Re: Looking for Answers

[Guest guest]

Hi ,

I will be seen at TCI the end of February 2008, hopefully for a definitive

diagnosis. I have seen 3 different neurologists and have had 3 different brain

MRI's since September 2007. Chiari has never been diagnosed. I don't know how

your neurologist is, but I am also a nurse and have worked with neurologists and

have gone to see mine at Duke University Hospital. They seemed very closed to

the Chiari diagnosis. I have the feeling that it was because I discovered it

and not them.

What I ended up doing was printing out all the information I could find

including the Chiari Institute web site symptoms. I highlighted all of my

symptoms and then brought this to my primary care physician. I asked him if he

thought this might be what I had? (I let him think this was his idea, and I

discussed with him my MRI and also brought him a copy). He then suggested that

I request and send in the screening questionnaire to the Chiari Institute to see

what they thought. Of course I already felt like I knew their answer and I was

right and now have an appointment.

If you want my advice, you may find it easier to get an open minded serious look

into a Chiari diagnosis with your primary care physician.

Hope this helps,

Ruth

LOOKING FOR ANSWERS

I see my neoro the end of January and am a bit uncertain of how to

handle discussing this with him. I don't want him to think I'm

overstepping his knowledge but I feel this should at least be looked

at.

Does this tend to be overlokked when they're reading an MRI looking

for legions and such?

Any advice or info you can share, I will be grateful. Knowledge is

always our greatest tool!!

Thanks so much

[Guest guest]

,

I empathize with what you are going through. I agree that you may find it

easier to deal with a more open minded doctor. I think it is more common than

not for a doctor to not look at the films but just the MRI report. If your

neuro did that, he may not have seen the Chiari, and like me, the radiologist

did not note it in the report either. Do you have a copy of your report? I

would look at that and go to the radiologist that read the films too and see if

he/she is familiar with Chiari and if they would re-read the films to rule out

Chiari. I had to do that 2 1/2 years after mine films were originally done.

The radiologist told me he was familiar with Chiari, but did not see (at the

time) a need to note it in the report. He filed an addendum to the original

report and noted that I should seek immediate treatment.

Good luck to you, and Happy New Year

Terri