My unexpected new world, right occipital intercerebral avm

hello, as stated above how unexpectedly my world changed two weeks ago tomorrow. what started as a day of turkey hunting with my wife ended up with me in a helicopter heading to ICU. shock is an understatement...after the initial tests it was revealed that i had a avm rupture in the right occipital inter cerebral area, that's about all i know. i spent 10 days in hos and rehab and after reading some of the stories in here i am very blessed..i have some left vision field loss which had gotten better somewhat..also some gait instability and the on again off again headaches..along with light sensitivity but other than those things can get around fine...i think i can drive but dr says no yet and i wont push it...i feel that with 20 % gain in left eye i will be ok to drive...i got home from hospital sat and am now in the waiting stage.. tentatively set for july 3 for first scan to see how much the walnut size clot has absorbed so i can get a treatment option..i am totally lost in this waiting game... i cant do much cuz its still there and if it bleeds again could be worse.. i feel like i can do most things that i did before. ive been a cop for 21 years and want to go back. the unexpectedness of this and the future are very daunting right now all though i have a strong faith i believe God will see me through still human.. reading some of the stories in here has been helpful but rally look forward to hearing similar experiences and outcomes. i have alot of down time the next couple months and look forward to chatting and talking with anyone..
thank you

Hi Greg, Welcome to this community :) , I hope you find the support and positive stories to help you on your AVM journey. I'm glad to hear that your on the right track with regards to your eyesight, Plenty of rest is key and never over do it :) . Its funny but your body is very good and telling you when its tired :) , Sore eyes or headaches or getting a little mixed up. I hope you have a full recovery from your bleed and also successful treatment of your AVM with no side affects !. Take care and take it easy :)

thank you martin


Thanks for sharing your story. There are many members here that are going through very similar struggles. I know the waiting game can be excruciating! You sound very upbeat and willing to learn about your condition. Hopefully when you go into your followup after the July scan you will have a pretty good understanding of the different treatment options and be able to have a very informative discussion with your surgeons. Another thing to consider is...when you have your scan in July ask for a copy of the scan via CD just have have in case you decide that you want to get a second opinion. It is fun to pull up at home and show your friends anyway!!! haaaa

Glad you lean on God! Our son had a bleed with damage to his sight and left side of his body. His sight is back to normal now and he can drive! Waiting to find out if you will have surgery or radiation treatment is hard, but you want them to take the time to decide on the correct one for you. I am thankful that you have minimal side effects!

Hi Gregg....there has been a lot of courage displayed in your writing and i was wondering how n just noticed that one sentence "you have been a cop for 21 yrs" so its obvious you are a strong man.

Please have faith and trust that though it will be a long healing process you will have to be used to blind faith.....God knows what he is doing....with regards to the need to feel n share pain n emotions i am sure just the presence of so many people on this website would have made u feel "so relieved". Keep on venting n venting as much as you can without hesitation. That itself will help a lot.

please stay strong n my prayers n good wishes are with you.

Bangalore, India.

thank you Santhosh i am doing my best


Hang in there! The waiting game is frustrating, I know:

My AVM was also unknown until it bled. It was very large ... I was in the hospital for close to a month after my (large) bleed. Once home, I was on blood pressure & anti-seizure meds. My activity was restricted and I was bored out of my mind! I did a lot of "light" housework, walked around the block, did some "Find-A-Word" puzzles but was not able to entertain myself with reading or using the computer as my brain hadn't recovered enough yet.

Long story short: my AVM was successfully removed, I eventually returned to work (as an Optometric Assistant), started driving again. After about 4 months, I really felt much better overall... my endurance (physically & mentally) was about back to normal. Now, only the people who are closest to me (family & close friends) can see any signs of my "brain damage".

God has watched over me ... He's been there every step of my journey. He's there with you as well.

Thank you so much for your reply Lisa,, it is encouraging to hear about the positives and not so many negatives im optimistic,, cant say it is not scary but i will not be alone,, thank you

Hey Gregg,
I am new here but wanted to say hey and wish you the very best. I was a nurse for 21 years in acute care prior to a really bad car crash last October. I kept thinking ok now I'm ready to go back, then I had a heart attack and then my dad died and now this. I hope you continue to improve day after day and NO MORE BLEEDING! Nurses orders!


My husband told me afterwards that many of the hospital staff considered my survival a miracle. Many folks have said to me, "You must have been so scared" but, truthfully, I was never afraid. I had complete trust in the doctors and figured the odds for a good outcome were on my side. Keep us informed as to "the plan", OK?

hey lisa, i guess i shouldnt fear either, i guess i didnt feel any fear while this was going on, i felt more fear when i started reading in here some of the other folks that have had this and had bad outcomes from the treatment, i have a excellent surgeon i feel based on all the talk from the nurses that were in the hospitol. i think its just the waiting and waiting that is getting to me.. i almost just stopped coming here but now hearing some good stories is helping....And my continued prayers im sure that will pull me through, july 10 cant come soon enough

hey singing, thanks for your reply and im sorry for what has happened to you, I have found alot of solace in my faith through this even though i have my days when the human side comes thorough. as to returning to work i am optimistic as im not overly problematic from my bleed,,i have a little vision issue in my left eye but other than that i feel good. im more concerned about the treatment and the outcomes and just the waiting so long to see if and what they can do. luckily for me i could retire now as i just turned 50 ( in the hospital) but would need more income to get by so i want to get back. i am trying to follow your advise and I will pray for you. The Bible says we can seek the Lord and He will be there.. Go for it!!!take care

Hi Gregg,
I totally understand what you're going through with the waiting game. I have had to accept that this is a journey. There don't ever seem to be any clear answers. One appointment leads to waiting for another which leads to yet another. I have found that the three options I had were embolization, surgery or radiation, in that order. Embolization is tricky and depends on the blood vessels leading to the AVM. They told me they had to have about an inch of vessel leading to the AVM to be able to do it. Otherwise the "glue" could overflow into a good vessel and clot and cause a stoke. Mine didn't have enough room, so when I woke up, they told me they couldn't do it. So, more waiting for the next option. Then the next option was surgery, and the surgeon explained that the ability to remove the AVM surgically depends on location. They have to be able to get to it without causing further neurological damage during surgery. Mine was too deep in my brain, so it was too risky. The third, and last, option I was given was radiation treatments. I was told that radiation can only be done on small AVMs that are less than 3cm. Thankfully mine was small, so I finished the treatments a few weeks ago. But, finding all this out and finally having the radiation treatments took 3 1/2 half months total of waiting between appointments and procedures. It's a roller coaster journey, so hang on and wait for the next up and then pray through the downs. I pray that your symptoms improve, and you are able to completely heal!

thanks for the message mom, i guess im always hearing and thinking different stuff concerning mine, they really didnt tell me anything other than it was small and was in the occipital region. one doc told me it was easy spot to get to than the surgeon told us it was deep and a pa said he didnt know how anyone could give a description yet cuz of the blood clot..very unsettling but i have confidence in the surgeon as they say hes one of the top in the midwest for avm.. still getting a little nervous as the 10th approaches.. hoping the least invasive will work and allow me to get back to life...did they say that you avm was still able to bleed after the gamma knife? that could possible force me into retirement if i have to wait two years

They told me that the risk of bleeding was increased for a short time after radiation and that it would then go back to the 2-3% risk per year until the AVM is closed off. They told me that it could take up to 2 years, but I've read it can take up to 3 years, to scar down and close completely. I've also read that you can have side effects of the radiation for up to a year. It is hard to hear so many different things from so many people when all you want is a simple answer. So far there have been no simple answers. Just get up every day and keep putting one foot in front of the other, try to stay positive, and hopefully your journey will be uneventful and will resolve soon. Please feel free to contact me if you have any other questions or need to vent. I'm still on the "journey".


Here is a link that is a good read that may answer some questions. The AVM Survivors site is of course very helpful as well.