CONGRATULATIONS!!! That is fantastic news!!!
HIP HIP HOOOOORAY!!!
I was dx with an AVM in 1995 after it ruptured. I had a 6cm bleed on the R side (posterior lower Corpus Colosum) which had horrible left side effects. I lost my speech, couldn’t sit, walk, feed myself, dress myself, bathroom alone, had double vision, long and short term memory loss, lost feeling and sensation on my entire left side…I was 25 yrs old and never experienced any symptoms prior, no headaches or seizures etc. My stroke occured out of nowhere and was a devastating shock to everyone.
To make a long story short, lol, believe it or not, this is the SHORT version …after second & third opinions, all concurred it was definitely inoperable and embolization wasn’t an option either. Gamma knife or “Stereotactic Laser Radiation Surgery” was new then and only offered at 3 Hospitals…2 out East and 1 at Mayo Clinic-Rochester MN. I was told that if I were to just leave it and do nothing…the chances of a re bleed was pretty high and would most likely be fatal… and THAT was NOT an option for me!!!
I live in Madison Wisconsin… and was sent to our UW (University of Wisconsin) Hospital to the most wonderful extraordinary incredibly awesome Dr. Minesh Mehta, Cheif Radiology Oncologist… it was decided that I should rehab and gsin back as much asvu could before I undergo Treatment. I was fortunate enough to have gotten approx 80%ish of my functions back.
FAST FORWARD I was all set to have the radiation at Mayo and literally at the 11th hour…i rec’d a call that our UW system had acquired … “The Pinnacle 3, Stereotactic Laser Radiation machine”… AMAZING…MIRACULOUS!!! 6 weeks later, I was checking in for outpatient surgery as one of THE first to use this particular machine… 1 headframe or “Halo” screwed into my skull, 1 CT scan w/contrast and 8 hrs of 12+ Specialists measuring cordinance, degrees and determining where to focus the laser…which is 197 separate beams of radiation concentrated to a pinpoint …so it is CRUCIAL CRUCIAL it’s precision spot on!!! This is obviously to avoid obliterating healthy brain tissue. My head was securely fastened to the table and i was strapped across my chest , middle and legs. Even blinking without these measures is enough to throw the beam off…yikes!
I felt ptrtty good in the days,weeks, months following …but did experience hsir loss and fatigue.
**FAST FORWARD 6 Months **
MRI and Arteriogram showed the AVM was 99% obliterated…HOLY COW…THANK YOU LORD, THANK YOU GOD, THANK YOU THANK YOU!!!
NOTHING HAS EVER SOUNDED BETTER TO MY EARS TO THAT POINT!!!
FAST FORWARD 15+ yrs to present day
I’ve noticed, gradually over time, my memory long & short term memory has gotten worse, my concentration and focus is awful, I can hardly multi-task like I used to…i have residual effects of left side weakness, hyper sensitivity, I cannot sit or stand for long periods of time or my left leg starts to tingle, turn purple and turn numb…my left hand fine motor functions are declining to the point that i can no longer di my job…ive been in the dental field for 20yrs…grabbing instruments and thinking quick is so difficult and incredibly frustrating for me. After complaining to my GP and being tested for everything under the sun… I asked if this could possibly be related to my stroke/AVM/radiation…more MRI/MRA’S later, EVERYTHING MAKES COMPLETE SENSE, says my Doc!! The area where the AVM was including the healthy brain tissue in the margins surrounding it are gone…yes, G O N E!!! (GULP) and the grooves in my brain around there have flattened… the main artery and blood vessels that feed the Right Brain Hemisphere are “diminutive” they’ve shrunk and are not supplying my brain with adequate blood and oxygen supply. This was such an “AH HA MOMENT” FOR ME!! After I was told my AVM had been obliterated, I was sort of dropped, no one needed to see me periodically for checks etc…
Because of the location of my AVM and the size of the bleed, the majority of people do/did not survive, muchless 21 yrs, post radiation, so there are not a lot of studies or research for Neurologists to refer to… in otder to tell me if these things are typical post radiation… She said i was sort of “pioneer in this area” … I spent the next few days crying … I have NEVER grieved for my self or my brain…
There is nothing more than can be done for me, medically… the brain damage is permanent. Ive been fired from 4 jobs in the past 7 yrs… " too many mistakes" … “it just isn’t working out for us”… and I have NEVER BEEN fired from a job in my life!
So, I’m on my 3rd appeal for disability in which every and ALL of my Dr’s and Specialists have suggested and wrote testimonials on my behalf…
Ive been blessed with 2 beautiful children, 15 and 11… now we’re a 1 income household struggling day to day…
This is just MY personal experience with everything regarding my specific situation…
God BLESS you in all of your journeys!