Facial Nerve Schwannoma / Gamma Knife

[will_homer]

Hi everyone! My name is Will and I've been a quiet observer on this forum for almost 2 years now, since I was first diagnosed with a left-side Facial Nerve Schwannoma in December 2016.

Some background: I am 24 years old, and my tumor is now 2.3cm x 2cm (13mm when first diagnosed). I'd been experiencing left-side facial weakness for years before seeing a doctor about it, and that's been my primary symptom overall, with big eye closure issues. I had a middle fossa craniotomy with Dr. Friedman and Dr. Giannotta at USC in April 2017. They called it a "decompression" surgery - no resection of the tumor, which Friedman said would almost certainly result in total facial paralysis on the left side (which I'm really trying to avoid). After another year, my 6-month MRIs showed that the tumor was continuing steady growth, and I was recommended for Gamma Knife. Despite my age and the possible long-term side effects, my doctors thought GK was my best chance at putting this thing behind me. So I went ahead and just recently had the procedure at USC last Thursday 9/20.

So, now I'm posting here mostly because I'm curious if anyone has any advice on what do post-radiation. I know it's mostly up to chance now, but I thought some of you might have tips and tricks regarding diet, lifestyle changes, things to stay away from, etc? I'm feeling a little scared/nervous that maybe I rushed into it too quickly. One weird side-effect I'm already noticing after only a few days, is that sometimes I hear sounds/voices in a robotic way, almost like when someone talks through a fan. From a little research, I think it's called diplacusis. Has anyone else experienced this post-GK? Up until now my hearing has been almost perfect. I know that hearing loss is a common side-effect from radiation, but I was told it would come long-term, over 5-10 years. Is this the start of hearing loss?

Also, any tips on improving facial function, or keeping it stable post-radiation? I'm at about an HB-3, and have stayed around there since I was first diagnosed, not much change for better or worse. I was seeing a physical therapist for a while, and she taught me some great exercises and massage techniques (which I do think have helped). Should I continue these exercises now that I've had GK? Should I start seeing the therapist again? I'm very afraid that my facial function will stat to decline again from the radiation or swelling, but not sure if there's anything I can do to prevent it.

Anyway, that's pretty much everything that's on my mind. Sorry for the long post. It's been so helpful reading everyone's stories throughout this strange process, so I figured I'd throw mine out there.

[Blw]

I think keep seeing the therapist. I believe the facial nerve therapists are vestibular therapists or something like that. Mine was on the facial nerve as well and no one recommended surgery. You were probably stuck because of age. Although decades-long data on GK is sparse, keep in mind that if you do not experience regrowth for decades, in that time there will be new treatment. They may even be able to do it with immunotherapy as they are doing with increasing frequency with cancer (any drug that ends in MAB). I think side effects can last 2 years or more and they can come in all types. I really see issues if there is a big storm coming in, or when allergies are very bad. If you are lucky, you may see some shrinkage, and perhaps that may lessen symptoms.

[gary.s]

Hi Will,

I had Cyber Knife radiation in April, very similar to Gamma Knife. The only real difference is that Gamma Knife is one session and Cyber Knife is 3-5 sessions with each session on a different day. I had five sessions from April 16-20, 2018. Radiation initially exhausted me, so I rested whenever I felt tired. After five months, I am still feeling tired at times and rest when necessary. I try to eat well balanced meals and drink very minimal amounts of alcoholic beverages. I ride horses so I get lots of exercise which keeps my mind off of the tumor. My tumor is swelling at this point due to the radiation. My symptoms associated with acoustic neuromas have increased, but only minimally. I have facial numbness on the AN side, no taste on part of my tongue, my eye waters a lot, balance issues, and of course my ear feels blocked all the time. I find that when I am tired at night, by symptoms increase. Hopefully as the tumor begins to shrink, some of these issues will reduce or completely go away. I am not sure if any of this is helpful to you, but thought I would share my story. Stay strong Will.

Gary