Does anyone have an AVM on their left parietal lobe that had surgery?

Hi everyone,

I am just curious who has an AVM on their left parietal lobe like me…also if you do or did how was it treated? My Neuros told me that mine was not a good candidate for surgery…too risky. I’m ok with that but was wondering if anyone else has an avm in a similar spot who did have surgery and was it successful? Thanks!

Rachel

Hi, My AVM was on my left side from the front almost all the way to the back of the left side. I had surgery and there was no problem with the surgery. I now suffer from double vision, and eplisey. But other than that every thing turned out great.

Rachel, My AVM is located on the left parietal lobe also with a fusiform aneurysm…(by the way, love your x-rays [look a lot like mine])…! I had GK 8/10/09 and glad I did. My AVM was also located in an area where surgery wasn’t an option according to my neurosurgeon, so I forged forward with GK. Not only was having surgery too risky, he said, but my age probably played a big part in his opting for GK. Sometimes surgery and age don’t mix! Recovery would have been more difficult. Sounds like we have similarities in our AVMs… remember - always believe, robin o

Hi Rachel, I had my AVM on the left parietal lobe too. I didn’t have a choice about having surgery, I think because it burst too many times, and I didn’t know about it in the past so I couldn’t treat it, but I honestly have trouble remembering the details. I know that I was a very good candidate for surgery because mine was on the surface (my surgeon said it was like scooping fruit out of Jello haha) and because I’m 19 so I was really strong. The scar/that part of my brain hurts when the weather changes, like arthritic knees, but other than that really everything went absolutely the best it could have and I’m 7.5 months out of surgery and living a full life. I still have a lot of recovering to do, but I am so glad I was able to have it out.
Good luck, stay positive!!

Hi Rachel,

Yes, that is exactly where my AVM was. My AVM ruptured on July 19, 1995 and I had a successful surgery on August 15, 1995 with complete removal of the AVM. Let me know if you have other questions or any additional info the doc tells you…

Scott

I did. I had brain surgery. The first surgery was about 12hrs long and the second surgery was about six hours long. The Dr. I had was Dr. Michael Scott of Boston Massachusetts. I am not sure what hospital he is at now, but he is in Boston.

I heard from my doctor that Boston was the best place to go for the most complicated cases of AVMs if my son needs to be embolized in his lungs we will be going to Childrens Boston

michael santos said:

I did. I had brain surgery. The first surgery was about 12hrs long and the second surgery was about six hours long. The Dr. I had was Dr. Michael Scott of Boston Massachusetts. I am not sure what hospital he is at now, but he is in Boston.

I had brain surgery on the left parietal lobe. I was 38 years old and the surgery took 17 hours and it was a long road to recovery but I did and I function fairly well. The only problem now is seizures and with the medications that are on the market now it’s not to hard to find one. Keep the faith…I did and everything turned out very well. Good luck…

Kimberly,
I was 38 when I got diagnosed. My docs decided to do embolizations and stereotactic radiation. They told me surgery was too risky. Good to hear you had a safe and effective result! :slight_smile:

I’m 40 now. It will be a year in Sept since I had my radiation and the docs tell me it takes 3 years to show any signs of reduction. So far I feel great so I can’t really complain. :slight_smile:

Rachel

Kimberly Nolan said:

I had brain surgery on the left parietal lobe. I was 38 years old and the surgery took 17 hours and it was a long road to recovery but I did and I function fairly well. The only problem now is seizures and with the medications that are on the market now it’s not to hard to find one. Keep the faith…I did and everything turned out very well. Good luck…

follow up..

I had my LINAC stereotactic radiation in Sept 09. After a 3 year wait and multiple CTA's I was told I was avm free. I haven't had any symptoms since. I can't believe it's been 5 years since my radiation. How is everyone else doing?

Rachel, that is excellent news. Thanks for the update! We tend to hear from the folks who have troubles, but not enough from those who are doing great. Can I convince you to add a quick post to Success Stories? Those really matter to our newly diagnosed members.

Hi Rachel, I also has stereotactic radiation on my 2nd AVM in July 2013. I found out about 8 months later that the AVM was obliterated. I still have an inert AVM but I was thrilled to have the 2nd AVM gone! So, I happy to read your great news!

Hi Rachel,

My AVM was parietal lobe, but on the right side, not the left. It was also inoperable. My neurosurgeon, who operates to remove more suitable AVMs all the time, said trying to cut mine out would leave me with severe deficits if it didn't kill me outright. Sometimes we just have to trust the experts.

Mine was treated very successfully with embolization. I have just joined the group and have added a narrative about my experiences. You might like to read that. It's at http://www.avmsurvivors.org/profiles/blogs/hi-there?xg_source=activity

Geoff.

Rachel, my AVM was also in my left parietal lobe and surgery was not an option. I did have proton beam radiation. Where you offered radiation?

Stay Strong & Positive!

Hi Rachel,
I have a right superior parietal grade 2 cerebral AVM as per Spetzler-Martin classification. My neurosurgeon deemed it unsafe to do surgery due to high risk of stroke and ruled out embolism, he then referred me to an oncologist who suggested stereotactic radiation therapy would be the best option because it had the least risk (still risk though) involved. I was given 1 high dose of radiation (20gy). With stereotactic therapy it can take 2-3 years to work, however what was explained to me is most people the AVM is gone by 1 year. I had my treatment in April so far there has been no change however my focal seizures are being managed with Keppra.
I hope this helps you.

My left parietal AVM was big (4 on Spetzler-Martin scale) and every scalpel surgeon I saw didn’t want to touch it unless I had a life-threatening bleed because it was so deep. I had gamma knife surgery in sept 2009. My MRI’s show that I am AVM free, which is wonderful. I do still have chronic issues with brain swelling and late stage radiation injury, chronic, constant severe headaches, big executive function deficits, and some paralysis/numbness issues in my right arm and leg. But I’m thrilled to be AVM free and would make the choice again to have gamma knife even though I had to deal with radiation necrosis as a complication.

Jessica...You made my day! My AVM was on the left parietal lobe as well and I had Proton Beam Radiation and am AVM Free!

Jessica that is great news about your AVM being gone. Is there therapy that can be done to help with your deficit?

My AVM is in the right parietal lobe. My neurosurgeon said a crani was too risky--potential for losing left field of vision and left side motor deficits. The size & shape weren't conducive for embolization. I've had 4 Gamma Knife radiation treatments: June 2012, December 2012, June 2013, June 2014. At my most recent GK, the doc said my AVM had shrunk by 70%.

I DID have a craniotomy to clip two aneurysms (a month after my first GK). They were more accessible and were a greater danger of rupturing.

Hi Jessica

I hope you are well.

I too have a Grade 4, Parietal AVM (right side though, 4cm). I was just wondering how long it took for your AVM to be obliterated? I have been told Gamma (which I had nearly 4 weeks ago) will take up to 4 years to work. (75% chance of success).

Many thanks

Best wishes