I know I haven’t read everything, but I’m reading about a lot of people who had avms on the side of the head. My avm is in the back of the head and I’m supposed to have an embollization and then surgery. Does anyone have any information on post surgery after having a avm in the back of the head ?
They are here , quite a few of them . Hope thay can help.
Mine was in the base of my skull, back of my head.
Hi Ben,
How was yours removed ??
How did you make out after surgery?
Peace,
Ameenah
my avm was 12.5cms long and went from my frontal lobe all the was to the back of my head…there really isn’t any info on post surgery…it really depends on individual cases
It probably easier if you read about it on my blog here: http://www.avmsurvivors.org/profiles/blog/list?user=mga34vj8dzf9
Okay Ben, I will read it. Thanks.
Hi, Ben
I read your blog and as Alicia said, everyone is different.
You had Gamma Knife, I’m supposed to have embollization and open brain surgery.
I know every one is different, but I’m interested in rehabilitation after surgery. I was wondering how long one may have went to in-patient rehabilitation, if at all. I here that most avm’s are on the side. I was told, if they are in the back, they are a little harder to deal with.
I’m saying all of this to say, I am fully able to make all of my own decisions right now, I’m afraid of going
trough all of this and then being totally out of it for only God knows how long.
you have ever right to be scared…this will probly be the hardest thing you will ever have to deal with in your life…the time spent in rehab and hospital really depends on the outcome of your operation…i was in icu for 39 days and in a drug induce coma for 2 and a half weeks…but i had many complications…i then spent 9 weeks in rehab as i could not move the left side of my body and had slight difficulties in talking…my speech is back to 100% but i still continue with out patient physio and occupational therapies a year later…but this is not to say it will be the same for you…the best person to speak with is your seurgeon he should be able to give you % regarding the risk of your operation…please feel free to drop me a line i would be happy to discuss any other questions you may have…stay strong and positive
Thank you Alicia, i really appreciate your contribution. I’m going to take your advice and talk with my doctor.
You have been through a lot, you are so brave and still have the ability to help others.
Thanks again for your patience with me, like you said in your earlier post, your recover depends on your individual case.
Peace,
Ameenah
Thanks, Jenny, I’m going to look at that site.
I was wondering when you say your short term memory was bad, could you recognize people ??
I go between scared and curious.
Peace,
Ameenah
Ameenah,
My prayers are with you if you don’t mind. Mine was mid brain. I was in surgery for just an hour and “recovered” after 6 months. I have trouble finding words still and it’s been 17 years - but I do communicate fine. I’ve always recognized people but do tend to repeat myself from time to time - the more tired I am the worse it gets.
Thanks Robin that’s good information.
I repeat myself now, so if that happened it won’t be too different.LOL
Peace,
Ameenah
Hi,
My AVM is at the back of my head. Part of it is wrapped around the brain stem. I had a stroke 10 months ago and surgeons thought that embolizations (two) were best as treatment. I felt alright after the first embo. but I had a hard time concentrating for a couple of months after the second one. So the surgeons have decided to not go ahead with a third treatment. In my case, I am cautious. I am dealing with the fallout of the stroke–facial paralsis, balance issues–but i am relatively independent-- and I don’t want to change that. They were able to embolize 50% of the AVM, so I’ll live with that.
It is a difficult decision because it is your brain. I found it helpful to get other opinions, so that you have options.
Good luck, whatever treatment you choose.
Hi Mike,
Your story is very interesting. I’m two months post stroke and I’m having balance issues as well.
I haven’t had anything done yet. I’m not doing nearly as much as I use to. I think you are right about getting another opinion or two. I know I have an AVM because I’ve been having problems all my life, but it wasn’t diagnosed until the stroke. I have many questions and when I see the doctor again I will ask them before I do anything. Right after the stroke I let my husband handle things his way. He took my records on disk to the surgeon at University of Pennsylvania. When I told him to make a copy, he said, "you don’t need to see that stuff."
Yes I do. LOL That’s his way, now that I’m better, I gotta do me.LOL I’m going to get my records and get a few more opinions just like you suggested. If I decide that it has to be surgery, I’m comfortable with Dr. Zagar, the doc with my records, but I need to find out exactly where and how big and how close to my brain stem along with many other questions.
Peace,
Ameenah
Thanks Irene, I’m feeling better these days. I have to talk to my doctor, I have a lot of questions. I’m wondering why he wants to remove the AVM versus gamma knife surgery.
I hope I’ll be talking with him soon.
It’s great to hear you had yours removed so long ago and you didn’t have many issues.
I assume surgery has come along way.
Peace,
Ameenah
Hi,
Where is your AVM located exactly? Mine is in the back of my head and goes into the brainstem. The doctors embolized about 50% of it and then backed off doing anything else because they were worried about the harm of doing any more embos or radiation near my brain stem. Although the brainstem is resilient, it controls many body functions, so the doctors at Mass. Gen’l decided to take a cautios approach. I am relatively independent (can’t drive for now or lift over 20 pounds) so I’m heeding their advice.
If you have any questions just send me a message.
Best of luck.
Hi Mike,
Im not exactly sure where it is, but I know it is in the back, it was a cerebellum stroke from AVM. I believe it is on the left because my right side is weak.
I have talked to the surgeon one time, I have insurance issues, once I get it straight, I’ll talk with
him again and find the exact size and location.
Peace,
Ameenah