Anyone ‘feel’ their gamma knife working?

General
#1

Hi guys,

I had gamma knife single fraction on my large occipital AVM in July 2019 following a bleed and diagnosis in April 2019. My last scan in March 20 as expected showed no change yet in the AVM and large varix but possibly a small reaction around the nidus. Lately I have been feeling like the blood flow in my head may be changing. Some slight pains and more frequent headaches and in particular I seem to tolerate alcohol worse than before. I was having the odd glass of wine but it seems to knock me now and so I’ve stopped. I wondered whether anyone out there whose been through GK and come out of the other side, experienced symptoms they attribute to the changes taking effect? I feel generally well, but more sensitive and have more head pains than before. I can’t help thinking this is radiation related, either changes to the AVM, or perhaps the toll on surrounding brain. My scans showed no adverse radiation effects at 9months post gamma so I’m hoping this is ‘good’ change…or it could be ‘in my head’…:roll_eyes::thinking:

#2

Makes sense to me! I found around the 6 to 8 month mark for me that head aches were much more common, although not sever to require mediation, but likely due to some swelling as the radiation started to do its work. I also experienced ice pick head aches, fairly frequently but slowly became less frequent and haven’t had one in a couple of years or so. My pulsatile tinnitus changed in sound as well, became less. While I still have a little I could tell something was going on. I was hyper sensitive to any changes, pains or feelings for sure, and that has slowly gone away. I still take notice and pay attention but certainly not to the extent I used to. Hopefully your next scan shows progress, patience certainly is a virtue in our gamma knife trek! Take Care, John.

#3

Thanks John, your experiences sound very similar to mine. I can feel fine, then have quite a headache and feel not so great, and then fine again all in the space of a couple of hours! A headache used to be a mild background thing that was there for the day, and very rare for me. These twinges are different but not too alarming as I’m just getting used to them.

Did your gamma knife ultimately obliterate your AVM? I saw that you had a clear MRI but did you get angio confirmation ?

Cheers
Jonny

#4

Gamma knife did obliterate my AVM, I got the word following an Angio in February 2019. I do go for an MRI in January just as a two year follow up. If all clear I will only return if needed. My AVM was small so the estimate was about two years to be gone. John.