Author Topic: Post Radiation - Pain 5 months later?  (Read 2732 times)

bfoley

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Post Radiation - Pain 5 months later?
« on: December 16, 2019, 08:54:57 am »
Greetings all!

I had Gamma Knife 5 months ago.  I understand that the tumor (if its going to die) usually swells about 6 months post Gamma.  I woke 2 days ago with the AN side of my face head around my ear area being tender to the touch.  Its not as bad today, but still there.  I am wondering if it is a sign of swelling, or just a weird circumstance? 

Also, I am wondering what type of side effects anyone has experienced around the 6 month mark!

Thanks in advance for any input!
 

kestes

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Re: Post Radiation - Pain 5 months later?
« Reply #1 on: December 27, 2019, 12:10:15 pm »
Hi bfoley, I think we have communicated before.  I had GK 13 months ago for 12-14 mm.  I am still in the swelling stage and it started around 6 months.  For me the only symptoms I have had are increased dizziness and fatigue.  But honestly now at about a year the dizziness episodes are there but much less frequent.  I have about 50% word recognition and more hearing loss but that was expected.  I have had very minor eye twitching and a lip twitch here or there, I would say maybe less than 6 times the whole year, and no headaches at all.  I am very active and hike a lot and make myself do things so hoping that everything I do helps in the long run.  My tumor did swell to about 17mm-19mm and staying stable so far.  Will have next mri in May 2020.  Oh I do have tinnitus and it is louder at times like right now during all the holidays, but it has been pretty stable and ok to manage.  As always, call your doctor if anything seems off!  Best wishes!  Kimberly 
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina

theshawn65

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Re: Post Radiation - Pain 5 months later?
« Reply #2 on: March 13, 2020, 11:28:45 am »
I didn't have Gamma, but 3 session LINAC (over 6 yrs ago) and experienced headaches and ear pain in AN ear about 6 months out that lasted for about 2 weeks. Advil took care of the headaches and the ear pain wasn't constant, more like just going about the day and all of a sudden ouch! what the bleep is that....then it would be gone. They disappeared after that approx. two week mark and haven't been back.
2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013

bfoley

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Re: Post Radiation - Pain 5 months later?
« Reply #3 on: March 16, 2020, 04:18:04 am »
Thank you both - It went away shortly after that so I think it was just coincidence.  Every little thing brings up the wonder if its tumor related.  Oh well, we march on!

BigJoeBass48

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Re: Post Radiation - Pain 5 months later?
« Reply #4 on: March 20, 2020, 12:02:41 am »
I am new but can I make a comment here and PLEASE have someone answer? I live in California. I have a 1.4 AN in the 8th cranial that was first seen as a 0.8 fly speck in January of 2017. I have been getting all these calls from brain surgeons implying, or so it seems to me, that this is EXTREMELY serious and I have to get CK or gamma or whatever in like 2-3 weeks or if I wait a HUGE surgery where I'll lose my hearing to dig out this tiny thing! Excuse me, has ANYONE noticed we are in a worldwide Covid-19 apocalypse? And they want me to drive 4 1/2 hours through the hinterlands when California just got locked down by the Governor today. Then get my BRAIN irradiated for this dinky AN when doctors are supposedly in short supply worldwide and not to be disturbed, then get in my car and drive home 4 1/2 hours! Did I miss something? I feel like I'm in a weird dream where Zombies are trying to eat my brain. LOOK AT ALL THE SIDE EFFECTS THESE 3 PEOPLE SPEAK OF FROM THIS CK OR RADIATION! I am a heart patient, a diverticuli pocket burst in 2014 that made me septic with 23% chance of death, I need a new hip and a new knee for 6 years now. I get this Covid 19 I'm dead anyway. But I'm not going to hasten pain and misery with this CK????

PostCK

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Re: Post Radiation - Pain 5 months later?
« Reply #5 on: May 18, 2020, 10:16:39 am »
I had some pretty intensive facial pain after cyberknife, roughly 6 mo to 2 years. I took neurontin on-and-off, it helped a great deal but brought up some other side effects. The pain eventually went away though I get small pangs of it from time to time, especially at high altitude or while giving blood.