7 Year (GK) MRI

[flash]

I haven’t contributed here except for a couple of posts very early on, but I do come back to read from time to time - usually before a follow-up MRI when I’m nervous. My last follow-up was year 3 and then the pandemic hit. 2020 turned into 2021, then 2022. Since my 2019 MRI showed a continued, gradual decrease in size I wasn’t worried about the delay. Both my radiation oncologist and neurotologist felt comfortable saying I was having the expected response. I weighed the risk of COVID with the risk of not having an MRI. Then I kinda forgot about it. The whole thing. Until symptoms very similar to the beginning fired up a couple of weeks ago. I spiraled into an impressive amount of anxiety. I searched this board like it was my JOB. I was looking for anything that would tell me symptoms do not equal regrowth. I searched PubMed just as much. How often do these things go from shrinkage to regrowth? Not often, but the fact it wasn’t never meant it was possible. The wait for the MRI appointment was hell. I tried not to tell my mom or my husband because I didn’t want them to worry, but I couldn’t hold it in. It was almost as bad as that time between diagnosis and treatment.

Alllllll of that to say. My tumor the day of Gamma Knife was 18x13x12. In 2019 it was 13x7x10 and now it is 6x10x9. I got the MRI report by the time I got home, but didn’t celebrate until I heard directly from my doctor. I just knew it was a typo because the traverse dimension was so different. I’ve never seen one where that was the smallest number. But - it’s not a typo. That asshole tumor is squishing up like a little ball.

My hearing has declined a bit more - from moderate to severe in the upper pitches. I may consider a hearing aid soon when we can save up enough. The facial symptoms faded a few days before the MRI and my doctor thinks my TMJ on that side aggravated my nerve. It’ll always be a little easier to rile up, apparently and this just happened to be the first time it happened since early on.

All of this to say - if you’re out there spiraling in anxiety, I completely understand and I pray you have peace and comfort- and shrinking numbers.

[mwatto]

Flash I am really happy for you and it certainly gives me hope! I am also experiencing shrinking (mine has reduced almost by half in 4 years post CK according to my MRI in March this year) also had symptoms - mine post covid and was scared- turns out that was TMJ - so after convincing by dentist, doctor and a neck and jaw physio- am off to try a dental night splint. Been given TMJ exercises too. Keep us posted we need some good news on this forum to create hope! 

[flash]

I’m going to get serious about handling my TMJ because I don’t want to make that trigeminal nerve angry again! I’m wondering now if TMJ is what really set off the first set of symptoms 7 years ago.

[mwatto]

First night (last night ) with dental splint - first time in 5 years no ear pain. Its slightly uncomfortable but dentist told me takes 2 weeks to adjust to it. Also I saw a neck and jaw physio and have specific TMJ exrecises and a face roller to relax that muscle-turns out the AN side muscle extremely stiff and tender. I should have done this years ago...I got a customised splint worth the expense - tried a cheapie one was rubbish.

[donjehle]

Thank you, flash, for sharing your Gamma Knife experience!  I wish others would come back to the forums and share their GK experiences, good or bad.  It helps others make decisions on which treatment option they want.  Unfortunately, if only those who post share a bad experience with any treatment they have had, and if no one shares the good experiences, then it colors others against that particular treatment.   I wish more people after their treatment would come back and help others on the forum by telling the results of their treatment.  Thank you, flash!