Considering fractional stereotactic radiosurgery

[ccwu]

Hi, everyone,
I'm newly diagnosed with AN, and is in the process of making treatment decision.   What a treasure trove of information on this site! 

Basic info: AN on right side, size 1.8 x 1.4 x 1.7 cm,  unfortunately it has already pressed and made an impression on the brain stem.  My right ear hearing is within normal limit,( only slightly worse than the perfect left.)  The symptom of vertigo, nausea and gait difficulty started over 2 months, but has subsided considerably in the past week.  However, tinnitus is still 24x 7 on the affected ear.

I am an otherwise healthy female, just turned 52 (received the diagnosis on my birthday!)  I met with a youngish neurologist/ surgeon two days ago, and he thinks the best procedure for me is the retrosigmoid approach, since translabrinthe approach would take away my "normal" hearing, and the mid-fossa approach is too risky for facial nerve damage (due to height of the AN).  But I have concern about the potential chronic headache associated with the RS approach.

At this stage, I'm leaning towards FSR, hoping that the decreased radiation dose each time will spare the brain stem.  Maybe some of you have experience of FSR and could give provide some positive or negative feedback?  It would be super helpful for me to narrow down my options if you provide the hospital and/or doctor's names.  I live near Boston, but am willing to travel anywhere within US.  Has anyone used Mayo clinic in Jacksonville before?  I have supportive friends live there, and would prefer this site over the Mayo in MN--if both are equally good.

Thanks in advance,
Catherine

[gbly]

ccwu
We are glad you found us.  I have similar size and symptoms, on left, with the exception I did have hearing loss.  However, I was not ready for the translab.  I wanted to go with non-surgery first, so looked at radiation as well.  I met with Dr. Jaboin at OHSU (Portland, OR) and he was very honest that I was a good candidate due to size.  My last MRI showed it into my brain stem as well and a nice indent, so he went with Proton therapy.  I would recommend reading up on that too so you can decide which radiation you want.  I am almost a month post treatment and to date, the symptoms after are basically zero.  I had a slight headache for two days, but after some Excedrin, all gone.

Lots of options and only you can determine what will fit into your life.
Good luck and keep us posted.
gbly

[ccwu]

Thanks.  So glad that you had a very positive experience.   I will keep the update.
Catherine

[mwatto]

Hi basically same dimensions as yours 18 months ago and I had Cyberknife here in Perth Australia. All good so far - shrinking and no side effects (had an earache before and some now and again that's it). Hearing and balance fine. I actually had no symptoms and for two years was told it was "all in my head" and yep it was! So far so good. I had two cystic aspects and these have gone as well...my last MRI was last month.

[ccwu]

Great to hear your good result, Michelle.  I'm still waiting for appointment for radiosurgery consultation.  Very encouraged by yours and gbly's good experiences.
Thanks for sharing,
Catherine

[gbly]

Good luck and keep us posted on how it goes.  The biggest thing is don't second guess yourself.  If you want the radiation, stick with it.  The surgeons are very convincing, they want to do surgery...hahahah.

Mine surgeon really wanted mine since it was fast growing.  Doubled in a year, so lots of excitement from him.  I almost went with it, but I had and glad I did started with radiation.  I can always go up if it didn't work, but Dr. said 95-99% success rate.  I will tell you I think those are great odds.
GB

[ccwu]

Hi, Gbly,  thanks for your kind words.  Right now, I am 99% inclined to choose the radiation route first.  I'm hoping to find a Proton Beam center that will accept me. 

There are plenty of literature on gamma knife, but only a few on Proton Beam.  The most impressive article I could find is published in 2018 by Loma Linda University in CA, with a 95 patients and a median follow-up of over five years, with three regimen of fractional stereotactic PT.  The conclusion of the article is: a total dose of 50.4 Gy in 28 fractions appears to have good tumor control while 64% of patients preserved serviceable haring. 

Obvious, each institution uses its own protocol.  From what I read, you've received 3 fractionated PT and you have minimal side effects so far.  I am curious--what's your total dose and how many days or weeks apart of each treatment, etc, etc. 

For the rest of the communities, does anyone have any experience with Loma Linda University Medical Center?  I don't think it is one of the sponsor of ANA.  Forgive my ignorance, but I live in east coast and haven't heard of this center before. 

Best wishes for all,
Catherine

[gbly]

CCWU
I must say I am ashamed that I don't know the total dose I got.  There is always so much going though your mind, and I asked a million questions EXCEPT that one!  As I was reading the few days after, I realized I have not asked, I will get that information cause need to know that. 

I did 3 doses in one week, Tuesday, Thursday and Friday.  Friday was my longest treatment, but I would say total time the 3 days was approx 3 - 5 minutes per treatment.  I did think it was interesting that they skipped Wednesday, they said they wanted a day in-between. 

It was nice they put on whatever music you wanted and then when it was all over, you ring a beautiful bell.  Very significant feeling, didn't think it would be, but it was. 

I can say that Dr. Jaboin did say that my hearing as it was would stay as is for at least 10 years. I have minimal hearing, but saved what I have.  Someone with good hearing would be very happy. 

I would recommend Dr. Jaboin especially if you are able to travel, they consolidate the treatments to help facilitate.  He was amazing.
Hope that helps and made me realize I didn't ask a very important question.
GB

[mwatto]

I had 18 gy over 3 sessions due to size and location (was touching brainstem but is now well off it.) No issues so far. Be two years in Early Feb 2021.

[ccwu]

Thanks GB and Michelle for your updates.  So encouraging to hear positive experiences!  Best wishes for your hearing preservation!

I wonder if you had any symptoms of dizziness and balance issue before the treatment, and if these conditions improved after the treatment.  (Of course, it is probably too early to ask GB--since your treatment was not long ago.)

Two more weeks to go before my appointment with the radiation oncologist.  Finger crossed, hopefully the new wave of Covid cases would not interfere with the treatment for all of us who are still in the waiting mode.

Best regards,
Catherine

[juliawilson]

One piece of advice: Don’t let anybody pressure you to make a decision. You are doing the absolute right thing to take the time to research and get other opinions. Best of luck and stay in touch.

[gbly]

ccwu,
Hope all is going well.  I did reach out to figure out my dosage and this is what I received.
Total dose of 2100 cGy (centigray) in three separate doses of 700 cGy each.

Hope that helps and thank you for asking, made me reach out and get the answer.
v/r GB

[ccwu]

Thanks, Julia and GB!
Will post my experience when my treatment starts.

Best wishes for everyone,
Catherine

[gbly]

ccwu,
Good luck and sorry I missed answering your question, I did have slight dizziness for a few months before I found out it was fast growing.  I did balance out on dizziness after a few months.  Been doing good but get something every once in a while for a few seconds. 
Hope that helps.  Excited to hear what you find out.
GB

[mwatto]

Hi Catherine- I had no symptoms at all before but I got occasional earache- dismissed by my doctor as probably TMJ. In fact She also said eventually when she referred me to an ENT that I was neurotic and it was "all in my head" - which it was. I still have no symptoms almost two years post treatment- maybe mild hearing loss. Even my ENT wrote on my MRI for TMJ? /Acoustic Neuroma (which is what I suspected and suggested after googling unilateral earache). I still get earache and that side is still a bit uncomfortable to sleep on...there is a wonderful video btw here in the webinars on fractionated.