Recent Posts

Pages: [1] 2 3 ... 10
1
Hearing Issues / Re: Noise cancellation
« Last post by carriekartman on September 10, 2026, 07:57:49 PM »
Hi Folks,

Agreed tinnitus sucks. I am trying a new device called a Vibe made by Resound, which claims to help, but I'm only three days in, and no progress yet. it came with a 30 day money back guarantee, so am giving a whirl, fingers crossed. I'll certainly post if it works! Meanwhile, if you don't know about Lenire, my ENT doc suggested it, and it is FDA approved for tinnitus. Kind of pricy, and you need to get to one of their clinics, but maybe worthwhile?

Carrie
2
NF2 / Re: One AN and one meningioma
« Last post by RGG on September 09, 2026, 04:51:39 PM »
Quote
Hi Rumen,

I%u2019m sorry to hear about your AN regrowth and the new meningioma. I can understand why you%u2019re worried about NF2, especially with having more than one tumor.

Are you going to have radiosurgery for the regrowth of your AN?

Where is your meningioma located? Is it at the skull base?

I also have an AN and an incidental 4 mm meningioma. Mine is located at the skull base, which unfortunately is not an easy area to operate on. The meningioma was found incidentally when I had an MRI for my AN.

I had radiosurgery for my AN in March 2026. My neurosurgeon has told me that, with a meningioma as small as 4 mm, treatment may not be needed for many years%u2014possibly 5 or even 10 years%u2014depending on whether it grows and other factors. It might be worth asking your neurosurgeon about the prognosis and what they expect in your particular case, especially since yours is 1 cm.

I was tested for NF2 in June, but I%u2019m still waiting for my results. From what I understand, the genetic test is considered quite accurate, although the interpretation can depend on the specific situation.

I don%u2019t have any known family history of NF2 either. I hope your appointment goes well and that you get some reassuring answers. Please let us know how your NF2 testing turns out.

Hi Viva, thanks for your response. 

I still haven't heard back from the NF2 clinic and was told it may take several months, so I'm not sure yet if they'll even think my case warrants testing (I'm in Canada and things work a bit differently here).  My meningioma is "parafalcine", it's growing in between the two hemispheres from the main sinus (vein) at the top of the brain, but still not compressing it.  The doctors seem to think radiation will be my best choice if it keeps growing.  In my case the two tumors started growing over 15 years apart, so I'm hopeful it's just a random occurrence.

I already did GK for my AN regrowth 2 years ago, and after initial slight swelling and stabilization at the 1 year mark, it grew more at 2 years, so now they're not sure if it pseudoprogression or not. I'm having another MRI in December.

Wish you luck with your test result!
3
Radiation / Radiosurgery / Re: Can/Does Radiosurgery reduce dizziness/disequilibrium?
« Last post by MJCM on September 03, 2026, 06:26:15 PM »
Ashman-
I read your post and felt like I could have written it myself. I was diagnosed with right side AN in Jan 2025 and had been having disequilibrium, balance issues and what I refer to as "fuzzy brain" sensation for over a year. Finally, I convinced my ENT to do an MRI and there it was. I then started vestibular therapy for 4 months and it worked magic. I felt so much better. I continued doing the home exercise program my therapist prescribed and the nasty symptoms went away, though my hearing continued to decline. Unfortunately, the tumor continued to grow and I told my neurotologist I really did not want to have surgery. I think because of that, he recommended I not wait and do radiation. I had 5 sessions of cyber knife in May 2026 and other than feeling tired, came through it feeling OK. Then about 6 weeks later, all of the imbalance and "fuzzy brain" issues come roaring back. I am now back in vestibular therapy but do not seem to be making any progress yet. I am hoping it will start to kick in like last time and I will feel better. My MRI is not till November. I would be curious to hear if others have had this experience after radio surgery and what may have helped.
4
Hearing Issues / Re: Cochlear Implant
« Last post by Director on September 02, 2026, 08:06:31 AM »
Dear DaveK,

Feel free to reach out to the ANA about getting connected with peer mentors who have a CI at mentors@anausa.org. 

Also, there is a webinar on this topic scheduled for Wednesday, Sept. 9 at 11 a.m. ET.  You can find more information here:
https://anausa.org/programs/support-groups/upcoming-events/

Thanks,

The ANA Team
5
Hearing Issues / Cochlear Implant
« Last post by DaveK on August 31, 2026, 08:11:12 AM »
Hi, i received Gamma Knife back in 2021 and since then growth has stopped and even some minor shrinkage has occurred. So i'm at the point where i'm considering a Cochlear Implant. I begin the evaluation/qualification process this week at NYU.

I'm hoping some of the Cochlear Implant recipients can share their experiences here whether they be positive, negative or deep regrets.

I have some balance issues already and i'm concerned the implant could worsen my balance or even potentially cause vertigo. 

Thank you!
6
NF2 / Re: One AN and one meningioma
« Last post by Viva on August 30, 2026, 11:14:22 AM »
Hi Rumen,

I’m sorry to hear about your AN regrowth and the new meningioma. I can understand why you’re worried about NF2, especially with having more than one tumor.

Are you going to have radiosurgery for the regrowth of your AN?

Where is your meningioma located? Is it at the skull base?

I also have an AN and an incidental 4 mm meningioma. Mine is located at the skull base, which unfortunately is not an easy area to operate on. The meningioma was found incidentally when I had an MRI for my AN.

I had radiosurgery for my AN in March 2026. My neurosurgeon has told me that, with a meningioma as small as 4 mm, treatment may not be needed for many years—possibly 5 or even 10 years—depending on whether it grows and other factors. It might be worth asking your neurosurgeon about the prognosis and what they expect in your particular case, especially since yours is 1 cm.

I was tested for NF2 in June, but I’m still waiting for my results. From what I understand, the genetic test is considered quite accurate, although the interpretation can depend on the specific situation.

I don’t have any known family history of NF2 either. I hope your appointment goes well and that you get some reassuring answers. Please let us know how your NF2 testing turns out.
7
Physicians / Dr. Peter Santa Maria and Dr. Zenonos - UPMC (Pittsburgh)
« Last post by rconrad on August 23, 2026, 05:47:00 PM »
One of my top picks for translab surgery is with Dr. Peter Santa Maria and Dr. Zenonos at UPMC. They seem extremely experienced and have made me feel confident in the process.  I haven't seen a single post on these forums about treatment at UPMC.  Does anyone have an experience at UPMC that they can share?
8
Inquiries / Re: Looking for AN Patients who have had an organ transplant
« Last post by ppearl214 on August 22, 2026, 06:01:15 AM »
Hi Leah,

Hello all! Care to chime in?

May be a challenge to find anyone that has endured any kind of transplant as well as deal with an AN.  Hoping someone responds here to help.

I can share that I have had to deal with other ailments (although not a transplant) while dealing with my AN.  Not unusual here to find others that tried to manage other issues while handling their AN situations.  Use the "search" option from the discussion forum home page to see historical inputs from others that have had to deal with multitude of issues along with their unique AN journey.  Just a thought.

Please reach out to the ANA office for the peer mentor list. I know many names on the list (besides myself) and definately a good resource to reach out to others.

hang in there!
Phyllis

Quote from: LeahJ on August 04, 2026, 10:41:56 AM
Still looking for anyone who has had a transplant or is facing transplant alongside the AN diagnosis...

Also trying to find an ANA Mentor, but having issues logging into the page to find the list.

Leah J
9
For those in the 'watch and wait' status / Re: Overly reluctant doctor?
« Last post by Bufoeal on August 18, 2026, 02:06:00 AM »
Quote from: Plane23 on April 01, 2026, 10:18:51 AM
Hello  slope game,

I am a 36 year old male who was diagnosed with an acoustic neuroma last November. My current symptoms are tinnitus and mild to severe hearing loss on the left hand side. My AN measures 24x24x23mm.
I was referred on to an ENT surgeon who took a look at my case and decided to take a wait and see approach with another scan to be conducted in September.

From what I've read this size of AN would warrant a more immediate reaction but maybe I'm just being impatient. Has anybody had an AN of that size that they've continued watch and wait on? Would anyone recommend getting a second opinion?

Thanks.
Getting a second opinion, especially from a multidisciplinary team or a specialized neurotologist, is completely reasonable for a 24mm tumor. You might want to ask them specifically how close the tumor is to your brainstem and what their criteria are for moving from observation to active treatment.
10
For those in the 'watch and wait' status / Re: Is Gamma Knife the same as Cyber Knife? My doc says it is time to move on my AN.
« Last post by bunalembic on August 18, 2026, 12:42:56 AM »
Yes — CyberKnife (CK) and Gamma Knife (GK) are different machines, but they are both forms of stereotactic radiosurgery/radiotherapy (SRS/FSRT) used to treat vestibular schwannoma (acoustic neuroma). So when you're reading about Gamma Knife, a lot of the general principles apply to CyberKnife, but the exact hearing and tinnitus risks aren't necessarily identical.
Pages: [1] 2 3 ... 10