Why dont doctors admit they may not know about chiari

October 15, 2008

I was just seen by a new NS. After looking at my MRI's for the past

year, listening to my symptoms, and doing a exam. He advised me that

I no longer had Chiari 1. After the decompression it has been cured.

He did tell me that I have a artifact inside the brain cavity at the

area of surgery. But it could just be a clip used during my last

surgery over a year ago. He also told me that I had great CSF flow on

the interior side or in front of the spinal cord but very limited flow

post or in the back of spinal cord. He did tell me that he would not

treat me because my chiari was gone and he did not know why I had a

increase in classic chiari symptoms since June. I asked about him

referring me to a Chiari Specialist such as TCI or Dr. Oro in

Colorado. At which time he advised me that there was no such thing as

a NS that only focuses on chiari and related problems.

I am so frustrated. Where do I go now. My symptoms get worse daily.

I can not sit for more then 10 minutes without resting my head. My

pressure headaches have gotten so bad even having to pee causes them

along with talking just a little louder then a near whisper. This is

only a few of my symptoms that have returned with a vengeance. In

June I got very sick and was hospitalized. The doctors never knew

what was wrong at the time and since then I have just been getting

worse. Where do I turn now. The doctor today did say he would put in

a referral for a second opinion but that was it. My insurance

(tricare as a dependent) will not accept this as being enough to give

me the referral to TCI. Because this referral will only cover an

evaluation by another NS nothing more then that. Where can I turn

now. Or do I have to wait until its too late? Thanks for letting me

vent.

Shauncey

Decompressed 01/07

Bacterial meningitis 02/07

Revision 03/07 for psuedomeningocele

revision 07/07 for psuedomeningocele

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