Author Topic: What were your odds and how did they stack up?  (Read 1812 times)

nomad9988

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What were your odds and how did they stack up?
« on: August 03, 2018, 12:26:43 pm »
I have been seen by the two surgeons that are going to be preforming my surgery. They both gave me about a 1-2/10 chance of moderate facial weakness immediately post op, then about 1-2/100 chance that it would remain after a year.

What were some of the odds you were given?

Were you that lucky 1/100?

This is my biggest fear, as I am pretty young (mid twenties) and am absolutely terrified of the facial weakness.

ColleenS

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Re: What were your odds and how did they stack up?
« Reply #1 on: August 03, 2018, 03:45:35 pm »
I think that is what most of us feared the most. I was not given "odds" nor did I ask for them. My surgeons said that they would leave a fragment rather than risk injuring the nerve if it did not slip off. Some are tacky they explained, but typically the fragment dies off since it is not being fed anymore (if on the facial nerve, not on the brain stem). My tumor was also on my brain stem - even moved my stem a bit. So my outcome was NO facial weakness ever. The brain stem was 100% free of the tumor, but the facial nerve was left with 2% of the tumor. My followup is in October. I will find out then if it has died or grown. I had a good bit of numbness in my mouth and loss of taste buds for about 6 months, but most of that is normal now. I had excellent surgeons. That is the key in my opinion since this is such a delicate surgery. Keep us posted on how you do.
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness
10/21 Mild facial paralysis still

Kathleen_Mc

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Re: What were your odds and how did they stack up?
« Reply #2 on: August 06, 2018, 11:39:32 pm »
Frankly I don't even remember mention of facial nerve in my consult pre-op.....the main concern was being alive when the surgery was over! (I do also recall mention of a question if I would be able to walk and talk though).
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)