Hi again I am supposed to have Gamma Knife for the 2 veins very small that he could bot embolize. He got 98 percent of the avm but the 2 veins left are extremely small.
I am very scared to have GK and am considering leaving the 2 veins .
Any positive outcomes of GK I have read a lot of bad stories. I am doing so great now never had a bleed my avm was found accidentally from an mri for ear ringing.
Any help would be great
Hi @Chloe. I’m very sorry you’re having to go through this. I have not read your story or what have you, and I am in no way offering any medical advice. I have had gamma knife 3 times. And I ended up also having a craniotomy, shunt install, shuntectomy, gall bladder removed, appendix removed and other minor surgeries. I know that the doctors in general are trying to do what’s best for you the patient. However, if you ever are not sure what they want to do ask! And if you don’t understand (which I often did not in my case) ask for layman’s terms. I say this because in some of my surgeries possibly avoided or pushed up on account twice I had an AVM rupture while waiting to be scheduled for surgery! Unfortunately, we have to be attack dogs for our health. I hope you have a successful procedure and bright future!
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My avm is in the right side of my brain . 98 percent of it has been shut down with embolization. He want to GK the last 2 percent . My worry is the side effects . I feel great since having the embolization and I’m very concerned about the GK I have read some horror stories about GK.
Chloe,
Couple of thoughts… maybe three…
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Talk to the doc about your concerns. The risks you’re concerned about are real but I don’t know whether they increase depending on how long you get zapped for, for example. So if you’ve only got 2% to do, you might be under the gun for a very short time and not have as big a likelihood of the bad stuff happening.
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Get a remote second opinion from somewhere like Barrow Neurological Institute or Mayo or any of the other major centres. It was c $200 last time I looked, so quite affordable by medical standards.
Can’t remember no 3, so I’ll quit there! If it comes back to me, I’ll tell you 
Very best wishes,
Richard
Hi Chloe,
Leaving even 2% untreated leaves you at risk of bleeding. Small AVMs can still result in serious bleeds. Gamma Knife risks are different for each patient and can be estimated using a neuro surgical risk scale by your neurosurgeon. I strongly advise that you discuss the specific risks of Gamma Knife to your AVM. Key risk factors include previous bleed, location of AVM and the treatment volume. It sounds like your treatment volume is likely to be very small, although the presence of embolising material can affect the effectiveness of GK. Lots to discuss with the neurosurgeon here. I had GK on my large AVM two years ago and have had no lasting effects. I’m happy to answer any further questions you may have based on my own experience as I fully appreciate the anxiety of these treatment decisions.
All the best
Jonny
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Thank you I know most of the avm was embolized but 2 small veins could not be done. I have had no headaches and feel so good and all I read is people have lasting headaches and brain swelling and that scares me . My neuro said this is what I have to do to get this done and over with.
I just don’t want anything to happen especially the brain swelling. How did you feel afterwards. And they did tell me I probably would only need about 15 min of radiation.
Thank you for all the help
Best advice I heard yet “get your head over to Barrow Neurological Institute”
If they were able to do what they did for me - their words/thoughts are facts.
I know it can’t be that easy, you’re somewhere deep in the US - unlike me, who’s 15-20 mins away from em.
But, imo it’s truly the best place for folk with “our” condition
GL lady 
have a great weekend
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Hi Chloe I don’t have much information in regards to your question but I want to share I’m happy to hear that you have had a good results in my case it’s my son he’s going for his first gamma knife procedure November 4th. He’s 7 years old he had a rupture back in June. He lived his whole life normal we never knew he had any malformation in his brain until that terrible day. He came out okay no brain damage thank God. But I am so scared. He still has several aneurysms and they will be focusing on where he already bled because his doctor says he’s at risk of bleeding again. You mentioned they’ve already covered 98% of the AVM to me that is wonderful news. And gives me hope. I pray for your recovery!!! 
Hello I pray for your sons recovery. Yes they did an embolization in May and got 98 percent I’m very lucky and I need to be reminded of that.
I’m so sorry to hear your son is going through this . I guess we are born with these I’m 51 years old and never knew I had it except I had headaches my whole life and only found it through and mri for my ear ringing , now I never have any… please keep me updated on your son and my thoughts and prayers are with you and your family . It’s a lot mentally to go through but we are all here to support you 
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Robert Spetzler who was half of the Spetzler-Martin AVM grading scale was the head of Barrow until his retirement from Neurosurgery.
Of all the radiation systems Gamma Knife is the most exacting having the precision of a scalpel. I’ll leave it at that as any other comments I would have made have already been stated.
Hi Chloe,
I think I have posted to you before, but to reiterate, I had an AVM the size of a golf ball in the right side of my brain which although caused seizures had not bled. I had GK surgery in 2015 which went fine - no side effects and reduced the AVM, but after 4 years there was still left a vein/artery that they wanted to treat. I was reluctant because I had suffered no side effects, no bleed and no further seizures and felt fine, but they argued that whilst the AVM was still there I had an increased risk of stroke and that this risk would increase each year with age (I am now 57). I decided to have the second GK surgery (almost 2 years ago now) not because of the risk to me but because I was concerned that if I had a survivable stroke/bleed then I could be a burden to my partner. Again I had no side effects other than minor headaches for a week. I am due to have an MRI in December to assess the last treatment.
Thank you for the reply. I agree it’s a constant worry with the 2 veins left. And to hear you had no side effects makes me feel better.
I have 2 very small veins left they said probably 15 min of radiation. I’m hope if I decide to do this all goes well. Thank you again