Will have surgery for avm in November

[decker]

Hello All,

I have decided to have brain surgery for an accidental find of a 1 cm
AVM found in the MCA / right frontal lobe. Was given choices of doing nothing, doing gamma knife or the surgery. Had several opinions that indicated that each one was as good as an option as the other. I am in
my fifties, don't really have much for symptons, occasional migraine that is kept under pretty good control with relpax.

I see from this forum that both treatments (gamma knife and brain surgery)have been used, I was wondering if there were experiences that you would share with me.

Thank you for your time,
:) donna

[decker]

I am guessing that this is not a very active site for information? I will try responding to some of the older emails. :)

[momof3boys]

Donna,
This site used to be pretty active - unfortunately, it was down for quite a while. I'm not sure why that was, but during that time I think a lot of people got used to not 'being here' so it hasn't been as active since. That is my feeling anyway...I certainly don't have any numbers to give you from before or now, but that's what it seems like to me. Sorry you haven't had responses yet. My AVMs (the known ones anyway) have been pulmonary, and were plugged using amplatzer vascular plugs back in January of 04. So far so good, except for other family members having the same thing! I have had some neuro issues, and the latest brain MRI showed a 'new lesion' in the right cerebellar hemisphere, but nobody seems to think that it's an AVM...although I have my doubts. I can't find a neuro who knows about this stuff. THere is one in town who treats an acquaintance of ours who has HHT, but he's only accepting patients on a consultation basis - and only if they have NEVER EVER had a neurologist before. Mine up and moved to ARizona, but I still can't go to this other guy. Frustrating. ANyway...I"m going to try to get in to this new guy my dad saw. He's not new, actually...just would be new to me! Now I start the process of gathering my records again. Ugh.

Anyway..I hope you are able to find some answers to help you along this process!

Peg:)

[decker]

Hi Peg,

Thank you for responding. Must be hard to be in an area that there are not much for neurosurgeons. I am lucky in that regard to have choices here in St Louis. Can you travel to any?

I have not read anything on pulmonary avms. I know that you do have avms in other areas of body, but do not know how they are dealt with. Yours was plugged? Kind of sounds like they do with some anneurysms in the gluing.

There is a site that you can send you cd in of your brain and get an opinion.
it's www.or-*********. I think. They had a webcast link on the top of the brain talk site here that you could do that with . If the link is not good for you let me know and I will see if I can find a better one.

Let me know how it goes if you would like.

thanks again, donna

[decker]

Hi again!

Thought your name sounded familiar. I see I talked with you on another message line.

The aneurysm site has a good bit of activity and I wish that this would could pick up. Although.. I am pretty much set on track here, it's just the waiting and wondering that gets to you.

[curse69]

I had mine (which was in left lobe) in 94'. Aside minor things like speech & walking I was good to go. Therapy took care of that. Seizures remained, but somewhat minor compaired to the prior ones. I was a bit more difficult due to the faft that I had 2 prior bleeds , anuarysm, cavernous malformation & venous malformation. Sounds like a pot of soup doesn't it.? :o)
The avm was totally removed the way you're going, the anuerysm was clipped & parts of the other two were partly removed due to the damage it may cause. Aside the minor seizures about 6-5 times a year I was fine until last year I had a cluster of seizures which I never had before. In April I had another & last month the uncontrollable seizure left me in a coma for a few days. I will be off to the epi guy I had w/ the surgoun & hopefully will get me on some good drug to stop this mess. I am currently on pheno & 3 other drugs.

I'm sure you know that the gauranteed way to go is the "slice & dice" surgery. I hope you have great success. They have much better tools than they had 10+ years ago.

[decker]

Thank you for the information curse69,

Sounds like you had quite a few issues to deal with all at the same time.
I've not had any seizures and am wondering what they are like in that, do you get any warning or do they come out of nowhere?

So for about 10 years after the surgery you were doing alright it sounds. How long after the surgery until you felt like yourself again?

Hope they find a nice cocktail for you that will keep your the seizures to none at all.
:) donna

[Paul's mother]

Hello Donna,
My son had his Right frontal AVM of more than 3.5 cms removed in June 2006 after an unexpected seizure. He was 27 and did not even have headaches. From seizure to going home less than a month passed. He took it slowly and kept out of the sun for a month and seems to have been fine ever since. His contact with his surgeon is now a social level.

Good luck and hope it goes smoothly for you too.

[decker]

Hi Paul's Mother,

Thank you for your information. A month for 'recovery' sounds pretty good to me and if you haven't noticed any changes that sounds even better.
My AVM isn't so big but has an annie on the ventricle side so will be interesting to see if they do something with that or hope that it goes
down on its' own after the avm is removed.

Guess I will be out of commission for a bit but will post when I can get
back online. Thanks, again! :)

[curse69]

You're fortunate to not have seizures, trust me on that one. Mine always come w/ an aura (warning). I just went to the Epi last week Who saw me when I had the surgery & found out they did remove everything. I bet they really were sweating that chore. :o)

The Epi I just saw said thay don't know why seizures can change, They are waiting for the records on the type of anny is in it & hopefully a MRI will help.

As far as how I felt after the last surgery, like I tell the Dr's my brain has been fried too much so I can't remember that far back. A few photo's show my smily face w/o hair though!

[decker]

Hi Ya!

I am having an amazing recovery. They did the surgery on Thursday and I came home on Sunday. I have family with me, so I am not alone and they do
all the work. I feel absolutely great. I was afraid I would be changed but am not at the least bit that I can tell. I have no pain, no issues. I go to see the doc to get staples out on Friday so am hoping he will say I can start taking advantage of this gorgeous weather and go for some 'walks' and/or visits here in the neighborhood.

Can you think of any questions I need to ask the doc when I go in on Friday?
Right now the meds all seem to be working and going down on some of them slowly like steroid and the percoset. Ice packs relieve most of any discomfort I have and I find I snooze pretty easy. I am propped up in bed or sitting here at the computer playing a game or answering emails.

Thank you for your information. I have not had an aura, only way back on some of my migraines would I have something close to one. :) donna

[benmunoz]

I wish I had found this forum when I first had my AVM. In the meantime, some fellow survivors developed another forum site located at http://www.avmsurvivors.org. You might find some additional information there.

Sincerely,
Ben Munoz
http://www.avmsurvivors.org