Side effects soon after LINAC-based SRS

[anflorida]

I am now officially two days post-SRS. I am experiencing some post-treatment side effects I was not expecting and am hoping that someone can let me know whether I have cause to be concerned.   

First, a little background. After consulting with numerous doctors and getting varied opinions, I decided to treat my 2.6cm AN via radiosurgery with Dr. Foote at UF Health Shands in Gainesville, FL.  I really liked Dr. Foote during my consultation and felt confident due to his obvious expertise in this area, the stellar team he works with (including Dr. Bova, the physicist who co-invented this technology and who would be running the machine), his track record of treating ANs larger than mine, and the confidence he expressed in making his recommendation for SRS.

The radiosurgery occurred two days ago on 3/14/18. I had my head frame placed at 6:30am but had to wait several hours before it was my turn on the LINAC machine.  The procedure occurred around 1:30pm and lasted ~an hour and 20 minutes.  There were no issues during the procedure, but as soon as it ended and they took the headframe off, a headache began to set in.  It started subtle but by 4:00pm it was excruciating. I laid in bed the rest of the day/night unable to eat or move at all.  The on-call doctor assured me that this was due to wearing the headframe for so long and the depressurization in my head from the lidocaine wearing off. He told me to take a double dose of fiorinal and wait for the pain to subside.  I finally passed out around 10:00pm and had a restless night's sleep.

The headaches were much less severe the next morning. With my focus off the headaches, I started to notice a whole new set of side effects--the tinnitus I had occasionally experienced pre-treatment was now much more pronounced (almost roaring at times) and more frequent. My right-sided hearing (which already was pretty bad) seemed worse, and my balance was more off than normal.  I also felt fatigued and like I was in a "fog."  These symptoms remain ongoing.  Thankfully I have not noticed any facial weakness or numbness.

I plan on calling Dr. Foote on Monday to report my symptoms, but I was hoping the ANA community could shed some light on whether my results are abnormal. I thought things like hearing loss, tinnitus, balance issues, etc. would occur gradually over time instead of immediately after treatment. Also I have not heard of anyone else having such severe headaches/pain following the headframe removal.  Should I be worried?

[anflorida]

As an update, I am now 2.5 weeks post SRS. The good news is that my headaches appear to be gone and I still have full function of my face (knock on wood). The bad news is that I have basically no useful hearing on my right side and am dealing with constant, loud tinnitus.

I was not expecting the sudden hearing loss and increased tinnitus to occur so soon after radiosurgery. I called Dr. Foote’s office and spoke to his ANP about this the day after I posted my message above. She assured me that everything was normal but did not provide any additional info. I would really appreciate any advice or reassurance the ANA community can provide here. I am struggling with this.

[Blw]

Most times the frame is put on without incident and you might not even remember it. In my case, the pain was excruciating and it was hours before I was treated. They think that a pin hole could have been close to a blood vessel, which can move the anesthetic out very fast. In fact, I had some bleeding when they took it off, but the relief was immense. I had some pain around the sites for months, so it is not unusual to have an issue. After treatment the tumor can swell because the cells have been fried and they lose function, Part of that may not be able to regulate fluid intake, so the tumor can swell and push on the other nerves and effect multiple things such as balance, etc. It will pass, but the whole process can take a year or two.

[LakeErie]

My gamma knife was at the Cleveland Clinic in 2016 and it is routine there the receive an IV dose of morphine before the frame is removed as headaches are common from the release of the pressure.
My balance and hearing nerves were severed in microsurgery in 2011 so I had no issues with either balance or hearing post GK.
The GK did cause central tumor necrosis, a 1% risk, which led to swelling of both the tumor and the brain adjacent to the tumor which in turn impinged on the facial nerve causing grade III facial paralysis at 3 months. After a month on steroids in Feb 2017, I am back to grade II now at 14 months from onset of the facial weakness.