Recent Posts

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51
Post-Treatment / Re: 3 year MRI coming up
« Last post by andrewiscycling on May 27, 2025, 06:27:36 pm »
We make the best decisions we can given the information we have at the moment.  Nothing would have changed it other than knowing the future. 

Breathe, have a reality check, and consult every resource you can to obtain the best information you can.  Be confident in your decision again, you got this!
52
AN Issues / Re: 12mm to 14mm in 3 months
« Last post by Kamama62 on May 23, 2025, 08:30:04 am »
sissyn

How did the MRI go?
53
Pre-Treatment Options / Re: Where do I go from here?
« Last post by StarryNights123 on May 22, 2025, 02:51:37 pm »
Quote from: stevehernes on May 22, 2025, 02:47:22 pm
how are you doing now?

Hi Steve. I had surgery a month ago in Vienna and unfortunately had a CSF leak and pneumocephalus, eventually necessitating a second repair surgery and a total of 25 days in the hospital.

I lost hearing in the affected ear, but face wasn't affected at all. Experiencing brain fog and I walk like I'm drunk, but it's still early.
54
Pre-Treatment Options / Re: Where do I go from here?
« Last post by stevehernes on May 22, 2025, 02:47:22 pm »
How are you doing now? I hope things are starting to look up for you. I can totally relate—I wasn’t able to work for a couple of months either, and it really threw me off. During that time, I mostly just stayed home, watched way too much TV, and oddly enough, spent a surprising amount of time chatting with ea sports customer support because some of my channels and services kept acting up. It’s funny how those little tech issues can become your biggest distraction when you’ve got too much time on your hands. Hopefully, things are getting back on track for both of us.
55
Balance Issues / Re: Vertigo and inability to work
« Last post by stevehernes on May 22, 2025, 02:46:16 pm »
How are you doing now? I hope things are starting to look up for you. I can totally relate—I wasn’t able to work for a couple of months either, and it really threw me off. During that time, I mostly just stayed home, watched way too much TV, and oddly enough, spent a surprising amount of time chatting with ea sports customer support because some of my channels and services kept acting up. It’s funny how those little tech issues can become your biggest distraction when you’ve got too much time on your hands. Hopefully, things are getting back on track for both of us.
56
For those in the 'watch and wait' status / Re: Eye Twitching
« Last post by sissyn on May 22, 2025, 11:49:32 am »
thank you all for validating that I'm not losing my mind.  Counting down the days for a resolution whatever that may be.  Thank you
57
Inquiries / Handicap placard
« Last post by GMDizzyndeaf2 on May 22, 2025, 11:23:38 am »
Hello,
 Has anyone been approved for a handicap placard? My balance is not good in certain weather conditions and walking far in a parking lot isn’t safe. I am wondering if anyone else has this problem and was approved for the handicap parking placard.
Thank you for replies!
58
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
59
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.
60
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.
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