update and info from Milhorat, Batzdorf and Frim(long, but worth it)

October 20, 1999

I'm sorry I've been bad about keeping people up-to-date. Busy, busy.

To summarize, I have seen Batzdorf and Frim, and have spoken with

Milhorat after he'd reviewed my info. I'm very lucky to have been able to

get these three highly-thought-of opinions. I HAVE to be back in vet school

in August of 2000, so I don't want to have a failed 2nd surgery and decided

that I needed to consult all of these " specialists " .

I have received three different recommendations. Dr. Batzdorf feels that

I probably have a CSF leak that needs repairing, (there's a large

psuedomeningocoele on my June MRI). He would also replace the dural graft

(bovine pericardium) with my own tissue from somewhere else in my head. My

decompression is relatively large (tennis-ball size) and he feels that since

the entire weight of my cerebellum is supported only by dura, dural

stretching could also be contributing to my pain, and he'd like to put in a

" shelf " of a bone-like material called methylmethacrylate. He would also

" shrink " the cerebellar tonsils.

Dr. Milhorat, with whom I've spoken, but not " seen " , says that my

symptoms, (constant debilitating headaches that increase with activity), are

often indicative of a continuos CSF leak after a decompression and that he

also thinks that I should have some support back there, but would use

titanium. He would also replace the graft with material from my thigh, and

would fix the pseudomeningocoele.

So I go to Dr, Frim hoping that he will agree more with one than the

other. But, he says he thinks the leak has sealed off and is being

reabsorbed, and says that the dural stretch pain he has seen has been

associated with scarring, in which case I should have gotten better first,

which I didn't. He did a spinal tap. I had an opening pressure of 18 (some

say 15 is high, others say 20). He took out enough CSF to make it 9, but

this didn't decrease my pain. A lab test showed inflammatory cells in my

CSF, indicating that I may have been rejecting the graft and may have had a

minor case of spinal meningitis this whole time. I just today started a

course of steroids.

So, what to do? I think I want a 2nd surgery no matter what because I

want that bovine graft out of my head. I can't live my life on steroids, and

I don't want re-occurences after I return to school. Any input would be

appreciated. Thanks so much. I promise I'll be better at correspondence now

that I've seen all the doctors that I am going to see about this.

Jeni in FL

ACMI - herniated 20-30mm

decompressed 12-98

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