Author Topic: Newly Diagnosed - Looking for Experiences  (Read 4184 times)

AztecJess

  • Newbie
  • *
  • Posts: 1
Newly Diagnosed - Looking for Experiences
« on: October 24, 2020, 04:55:31 pm »
Hello Everyone,

My name is Jessica, I'm 32, and I was diagnosed with a 3cm AN on my right side last week after noticing hearing loss in my right ear over the past couple of years. I have been doing some independent research while I wait to meet with doctors to determine a path forward. Based on my AN size and my age it looks like the Translab surgery is probably going to be my best option. My ENT doctor referred me to a doctor at Georgetown University and I met with him last week and he recommends the Translab surgery. I also had a phone consultation with UCSD and they recommended this path as well. I am also looking to meet with doctors at Johns Hopkins (I live in Maryland).

From reading the forum it looks like people have had a good experience with UCSD, but I'm wondering if anyone has experience with Georgetown or Johns Hopkins. I am able to travel to SD, but since Georgetown/Johns Hopkins are in my area I'd like to explore those as well. 

Any information you may have would be greatly appreciated. I'm sad to have joined this club, but from reading the forum it seems like a very caring group of people and for that I'm thankful.

Greece Lover

  • Sr. Member
  • ****
  • Posts: 341
Re: Newly Diagnosed - Looking for Experiences
« Reply #1 on: October 26, 2020, 01:49:07 pm »
AztecJess,

So sorry you had to join the group.  It sounds like you are off to making smart choices and gathering several opinions, which is smart.  If you've got the info from UCSD, that's also very good, since everyone says they do a great job. I"ve never read of anyone who regretting flying out west for this. 
I don't know the docs at the places you've mentioned, but I'm pretty sure I've seen Johns Hopkins come up in discussion. As you've probably read, one of the most important things is a high volume center: the more they do this, then usually the better their outcomes will be. 
This surgery isn't fun, but it's doable and a normal life awaits you on the other side!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

michellef08

  • Full Member
  • ***
  • Posts: 112
Re: Newly Diagnosed - Looking for Experiences
« Reply #2 on: December 28, 2020, 09:25:31 am »
Hi Jessica,
I am the co-leader of the Washington DC ANA support group! I was 27 when diagnosed back in 2013. I flew out to California to have my surgery at House with Dr. Schwartz and Dr. Friedman (who have since moved to UCSD), and would highly recommend them!! I had a great outcome.

Happy to discuss local options with you as well, and also we have a new Young Adult ANA facebook page, for which I am a moderator: here is the link: https://www.facebook.com/groups/ANAYoungAdults

I'd be more than happy to connect with you to talk about my experiences! (I've send you a direct message with my contact info)
Diagnosed Dec 2012: AN 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!! Co-leader of the Washington, DC ANA support group since 2016.

GattoMarte

  • New Member
  • *
  • Posts: 34
Re: Newly Diagnosed - Looking for Experiences
« Reply #3 on: December 30, 2020, 10:55:04 am »
Hello Everyone,

My name is Jessica, I'm 32, and I was diagnosed with a 3cm AN on my right side last week after noticing hearing loss in my right ear over the past couple of years. I have been doing some independent research while I wait to meet with doctors to determine a path forward. Based on my AN size and my age it looks like the Translab surgery is probably going to be my best option. My ENT doctor referred me to a doctor at Georgetown University and I met with him last week and he recommends the Translab surgery. I also had a phone consultation with UCSD and they recommended this path as well. I am also looking to meet with doctors at Johns Hopkins (I live in Maryland).

From reading the forum it looks like people have had a good experience with UCSD, but I'm wondering if anyone has experience with Georgetown or Johns Hopkins. I am able to travel to SD, but since Georgetown/Johns Hopkins are in my area I'd like to explore those as well. 

Any information you may have would be greatly appreciated. I'm sad to have joined this club, but from reading the forum it seems like a very caring group of people and for that I'm thankful.

Hello. Here is a Link: https://www.anausa.org/smf/index.php?topic=22943.0 to the thread I started back in July 2016. It tracks my wife's journey with Left Ear AN. Hope you find some useful info there. Good Luck!!!!
December 1, 2015: Partial hearing loss in left ear
July 14, 2016: 5mm x 10mm x 5mm AN per MRI in left ear