Recent Posts

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21
Inquiries / concerned about AN
« Last post by druidul34 on August 13, 2025, 10:06:56 am »
Hey

With all due respect for all people around here stuggling with AN, I need to ask some questions.

I have one-sided tinnitus, right ear.
High-pitched.
Went to ENT - he said normal hearing, but advised for MRI, due to asymmetrical hearing loss.

I don't feel my hearing is worse on the right side though.

No other symptoms.

Few details :

 - it began 3 months ago or at least at that time I became aware of it.
 - I had some nights with poor sleep at work, someone yelled at me, from close range (I work in a hospital)
 - I don't know, whether is my brain, who wants me believe, its not only on the right ear, but sometimes I feel it more centered and I get transient tinnitus on left ear as well, but it's no doubt, much more clear and present on the right ear.
 - when I had audiogram, it was after 4 hrs sleep and my tinnitus was pretty loud and I made some guessing, I remember.

I attach my audiogram.

Is it really so big the asymmetrical hearing? Is a rather big fall at 4Hz. no? I see left ear at 8Hz at 5 dB then plunges to 30 dB at 8Hz?

I am very afraid of acoustic neuroma, despite low probability?

22
Inquiries / Scuba diving after translab surgery?
« Last post by laloo0695 on August 12, 2025, 03:47:27 pm »
Hi,
Does anyone still scuba dive after translab surgery?
23
Microsurgical Options / Scared and not being able to live my life normally post surgery
« Last post by laloo0695 on August 12, 2025, 03:39:42 pm »
I was diagnosed with an AN that is 1.7 cm. I was referred to Dr. Cunningham at Duke who recommended translab surgery because I am a young patient and have severe hearing loss. He seemed confident that they would be able to remove the whole tumor without causing damage to the facial nerve.
I am terrified of the adjustment after the surgery. My biggest fear is not being able to live my life normally or feeling like myself again.
Can you share your experience post-surgery?
24
Radiation / Radiosurgery / Re: Wait n scan vs radiotherapy to reduce AN volume article (2023)
« Last post by mwatto on August 09, 2025, 07:50:19 pm »
Hi Dan -I would love to share info with you. I am happy I chose CK over all and at the moment I have no issues (I had some pretty bad deep ear pain but medical cannabis sorted that out mostly). I will def email you thanks!
25
Eye Issues / Re: Hoping to get a Scleral Lens...
« Last post by Jill Marie on August 09, 2025, 01:51:58 pm »
Kathleen, I'm glad the information was helpful. Several people on this board helped me years ago so it's nice to be able to pay it forward and help others.  Let us know how you are doing! Good luck with whichever lens you end up with.  Jill Marie
26
Radiation / Radiosurgery / Re: Considering Radiation instead of surgery at 30 years old
« Last post by skier on August 08, 2025, 06:20:19 am »
Hi,
I'm sorry you have an Acoustic Neuroma, as it is a very complicated medical issue.

I would recommend watching doctors' educational videos from the ANA website. I used the videos to learn enough to ask important questions of different doctors. I consulted 7 MDs at 5 different institutions while I was in Watch and Wait for 2 years.

My tumor turned out to be growing quickly, compared to the normal growth rates, which meant, for me, that surgery was the better choice over radiation treatment.

I too had been afraid of poor surgical outcomes, generally, but then I decided to go to a hospital/program/surgeons who have a track record of great outcomes. With such a difficult surgery, it is important to have the best doctors. I was willing to travel very far, and had insurance that allowed me to. It turned out to be a great choice for me.

My surgery, at 65 yo, was very successful. You can look on this chatboard for more info from my other notes. It's 2 years now, after my surgery, and I have no regrets.

Wish you all the best in your decisions. Hope you can get a few consults with different MDs, who can review your history, MRI, and symptoms meaningfully and help you decide.

Best,
Skier
27
Radiation / Radiosurgery / Re: Wait n scan vs radiotherapy to reduce AN volume article (2023)
« Last post by DanFouratt on August 08, 2025, 05:41:42 am »
Michele, thank you for the article, you always post interesting article.  Though I will admit this was a little difficult to completely understand the outcome.

I was 62 when I decided on CK for my tumor.  When I had my treatment I was under the belief that facial nerve damage was very low approaching zero.  Some of the recent webinars states this is a little higher.  I had no balance issues, however hearing loss and tinnitus we present.  I put together a matrix of the information gathered and continue to update it.  If you want this reach out to me (Dan4att@gmail.com).

I am happy with the decision I made for me.  I am not saying it is right for everyone, we all need to do what is best for us.  ANs are more frustrating then other medical issues as it is not as easy to make a decision. 

Good Luck on your decision journey.

28
Radiation / Radiosurgery / Re: Considering Radiation instead of surgery at 30 years old
« Last post by DanFouratt on August 08, 2025, 05:24:19 am »
Hello Laloo, Like you I had hearing loss, no balance issue but tinnitus.  I was older and had translab recommended.  Like you I did research. I put together a matrix of the information to help me decide.  If you want that please reach out to me at Dan4att@gmail.com and I will share.  I am not a doctor but gather information and put it together in a form that helped me.  In my research I spoke with many doctors at leading institutes.  The best single advice I received was "when you make your decision do not second guess yourself but focus and working towards the best outcome."

As you can see I went CK and have not looked back.  We each need to make the decision that is right for us.

Good luck on your decision journey.
29
Radiation / Radiosurgery / Re: My AN Story 2015 Sydney to Stanford CK
« Last post by SP on August 06, 2025, 04:14:10 pm »
Thanks so much Michele & Dan  :)

PS my treatment was fractionated over 3 days too.

be well

Stella
30
Eye Issues / Re: Hoping to get a Scleral Lens...
« Last post by KathleenPollard on August 06, 2025, 05:14:59 am »
Jill Marie - Thank you so much.  This was really helpful. Kathleen
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