Frim Visit – Not Happy

[Guest guest]

I went to Frim’s office on September 30th for a " 2nd opinion " on

decompression surgery. My first opinion was with Milhorat, but I’m not

totally sure if I want his particular procedure, so I decided to see

some other Nsg's too.

My visit began with a very thorough exam by his medical student for

about an hour and a half. After that, Frim came in, and said that my

symptoms of vertigo, drop-attacks, myoclonic seizure, nystagmus and

tremor, were not chiari symptoms (which I disagree). But that my

headache and neck pain are chiari symptoms. He was also concerned that

I did not have the cough headache, he feels if you don’t have this,

you’re not compressed. He said that while my MRI showed chiari, he

didn’t feel that I presented like a typical chiarian. When I asked him

what he thought the reason for the vertigo, drops, myoclonus, nystagmus

and tremor were from, he said that he thinks I have permanent

nerve/brain damage in my brainstem from birth (I disagree). He

described me as an ACM 1½ ....somewhere between a ACM 1 and an ACM 2,

because of (what he thinks is) traditional ACM 1 with additional

brainstem damage.

He said that he would do surgery on me, if I wanted it, but that it

would be a " Leap-of-Faith " , that the things I wanted most to get better

would (e.g., vertigo, etc.) He said my headaches and neck pain would

get better most likely. He used the term " Leap-of-Faith " multiple

times. He asked me if I’d considered getting my vestibular nerve cut,

like they do for Meniere’s disease. I told him that I’ve already been

evaluated for Meniere’s disease and don’t have it.

Needless to say, I’m VERY shocked that this is his opinion. I’ve heard

so many good things about Frim, that I thought for sure he would

recognize the newer diagnostic criteria for chiari, and not just the

headache syndrome. I do have headaches everyday, bad pain in my neck,

nausea, etc. every day, but they are not what I want rid of most. For

me, the vertigo, drop attacks, etc. are disabling me from work

….headaches aren’t. That’s how I chose to prioritize my symptoms.

Also, I had a thoracic MRI done in early august to rule out

Syringomyelia in that area. The radiology report said...Diagnosis: No

Evidence of Syringomyelia. Frim says, I do have a syrinx. The report

says I have 2 hemangiomas on my vertebrae, Frim says I have 4. (note:

hemangioma is a benign vascular lesion/tumor). So, in turn, I’m going

to send my thoracic films to Milhorat for his opinion on whether or not

I have a syrinx and how many hemangiomas are there.

In summary I just want to say that, I am not writing this to bash Frim,

I am just relaying how my visit went, and that I personally disagree

with his opinion.

Kim

[Guest guest]

In a message dated 10/2/1999 7:31:01 PM Eastern Daylight Time, kimd@...

writes:

<< He said that while my MRI showed chiari, he

didn’t feel that I presented like a typical chiarian. >>

Dear Kim,

I had a similar experience with Dr.Frim. I too questioned his

recomendations for me. Although I realize that I am not quite as symptomatic

as others, I was astonished that he felt my problems were not *chiari*

related. I do believe DrFrim is very knowledgeable, and I know he has helped

so many of us, but I tend to think he based his opinion of me by comparing me

to the severity of others.

And as we all know, there is not a *typical chiarian* out there. Sure, we

all have some symptoms that we all share, but every case is a little

different. Do not feel bad that you question his opinion.

Love,

Mel