Surgery for now paralyzed. What should I do?

Hi all, after waiting for 5 months yesterday went back to talk to my doctor. I pointed out what he thinks is best to do nothing for now since I have never had any symptoms and operation could cause me some motor deficit left side of my body.
Remember that my right front avm is 4 x 3 x 2.5 cm.
I left a little misplaced as I thought that would work as I had planned in July 2013 and ultimately had to be suspended.
Now I will have to live with this time bomb in my head.
I went to another neurosurgeon and he told me that the decision should be mine alone, and that if I had not operated because nothing ever happen in my life...

Vics, you may wish to post this on the European group to see if those members can recommend expert doctors so you can get further opinions: http://www.avmsurvivors.org/group/europeavmsurvivors

That’s a hard decision. Ask my daughter and she would say she would have left it alone. She is now primarily wheelchair bound due to a major stroke she had during surgery to remove AVM . The hosp stay was supposed to be 3 days and turned into 6 months. She is a true miracle and many times the the doctors didn’t think she would make it. But thank God she is getting better. This happened in 2012. She is currently doing physical therapy to have better use of her left side and learn how to walk again. She is now 24. Ask others and their outcome was great. So it’s good to know both sides but ultimately it’s your decision. I wish you the best of luck.

As you say it is a very difficult decision.
If I operate, without ever having anything, I run the risk of not being 100% or even have consequences for the rest of my life.
If I do not operate run the risk of a stroke that can even kill me.
And the doctors tell me that I should take the decision and I think that they better not do anything for now.

I was diagnosed with an AVM on the left parietal lobe similar in size to yours. My neurologist and neurosurgeon recommended conservative management. I have developed epilepsy since but am quite satisfied with routine check ups rather than the risks surgery may bring on.

It is hard Vic’s. My daughter didn’t want to leave the AVM alone for fear of havin a stroke also but ultimately she ended up having a major stroke anyway trying to get rid of the AVM. So it’s hard. Just pray about it and do research and talk with your family and friends.

That decision is yours alone.

I waited for years for a whole team of GREAT doctors to come up with a solution for stopping blood flow through my AVM.

I just recently left that team for several reasons I won’t get into but number one being that they were lacsidasical in treating me.

I’m scared out of my wits every day that I could be driving and bleed again and possibly hurt or kill someone else. Or not wake up at all. That I could be home alone with my 14 year old with Asperger’s and I could scare him bad enough that he wouldn’t remember how to help me.

I take enough medicine, that could cause liver damage, to ease the pain and prevent seizures that I hide to take them in other people’s houses … as I look like a pill popper. :frowning:

I was just lucky (I guess) that once there was enough blood in my head the first time I had to be hospitalized (2004) that I was at home with my parents when I fell into a coma. Had I been alone I wouldn’t be here for my, then, 4 year old son.

Severe migraines my entire life, probably from micro bleeds, and it took a coma for a doctor to look close enough to find a rather large AVM between the two halves of my brain??

I’ve learned to walk again, some days you wouldn’t even know I have left hemiparesis, but have a thalamic pain disorder through my left side from the bain damage.

Its like bacon grease being splattered on my entire left side at once.

I have short term memory issues and have to interrupt people to say things so I won’t forget.

I can no longer work. :’( and attempt to make it on disability.

And now there are aneurysms INSIDE the AVM. Arteries and veins that only get weaker as time goes on … with 3 aneurysms inside.

One has already bled to the point of hospitalzing me and had to be embolized.

Why would they not offer gamma knife radiation?? Cyber knife?? Embolization?? Any other options at all??

This is YOUR life and a good doctor would tell you all available options, the risks, and that it is YOUR decision.

Had I known before what I would have to go through and feel like now, I would have found a good team of doctors to treat me long ago.

This is a hard decision you need to make, this was decided for me as when mine was discovered as I was a minor the surgery ended up not working my A.V.M. is not in the greatest or easiest to get too
it's at the base of my brainstem. They told my family just to leave it. Life went on as normal I grew up, then when I was 26 I ended up having a major stroke with left me paralyzed and unable to walk, I did have at the time was experimental Gamma Knife, which is a form of radiation The doctors are pretty sure it's gone, 11 yrs. out Yes, I maybe paralyzed but I'm OK with that. what ever you decided best of luck.

Hi
I would recommend going to Professor Morgan as he is the best in Australia for AVM’s. I had a AVM that was a spetlzer Martin 3 right in the middle of my brain. It was taken out in Feb 2010 just so I would survive because I was a walking time bomb. I survived but was paralyzed on my left side. The operation was very timely as it was just about to burst and there was an aneurysm on top of the AVM which is very common. Prof Morgan is at Macquarie University Hospital in Sydney.

Hi, my AVM is on the left side of my brain in a "high motor vortex" part of my brain. i had gamma Knife surgery on 1/22/13. Had no real problems until i had a grand mal seizure this past New years eve. The AVM was expected to take up to 3 yrs to completely heal but apparently it's healing faster than expected which caused the blood flow to back up which in turn caused swelling which caused the seizure. I am currently on steroids (which I'm weaning off of) and keppra to prevent more seizures and 2 other meds to take the swelling down. All in all i'm am VERY pleased with the results. No, I don't ever want to have another seizure. It was the scariest thing I've ever experienced and i thought I was having a stroke at the time. but if that means that this whole thing will be over 1yr to 1 1/2yrs sooner than anticipated than I'm thrilled with that! They told me my AVM had a 50/50 chance of rupturing w/o surgery and that if it did rupture, I could be paralyzed permanently or die. I was also told by a friend that her cousin DID die because of his rupture. Mine ,like yours, gave me no symptoms. They found it when looking for something else. I'm glad i had it treated. I lived with mine for 47yrs and didn't know i had it. Hope this helps. I know its scary! I'll pray for you!

I am NO HOLY ROLLER, but my advice is ask GOD to help with all of your future decisions on this issue!

Good Luck!!

Lisa

hi dear / God Bless you.... i would suggest you to consult a Gamma Knife Surgeon ASAP as it really is a ticking time bomb. I had got my 9 year old son treated with Gamma Knife in India for an AVM in the left ventricle. He got a stroke while in school and God and the doctors saved him. He is living fine now and the AVM fully treated. Do not wait as you can live for 100 years after Gamma Knife..... and that too without any worries.GOD BLESS