Hi Everyone. I have recently been diagnosed with an AVM in my left occipital lobe. I have been given conflicted recommendations for treatment. One neurosurgical team recommends surgery, the other team recommends radiation. Has anyone here been given the option of having EITHER surgery or Gamma Knife radiation? I'd love to hear about whether you have lived through a similar dilemma - what led you to ultimatley choose radiation.
hi Lee, i hope i can help with your situation, i was diagnosed with a right occipital avm that ruptured in may on the 22nd. after alot of waiting and appts my dr recommended that i do that gamma knife.. he felt that if he took it out with surgery it would do more damage to my vision which has recovered almost 80%. Gamma was the best choice after hearing that.. being that it is in the occipital regiion i would think that they will prob tell you that also..i have the utmost conidence in my dr and i didnt get a second opinion, i took four months to get to the point im at now, i have my gamma knife on the 14th of oct. so you see you can wait awhile which i didnt feel i needed too/ hope this helps
Lee, My wife woke in 2011 with a bleed in her left side of her brain that was real close to her motor functions. She endovascular surgery and a month later Gamma Knife. Her AVM was 4 cm in size. The first month she started having minor seizures in the right hand. Tingling and then numbness. More medication was issued because the medication would not prevent them from coming but was more of a nuisense than pain.Now it's 2014 and she still symptoms but not as frequent.
Hope that helps.
I was given a choice when it was finally offered to me. It was 20years post bleed. No surgery was attempted then as they told my parents it was too dangerous. That was1979. By 1999 i found out i could have surgery or radiosurgery. As a mum i didnt want to risk myself too much and i weighed up the risks and decided on radiosurgery. They said right temp lobe shdnt cause too much damage. Apart from memory and my epilepsy getting worse fpr a few years i dont appear to have too many deficits. It took two radiosurgeries to get rid of it but it worked. The angiograms have been a pain and im glad to be finished with them. I found some drs better at doing them than others. So thats been my experience hope its not too longwinded.
I had little choice for mine. The AVM was growing quickly so I had to get the crainiotomy first. However, as that worked only for 80%, so they did the gamma knife a few months later. Compared to the surgery, the gamma knife was ok. I've had memory problems before and after the surgery. It's one of those things where I'ved tried to keep good records.
The crainiotomy was harder to handle with the surgery and recovery. However, it was fast. The gamma knife was not as bad on the body, but it took two years to complete the process of getting rid of the AVM. It was a tough call for me and I didn't have a choice. If I had to do it again, I'd try the gamma knife alone.
Im pretty sure thats where my AVM is and its bled (unbeknown to me) I was given 2 options only surgery or Gamma knife surgery, My surgeon said he didnt really want to operate as he could be sure how much of my sight he could save ( might sight hasnt been affected at all by my bleed at all )so he was hoping that Sheffield would be able to treat me with Gamma knife surgery his only concern was that my AVM wasnt the usual shape :( they did accept me which was brilliant because if they hadnt I would have needed to have the surgery.
Its now been a year since my Gamma Knife surgery and I feel fine I have good and bad days no better or worse than before I have scans in Jan 2016 gamma knife surgery takes a long time to work but its the least evasive (if you would like more info about my treatment just let me know) x x Wendy
Hi Lee, have you decided on which treatment option to proceed? My husband is in the same boat as you. He was diagnosed with AVM last month. It's on the right parietal lobe, less than 3cm. 2 different doctors we've seen both recommended either surgery or gamma knife. Of course one recommends surgery and the other gamma knife. This is definitely a tough decision to make and I've been looking for as much info as I can from other AVM patients in hopes that it will help my husband decide. I would love to hear back from you on how you ultimately weighed your decision if you have made one already. Please take care!
-Carla
Hi sorry I just saw this.
On April 25,2013 I had a brain aneurysm due to an AVM It ruptured and bleed. My AVM is in the cerebellum.
On the 26th 2013 they did a procedure called an Angioplasty with glue to stop the bleeding.
The bleeding caused what is called a SCH stoke. (subarachnoid hemorrhage, an aneurysm bursts in a large artery on or near the thin, delicate membrane surrounding the brain. Blood spills into the area around the brain, which is filled with a protective fluid, causing the brain to be surrounded by blood-contaminated fluid.)
I had my Gamma Knife at UK Hospital in Lexington,Ky. on September 30th.
That set me back a little but starting to feel a little better.
(The Gamma Knife procedure required a frame to be mounted to my head for the
surgery. The purpose of the frame is two-fold. First, it provides a necessary method to keep me completely still during treatment. Secondly, the frame acts as a reference for the computer software to coordinate the system. Prior to frame placement I was given a mild sedative I was awake which I could have done without .
The frame was then attached to my skull and held firmly in place by four pins. ( I should have let Kel take a picture I think not ) A local anesthetic was administered to the pin sites. The frame was on until the treatment was completed. (Way too long).
Following frame placement I was transported to an imaging area to receive my MRI and CT scan. The plan is calculated with Gamma Knife’s 3-D computer mapping model to determine the exact location of the target as well as specific radiation dose.) Let’s all pray it worked !
So I was on a medicine called Topimax for my headaches which I hated so it’s gone.Now on Gabapentin 300mg. Two pills three times a day. Not really sure what I think of it. Kelly seems to think it is helping me so will stick with it for awhile since it’s not an addictive drug. Really could do without any type of meds. It does not get rid of the headaches but I am able to function better on it then the Topimax .
The last MRI showed I still have blood on my brain so till that absorbs I will have the headaches. The purpose was to make sure there was no swelling in the brain and there was not so that was good news.
I also take vitamin B complete and D3 and EPA- DHA.
I go back 1st week in October for my one year since my GK they will do an angioplasty to see how everything looks . It usually takes about 2-3 years for the Gamma Knife. In September I had my one year check up. I had 50% shrinkage which is just ok. Will have another check up September 2015 if it’s not gone another check up in 2016 and at that point depending on what’s left there are new decisions to make.
I hope this is of help. Please feel free to inbox me if you have any questions.
Hugs and Prayers,
Niyani