AN near brainstem

[Dawn from MN]

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]

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.

[notaclone13]

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]

It certainly doesn’t hurt to get a second (or third) opinion. That’s what I did.

[alabamajane]

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

[Girldad]

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.

[TrueKnits]

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!

[donjehle]

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.

[Dee-dee]

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

[mwatto]

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.