(No subject)

September 17, 2008

Hi Friends,

I'd like to say that CCI is NOT a TCI based support group. Sally and I

started the group with intentions of having information from multiple

surgeons and experts. We succeeded in that, check out our Ask the Doctor

section on our website.

We have a high percentage of TCI members because they have tons of patients.

When ever I recommend doctors I try to find out what symptoms the member

has, and where they live. I give them my experience, which is both local

surgeon and TCI. I stress not every surgeon is for every patient. If

possible make a second opinion, shop around. Educate yourself by support

groups and on line sites.

If a member has Chiari/Ehlers Danlos/Tethered Cord symptoms, I do say that

some surgeons are more experienced than others. It takes a while for

progress in the neurosurgical field.

An example, my first surgeon told me I was lucky to not be diagnosed in the

early 50's. The test used to diagnose killed approx. 50%. Of those that had

surgery, it killed another 50%. They cut the cerebellar tonsils off, and

didn't used cautery equipment, and patients would bleed out.

Having been diagnosed in 1990 and being told I'd never meet another person

with Chiari, it is a joy to run a support group and spread new information.

If other members get carried away with their own doctors, just know they are

pleased. Ask lots of questions both on the list and off.

There is a rule that I will keep and that is no bashing of anyone, doctor,

list member, or neighbor. If you list their name and have negative comments,

most likely your post will be deleted.

Thanks for listening, and I hope that I have cleared up any misconceptions.

Kathleen

Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome,

surgery for everything but EDS since 1998.

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