FW: GK/FRS/s report

[Guest guest]

Barbara,

My comments to your note are prefixed with " >>> " . I hope the note is easy to

follow.

===============

" copy of the answers I got in Pittsburgh to the RS questions. Most of these

were answer by Dr. Lunsford and Dr. Flickinger. I think most of the answers

apply to GK only and not FRS. "

***I am quite confused. I thought GK could be done in FRS? Am I incorrect?

In regard to your statement , I'm also confused because while you say

you think most of the answers apply to GK rather than FRS, every single one

of your questions refers to " FRS " - so in your report it looks like they

would be referring to FRS. Can you clarify?

>>>GK in general is not done in " fractions " . Mine was done in 4 doses over a

period of about an hour. Dr. Noren wrote to Marie a while back to say his center

was working on a Fractionated GK but that is the first I ever heard of it. Sorry

for the confusion over the questions. When we drew up the questions on the Crew,

We decided to use the term " Fractionated Stereotactic Radiosurgery/therapy "

because we felt it would encompass all forms of radiosurgery (RS). However, when

I asked Lunsford the questions, I did not have time to go into other forms of RS

so his answers were for GK only.

" Question 3) Why do neurosurgeons not like operating on sites previously

treated with FRS.

Answer: This is only true at centers which do not provide RS. At UPMS, they

do it when required without problems. "

***I wonder about this answer. I think it may be too simplistic to to be

helpful. I am treated at NYU Medical Ctr, in NYC. My surgeon referred me to

the GK unit in the hospital for consultation re RS. The answer that came

back was ambiguous. The GK man (I think he is also a neurosurgeon) wrote to

my surgeon: " I think she reperesents one of the most difficult groups of

patients that we see. My enthusiasm for RS for the only hearing ear in NF2

has waned with the appearance of several patients in the past few yrs, who

are failures after RS. Moreover, as you know, the difficulty is trying to

reduce the dose to preserve hearing. This may explain the recurrences after

RS, especially in NF2 pts. I would like to discuss this case with you in

detail if possible to see your thoughts. I think the available options are to

proceed with GK with a reduced dose. If the tumor begins to grow then she'd

have to undergo translab & ABI. The alternative strategy would be just

observation and when hearing is gone, translab & ABI "

>>>I think what Lunsford was getting at in question 3 is that they will do MS on

patient who previously had GK and don't see this as a problem.

" Question 4) Does FRS cause scaring of healthy tissue? If so, would this

hinder an ABI operation?

Answer: GK does not cause scaring of healthy tissue and would not hinder the

ABI surgery.

Question: Why is HEI so anti-RS? Answer: " $ " .

(from Marie: It makes me think that one expert can say there is no scarring,

and another expert can say there is always scarring!! I have met Lunsford

also, and he is a little more mature than the Kman, also pretty well known as

a microsurgeon. And as far as the $$ and HEI against RS, I am sure the

politics enter in to it, but these guys truly believe in what they are

doing.) "

***This business about scar tissue or no, has my head spinning - and

unfortunately, " the answer " seems critical to my making a decision re

decompression or RS!

***I would be interested in anyone's interpretation of what the GK guy wrote.

My sense is that it is ambiguous because there are no certain answers. What

do you think he is recommending really?

>>>It seems like your GK man is saying that your tumor location would make

hearing preservation difficult with GK. He also suggests a " translab & ABI " if

the tumor begins to grow after a " reduced dose GK " to try and save your hearing.

This seems to indicate scarring is not a problem after GK. This is also what

Lunsford told me (see question 4). My understanding is that scarring can occur

after MS as well. A friend of mine had scar tissue form after MS.