Author Topic: Decisions, decisions  (Read 1335 times)

ANviolist

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Decisions, decisions
« on: July 27, 2022, 12:49:35 pm »
Hello all, I'm a newcomer to this forum (and to having an AN)

Some background: I'm almost 60 and I'm a professional violist. I got diagnosed with a 1.1cm AN in Nov. 2020 (the day after the election). I saw an ENT (Wade Chien) and a radiation oncologist (Brandi Page) at Johns Hopkins in Bethesda, MD and they both suggested to just keep an eye on it. In May 2021 it had not grown, but in July 2022 it has grown nearly 3mm so I'm being advised to get it treated.

I've lost like 90% of high frequency hearing so can't really make out speech in that ear, but still hear low frequencies, so still feel I can hear adequately in a music setting. For now.  As I've read and conferred with the two above specialists, the surgical option feels like a no-go. Even at best it only offers a small chance of preserving my already-compromised hearing; and even without the additional risks it seems like a tough recovery. Whereas the radiation seems likely to ruin the remaining hearing, though gradually so I'll hopefully be able to adjust.

I think for now my most important questions are: 1) What would be 2 or 3 good places to contact for second opinions? I'm gathering that clinics run by surgeons are much more likely to recommend surgery so I'd like to find docs who have a global, balanced view of AN treatments and outcomes. 2) In re stereotactic radiation of AN, who are the leading practitioners? (Dr. Page specializes in brain tumors, but I don't know that she has done that many ANs specifically)

Thank you if you've read all this. I promise to get better at prioritizing and writing shorter posts.
« Last Edit: July 27, 2022, 02:01:08 pm by ANviolist »

notaclone13

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Re: Decisions, decisions
« Reply #1 on: July 28, 2022, 05:04:43 pm »
In regard to radiosurgery, experts in GK radiation of ANs are located at the University of Pittsburg (Dade Lunsford)  and University of Virginia (Jason P Sheehan, MD, PhD). Both are excellent and renown for treatment of ANs by GammaKnife. It is well worth the trip to get treatment by these two specialists. In regard to Cyberknife, you want Dr. Chang at Stanford.

drumfest

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Re: Decisions, decisions
« Reply #2 on: July 30, 2022, 02:36:09 pm »
ANviolist,  I too have been diagnosed with a 1.2cm tumor and a professional musician as well. (I empathize and understand the dilemma with hearing preservation----it's a tough decision regarding surgery)  I sent my MRIs and audiogram to Dr Friedman at UCSD and he replied with a free telephone consult. Also, I sent my MRIs and audiogram to Dr Link & Carlson at Mayo.  They do surgery and radiosurgery and are very adept at both!  They told me via a video appt that my tumor had grown from first diagnoses and stated all three modalities of treatment are reasonable.  Both of these sources I believe to be excellent as they're experts dealing with ANs.
Hope you find the answers you need.  Best of luck with your decision!
Diagnosed 4/2022 L sided AN 1.2cm.  stuffiness/clogged sensation w/slight hearing loss but good WRS.  Occupation: Professional musician.  No treatment yet

mwatto

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Re: Decisions, decisions
« Reply #3 on: August 03, 2022, 12:14:52 am »
I had Cybknife for a 2cm AN three years ago and my hearing is still pretty good. I see an audiologist once a year-it really hasnt changed much -I listen to music all day.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.
MRI 2021 stable no change
MRI 2022 stable no change.

ANviolist

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Re: Decisions, decisions
« Reply #4 on: August 05, 2022, 02:27:00 pm »
Thank you for your replies. I had a phone consult today with Drs. Schwartz and Friedman at UCSD. As expected, they said I could go either route. They said if they operated they gave me a 40% chance of maintaining existing hearing and only 1% chance of facial nerve issues. They were also quite alarmist about radiosurgery— they said the only 3 patients they’ve had die got malignancies from radiosurgery.

Whereas I was leaning strongly to radiosurgery, they definitely gave me pause. But I’m still freaked out by all the post-surgery accounts. Michelle, did you have misgivings prior to your CK? If I may ask, what was your age at the time of treatment?

donjehle

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Re: Decisions, decisions
« Reply #5 on: August 05, 2022, 02:53:14 pm »
Hi ANviolist!

While I respect Drs. Schwartz and Friedman, I also understand their bias toward surgery since that is what they do.  If you were to talk to a specialist who just does radiosurgery, you might hear about the dangers of having neurosurgery.  There are advantages and disadvantages to surgery, radiosurgery, and waiting and watching.  The Acoustic Neuroma Association has some wonderful resources telling of the pluses and minuses of each treatment option.  I think it is wise to study each option and then make the decision on what you think would be best for you.

The counsel I appreciate the most is that which comes from a team who offers all three options.  When I consulted with the Mayo Clinic, they had doctors who did neurosurgery as well as those who did radiosurgery consult together with me.  I think that gives a more balanced viewpoint.  But again, it's your brain, and you need to learn what are the best options for you and then choose what you believe will bring you the benefits you want.

Best wishes on your journey, and keep us posted!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

mwatto

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Re: Decisions, decisions
« Reply #6 on: August 06, 2022, 10:54:41 pm »
Hi I was 56 at the time and I had misgivings more re surgery (on my Australian forum a woman had died that week after surgery and also a young woman before that). I was very freaked. I have no regrets at all re Cyberknife- my specialist who is very old said that in all his years of practice more than 20 had never seen a single case of malignancy transformation and the literature also says its very rare. I have had no side effects (some nerve pain as mine is close to nerve 5) but I am treating this with herbs and PEA when I get it and no issues at the moment. The vaccine flared the nerve pain but my annual MRI said all stable. I do take things to keep inflammation in check such as sulforaphane, boswellia, PEA, LDN, bromelain, nervine herbs. I can hear just fine as confirmed by annual audiology checks.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.
MRI 2021 stable no change
MRI 2022 stable no change.

buzneg

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Re: Decisions, decisions
« Reply #7 on: August 12, 2022, 05:39:49 pm »
In regard to radiosurgery, experts in GK radiation of ANs are located at the University of Pittsburg (Dade Lunsford)  and University of Virginia (Jason P Sheehan, MD, PhD). Both are excellent and renown for treatment of ANs by GammaKnife. It is well worth the trip to get treatment by these two specialists. In regard to Cyberknife, you want Dr. Chang at Stanford.

This guy is really good too:
https://www.wakehealth.edu/providers/c/michael-d-chan

(Hey notaclone, good to see you still post help for people... drop me an inbox message sometimes)
March 1, 2018 - Hearing loss left side, acute vertigo
March 2, 2018 - MRI show 13 x 7 mm AN (probably growing)
May 2018 - ENT/audiologist indicate 100% hearing loss on left side is permanent
June 29, 2018 -  GK at Wake Forest in NC
Dec.2018 -  MRI shows zero growth
Jan.2020 MRI shows tumor shrinking