new to group/not acm/sm ( long)

January 3, 2000

Hi to all,

My name is Toni and my daughter Nichole is 16yrs old. She was dx. with

ACM1/SM/severe scoliosis at age 6yrs old. We live in NY state and her dr.

then was Dr. Kline(now retired). He immediately scheduled her for

decompression/laminectomy and VP shunt for syrinx.

Was very active previously, tap & jazz dance, roller/ice skate, rode bike,

all normal kid stuff. Did great until age 11yrs then had pain in chest, back

and arms. Was then seen by nsg Dr. Dias and operated on for tethered and

rotated spinal cord, and removal of shunt.

Immediately following that surgery Nichole underwent a series of 6 or 7

surgeries, each one a yr or less apart for then 75% curve. Rods, cables,

screws each one more extensive then before, with several disks removed, and

many fusions. Rods broke and had to be re-done within a yr. Recently Rods in

pelvis and lower back removed due to excessive pain.

Nichole has also had several occipital nerve blocks and also 2 deep cervical

blocks both L & R sides due to extreem headaches w/ vomiting. For 3yrs she

could not lie down or she would vomit. She was first treated w/ steroids many

times but they quit working and now the blocks aren't working either. These

headaches began w/ insertion of rods and have since worsened.

One last surgery for clawed R hand, cut inside fingers at both bending levels

to straighten and also legenthed tendons on forearm. Success tempory, 1 month

because problem is ACM/SM related therefore not arm problem.

I began looking for support group in Nov. because Nichole continues to have

problems and found you all. I have only been reading all this time but you

all are the best and gave me the courage to go to the dr. w/ Nichole today w/

lots of info. and hopefully we will make some progress. By the way Dr. Dias

consults w/ Dr. Meneze in Iowa about Nichole. Anyone have any epperience w/

him or know of him? Just saw him mentioned today in my e-mail!

Well I,m sorry this is so long but until I found this group I thought all

these yrs. no one else in the world had this CRAZY disease that is robbing

her of so many things she should be enjoying! Again, my sincere thanks to all

of you even though you can't imagine the help you've been to me.

Nichole is very self-consious about whats wrong w/ her thats why I joined and

not her. She is beyond afraid!!

My private e-mail is Ice2dancer2@...

Nichole is Nlw21082@...

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