Author Topic: AN near brainstem  (Read 1266 times)

Dawn from MN

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AN near brainstem
« on: June 24, 2022, 05:18:09 pm »
I had an appointment with a neurotologist today. He said my AN is close to my brainstem but not touching it. He also said it's distorting my balance. He suggests an mri in 6 months. If growth is seen , he suggests treatment. If no growth, he suggests a repeat mri in a year. He said 50% of these grow and 50% do not. He said I have a 5% chance of this not growing.  I'm not sure why 5%. The Dr  I saw only does surgery and I want the gamma knife option. He has offered to refer me to 2 places that offer gamma knife or to do a 6 month mri and wait to see if it grows. What is your opinion? Do I have time to monitor with mri until growth is noted or do I need to move quickly? My AN is 1.5 x .9 x 1 cm and I'm told the area where it's at .9 is the area that is important in regards to radiation. Is it common to be close to the brainstem?

TrueKnits

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Re: AN near brainstem
« Reply #1 on: June 24, 2022, 05:41:45 pm »
Hi Dawn!
I encourage you to seek a consult from Mayo, as they are quite experienced in treating ANs with Gamma Knife.
They may be able to do a telehealth or virtual visit so you do not have to travel.
I have chosen a different treatment approach but all options were clearly presented to me.
I have found their surgeons to be very open to answering questions and genuinely invested in patient outcome and quality of life.
10.4 mm Right Side AN Diagnosed 5/25/2022
Retrosigmoid Surgery Scheduled for 08/12/2022
Doctors Neff and Van Gompel Mayo Rochester

notaclone13

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Re: AN near brainstem
« Reply #2 on: June 24, 2022, 05:57:32 pm »
Do you still have hearing in your AN ear? If you do, you may want to wait for 6 months and see if there is growth. Age is also an important consideration in choosing your treatment. If you’re fairly young, radiation may not be your best choice.

donjehle

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Re: AN near brainstem
« Reply #3 on: June 25, 2022, 12:07:16 pm »
It certainly doesn’t hurt to get a second (or third) opinion. That’s what I did.
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.

alabamajane

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Re: AN near brainstem
« Reply #4 on: June 25, 2022, 07:19:39 pm »
I would suggest sending a copy of your MRI and any audiologist testing to the House Clinic in Los Angeles for a complementary consult. A doctor will review and call you and discuss their opinion with you. They are one of THE premier clinics for ANs in the country.

I believe Dr Mark Schwartz is at UC Santa Barbara,is it?? Someone else on here probably knows more about him than I do. But he may do consulting also. There are probably others also.

I sent mine 12 years ago to House and had a very informative phone consult with Dr Slattery. Most helpful! I did not end up going out there for treatment and he still called me a year later to check on me.

Good luck. If you do wait and it grows closer to the brainstem,, I don’t believe radiation will be an option due to potential swelling after the radiation. BUT that’s just MY opinion and I’m not a doctor!!
I ended up waiting 3 years after diagnosis and it grew too much and too close for me to have any options. NOT to scare you at all,,, just my thoughts.

Good luck in your journey,,, be your own advocate and press for the answers to the questions  you are searching for,,,

Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

Girldad

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Re: AN near brainstem
« Reply #5 on: June 26, 2022, 03:23:01 pm »
I believe Dr Mark Schwartz is at UC Santa Barbara,is it?? Someone else on here probably knows more about him than I do. But he may do consulting also. There are probably others

Dr. Schwartz is at UC San Diego and is the lead surgeon during surgery, but dr. Friedman does the consulting and is excellent. He will do a free consult too.  The contact info is on UC San Diego’s website.

Very good advice from alabamajane here.
« Last Edit: June 26, 2022, 06:31:55 pm by Girldad »
Diagnosed 10/16/20 19.2mm x 14.7mm x 12.7mm
Last MRI on 4/27/21 19.2mm x 14.7mm x 13.8mm
Translab surgery at UCSD 3/17/22
with Drs. Friedman and Schwartz
BAHA user

TrueKnits

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Re: AN near brainstem
« Reply #6 on: June 26, 2022, 04:54:39 pm »
I'm sorry to hear of your frustrating experience!
This process is difficult for anyone to navigate, and I applaud you for enduring the frustration and moving forward towards the treatment that you know is best for you.
While I am personally choosing surgery, I 100% believe that GK and other options are what may be best for someone else's AN treatment.

Wishing you peace and encouragement!

10.4 mm Right Side AN Diagnosed 5/25/2022
Retrosigmoid Surgery Scheduled for 08/12/2022
Doctors Neff and Van Gompel Mayo Rochester

donjehle

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Re: AN near brainstem
« Reply #7 on: June 26, 2022, 06:12:06 pm »
Where did you go to, Dawn?  I want to make sure that I never recommend where you went to anyone.  Mayo should not treat you like that.  I still think it would be worth your time and effort to do a consult with them.
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.

Dee-dee

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Re: AN near brainstem
« Reply #8 on: September 14, 2022, 12:50:50 pm »
October 10, 2022 will be 11 years since my treatment with gamma knife for a 2.3 cm left side acoustic neuroma pressing on brain stem. During those years I've adjusted to the new normal: tinnitus, one sided deafness, balance issues etc.  Tumor is there but has not grown. Life is good.  Wishing you all well. Dee-dee
2.3 cm AN.   Hearing loss and other symptoms. Gamma knife 2011.

mwatto

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Re: AN near brainstem
« Reply #9 on: September 26, 2022, 02:36:07 am »
Mine was close to brain stem and my oncologist radiologist said it would have been a long and very risky surgery if I had that. I chose CK- am three years on and really other than nerve pain (which I had before) I have no side effects. Hearing good, balance is fine...though I was always clumsy even as a child. Mine shrunk quite a bit at MRI after - it lost the cystic aspects and now stable.
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.

 


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