ANA Discussion Forum
Archive => Archives => Topic started by: RattieLady on August 22, 2006, 02:03:55 pm
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have any of you had both AN's removed and ended up with facial paralasis on both sides? I have facial paralasis on the right side the left side is yet to be removed. I'm worried that when they do the left side i'll have facial paralasis on that side too.And i don't want that to happen. I had some surgery done on the right side to see if some movement will come back but if that don't work and the faical paralasis is on both side i don't know what to do.It's not what i want.I wanna smile even if it is on just one side.
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rattielady, I wish I had an answer for you... will puruse other sites to see if anyone else has.... NF2 needs to have a centralized area for those afflicted. Please know I'm sending you hugs. Hang in there.
Phyl
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I do understand your fears
To some degree you are asking about the future speed and development
of your tumours - usually, the faster, the greater the consequences.
But to be honest - I doubt anyone really knows the exact speed
for you - only time will tell etc
The term NF2 covers 1001 conditions, all similar - but not idential.
For example I know some 75 years old`s - who are still "watch and wait"
(While some dont make it past the mid-20`s)
Also it usually depends on the location, and how large a tumour becomes
- but the facial nerve is not normally first in the firing line.
I might suggest you ask the NF2 crew the same question
(I know a contact if you need one - drop me a note etc)
Depending on tumour size/location you might consider a radiation option
for the untreated side - the facial nerve stats are quite good here.
Equally a small tumour well away from the facial nerve is unlikely
to cause facial issues, in the long term, from surgery.
My only other thought is make sure when you seek further
surgical or radiotherapy advice that the person really does
know about NF2 (its so rare, and the results quite different from AN`s)
Its quite possible you might be his/her first NF2 patient (not wise)
I actually present the doc with a short questionaire to check
(strange, I dont seem to be so welcome these days...)
Sorry if the answers are not so definate - it is in the nature of the condition
Best Regards
Tony