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Hi! My name is . My daughter, , has Chiari Malformation,

Syringomyelia, and Tethered Cord Syndrome. She also has an undiagnosed

connective tissue disorder.

Our family lives in Mississippi, where there are not very many specialist for

these conditions. We have traveled all over this state and neighboring ones

trying to find her help! We were able to find a doctor in NC that diagnosed her

in 2007 with the CM and SM, and also performed a Chiari brain decompression on

her. Then, a doctor in Hattiesburg diagnosed her with Tethered Cord Syndrome in

2009, and released her cord that year.

Now, has been getting worse. We have very limited insurance, so we have

only been able to see doctors locally. And at her last neurosurgeon appt (with

a doctor whom practices at LeBonheur Children's Hospital) she was told her pain

was just myo-facial pain and that she just needed to exercise more and lose

weight! Yes. Really.

This is a child that is in pain each and every moment of her life. She wakes up

in pain through out the night! She goes to bed, trying to sleep with pain!!

Currently, she has nothing prescribed for her pain except for a lidocaine cream

compounded at a pharmacy!! And this is just not doing anything for her!

In the past six months, has started having these " episodes " of back

pain. At first, we wondered if they were her kidneys. But assumed that kidney

stone pain usually doesn't subside just randomly, and then return. We felt that

if it was a kidney stone, it would escalate requiring medical attention, as my

husband's kidney stone had.

Plus, this pain is right at her TC releases surgical scar. And then we noticed

that her scar would sometimes bulge and turn pinkish/red when she had these

episodes. This pain was what urged us to make the appt with the neurosurgeon,

whom said it was just myofacial pain! And that it was most likely NOT that her

cord had re-tethered!

is feeling a pulling sensation around her scar area, and she is having

stabbing pain that she describes like as if someone where inserting a too-large

catheter into her spinal cord. Does that make sense to any one?

I am concerned because of the pressure headaches that she is having that spinal

fluid could be building up or pooling causing a leak or something. Or are her

syrinx growing!?! It is so hard to be here in Mississippi, and to not be able

to get the help that she needs.

We have been hoping to be able to get her to The Chiari Institute in New York,

to see what their opinions would be. But, that is many miles and dollars away

at this point!!!

Thank you for any insight or thoughts you may have!

Mom of 6 wonderful blessings from the Lord