Hi I had my gamma knife procedure on the left occipital lobe in March 2015. I have since been told that my AVM is no more! Brilliant.
But, a few month after the op I developed symptoms similar to sight disturbance similar to onset of migraine which I don’t seem to get anymore.
I was diagnosed with HH. What a nightmare. It is so disabling. Can’t drive, can’t read, frightened to go out anywhere. Don’t recognise people unless they are very close to me.
I know I shouldn’t complain, after all I’m alive! But my life is so hard now.
Yes my AVM was in my right occipital lobe when it ruptured so I have HH on my left side no peripheral vision to my left or down so I can’t drive anymore, it took me awhile but I figured out the reading part… the hardest part is moving with your head not your eyes… and it took me over a year not to walk into every piece of furniture or wall in my house… keep fighting and you’ll find ways to work around it other than the driving part unfortunately.
Thanks Mike. Sounds like you’ve struggled with this problem.
I find myself reading like a child because I have to ‘build’ words.i do have RNIB audio books which are a godsend. I will keep working at things. Just wish I didn’t get so frightened of things.
my biggest problem early on was anxiety in crowds as I couldn’t see what was coming up beside me… still get it a little bit but over time you’ll adjust and find your own rhythm of Life that works for you…just don’t be afraid to push yourself into uncomfortable situations from time to time as it’ll help the anxiety get better…slowly.
My AVM rupture was on the right 11 years ago and I lost all my left peripheral vision too. It was devastating BUT life went on and things got easier. It just became my new normal even though I"m always conscious of it. I don’t tell people anymore. Just pretend I’m daydreaming when I don’t see a big fat person in a bright orange shirt standing on my left!!..
I learnt to scan constantly and always walk looking to the left using my right peripheral to the max… . As I am writing this Beyonce’s To The Left just came on the radio LOL…
I also did Nintendo DS vision training for a couple of years. I found it helped to improve the vision I didn’t lose… but now I’m 45 and wear reading glasses. No one with normal vision will understand what you are experiencing - it sux - but you’re not alone and you do adjust. Hang in there… x
Welcome to our wonderful AVM support group. We are here to support and encourage you on your AVM journey. My AVM is in my Cerebellum, and while that brings a different set of challenges to the table, its still an AVM and my fears and concerns are just as real to me. We are here for you and we welcome you to the group! Best of luck.
my AVM was in my left occipital lobe when it ruptured so I have HH on my right side no peripheral vision to my right so I can’t drive anymore either, but I’ve adjusted well to being chauffeured around by bus or taxis Etc …One of the hardest parts is moving with your head not your eyes… i still walk into furniture in my house, 8 years on:roll_eyes: but hey ho … my philosophy is that I’m so grateful and thankful to God that I’m still Alive!, I’m pleased to know that God hasn’t finished with me yet!. I did have to take early retirement from my job, so have lots of unexpected lovely time on my hands. So I keep fighting and taking each day at a time and looking forward to what each new day may bring. Xx
Hello friends! I’m new here (21M) and I never thought there were other people out there that deal with the same symptoms as me. I feel so much relief knowing that I am not alone anymore. I had a large avm in my right occipital lobe and after it ruptured i developed HH in my left side. Blood dripped down fro the rupture into my right eye and there was a procedure to remove that. 6 months after my craniotomy they performed a cranioplasty only to discover a new avm on the other side of my brain. I have been cleared to drive again after going through a return to driving program. I am curious if any of you suffer from bad mental health problems following your avms.
In the 1980’s & in my 20’s, I found out I had a HUGE AVM. I lived w/it for almost 10 years after because I thought, I have my whole LIFE to live, & this problem could wait. Year by year, though, I got more & more gram mal seizures, so at 29 years old, I was READY to get this problem FIXED. I KNEW how risky surgery would be for my AVM, but I WAS READY! All together, I suffered 2 strokes during 7 brain surgeries. YES, it was hard work for a long time to heal, but I NEVER gave up, & fought, fought & fought! I had to start over at EVERYTHING: Career, Relationships, Friends, Driving Independent etc. After at least 5 years, I FINALLY saw I had a FAB 2ND LIFE, & I am here to HELP OTHERS! I did volunteer services at a hospital & a rehab center for @ 20 years after my surgeries, & now, I work for a Walgreen close to home! I always say look to see all the small or large POSITIVES in any situations that any of you are going thru!!! Do your best to feel HAPPY no matter what you are going thru! I do my best to always stay POSITIVES!!
GOD BLESS YOU ALL!!!
Elizabeth (Lisa) A. Stuckel
… my philosophy is that I’m so grateful and thankful to God that I’m still Alive!
, I’m pleased to know that God hasn’t finished with me yet!
. I did have to take early retirement from my job, so have lots of unexpected lovely time on my hands. So I keep fighting and taking each day at a time and looking forward to what each new day may bring. Xx