I would like to share my good news with all my fellow AVM-er’s ! On 9/27/16 I had my 18-month MRI/MRA for the 4cm AVM in my Cerebellum. My AVM could only be treated with Gamma Knife Radiation, which was done on 4/29/15. On 9/28/16 I was told that the AVM is GONE! I started my AVM journey on 11/13/14 with a brain hemorrhage; followed by a coma; unable to walk; lack of coordination & balance; extreme tiredness, constant headaches; speech problems; hallucinations; an awful smell that would not got away for months. I also had serious short term memory loss just to name a few of my symptoms. I thought I was retarded and I thought I had Cancer because my hair was coming out in clumps. I had tons of physical therapy, occupational therapy and some much needed psycho-therapy. I prayed a lot, I fought hard with myself; I relaxed, I rested, and I prayed some more, but I didn’t give up. My wonderful Husband would not let me give up. Although the AVM does not show up on the film at this time, I will have the MRI/MRA w/contrast dye repeated in June, 2017. I am so happy and Blessed that this wicked disease is gone. I pray that all of you get the same good news soon. I appreciate all the words of encouragement that I have received from this group.
I am finding this new AVM Survivor’s Network site difficult to navigate. I can’t find my “regular’s” anymore, but know that I am thinking of you and praying for all.
Congratulations!!! That is extremely exciting, and I also have to say inspirational. Your story actually has made me rethink potential treatment. My AVM is located in my Pons. Since it’s in that same general area, a very sensitive and dangerous area that my Dr. also said my Only option is Gamma Knife and I’ve been too worried of side effects. I get my six month follow up MRI in two weeks to recheck the stability. After this one I will know if treatment is insisted. - Because of your story I might actually consider it. I teared up reading of your success. Again, congratulations on such great news and I hope your 2017 follow up continues with great news.
That is fantastic news! I’m so happy for you, it has to be an incredible feeling. I have my gamma knife consult tomorrow. I read your story to my wife and kids. Sure helps us all understand better, thank you. Patience and prayer! Thanks again, god bless.
Thank you for sharing your good news! The new site does take some getting used to, but if you remember their user name you can look them up under the “Members” tab. There is a search bar at the top of that page.
Thanks so much for sharing this Sharon. And very many congratulations. I also have an AVM of the Cerebellum but mind is large +6cm and I was advised I would need at least 3 embolisations before having gamma knife. I chose not to proceed as it seemed like a long and arduous process. I don’t get many symptoms at all in my everyday life although my short-term memory is not good and I get tongue-tied at times. The docs also said I only had a 50% chance of the AVM going. When I hear success stories like yours though I wonder if I’m being really stupid.
Your text gives me hope and I am gratefull to that because I will have to do the Gamma Knife in Instambul, Turkey(as the cheapest option), as we don’t have one here in Macedonia. God bless!
I’m so blessed and happy that your AVM is gone. I also got one, and now it’s been a year that I did cyber knife (I think it’s similar to gamma knife). My next follow up will be in August next year (well, the doctor said that we need to allow the process to be effective in 2 years). Your story is so uplifted me. Thanks God for your healing and hope that mine will be fine, too.
My husband’s avm is also located in the pons. At the age of 74, he suffered a hemorrhage in dec 2015 and had radiation late March 2016. To date, we have not noticed any adverse effects. We are anxiously waiting for April 2017 when the follow up MRI will be administered and hope that we too will receive great news that the avm has been ablated. Good luck.
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!
Lulu there is no such thing as “stupid” with an AVM. We all react in different ways. What worked for me, may not work for you, but know that there are available treatments out there. Prayer & Patience will help get you through. Good luck on whatever treatment you choose or don’t choose.
Tracy you have been on an incredible AVM journey! I will keep you in my prayers. Thank you for sharing your story. All of us AVM-ers have a story to tell and we all have a different ending. The things we have in common are the need to fight, prayer and patience. Wishing you the best.
Thank you Sharon! I agree…we’re all on this journey to fight, survive and to help one another thru prayer and advice we share from our own individual experiences that help lessen the fear and anxiety of the unknown…for others.
God Bless you all…keep fighting!!!
Hi I had my first gamma knife back in 2010 I think, but I had a bleed last year 2015, I then had to go back to Sheffield for further gamma knife, today 30,12,16 I received a letter stating that my second dose of radiation has worked but obviously I would need a further scan to make sure, I’m hoping it ends so I can move on with my life
COngrats again! I also have a 4 cm AVM and could only do cyber knife radiation. I hope to have the same outcome! Although mine is in a different location, mine is in the right temporal lobe
