Author Topic: UGH--I can stand the tumor but not the conflicting opinions  (Read 2732 times)

suelay

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UGH--I can stand the tumor but not the conflicting opinions
« on: September 12, 2006, 11:12:33 pm »
I have tried to do what I'm supposed to do.  I have had wonderful and well-intentioned doctors tell me to watch it, to Gamma Knife it and to do surgery.  I have also had doctors say do gamma or surgery, but don't watch it as even minimal growth will affect what can be done and likely success.  I can handle my tumor (some hearing left, some dizziness), but can't handle these conflicting opinions.  Sorry just venting.  I'm taking a benadryl and going to sleep.  Maybe tomorrow will be a better day....
L AN 16 x8 x8 mm
Retrosigmoid at Mayo Clinic Drs. Link and Driscoll on 9/25/06
Very good result

Kathleen_Mc

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Re: UGH--I can stand the tumor but not the conflicting opinions
« Reply #1 on: September 12, 2006, 11:24:20 pm »
suelay: I think in the end (if you're in a position to make choices) you can only do what feels right to you. Just think about what you want to do or not do. I myself didn't have choices the first time around and had surgery and always said if I got another tumor I wouldn't go through it again and would go to the US for gammaknife (if it were an option) and in the end I ended up having surgery to remove my regrowth even though gamma in now in Toronto and was an option for me.....when it came right down to it I wanted to stick to "what I know".
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

tony

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Re: UGH--I can stand the tumor but not the conflicting opinions
« Reply #2 on: September 13, 2006, 12:17:37 am »
Yes- I agree, how a number of AN surgeons/radio types have not been
murdered in their own surgeries is beyond my comprehension
I think we have to understand they tend to stick to what they
know - specialists in one field
(I met one half-wit who was offering advice - I was her first NF2
patient....the consultation lasted about 90 secs)
While actual "knife" surgery and radio surgery are quite different disciplines
with different training paths - there is some rivalry here.
Even resentment ? unreal...
Its often worth finding someone who does both - tends to give a more
ballanced view.
Finally its worth noting that no-one really knows the future
- they can give a probable outcome - an average of past
experiances in similar situations
I understand some people need/want certanty
but its not always that clear
and yes - take a week off from it all
you will feel better
Best regards
Tony