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MVD surgery for Hemifacial Spasms

Brain & Nervous System | Last Active: Apr 2 6:08pm | Replies (54)

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@jmh

Hi Sharon and group
I believe everyone's experience is so different but let me share with you what happened. The bottom line for me .....it is a hit and miss with both the surgeries and the BOTOX. It will never go away and the blessing in it all there is no pain so I always consider myself fortunate compared to other illnesses/disorders I could have.
2016..... my right eye started to flicker so I thought it was a tired eye but got more frequent

2017-Nov 2019 .... the spasms increased in frequency and was all over my right side of my face and after an MRI in Dec.2019 I had my first surgery

Dec.2020- June 2020..... - all good, thought it was done

Sept 2020.... got another MRI as the spasms were right back and frequent - even at night

Sept.2020-June 2021....spasms were awful, effecting my eyesight,

June 2021 ..had my second surgery and the neurosurgeon said there is a 90% chance of losing my hearing because they are going closer to the nerve by the right war
He was right..... I am totally deaf on my right ear as soon as I awoke from the surgery
June 2021 - Dec.2021 - recovery was hard as I had balance issues, nausea cannot walk alone without using a stick ( to this day) Could not read or sit by a computer for very long (30 minutes)

Jan.2022 to present - spasms returned hearing is gone, still no pain. I am now getting botox every 6 weeks as we started every 3 months and that was not working. Now, it is still hit and miss with the 6 weeks Botox. Some times it helps totally and others within a few days the spasms are there
Yes my face looks concorted at times, so I just joke about it as I am with the public ( teaching) a lot and the spasms can be a distraction. So I just own it and also have a real appreciation for what people who are "different" in some way can experience.

Also one neurosurgeon I spoke with about botox said he was surprised I went for a second surgery as he said these are very dangerous,,,
There you all have ot...my story:-)

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Replies to "Hi Sharon and group I believe everyone's experience is so different but let me share with..."

oops meant Dec,2019 - June 2020