Author Topic: No improvement at 6 mo post-op  (Read 686 times)

tuxedocat

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No improvement at 6 mo post-op
« on: April 11, 2019, 04:10:44 pm »
Hello,

I had a 4 cm right acoustic neuroma resected 6 mo ago (while 24 wks pregnant) with immediate HB 5 facial paralysis after surgery. I have had little to no improvement since this time. I had a facial EMG yesterday that showed really low level activity in branches to eye and mouth, but no movement clinically. However, I am starting to lose hope.  Just curious if others have had facial nerve recovery that started later than 6 mo post op. Thanks!
4 cm right AN resected 10/20/18 at NYU
HB4 facial palsy

lablove

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Re: No improvement at 6 mo post-op
« Reply #1 on: April 11, 2019, 09:14:54 pm »
Hi Tuxedocat,
Please do not lose hope. Your healing continues & you will slowly improve. I didn't show any great improvement until 8 months or more postop & even today almost 2 years post I am still feeling gradual return to function. I am so sorry you are having to be brave & dealing with this, but we are all with you.
Warmly,
Colleen aka lablove

Patti

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Re: No improvement at 6 mo post-op
« Reply #2 on: April 12, 2019, 05:45:09 am »
My tumor was the same size, and I was also youngish (38). After two months my forehead had movement which thrilled the doctor (and me!). The face and eye took several years to get to a point where people who hadn't seen me since my surgery commented on how much better I looked and that my smile and eye closure issue were hardly noticeable. I feel pretty at the age of 56.  Best of luck to you!!!!! You can e-mail me if you want.  Patti
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

tuxedocat

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Re: No improvement at 6 mo post-op
« Reply #3 on: April 12, 2019, 03:37:11 pm »
Thank you so much for the inspiring messages, I really appreciate it! I guess continued patience is the key, however your accounts make me feel better!
4 cm right AN resected 10/20/18 at NYU
HB4 facial palsy

MT

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  • Hoping to recover from facial palsy...
Re: No improvement at 6 mo post-op
« Reply #4 on: April 23, 2019, 11:10:40 am »
My tumor was half the size you mentioned (details in my signatures below) and my assessment was HB scale 4 (surgeons called it something between 3 to 4).

I am just 3 days to complete 6th month and guess what, ZERO improvement. Only things that I can assume improved are 1) my ability to swallow food, 2) swelling on face has gone... nothing else. I still can't close one eye, can't open my mouth big enough to take a bite of burger, smile from left side shows I am happily married while the right side is as if my girlfriend just ditched me.

I have been told to hold the horses, wait more 6 months then consider electronic stimulation and upon no results consider facial reanimation...


Wish you good luck!
No symptoms except mild hearing loss
RS procedure on 26-Oct-18 (2.7 x 2.5 cm AN)
Deafness and facial palsy on right side
26-Feb-19 MRI showed 0.8 cm of leftover tumor
Slight movement on ~7-Jul-19 but mostly paralyzed

Full story:
https://www.anausa.org/smf/index.php?topic=24255.msg97977829

tuxedocat

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Re: No improvement at 6 mo post-op
« Reply #5 on: April 30, 2019, 02:23:43 pm »
Hi MT,

Thanks so much for the reply! So sorry you are going through this also! Yeah, I am still deciding whether to undergo surgery around 8 months post surgery or continue waiting.

However, just a piece of unsolicited advice. Every single doctor I have spoken to (at least 3) recommended not to do electrical stimulation, as it can cause one to have an exaggerated distorted smile (described as a "joker lip"), so if I were you I would not undergo E-stim, even after a year.

Thanks for your response!
4 cm right AN resected 10/20/18 at NYU
HB4 facial palsy

ColleenS

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Re: No improvement at 6 mo post-op
« Reply #6 on: May 22, 2019, 11:08:54 am »
I did not have any facial issues with the surgery but after radiation things change. About 4 1/2 months after 5 radiation sessions on my tumor that grew back I developed facial weakness, numbness, tongue, and eye affected too. So now I am about 3 months in and I see/feel slight improvements. I have hope but it is such a slow healing process. Hang in there.
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14 & sprung on 5/15
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness