Author Topic: Suggestions?  (Read 1775 times)

Kaci

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Suggestions?
« on: May 25, 2022, 02:08:17 pm »
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!!

gbly

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Re: Suggestions?
« Reply #1 on: May 27, 2022, 11:07:05 pm »
Kaci,
I did radiation so I don't have surgery, but I did have the synkinesis and tightness.  I had basically lost my hearing that was what gave me my first indication something was up.  I don't know if you have tried botox yet, but I just had my second round and my resting face is so much better.
I will say the AN side does not blink as much, so dry but then overwaters. However, love the results of the botox.  Would recommend looking into it just to see if it helps. Helped my face relax a lot.
Good luck and keep us posted.
GB

donjehle

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Re: Suggestions?
« Reply #2 on: May 28, 2022, 11:58:39 am »
Kaci,

When someone like GB (who has been through a lot) shares their positive experience with botox, it makes me want to recommend it to others as well.  So, it may be worth exploring it as an option.

And please update us on what you decide to do and what is beneficial for you.

Thanks,
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

notaclone13

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Re: Suggestions?
« Reply #3 on: May 30, 2022, 10:00:46 am »
GB, thanks for posting about your good results with boTox. I am one year post radiation and have been experiencing hemifacial spasms for the past 5 months. My neurosurgeon suggested boTox, but I’ve been leery to go down that road. Who does your boTox injection?

alabamajane

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Re: Suggestions?
« Reply #4 on: May 31, 2022, 09:12:05 am »
I responded to one of Kaci’s other posts on this but I have used therapeutic Botox now for several years. Every 3 months, as allowed by insurance, I get several injections around face and eye. It helps tremendously with the synkenisis in various areas.

My doctor is a board certified ophthalmologist specializing in reconstructive plastic surgery of the eye and eye lid area. She has helped relax muscles in several areas of my face that are firing incorrectly. You might ask your ENT for a referral or recommendation .

Good luck. I hope you find a doctor who can help you too!
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

Kaci

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Re: Suggestions?
« Reply #5 on: June 10, 2022, 08:55:02 pm »
Thank you all for your responses and suggestions. I am going to NY for Botox consult next week. A few years back I was going into NY for the Botox I did it twice there but I wasn’t consistent because of the travel. I decided to try someone in CT but the injections made me feel like I did when I first had the surgery it was awful. I was back to not being able to hold air in my mouth, if I tried to use mouthwash for example it just spilled out and I was back to talking funny I had to hold my lip. I was so frustrated but thankfully it wore off.  Lessened learned it was not worth saving on the travel so I’m going back to the experts and will now try to commit to the every 3 month schedule as you all have seemed to have success with it. Hopefully starting PT again too, I stopped with the high copays but I know it’s important. Some days the dry eye is awful but most days I can tolerate it. The synkinesis I think is the hardest part, you just want your face to relax!!! I’m sure the Botox will help that. I do not qualify for any hearing device unfortunately. Still not used to that, I avoid going to a lot of places knowing I will struggle. I’m curious if others have issues with brightness from the sun I haven’t seen anyone mention that. For me, if the sun hits my face it pulls even more and the synkinesis acts up more. Thanks again for listening and I will update.

donjehle

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Re: Suggestions?
« Reply #6 on: June 11, 2022, 09:22:41 am »
Thank you, Kaci, for updating us on your plans.  I hope it goes very well for you next week.  It does make a huge difference if you go to the best experts or someone who happens to be closer.  I wish that everyone who reads these forums could understand that.  It is better to spend the money to travel to the specialists who know what they are doing than to 'save' money for someone located nearer and then spend more money in care in the long term.  Your post is so helpful!  Thank you so much for sharing!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

gbly

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Re: Suggestions?
« Reply #7 on: June 11, 2022, 12:32:48 pm »
Kaci,
Good luck!  Please keep us posted.

Concur with don, sometimes it is important to actually pay so you get the correct results.

Interesting on the sunlight, I too was noticing that the other day, and then that side of the face gets all squinty....so yes I have noticed it but had not realized it until I read your post.

Please keep us posted.
gb

Kaci

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Re: Suggestions?
« Reply #8 on: June 30, 2022, 01:08:59 pm »
UPDATE! I went to NYU and they started the process to have insurance approve the Botox, see how that works first. The facial surgeon discussed a surgery that would involve the nerves & muscles not sure I want to do this curious if any of you have done a surgery like this to help with the facial paralysis? I was interested in a face lift type surgery to even things out she wasnt against it but explained like lifting the eyelid for example you need to be careful because it already doesnt fully shut and dry eye....she also explained that the one side is still always going to pull tighter I am used to it but just want to cosmetically look better

donjehle

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Re: Suggestions?
« Reply #9 on: June 30, 2022, 07:04:11 pm »
Thanks for the update, Kaci!  I was wondering how it was going for you.  I am sure that some on these forums have had the surgery for their facial paralysis (or even a number of surgeries).  They can comment and tell you their experience.  Keep us updated on what you finally do!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

 


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