Recent Posts

Pages: [1] 2 3 ... 10
1
AN Research / How many surgeries are performed per year in US?
« Last post by jenhenho on January 08, 2026, 11:45:57 AM »
Hi all!  I'm wondering how many surgeries per year for AN are performed in the U.S. 
Thanks in advance!
p.s. I'm 6 weeks post retro-sig and doing GREAT!  The prep and waiting was the hardest part for sure!
2
Post-Treatment / Re: Lymphatic and Skin problems post treatment
« Last post by stevehernes on January 05, 2026, 03:55:13 PM »
How is your skin now?
3
ANA Meetings / Patient Education Event in Jacksonville, FL - March 7, 2026 - REGISTER NOW!
« Last post by Director on January 05, 2026, 12:50:27 PM »
ANA Patient Education Event
Hosted by Mayo Clinic
Saturday, March 7, 2026
7:30 am - 3:30 pm ET

Location:
Kinne Auditorium
Cannaday Building
4500 San Pablo Rd S
Jacksonville, FL 32224

Please join the Acoustic Neuroma Association and the team from Mayo Clinic Florida's Acoustic Neuroma Team for a day of patient education, networking, and support.
This in-person event will include presentations from Mayo Clinic’s integrated care team – including neurotologists, neurosurgeons, neurologists, facial plastic surgeons, and audiologists – as they share the latest advances in treatment decision-making, recovery, and patient experience.

Scheduled Topics Include:
Navigating A Diagnosis
Managing Acoustic Neuroma Symptoms
Non-surgical Management and Radiation
Surgical Approaches Panel
Vestibular Therapy
Facial Reanimation
Auditory Rehabilition
Networking Time with Fellow Patients/Caregivers

More information: https://anausa.org/programs/patient-event-mayo-clinic


Questions? Contact stephanierommer@anausa.org

Hope to see you there,

The ANA Team
4
Physicians / Re: Dr. Friedman and Dr. Schwartz- UCSD
« Last post by JosephJames on January 04, 2026, 09:05:32 PM »
Hello, I wanted to share my story for others who are looking at their options.

I had my second AN surgery done at UCSD a few weeks ago.  Dr.'s Friedman and Schwartz are incredible surgeons, and gentlemen too.  I think very highly of them and their program at UCSD.  They did an incredible job on me.  They achieved Gross Total Tumor Resection and simultaneously put in a Ponto BAHA.

I had lost a significant amount of hearing before my first surgery at Loyola (Maywood, IL.  Close to Chicago).  The surgeons there (Leonetti/Anderson) tried to resect the tumor and preserve what hearing I had with a Retrosigmoid approach but I woke up with very little hearing.  I could only hear super loud bass tones, and I scored a zero on word recognition.  Unfortunately, after surgery I also still had a 13mm tumor along my facial nerve. 

I was having bad headaches, so after my 9 month MRI I consulted UCSD and spoke with Dr. Friedman.  He gave me confidence that they could likely resect the whole tumor with another surgery.  In my situation, it was also advised that 'Watch & Wait' would be appropriate, but I'm relatively young (39) and in decent shape, and I wanted to proceed with a second surgery in order to give myself a chance to have the entire tumor taken out. 

My second surgery was a total success.  They got the whole tumor out, and I recovered very quickly.  I'm now back home in Chicago, and will be going back to work soon.

The program at UCSD was by far and away the best medical treatment I have ever received or seen.  Nothing else is in the same class.  From the surgeons (Friedman / Schwartz), to the PA, to the nurses, the hospital itself (Jacobs Medical Center), and the accommodations (Family House @ UCSD), the program is phenomenal. 

I'm so glad that I traveled to California to have my surgery done @ UCSD.  I'm grateful to the Dr's and their whole team there. 

If anyone wants to know more about UCSD or second surgeries, feel free to message me.  Thanks, Joe
5
AN Issues / Re: New Diagnosis, waiting for an appointment with a specialist
« Last post by Mark F. on January 04, 2026, 08:08:25 PM »
I agree with Dan.  I actually started writing down my symptoms and questions as I got them.  It is really easy to forget what you wanted to ask when you are there.   I suggest a journal, and my surgeon was very happy to answer everything I could come up with. 
6
AN Issues / Re: New Diagnosis, waiting for an appointment with a specialist
« Last post by DanFouratt on January 04, 2026, 05:35:59 PM »
Edge,

Please be your own advocate.  Write your questions down and take the sheet with you.  Do not be hesitant to ask anything. Make sure every question on your list is answered.  Do not worry about offending them, they are use to it.  I really think the Doctors appreciate the people who do the research and ask the difficult questions. I remember where I was peppering my ENT with questions.  I was asking a lot.  He finally looked at me as said, "you have not ask the most important question, 'This is not my first rodeo".

Ask everything you want,

Dan
7
Radiation / Radiosurgery / Re: Gamma Knife Surgery Scheduled
« Last post by DanFouratt on January 04, 2026, 05:25:24 PM »
Rose,

My radiation treatment with a non event. I had the procedure in the morning and BBQ that afternoon. I was a one and done, not sure what you are doing. Recently a friend had a 5 treatment procedure and she took public transportation.  I wished I was around to help her but the story goes to say how the process is not difficult.

Good luck next week,

Dan
8
Radiation / Radiosurgery / Re: Radiosurgery scheduled this week!
« Last post by DanFouratt on January 04, 2026, 03:56:02 PM »
Rose,

I am not a doctor so this is not medical advice.  I did not see a neurologist in my CK journey.

Dan
9
Radiation / Radiosurgery / Re: 2 years Post CK
« Last post by DanFouratt on January 04, 2026, 03:52:47 PM »
Rose,


Good luck on you treatment.  The Gama Knife and Cyber knife refer the the name of the machine that performs the operation.  Dr. Gregory Russo Dartmouth puts it best. (webinar 07/27/22 and 5/1/25), They all will get the job done.
Good Luck you will do well,

Dan
10
AN Issues / Re: New Diagnosis, waiting for an appointment with a specialist
« Last post by edgedancer on January 04, 2026, 02:58:25 PM »
Mark, that’s an awesome story and filled with hope. I really appreciate hearing it!

I do have questions about Hopkins, I have an appointment with them in February, and I live in MD, so it would be nice to go there. I’m not sure what the appropriate way to ask questions about clinics is or where the appropriate place is….
Pages: [1] 2 3 ... 10