Following the completion of my GK treatment, I posted a summary with regards to my decision and treatment. I have updated it to reflect how I am doing after a year.
sorry for the length of it, hopefully it will help someone.
11/2016 - immediately following treatment:
i was diagnosed in 11/2014 at the age of 37 with a 1.7 cm AN. my symptoms were pretty significant hearing loss and some tinnitus, that had been present for about 3 years. for 3-4 months after my diagnosis, i did tons of research and had many consultations with providers, both in person and via email/phone. I had consultations in person at my institution in milwaukee - MCW, met with Dr. Chang at Stanford, Dr. Brackmann and Dr. Schwartz at House Clinic, and Dr. Link at Mayo Clinic. I had phone/email consultations with Drs from UPMC (Lunsford), NYU (Konziolka), Northwestern, Iowa, UCSF, and UC Irvine. I am so grateful for all the docs that so generously offered their input. I even registered and went to the annual meeting of the north american skull base surgery society and listened to all the lectures regarding AN’s, and met several surgeons and radiation oncologists and discussed my case.
As expected, the opinions were split with respect to surgery and radiation as the most appropriate option for me, with some providers feeling very strongly one way or another. The docs with balanced opinions felt that either option was ok, but more often slightly favored surgery due to my young-ish age. I also had connected with many previous patients, both surgery and radiation patients via this forum and ANA support groups, for which i am also very grateful.
Ultimately, i decided to watch it for a little while, mostly because i had other stuff going on in my life. I had MRI’s every 6 months for 2 years, and the AN was stable. This helped me understand the natural history of my AN. I feel like i definitely could have continued to go on with observation, and just gotten treated once it grew, however the main reason i decided to move forward with treatment are that my insurance was going to change, my out of pocket was paid for the year, and thus i felt that it was a good time from a financial standpoint. I also just had that feeling that i wanted to “get it over with”.
My gut reaction after initially hearing about treatment options was that i wanted to do radiation. I did certainly struggle with this, and went back and forth quite a bit between surgery and radiation as i was gathering information and obtaining consultations. i was afraid about needing surgery after a possible failed radiation and having a higher risk of facial nerve injury. (i still have concerns about this to some degree, but decided to take my chances).
ultimately, the fact that my AN was stable helped me feel more comfortable with treating it with radiation, and that’s what i did.
The next decision was whether to do gamma knife (single dose, with a head frame screwed in) vs. cyberknife (3-5 fractionated doses, without an attached head frame). after talking to many docs that do one or the other, i decided they probably are nearly equivalent, but i think providers believe in what they have at their disposal. the main reason that pushed me to gamma knife was when i contacted a radiation oncologist at UCSF who uses both gamma knife and cyberknife at her institution. she indicated for AN’s they typically use gamma knife due to improved conformality/precision. again, i ultimately felt that either would be fine, but felt more comfortable with gamma knife. i got treated at my institution (MCW) with GK 2 weeks ago, and it went fine.
The treatment day:
showed up at 6 am, after receiving a little bit of IV medication (enough to make me a bit woozy and take the edge off), the head frame was applied. this took about 5 minutes. it was a little painful when the numbing medication was put in, but didnt last long. what i was most concerned about was whether the front 2 screws would leave marks on my forehead. I was pleasantly surprised to see that the front 2 screws were placed just BEHIND my hairline. the screws DID leave a mark on either side of my temple, but they are behind the hairline so are not visible, and they are fading. i don’t know whether this is the standard location for screw placement - but i would discuss this with the surgeon ahead of time. i would have not been happy if the screws were in a visible part of my forehead. and its not exactly screwed in, it's more of a "vice grip" to the skull.
i then got an MRI which took about 20 minutes. followed by several hours of waiting while the plan was made, verified, etc. once it was my turn, the treatment took about 45 minutes. the machine was called ‘perfexion’, and was super quiet, i think i snoozed through much of it. frame was removed following treatment, and this change in pressure caused quite a headache. was given a small dose of pain med (5 mg of roxicodone) in the recovery room, and the headache subsided. went home after that and felt mostly fine. head was a bit fuzzy, and i needed a good nap. for the next few days, the 4 points where the screws were put in were a bit sore, and about 2/3 of my scalp was numb - which i thought was very strange. my radiation oncologist said that the superficial occipital nerve is sometimes injured with headframe placement, and the numbness was not uncommon. he assured me that the scalp numbness would fade in a few weeks, and it is definitely fading.
overall i feel fine, i went to work 2 days after treatment. i am a surgeon and operated all day, no problem. have just been getting relatively minor headaches here and there. i guess the thing with radiation is that I don’t really know if it worked, or if I will have delayed side effects if the tumor swells as a response to radiation, etc. so there is that uncertainty. on the other hand, with these AN’s i think its a gamble no matter what you choose... so you have to just stay positive and hope for the best. I am glad that i observed it for a while first, because if it had grown during that observation time, i think i would have likely opted for surgery. ultimately, i made the choice that made the most sense to me, and i am comfortable with it, and feel well. we’ll see what happens.
3/2018 - 17 months post treatment:
I had my one year follow up in 12/2017, and underwent an MRI and audiogram. The MRI demonstrated that the tumor was stable in size, with central necrosis (dying of the tumor). on the MRI this looked like dark tissue surrounded but a lighter rim of tissue.
My audiogram demonstrated that my hearing was worse. (i didn't need them to do the test for me to know that, but anyways) It was bad at the time of diagnosis, with my work recognition less than 50%, now down to less than 25%. the ENT did not think that a hearing aid would give me any benefit with this kind of hearing loss, and i am not interested in a device. I can hear fine with my other ear, and can still localize sound, and thus it mostly does not impact me professionally or personally. I will say that it is harder for me to decipher what is being said if I am at loud place like a restaurant or a party. I often have to ask people to repeat themselves if they are on my 'bad' side and that is sort of annoying (for both me and the other person).
I am very glad to report that I have not had any immediate or delayed post radiation side effects such as balance issues, headaches, or facial muscle spasms related to tumor edema. I had read and heard of these, and am very glad that my post treatment course has been entirely uneventful.
My next followup will be in december 2018, fingers crossed for continued stability.
if you made it to the end of this long post - thanks for reading!
