Author Topic: New to ANA and Need Facts  (Read 767 times)

ANSkeeterMcGee

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New to ANA and Need Facts
« on: December 08, 2022, 08:49:40 pm »
Folks, 

I was diagnosed with AN two days before Thanksgiving.  I am a 45 year old married male.  The tumor is  3mm x 7mm.  The doctor advises surgery is not mandatory at this time, but the only way to potentially retain the remaining hearing in my right ear.  The percentages proposed were 60% retention of remaining hearing vs. 40% total loss during surgery itself.  I was led to believe that monitoring may be sufficient to avoid surgery, but would eventually result it total hearing loss over an unknown time.  Do the percentages sound correct?  I presently have mild balance issues as well.  If I go the surgical route now to try to preserve remaining hearing, knowing the chances are only 60%, is the pain and recovery worth it?  What was your post surgical experience?  I am weighing risks vs rewards and not maintaining my normal objectivity very well.  I have had three hernia repairs, sinus surgery, my gall bladder removed, and was carbon monoxide poisoned.  I am trying to compare the experience if feasible. 

drumfest

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Re: New to ANA and Need Facts
« Reply #1 on: December 09, 2022, 01:05:01 pm »
ANSkeeterMcGee,  Sorry to hear you've been diagnosed with an AN.  Please consider checking out the Newly Diagnosed Handbook by the ANA.  You can find it online and download.  It's a very informative read!

I would recommend getting second opinions from surgery & radiosurgery experts.  There are alot of things to consider regarding treatment, but I think you're fortunate in that your tumor is small.  I would also recommend checking out the video library as there are many topics that address treatment and what can reasonably be expected.

I can't offer treatment experience as I'm still in watch and wait.  Although, I have gotten two MRIs six months apart (baseline and followup) and my tumor is stable.  I plan on observing and checking my next MRI in April 2023 to see if it's still stable.  Once I see measurable growth, I'll probably move towards treatment.

I hope this information helps & good luck in your journey.

d
Diagnosed 4/2022 L sided AN 1.2cm.  stuffiness/clogged sensation w/slight hearing loss but good WRS.  Occupation: Professional musician.  No treatment yet

ANSkeeterMcGee

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Re: New to ANA and Need Facts
« Reply #2 on: December 10, 2022, 12:20:26 pm »
Is there anyone out there who went the surgical route from the gate and had the middle fossa approach?  I want the tumor out and out now.  I would like to preserve remaining hearing if feasible.  I am trying to weigh surgical pain, recovery, and side effects against this course of action. Honest answers don't scar me.  Thanks! 

SVFUN

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Re: New to ANA and Need Facts
« Reply #3 on: December 11, 2022, 09:09:27 am »
Hi there - I'm also new to the discussion Forum. I was diagnosed in Feb 2022 with 13X4 MM with only hearing loss side effects. Advised by 2 Docs to wait 6 months. 2nd MRI was in 9/22 with slight increased size to 15 X 5. Two Docs (a surgeon & radiologist)advised again to monitor. I went on my own to have a hearing test to see if potentially a hearing aid would help in the interim. My word recognition has greatly diminished, even though I still hear sound. A typical hearing aid will not help. Something has changed even though the tumor hasn't increased in size. I've decided to move forward with Cyberknife radiation. As one doc said, "why have brain surgery on a small benign tumor." That's what I'm going with. I'd love to hear from anyone who has had Cyberknife treatment. Did you consider Gamma knife? Thank you!

Greece Lover

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Re: New to ANA and Need Facts
« Reply #4 on: December 11, 2022, 09:35:15 am »
Hi there.  Sorry you had to join the club.  I think my situation was quite similar to yours. I was 40 at the time of diagnosis.  My tumor was a bit bigger than yours: 1.2 cm.  I had mid fossa at the university of Iowa in May of 2016.  They saved my hearing.  While the recovery is not easy, it is totally doable with the right mindset and support, and I'm very glad I did it.  In 2021 I had my 5 year follow up MRI which looked good and so I should be in the clear now. 

It's tough because everyone has different options about how to approach these things. Many on here would really advocate for you to watch and wait.  But it's a personal choice.  In my view, having surgery right away assumed some risk up front, but it also gave the best chance at the best possible long-term outcome.  I'm also thankful and lucky that it went well and was successful. I suppose I might feel different had they not been able to save my hearing, or if I had some other complication.

One thing to watch for is to find a place that does a lot of middle fossa.  My understanding is that it is a less-common surgical approach, and os many places do not have as much experience with it.  and som places don't even do it.  so try to find a high-volume center.  Where are you located and where would the surgery be?

Please let me know if I can be of more help, or feel free to give me a personal message on here, too.

Greece Lover.
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.

drumfest

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Re: New to ANA and Need Facts
« Reply #5 on: December 11, 2022, 01:20:26 pm »
Greece Lover,  Thanks for your post and all the details.  As you can see from my signature info, my tumor is the same size but on the left side.  I had a consult with Dr Friedman at UCSD.  He told me he could do middle fossa with a 65% chance of saving my hearing.  He also gave me the option to watch and wait with a rescan at one year to see if it's growing.  It seems like he's done many middle fossa approaches.  I'd like to know who your surgeons were at University of Iowa if you'd like to divulge that information. (no obligation)  Like you said, simply trying to build the database of expert surgeon options that know middle fossa.  I'm over 50yrs old so, that's slightly different from you.

Once again, thanks for your story/info.  Greatly appreciated & Take Care!!!

d
Diagnosed 4/2022 L sided AN 1.2cm.  stuffiness/clogged sensation w/slight hearing loss but good WRS.  Occupation: Professional musician.  No treatment yet