Any docs who can give me any advise on
this? I have one and I feel ike I am
robbed of my life!!!! Very sick alot!
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mc4ever02
Supporter
Joined: 08 Feb 2007 Posts: 3636 Location: Orlando, FL Usa
Thanks: 5
Thanked:2
Posted: 05-02-07 14:04pm
I've never heard of this before. Is it
cancer?
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chris1975
New User, Becoming EHEALTHy
Joined: 12 Mar 2007 Posts: 6 Location: mi
Posted: 05-02-07 14:57pm
It is benign but acts malignant
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mc4ever02
Supporter
Joined: 08 Feb 2007 Posts: 3636 Location: Orlando, FL Usa
Thanks: 5
Thanked:2
Posted: 05-02-07 15:25pm
I have moved this post to the Cancers
forum. I think that you will get a better
responce there regarding this specific
condition.
I will leave a shadow on this forum in
case someone here can add anything to
this.
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mc4ever02
Supporter
Joined: 08 Feb 2007 Posts: 3636 Location: Orlando, FL Usa
Thanks: 5
Thanked:2
Posted: 05-02-07 15:26pm
Have the doctors discussed any treatment
options with you?
What side effects are you experiencing?
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chris1975
New User, Becoming EHEALTHy
Joined: 12 Mar 2007 Posts: 6 Location: mi
Posted: 05-02-07 19:42pm
Thank you, Although I am not sure I will
get many replies since it is such a rare
tumor. It is usually a pediatric tumor. I
was diagnosed at 28 yrs old I am now 30.
As for the side effects. I have disturbed
vision, severe headaches/migraines. The
risk are vision loss, pituitary
dysfunction, Cushings disease..along with
some others. I am just generally weak all
the time, easily fatigued. The headaches
are what are getting the best of me. The
tumor sits on or next to my pituitary
gland and is compressing the optic chiasm
(per med reports) so I suppose I am at
risk for loosing my vision, which I
beleive is in the process. I've been
denied surgery by 2 neurosurgeons I ve
seen 3. The 1st one wanted to do surgery,
I declined...I was scared. I decided to go
ahead with t and contacted another Dr due
to insurance changes and was stopped at
the initial phone call, never made it to
the office, they would not even think of
performing the surgery and finally the 3rd
said that it wasnt the path to take at
this time and that I am in the "grey"
area. I am guessing I could be worse off
with surgery. becuase of the after
effects, so I guess either way Im "up the
creek without a paddle" so to speak. I was
just looking for anyone who may have one
and going through this as I am. Thank you
for your reply, usually I get NONE. Thanks
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mc4ever02
Supporter
Joined: 08 Feb 2007 Posts: 3636 Location: Orlando, FL Usa
Thanks: 5
Thanked:2
Posted: 05-03-07 09:51am
That is why I asked earlier if it was
cancer. When I researched it all I could
find had to do with pediaitric, so I
wasn't sure if I was looking at the right
thing.
I'm sorry you have come across so many
bumps in the road. If you found another
doctor that would preform the surgury,
would you do it?
Anytime, you need to talk to someone,
there is always someone here so feel free.
Maybe someone will come by with the same
condition.
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chris1975
New User, Becoming EHEALTHy
Joined: 12 Mar 2007 Posts: 6 Location: mi
Posted: 05-03-07 10:23am
Well...ya I guess I would still have the
surgery, but I don't have confidence in
the doctors now for the way they have
avoided it. That tells me they don't
expect a good outcome. Well, either way,
I've got a long haul ahead of me, so I
guess I am prepared. Thank you so much for
responding. This is a reaaly great web
forum, I will definitely pass the word
around. Because sometimes people just need
someone to hear them out. Thanks again
and yes, many hopes that some will pass
through that can shed some light.
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mc4ever02
Supporter
Joined: 08 Feb 2007 Posts: 3636 Location: Orlando, FL Usa
Thanks: 5
Thanked:2
Posted: 05-03-07 19:57pm
Please keep us posted on your progress. We
all care.
I hope you stick around. There are many
forums to fit most all needs.
