Treatment Options > Radiation / Radiosurgery

Thanks so much, as I'm about to start my journey.

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StopAN1:
I wanted to thank everyone on this forum for sharing their personal radiosurgery stories!  They have been so helpful as I realize I'm not alone. Your stories have both comforted me and scared me, as I was diagnosed with a relatively small AN back in June. I've read countless articles about AN's, brain anatomy, treatments, research papers, and sought multiple respected opinions - including being evaluated by the teams at NYU Langone and NY Columbia Presbyterian. Everyone's situation is different - AN size, growth rate, location, symptoms, age, etc., so the course of action is very personalized. Nearly impossible to find meaningful data that matches your exact situation, so radiosurgery requires a leap of faith. That's why reading your stories was so helpful in seeing the range of possibilities from those who experienced the treatment and the continuing aftermath. The support you've given each other has been emotionally moving. I feel like I know several of you already!

My AN is small, 5mm nearly round, but it's located within 1.5mm of my cochlear. I'm in my early 60's. My hearing in the AN ear has tanked in the past few years, to profound loss above 1K hz with roaring tinnitus. Speech recognition at 60% so my goal is to preserve as much as possible, as if I do nothing, I was advised that there's extremely high likelihood of losing hearing completely, and relatively soon at this rate. Had a scary balance issue that sent me down the path of ENT, neurologist, and MRI, as that was the wake-up call that something was wrong. No balance issues since, and maybe in a good way, my vestibular nerve is shot (one of the docs pretty sure this is the case based on my account of the incident) and I've recalibrated to life without it.

So after a lot of thought, decided to go with Drs Sisti/Wang at Columbia for GK treatment later this month. The potential for using the fractionated approach is what tipped the scales, to hopefully minimize side effects with smaller individual doses, as I'm at risk of further hearing decline from radiation "leakage" due to the AN's proximity to the cochlear, however, with good potential to salvage useful hearing vs doing nothing at all.  What scares me the most is not knowing the dosage/# treatments plan until initial treatment day (could be 1-5 treatments), and lacking conclusive data on effectiveness and side effects.  That's where the leap of faith is, as this is really cutting edge and all of us are data points for future folks that go down this path with their AN treatments, especially the long term effects.

So that's my background as I embark on this journey. I'm scared about the unknown aftermath, especially after reading about issues several of you have gone through (I feel so bad for y'all!), but also glad to know the treatment has a high likelihood of stopping the AN in its tracks, with a potential positive hearing outcome and minimal side effects.

If anyone here has experience with the NYC Columbia GK team or know someone that has, your comments on the experience and tips would be helpful. The upcoming mask approach will be interesting to say the least!  And to all, your comments/feedback appreciated.  Thanks in advance!

gary.s:
Hi StopAN1,

Sounds like you have been doing your homework and getting informed about ANs. I am not sure if I understood what you were saying correctly. Gamma Knife is not fractionated, it is Cyber Knife that is a lower individual dosage with 3-5 sessions. Gamma Knife is usually one session.

I have lost my hearing on the AN side completely now, just some crackling sounds at times. Tinnitus comes and goes, I get dizzy a few times a week, and fatigue at times. I am now 1 1/2 years post Cyber Knife and I have become very accustomed to dealing with the ongoing symptoms. Just have to be strong.

Gary

StopAN1:
Thanks Gary for the response. Sorry for the confusion. I’m set up for treatment at NY-Presbyterian’s Gamma Knife Center, but it will be administered in 1-5 sessions.  I won’t know the number of treatments until the MRI results are in and the dosage plan determined. Sounds like I need to call this Cyber Knife rather than Gamma Knife if the lower multiple dose plan is implemented. Thanks for pointing this out. I missed that with all the research!

Sorry to learn you’ve lost your hearing on the AN side and have dizziness, but also good to see the tumor has been changed to necrosis stage a few months ago.

bfoley:
StopAN1 - Wishing you every success in your treatment plan!  Please keep us updated as to how your treatment goes and what happens with your symptoms.  Sharing is the best part of this board!

StopAN1:
Thanks bfoley. My adventure starts Monday morning, so I'll post updates here.  I'm most anxious about what the high resolution MRI will show with respect to tumor growth and precise position and then the ensuing dosage plan of attack, and of course...the risks/side effects. A lot of thoughts swimming around my mind at this point!  Many of you have gone through this, so good to know this community is here!

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