of muscle weakness that has been

diagnosed as a reaction from the polio vac, many of her doctors do

not agree with that diagnosis and they are calling it a benign form

of muscle myopathy (non progressive). Bethany did not have scoliosis

until she was 8. At age 7 and a half she had a nerve block to her

right heel cord to reduce the tightness she had in it. It was

unfortunatley the wrong procedure for her paticular condition and it

caused her to loose complete control in her ankle in just 2 weeks.

Her ankle atrophied to almost half its size in a year and the

contracture increased to over 30 degrees. She walked with her right

foot at over 30 and her left was flat to the ground. This went on

almost 2 years. She recieved intense PT and nerve training to try and

repair the damage. In the mean time her foot at 30 degrees tilted her

pelvis and then came the socliosis. And it came quick with her muscle

weakness. During the 2 years this went on we met with several Dr.

that were tempted to do a heel cord lengthening but with the nerve

damage from the nerve block they were afraid she would not have the

strength in her ankle to walk on it. After searching we found a Dr in

New Jersey that does a release of the facia around the muscle with

just a few small incisions. Bethany came out of surgery in with her

right foot in a neutral(flat) position. We continued with Pt and her

right ankle is now the same size and strength as her left and flat to

the ground!! We are so grateful for that. We now have to find a way

to help her scolisos, she is at 65 and 78. Now that her there is no

leg length descrepency it is hopeful to get some correction in her

back. We are hoping someone in the group along with can help

us. Bethany is 10 years old and her scoliosis is not congenital but

we are going pusue this casting or possibly halo treatment for her.

She has not reached puberty and she is just going from juvinile

scoliosis to adolesent. We watched Dr Metas video and at the end she

mentions in the future maybe we can treat juvinile and adolesent with

casting.

IF anyone out there has any positive advice for us please write back.

We also have an email address Danpoolscape@... and our phone is

570-675-5821. We live in Dallas Pennsylvania. Erie PA is about 4 to 5

hous from us.

We realize everyone here is facing challenges but if anyone can find

a few minutes to help with our daughter we would be so very grateful.

Thank you,

Dan and Flanders