Finding a Doctor

[Guest guest]

Hello to all you New Folks,

Sorry you have to be here... but I think you will find the list to be very

helpful.

WACMA has a list of doctors that members have recommended. Go to the WACMA

page and see the link.

With neurosurgeons it is important to realize that many of them (all?) will

say they they are an expert with Chiari even if they have only seen 5 cases

in the last 20 years. To me it is important to talk with a doctor who

knows what he is talking about.

I went to three neurosurgeons here in St. Louis. One said he didn't know

much, another told me any neurosurgeon could do my surgery, and a third,

bless his soul, encouraged me to go to New York to see Dr. Milhorat. I had

also sent my films off to Dr. Menezes in Iowa and Dr. Batzdorf in CA for

their opinions. I have minimal herniation, 3-4 mm, so there was so talk

about IF I had Chiari and would surgery help.

I think it important to find a doctor you are comfortable with.... someone

who will be with you for the long haul. Many neurosurgeons are used to

doing surgery.. and if the patient doesn't get better, it must be the

patient's fault, as the surgery was done " perfectly. " <note sarcasm here>

ALSO, neurologists.... someone mentioned them the other day. I have seen 5

or 6 neurologists. I think it is good to find one that can help you manage

your medications, as they are very helpful with this. However, I had a

devil of a time trying to find one that wasn't appathetic. I felt as if

most just wanted to hold my hand and say, " There, there, dear. " They were

not interested in being too encouraging. (Now this was may experience,

yours may be very different.) I have since come to the conclusion that

most neurologists treat terminal or chronic illness such as Parkinsons,

ALS, MS, post stroke, etc. They are not used to patients who recover. I

wanted someone who would be positive and supportive, and I finally found

one I believe. One thing here, I decided that any neurologist that would

take longer than 2 weeks to get me in for an appointment had much too large

of a client load to see me. If I am in pain I want help much faster than

that.

Now, on the otherhand, you will have to wait most likely to get into one of

the " big " Chiari neurosurgeons. That was ok by me. After all, as I told

my insurance company when I got them to approve a doctor out of network,

brain surgery is not like wart removal that anyone can do.

Best wishes,

Suzanne C

from St. Louis, vertigo and visual problems, decompression surgery 3/23/99

Suzanne Chisum

schisum@...

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