My name is Svetlana and I live in Montenegro. I have an AVM occipital left, and I treated it with a Gamma knife six months ago. I read a lot of things here, which no one explained to me. Thank you for existing! I am interested in what your life is like after the Gamma knife treatment, what you had to give up, is your life the same or different? What are you allowed to do, what are you not allowed to do?
His Svetlana, great to hear you are 6 months since your treatment. I had gamma knife in November of 2016, and was fortunate to get the news of obliteration after an angiogram in February of 2019. There are a lot of varied outcomes from our community members who have had gamma. I am fortunate, I have a couple minor things, but I think it was my bleed vs gamma that caused them. I am not restricted in anyway at present. I do have a 2 year MRI coming up so hope that doesn’t change! Take Care, John.
Hi Svetlana! For me it’s been progressive. After 1st bleed in 2000, I had to take off a semester in college. After rehab I learned to walk, talk, read and write. Finished undergrad and worked full time. Then went to Alabama and pastored a rural church and went to school as well. Had another bleed (that was my 3rd). Moved up to Virginia and got settled in when my vision largely went in 2017 from another stroke. Now I’m seeing out of one eye, walk with a seeing eye cane and a dog named Sumo.
Can’t drive, can’t ride metal roller coasters (cause of brakes that are magnet and interfere with shunt), and no working around powerful magnets. But I am given more time with the kids, a stable income from social security because of vision loss and brain injury, and hopefully my book will be published entitled “Malformation: when bad things happen to the right kinds of people.” Blessings to you as you continue!
It is now ten months down the line since I had the Gamma Knife at Sheffield.
In terms of what I can and can’t do, well pretty much anything I want.
The advice was to take it easy for the first six months.
After that the only real limitations are not lift anything heavy or do anything to strain myself (raise blood pressure). This still stands. Also I cannot drive at the moment due to the seizures I suffered due to my AVM.
Other than this I can exercise and carry on life as normal.
The worst thing is probably over analysing every little muscle twitch, ache and pain and the self perpetuating anxiety this can generate.
In fact the anxiety is probably the worst thing about the whole experience but you will, probably, have this whether or not you have the treatment.
A rock and a hard place!!!
Good luck and best wishes
I agree with this completely
hi, the GK made no difference to my life at all (2 doses). Only thing it did, was removed almost all of the AVM over 10 years. Total result