Author Topic: So afraid! Facial parslysis by Gamma after surgery  (Read 3521 times)

catlover

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  • 13 days post-op. I still have my smile!
So afraid! Facial parslysis by Gamma after surgery
« on: May 09, 2016, 11:47:14 am »
Please help!
I'm at hospital for radiatorn ny Gamma knife tomorrow and was told
by the dockor that risks for permanent facial parslysis are bigger
after been through a surgery because the facial nerve maybe
has changed its location dyr to surgery. 2,5% risks of permanent
facial parslysis and 2,5% risks for paralysis that may disappear.
95% chance of no negative effects. I' m so afraid of kring the 2,5%
that get permanent facial parslysis. Has anyone been through this?
Helene in Sweden
AN found in February, 2006, size 0,8 cm
Surgery 20th May, 2009, retrosigmoid approach
SSD and balance issues
Forever grateful to Dr Siesjo and Dr Kahlon, University Hospital of Lund, Sweden
Two AN:s found 1st March, 2016
Waiting for GK

caryawilson

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Re: So afraid! Facial parslysis by Gamma after surgery
« Reply #1 on: May 09, 2016, 04:01:51 pm »
In my experience, stats with AN are crazy. There are so many factors, it's hard to give an accurate answer. To be honest, the numbers don't look reasonable. 2.5% for permanent paralysis and the same number for ANY weekness? I would think the later to be higher.

In the end, I would agree a prior surgery would increase the risk but this would be hard to quantity.

My advice. Once you choose your treatment, put your faith in your medical team and block out the noise.

BTW - my facial nerve was removed during surgery. Based on all my reading I thought this was a worse outcome than death especially for a single 47 year old man. However, after a year I'm doing great with a high quality of life.

Since you already had surgery you know the pitfalls of the AN club. It's really hard to predict our list of issues. All we can do is deal with them when they arise.
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

catlover

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Re: So afraid! Facial parslysis by Gamma after surgery
« Reply #2 on: May 13, 2016, 08:17:47 am »
Thank you for replying! I descided to do the Gamma Knife on Tuesday and I hope I tok the right descition and that I don't be one of those who gets facial paralysis that can't be repaired. I will take one day at a time and try not to worry.
Regards from Helene in Sweden
AN found in February, 2006, size 0,8 cm
Surgery 20th May, 2009, retrosigmoid approach
SSD and balance issues
Forever grateful to Dr Siesjo and Dr Kahlon, University Hospital of Lund, Sweden
Two AN:s found 1st March, 2016
Waiting for GK

PaulW

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Re: So afraid! Facial parslysis by Gamma after surgery
« Reply #3 on: May 16, 2016, 02:04:04 pm »
Please ask how much radiation they plan to use to treat your tumour.
It should be a marginal dose of 13 Gy or less.
The international radiosurgery association recommends AN's are treated with 12-13Gy
http://www.irsa.org/AN%20Guideline.pdf

According to this document and many others the risk of permanant facial deficits are 0% when 13Gy or less are used. However there is a risk of facial palsy when larger doses are used
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!