Recent Posts

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61
Eye Issues / article on treatment for dry eye post surgery
« Last post by mwatto on July 23, 2025, 08:03:02 pm »
Just read this 2025 article and thought I would share it: https://www.sciencedirect.com/science/article/pii/S2451993624002512
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Eye Issues / Hoping to get a Scleral Lens...
« Last post by KathleenPollard on July 22, 2025, 12:38:23 pm »
Hi! I am so happy to be able to connect with all of you on this forum.  Your insight is priceless.
Here is where I am:
- I cannot close my right eye due to my facial nerve being severed during my AN surgery in 2022. 
- I have a gold weight and can MOSTLY close it at night.
- I use lacrilube or systane overnight and ReFresh drops all day long.  Some days are better than others.
Recently, I got fit for a Scleral Lens.  When I went to put my new lens in, I couldn't see a thing.  I thought that maybe the residual lube from the night before was making it cloudy.  My doctor ordered a different lens. I will try that one in a few weeks.
Here are my questions:
- Is there an overnight drop that I could try instead of the lube?
- Did this happen to anyone else?
- Can I get a SL if I can't close my eye over it to "clean it"?
Thank you so much!  I think the lens sounds amazing and I would really like it, but I don't want to buy it and then wish I hadn't.
Kathleen
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Radiation / Radiosurgery / Re: D-Day for ALF - Gamma Knife - January 22, 2013
« Last post by mwatto on July 20, 2025, 07:54:43 pm »
Hi there! This is interesting!

 I love hearing from long term members-its really reassuring for the rest of us! I am only 6 years out- doing ok after CK but I still get nerve pain (that side eye and ear and deep in head if I lie down)

Did your last MRI reveal any shrinking? It looks like its been stable for a few years now.
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AN Issues / Re: Scalp burning after mri
« Last post by ankent on July 16, 2025, 09:02:07 pm »
While I haven’t experienced it personally, I’ve seen others mention strange nerve or scalp sensations after an MRI, especially if contrast was used.
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Hearing Issues / Did Cros hearing aid make tinnitus worse
« Last post by GMDizzyndeaf2 on July 10, 2025, 07:37:05 am »
Hello Community,

I just got Cros hearing aids for my SSD from GM and am really trying to get them to stay in my ear canals. 🤷🏻‍♀️
But, my main issue is my tinnitus seems worse when I take them out. Is this normal??? Is this a sign that they aren’t good for me or is it a temporary thing? I would LOVE to hear what’s being said on my left AN side but is it at the cost of uncomfortable tinnitus forever?
I will really appreciate information from CROS wearers if I should stop wearing them before doing more damage.
Thank you so much!



66
AN Issues / Re: 12mm to 14mm in 3 months
« Last post by Mark F. on July 08, 2025, 01:30:56 pm »
Tomorrow will be a blur and you won't be able to check on here so hopefully you get this message before your surgery.  We will be thinking about you and hoping all goes well tomorrow, and you have a speedy recovery.  I know from experience that this is the most stressful part from now until they wheel you into in the operating room it's easy to second guess if this is the right thing.   But remember you don't want the damage to continue.  When you feel up to it give us an update.

Good luck tomorrow.
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AN Issues / Re: New member, symptoms questions.
« Last post by greenamw on July 08, 2025, 11:31:28 am »
Your speech and double vision symptoms likely relate to the tumor pressing on nearby nerves or brain areas. It’s common and worth mentioning to your neurosurgeon. These issues support your decision for surgery. Your health and activity level are good signs for recovery. The pre-op physical, blood work, and MRI before surgery are standard steps.
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Since CSF leak and usual treatments aren’t helping, look into craniocervical instability or tethered cord, they can cause similar headaches and often get missed.
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AN Issues / Re: 12mm to 14mm in 3 months
« Last post by greenamw on July 08, 2025, 11:23:31 am »
Many choose surgery quickly in cases like this to prevent permanent damage. Waiting risks more nerve damage and harder recovery.

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Inquiries / Re: Mayo for Treatment/s
« Last post by hypothesisgrumpy on July 08, 2025, 02:08:16 am »
Greetings Kamama62-

I was treated at Mayo in MN. Started with Gamma in 2019 - deemed to be a failure (part died party kept growing) so I had translab surgery in 2023.  Let me know what questions you have!
After the Gamma treatment didn’t fully succeed, how did they help you transition into surgery—was it a smooth process?
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