Recent Posts

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51
For those in the 'watch and wait' status / Re: Eye Twitching
« Last post by skier on May 22, 2025, 06:08:24 am »
Hi Sissyn,

I had facial twitches related to my AN, little tiny twitches that were not disruptive or noticeable, except to me. These were a few seconds at a time, often for a period of day. They came and went for two years of watch and wait.

I also had little twitches around my eye on the AN side, and numbness (sort of) around that side of my mouth and tongue. Same sort of frequency as above.

Surgery relieved all of them. I have the tiniest of all former twitches sometimes below that eye, but I consider it a great reminder of a successful outcome, honestly.

My Acoustic Neuroma was on the Vestibular nerve, and it was not originating on the facial nerve--but it was "bothering" the facial nerve before surgical removal. (That's my non-medical description.)

I hope your consult went well--and I hope you find relief soon.

Best,
Skier
52
For those in the 'watch and wait' status / Re: Eye Twitching
« Last post by mwatto on May 21, 2025, 09:11:37 pm »
I have had this on and off recently in my non-AN side eye. Very annoying!  However I had my annual MRI done two months ago and everything stable so it cant be the AN. Could be dry eyes and blepharitus as my daughter has the same thing going on - also eye strain from computer (you dont blink enough my optom told me when on) so am using eye drops, magnesium, warm eye compress to help moebian glands as mine are in bad shape so not enough natural oils and I clean clean my eye lids with OcuSoft at night plus wearing a good eye mask at night and it has improved. In fact it stopped a week ago and has not returned.
53
For those in the 'watch and wait' status / Eye Twitching
« Last post by sissyn on May 21, 2025, 02:46:13 pm »
The last two days my left eye has been twitching on/off for no particular reason. I have the facial tingling, like I've been shot with Novocain waiting for dental treatment.  This tingling comes and goes which I'm used to, but this eye thing is not something I want to get used to.  Anyone else have this issue?  I see the neurosurgeon on June 6th to determine next steps.
54
AN Issues / Re: New member, symptoms questions.
« Last post by Jill Marie on May 20, 2025, 10:32:24 pm »
Hi Mark,

Really glad to hear that you put your "Ruby Slippers on, tapped them 3 times and now you're home!" Congratulations!! Glad they got the infection under control so you can at least eat soft food and got to go home. Being off the pain meds so soon is definitely a plus, less side effects.  What a huge difference in your life now having the awful constant pain gone. I'm so very happy for you! I bet you can't wait to celebrate how well you're doing.  Perhaps not dealing with the pain anymore is your celebration! 

Glad you were able to have a computer so you could check the website and update us!  Jill

55
Post-Treatment / Re: Tinnitus: What sort of sound do you hear?
« Last post by mwatto on May 20, 2025, 08:21:33 pm »
I have found white noise at night ( we use spotify 737 cabin noise ) is excellent. I dont have much tinnitus but this even helps with any interfering noise like snoring etc.
56
Post-Treatment / Re: Tinnitus: What sort of sound do you hear?
« Last post by ESH on May 20, 2025, 02:21:05 pm »
Have you tried using music? My tinnitus is particularly bothersome at night, but I got some headband-type headphones, set my phone to mono, and now play gentle classical music softly. I have the phone set so the music goes off on its own after 45-60 minutes (depending on which playlist.)

I find it helps a lot.
57
Post-Treatment / Re: Tinnitus: What sort of sound do you hear?
« Last post by stevehernes on May 20, 2025, 01:21:35 pm »
I started having tinnitus about two months ago, and it’s been really tough—especially when it comes to sleeping. The constant ringing or buzzing at night makes it hard to unwind and fall asleep peacefully. I’ve decided to try a few things to see if they help: first, I’ll be getting a professional ear cleaning, just in case there’s any blockage contributing to the problem, and I’ve also started listening to white noise at night to help mask the sound a bit. If anyone’s been through this, I’d really appreciate any advice or tips you found helpful. Are there specific apps or sound machines that worked for you? Did you notice any foods, stress triggers, or habits that made it worse—or better?
58
AN Issues / Re: New member, symptoms questions.
« Last post by ESH on May 20, 2025, 10:12:45 am »
Hooray!

Ellen
59
AN Issues / Re: New member, symptoms questions.
« Last post by Mark F. on May 20, 2025, 09:00:47 am »
Officially released from the hospital!!!   7 days here was longer than I expected, but three of those are due to the throat infection problem.   I could have been released from a neuro standpoint Saturday.   
60
AN Issues / Re: New member, symptoms questions.
« Last post by Mark F. on May 19, 2025, 09:47:33 am »
Ok I did hit a setback on swallowing.   Still not on solid food, and now but just got moved up from liquid only to soft food.  I'm told I probably won't be going home today, maybe tomorrow depending on how it goes with the food.  The doctors seem to think I came in with a mild infection and the combination of the surgery, breathing tube, and steroids just blew it up into a full blown Thrush infection in my esophagus.   It is getting better, sad I might not go home as soon as I wanted, but it's temporary.   The big thing for me is I have now been off my pain medication for 3 days already.   I was surprised to learn that the minor amount of pain I have now is absolutely nothing compared to what I apparently was living with every day of my life for the last three years.

Jill:  One thing you have in the hospital is a lot of free time, way too much actually so I've been watching the website a couple times a day.
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