Thanks! Seems we are in the exact same boat. Good luck with the surgery and stay strong! Did the doctors mention any particular reason why they wanted to do surgery instead of the radiation gamma knife treatment? I guess it all depends on the size of the AVM?
Hi James! My daughter in law (who lives with me) is almost two years out from her AVM bleed and subsequent treatment with Cyber Knife surgery. Welcome home… Take it easy and one day at a time. I went to Staples and got a binder for her, in it we put dividers and started putting in results of tests, insurance papers, business cards from Doctors, etc… That binder travelled with her to every doctor visit, test etc… It’s becomes useful for you. Good luck!
Mina, that was a very smart thing to do. My wife keep a book of every operation, with Doctor name, every result, every medicine they gave me, every time they took my blood pressure and it’s result, cards, nots, just everything. Hopefully not, but you may need to get another binder. She filled up two pretty quickly, and is still adding items 10 years later.
James,
Thanks for your story!
If this is any consolation, after my AVM surgeries, decades ago, my eye sight was so bad, that everyone told me I would never drive again. I was practically all blind! BUT, months by months, year by year, my eye sight got so much better, that 3 ½ years after my surgeries, I got my driver's license, again.
I kept praying and praying, and that worked for me!
Good, good luck.
Lisa A. Stuckel
hi orlando, what did the doctor do to help your vision prism??
hi Caroline, the vision loss is called homonymous hemianopia, my husband lost the right halves in both eyes. do you really believe in novavision? you have proof in your visual field tests that you can see a larger area? please let me know... my husband is miserable with this condition that it has him depressed, worst of all is that he's an optometrist.
Hi Lisa, I would love for you to rub off some of your positive outlook on the vision loss to my husband. I read that you are an optometric assistant and he is an optometrist who has homonymous hemianopia on both right vision fields.... i sent you a friend request so we can discuss further. would love to talk to you.
Hi James,
I also had an AVM affecting my left peripheral vision. My vision was extremely poor after a craniotomy, but did improve. I still have no vision in my upper left field, but the blacked-out area shrunk in the months following surgery.
10 years later, I've finished college, law school, and moved on with my life completely. In the end, this won't be a thing.
-Chad
PS, I saw a nuero-opthamologist for the first time this year, and the guy was a total fuck. I didn't need one when i was actually sick, and I learned there's basically nothing they can do besides assess the situation. You can do that yourself.
I went to an eye specialist and they were confident they could surgically correct my problem but I had enough with surgeries so I opted out. Then, my wife and I went to an eye doctor for her appointment and out of discussion we mentioned my issue and he said he could help me with custom made eye glasses. In layman's terms, the lenses were custom made to correct my vision and they work great. Basically, they built my lenses to be thicker on the bottom of one lense, the left eye, and thicker on the top of the lense for my right eye. It took a couple of tries but in the end it is much better than what I had prior. They help me get through my work day and at the end of the day my eyes are tired but seem to be getting stronger over time. I'm very pleased with the results and I can see much better with my night vision especially driving. FYI and good luck...feel free to ask questions if you have more.
Hello James - your experience sounds similar to mine. My AVM was in my right occipital lobe (both the right occipital/parietal lobe). After my rupture (which I would spend 2-3 weeks believing that it was just a migraine - which is what my former doctor had told me), my left field of vision was slightly gone. My vision has improved between the time of the rupture and 1-2 months post GammaKnife.
To answer your third question, after GammaKnife my vision was slightly better, not blurry, but I did experience double vision and extreme light sensitivity. For about 2-3 weeks after surgery I was to watch TV with dark sunglasses - that's how sensitive my eyes were to light.
After about a month, the double vision was gone, but the peripheral vision in my left eye is gone (due to the AVM Bleed injuring an eye nerve, per my Neuro Ophthalmologist). Nearly six years later, the peripheral vision is still gone, but my NO does believe that there are tiny improvements.
I still have to be very careful at work when looking through and filling out documents, to make sure that I don't leave any information blank because i couldn't see it.
From what I've learned here, AVM's are different, and the outcomes due to treatments are different. Good luck with the GammaKnife procedure.
Hi James
I had a ruptured AVM in the left temple lobe some time ago. I hope the Dr. knows your activity before your surgery. I was heavily sedated 1 week before my surgery. I had 2 massive headaches. I could hardly walk during it. I have some post problems also. My very best wishes to you.
Hi James
Thinking Of You. Bless You You Have Be Through A Lot. Please To Read You Went To A&E And They Found Your AVM And Your Being Treated. Has For Me My AVM Was Also Picked Up At A&E I Had A Terrible Headache After Doing A Work Out I Was Rushed To A&E And Had A CT Scan They Then Told Me I Have A AVM Plus 3 Aneurysms.I Didn't Know What A AVM Was Untill Now Im Due To Have A Craniotomy To Remove My AVM Just Waiting For Date.Take Care James Wishing You Well.
Hi James...welcome to the boards buddy...good to hear you had some success with the AVM...i can tell you i to had vision issues after surgery and they were coming and going but have been much better over time...keep us posted & God bless
James,
Since you have gotten on this site, can your tell me any small or big 'positives' that you see in yourself yet? Please let us know if/when you do, so we can give you 'thumbs ups'.
Focus and search for any/all of the big/small positives in your recovery. My neurosurgeon told me that it would take @12 years to recover from my brain surgries/strokes, but it has been @24 years now, since mine, and even today, I still get little gains here and there.
Prays God for the medical technology that we have now!
Lisa A.Stuckel/Kane
James,
Look at all of this SUPPORT here for you! :-))))))))))
Lisa
Thanks again for all the support and sharing your similar experiences guys.. You are definitely putting my mind at ease!
As for positive changes, I've been living a lot healthier. I haven't had a single cigarette since my experience and I have quit for good. I don't really have the desire to smoke at all now.. so there's a silver lining to this. I've been making an effort to reconnect with a lot of old friends that I haven't spoken to in a while, which has been great. I've also had a lot of time on my hands to work on my music, so that's been a huge plus. You can hear some of my stuff here: http:/soundcloud.com/hemingway. I actually just had my first DJ gig since the surgery last night.. glad to get back out there!
My vision seems to have marginally improved since my first bleed.. I can faintly see my left hand now when I hold out both hands in front of me.. whereas before I couldn't see anything on my left side. Walking down the street is a bit more challenging than it used to be.. I have to turn my head a lot to make sure I'm not bumping into anybody. It also doesn't help that I'm 6'4 and when short people pass by on my left side, I literally cannot see them.. as my lower left peripheral vision is still pretty blind.. that said, I am adjusting.
As for negatives, I'm getting a lot of dull headaches here and there.. and my vision seems really sensitive. I just picked up some sunglasses today so that has been helping. And I'm still not sure how well I'll be able to serve in a busy restaurant where there's people coming at me at all directions.. so that will take some adjusting.
Otherwise, I'm feeling a lot better!
Thanks,
James
I had the same type AVM 55 years ago. I was 8 and the headache was horrible, the vision was partly gone, and there were spots in vision that I had, I also had a loud bruit, which I described as a bug in my ear. I never had a rebelled, and I never got my vision back, most likely because of more crude ways of repairing brains then, and bigger tools, and no pediatric neuros.
beans
Those of us with more recent AVM brain bleeds know how fortunate we are... all the docs & nurses have told us. The advances in neurosurgery are amazing! And those of you who had them in the more distant past can count yourselves lucky to have survived with whatever limitations you have. We can work with (and around) peripheral vision "defects" and still have a rewarding life journey.
Thank you for replying Lisa! You are so right!
Welcome to the site. My bleed was in the cerebellum . They did an Embolization but I I have too many feeders so no way to glue all of them. I was told it was glued I was ok in that spot. They why where the gamma knife came in.
Had that on Sept. 30,2013. Doing ok have headaches but I can deal with them most of the time. I take Gabapentin 300mg. Two pills three times a day. I will say some of these issues came from the hour and 20 minutes of gamma radiation.
They did a scan no brain swelling now just to be wait and see if the AVM is gone and to heal in time.
Prayers to you and keep us posted.
Niyani