[misc.handicap] Have hope

Linda.Misek-Falkoff@f3.n157.z1.fidonet.org (Linda Misek-Falkoff) (05/03/91)

Index Number: 15324

[This is from the Chronic Pain Conference on Fidonet]

Hello Keith. Since I do have residual pain, managed by tegratol after my
brainstem  surgery, receiving a response cheers me up a lot. Thanks for
responding. 1) Dir Peter Janetta is at (was at) Pittsburgh Presbyterian
Hospital. I suggest writing to the Neur*ology Dept. there and enclosing
our correspondence.  THrough our conditions may vary, THEY LISTEN. I
had grown used to (20 years, not 15) walking in touching my fingers to
my nose etc., stadrad tests.  They wanted instead IN MY OWN WORDS (and I
had them!) to know what it felt like. The pain. I sure told them. At
that time 1985, Rose was there, also Pat. Wonderful people. Best of
all Dr. Janetta. I too had gone to Cleveland Clinics among others.
They meant well and tried to help me. It was simply in advance of their
tests and equipment to do the diagnosis. I feel that 80% (80/20) rule
of the many physicians I saw did want so very much to help. But just
didn't find the brain lesion. I asked Dr. Janetta -- what next for me
if no help? He had little hope for staying out of institution, pain
(physical) was that bad. Anywhay he operated bvased on objective tests
he had developed (eg. evoked p-tential response test) and careful
audiology tests etc. Enougyh of me. Please write to the Presbyterian
Hospital in Pittsburgh. Inquire, send your notes. I don't think they
will box you up as"psychological" if yo are open and candid. P.S. if you
are a poet and from your note you seem very human (poetic per se), you
may appreciate his technique, and he has taught many others who come
from all over the world to learn. He will NOT cut nerves (then at
least). Because that can lead to palsies etc. He carefully placed tiny
teflon pads between troublesome arteries/veins binding up my head nerves
into loops, and the nerves themselves, to alleviate (decompress). I
don't know if this has relevance to you but they treat many conditions
where others have for whatever good motives thrown up their hands. I
urge you to write to them. And god bless you and let me know how you
are doing. I am only one among many who care about you (ps. when in
unearthly pain I put ad to in NY times magazine). I heard from a dozen
people all over the world with unorthodox but caring diagnosis. Pass on
the candle. Best, Linda.

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Internet: Linda.Misek-Falkoff@f3.n157.z1.fidonet.org