Chiari: It Gets Better

[Guest guest]

12 years ago today, I was under Dr. Batzdorf's knife at UCLA.

Since then, I've done a triathlon, and have few side effects. Some of the

numbness in my scalp I'd learned to live with started getting better last year.

I also have had a problem with not knowing when I was getting too hot or cold,

due to the slight nerve damage, but it's also getting better.

So, when you're reading through this list of all the terrible things that

happen, the problems folks are dealing with that just seem so depressing,

remember this: folks who have no problems rarely hang around on this list.

Keep in mind, it gets better, and you will, too.

E. Gilliam

Type I, 15mm syrinx, 7mm herniation

[Guest guest]

There are several reasons why many of us have needed multiple surgeries. The

age we were diagnosed, having multiple disorders such as Syringomyelia,

Hydrocephalus, Tethered Cord, Ehlers Danlos, and different forms of high

pressure such as Pseudo Tumor Cerebri.

I know many of us have been diagnosed with Hydrocephalus or PTC and shunts

wind up over draining. I hate it when I don't have a working shunt, then

again when it starts to over drain my ventricles isn't a piece of cake. I

have more symptoms when I don't have a shunt, I had it ligated about 6 years

ago, they just made a small incision and tied suture around it. Then high

pressure started again.

I was diagnosed in 1990, just around the time MRI's were first being used.

At that time you never heard of a CM specialist.

The list of surgeons on CCI's website has the experts listed on top, with an

* next to their name. Write the list, ask members to share their

experiences. Please don't post negative things about anybody on the list. We

also have CCI list of doctors that were recommended by CCI members.

My criteria for a CM expert is that they have limited most of their practice

to CM/SM...

As far as second or third opinion, do it! When I was diagnosed in 1990 I saw

a local neurosurgeon. For a second opinion we went to a neurologist. He

said surgery needed to be soon. Diagnosed on a Monday, and in the OR by

Friday.

just explained the doctors list.

Have a great weekend and a Happy St. 's Day.

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.

http://chiariconnectioninternational.com/