Gamma Knife at Univ. of Penn - Philadelphia

[rmc]

my condition : 50 yr old male - small AN confirmed to be growing as per 2nd MRI.  high frequency loss of hearing in my left ear.  constant tinnitus.   headaches... but the headaches maybe related to stress / lack of sleep more than the AN.    I decided to do GK in an attempt to preserve my hearing long term.   Dr. Lee and Dr. Bigelow will be at the GK helm next Friday. 

My plan is to rest over that weekend and return to work on Monday where I work on the phone all day.    I will report in with updates.   

I don't think there is a lot of data on Philadelphia GK and I am very confident in the team that will do my procedure.    I hope to have some good reporting and results to start building some data on Univ. of Penn GK treatment

[rmc]

Had GK this afternoon.  First hour after procedure i had no side effects.  Ate hospital food and got on the road home.  About 15 minutes into the drive got a monster headache.  That lasted 4  hours. Went away for about an hour but has now returned along with a very strange symptom in my affected ear.   I now hear a "metalic" echo.  Almost as if that ear is processing audio a nano second later than my good ear.    It makes me nauseous to talk.. let alone look at a co.puter screen.    Logging off.  Got a scirpt for prednisone.  Hoping that helps over night.  Not very happy right now

[ANSydney]

That does not sound normal. I would contact the radiosurgeon straight away.

[rmc]

Slept 12 hours.  Prednisone seems to have helped.  I was having headaches before the procedure and the GK really aggitated that symptom.  Not hearing the echo this AM and felt pretty good.  1 hour into being awake and headache is creeping back like the creature from black lagoon.. inching fwd.     I am going to rest all day and see where this leads. 

I will call neuro surgery if any anything odd occurs today like tbe echo effect, as per ANSydney

[LakeErie]

rmc, my GK procedure ended with the suggestion I take an IV dose of morphine before removing the IV as removing the frame often led to a painful headache.
Did you have any analgesic before frame removal, I guess I am assuming you had a frame, the Icon GK is now frameless.

Headache can be somewhat normal for a week following GK. Mine persisted for months over night, responding well to Ibuprofen taken at bed time
However, it turned out that the headache in my case was a symptom of central tumor necrosis that led to swelling of both the tumor and the brain adjacent to the tumor which in turn compressed both my trigeminal and facial nerves that resulted in facial weakness requiring steroids. The necrosis is rare, 1%. The weakness improved over three months but I now have some synkinesis.
Be sure to inform you GK team of persistent headache.

[Echo]

Hello RMC,

It is not uncommon to have a severe headache immediately following Gamma Knife.  Prior to having my GK, I had met people at a support group who had varying experiences.  One woman told me she had the worst headache of her life as soon as the head frame was removed, yet another man walked out of the clinic and met a friend for lunch.  We all react differently. 

I fell into the group that had the major headache.  In my case they froze the area the head frame would be attached to, I was given something to relax me but kept awake. The frame was put on at 6 a.m., but I did not receive my GK treatment until 2 p.m.  (there were two other's ahead of me).   My headache hit as they removed the 3rd pin, just prior to the head frame being completely removed.  I was in immediate severe pain and nausea.  The nurses were amazing, they rushed me back to the recovery area, immediately gave me an injection of pain killer and anti nausea, gave me a few ice packs and would not let me leave the GK clinic until I was pain free.  Basically the pain subsided rapidly once I had the meds injected, but they let me sleep for about an hour.  That was pretty much all it took. The pain left and did not come back.   I did wake up the next day with very swollen eyes that were black and blue which can also be a rare reaction.  More ice and about two more days and all was good.  I never did need the prednisone, but I do know of several people who have used it with great success.

The prednisone should be a huge help, but definitely keep in touch with your GK team if you don't improve. 

Cathie

[rmc]

Good news..  GK was two days ago and today, Sunday, I awoke with no headache - or let's say a tropical storm vs. category 5 from last few days.   I am not so sure it was the headframe as the frame itself and the pin points didn't really bother me.   I felt the headache from within and somewhat localized to where the tumor is.   I could explain it in more detail... but... I am just so happy it's gone !    The super strange tunnel effect - echo hearing has not yet appeared yet today either.   

I think it's important to document the bad with the good so others know these procedures are not all floating rose petals on a gentle breeze.    However - day 2 after GK and I am feeling sooo much better than the immediate post-op.    As for the original symptoms I had going into GK - the tinnitus and high frequency hearing loss.   It's far too early to determine anything, but they both appear to be at the same levels.   And I will take that result in a heartbeat.   My goal was to preserve hearing and possibly stop the tinnitus from getting worse.    It is a long road to see if my choice for GK preserves my current condition.  Hoping for the best and feeling pretty good today.

[ANSydney]

Good to hear things are better rmc. Hope things continue getting better.

[Echo]

When I had my GK treatment I had usable hearing in my AN ear, but it wasn't perfect.  My word recognition had dropped from 70% when diagnosed to 40% in less than one year.   After my GK treatment in Sept. 2013 my hearing has continued to be usable, however my word recognition has fluctuated from 40% to 20% to 40% to 10% and back up to 20% and finally this past August I'm at 0% word recognition.  I can still hear sound ie: cars, barking dogs, sirens etc., but if I'm not wearing my hearing aid (Phonak Bi-Cros), I have trouble determining where the sound is coming from.  Not sure how long I will have limited usable hearing, but I'm grateful four years out to still have it.

Best of luck!
Cathie

[rmc]

Thank you all for sharing advice and experience in this thread.   I returned to work on the 5th day after GK, felt great for days 6 thru 11, but now I am taking a day off again on day #13.   I had a return of headaches yesterday and in the evening my balance was a bit off.   Same this AM, so I chose to stay home, start a 2nd round of prednisone, and rest.

I caught my AN very early : 1.3 cm and had GK at 1.8 cm.   I have only lost high frequency in left ear and I am at 97% word recognition still.   My main symptoms that prompted me to act are tinnitus, hypercaucus and headaches.  It's a bit unnerving to suddenly have a balance issue, but it's more like light headedness.  I am staying strong mentally on my choice to do GK and I intuitively feel as though this will all blow over.