Suggestions?

[Kaci]

I have not posted in awhile, this is mostly just to vent but maybe some of you have suggestions to share. I had my acoustic neuroma removed in 2017, completely lost the hearing on my right side, of course balance too, synkinesis, no tears right side. I struggle with constant dryness in right eye and still adjusting to hearing loss. I think what bothers me the most is the constant pulling of the muscles on the right side of face and just want it to relax. Also very sensitive to outside brightness. Just hoping to hear of any success stories, things you may have tried that helped with these issues. Also considering plastic surgery to even things out, curious if anyone else ended up doing this

Thank you!!

[donjehle]

Thank you, Kaci, for posting again!  This is the right place to come to because this community knows what it is like to completely lose hearing on one side (as I have) and to lose balance (as I have) and to experience synkinesis and no tears and sonstant dryness, and the facial issues.  So feel free to vent because you have empathetic ears and those who have experienced similar challenges.

And be sure to let us know if you choose to have plastic surgery or anything else that helps.

These forums are most helpful when everyone shares with each other.

Best wishes on your continued journey!
Don

[alabamajane]

Kaci,,
Sorry you are having such problems after surgery. I had translab surgery with facial nerve involvement in 2011. I also had the 12/7 nerve surgery because my facial nerve was severed. This has helped me get movement and tone back in my face.
I have a BAHA hearing device to help with the deafness.
Haven’t found much relief from constant balance issue,,,

I too have some synkinesis problems,, I’d say mild pulling and eye not closing correctly.
I would highly recommend therapeutic Botox. I have it done every 3 months ( as that is what insurance allows) and it has helped me immensely. It relaxes my pulling and helps my eye close better. It is just my suggestion,,, it may not be something you would like to do. Talk to a doctor.
I hope you find some relief very soon !! These issues can  be very depressing !
Jane

[mwatto]

I wonder if botox might help the muscles relax?

[Kaci]

Thank you all for your support and suggestions. I have an appt next week in New York for Botox consult and discuss plastic surgery options to try and even things out. I am also going to start up PT again.

[theresamiller]

Hi, sorry to hear of your challenges and frustration%u2026I wonder if Acupuncture might help?  I have used for pain and sleep issues in the past (first session had me sleeping like a rock!), pain took 3-4 sessions.  I just went back 2 weeks after my middle fossa to help with sleep and dizziness.

As others have said botox might also help.

UCSD%u2019s AN Program, (Friedman & Schwartz) perform surgery re: facial paralysis, you may want to email them.

If they say they can help you, I highly recommend them !!!!  My Middle Fossa 5/26/22 was 100% successful!

Wishing you success in finding relief!

[mwatto]

I have dry eyes and  finding Cationorm to be effective. Its OTC and both my optometrists said its excellent. It lasts longer than most other lubricating eye drops.

[Kaci]

@theresamiller, may I ask if Friedman performed the surgery of removal or was it surgery to help with the facial paralysis? I met with the plastic surgeon at NYU where my surgery was, we are starting with Botox waiting on insurance approval. She did talk about surgery for muscles & nerves but I was thinking just a facelift type surgery to even things out. She said we can do that just not sure what way I want to approach this. I havent heard of too many people having actual surgery on the nerves & muscles I would be so interested to hear your story if thats what you had

@mwatto, thank you I have never heard of Cationorm but I will research this

[gbly]

good luck Kaci and please keep us posted on way forward.
gb