I’ve been told that due to the location of my AVM that it is inoperable and the only treatment option is gamma knife (when we’ve decided treatment is 100% necessary). I was reading up on gamma knife and I kind of like the non-invasive route. But I honestly can’t find places that give me what complications can occur with gamma knife/radiation.
Can anyone help answer that for me, possible complications? Possible outcomes? Can it cause the AVM to bleed/rupture during the procedure? I’ve read all the good and positive but I don’t want to go into this decision blind to the other side that we don’t like to think about.
Thank you everyone for your answers and continued support
Hey Taylor, next time you see your neurosurgeon or get an opinion, you should ask these questions. I am also in the situation. Yesterday my neurosurgeon had gone over complications for my situation. He actually told me nothing happens the day of the procedure but months later is when the effects come in. He said common this are radiation necrosis and edema. Neurosurgeons try to be precise with radiation to avoid necrosis but it can still happen. From what I heard gamma knife is the most precise for AVM but other machines are just as good. The neurosurgeon I seen yesterday told me that edema is the most common thing that occurs around the 6 month mark. In case you don’t know what edema is it’s basically a build up of fluid in the brain. After your gamma knife surgery, every couple months you would have to do an MRI to check if the AVM is shrinking and if there is any edema. If you have edema, you will be put on steroids until it has resided. I’m still seeking opinions as well because I want to make sure I pick the right neurosurgeon. I do feel really comfortable with the one I’m seeing right now. He told me he even obliterated a grade 5 avm with no complications besides edema. There was only minor weakness that went away once the person was on steroids. Keep doing what your doing and getting as much information as you can. Each Avm is different so seeing a surgeon would give you better answers Hope this helps. Cheers from Chicago.
I totally agree with John's post...Every AVM case is different and the best answers would be from your neurosurgeon...Have faith in your doctor and stay strong and positive!
Thank you so much John! This is definitely the type of info I was wondering, the necrosis and edema. I won’t be continuing with the doctors I am seeing here in Cali, instead will be going to PA/MD for any treatment. I have multiple different doctors out here who just don’t communicate well. One doctor makes it too big of a deal (currently it’s not), my first doctor didn’t even Tell me what they found. Just said found something in my brain, we have to follow-up. They are very kind and competent doctors, just not good on the communicating with the laymen. I’m originally from PA so I’m going to take my scans and everything to a doctor out there and let them be the final say. Johns Hopkins in MD has a Fantastic reputation for Neuro-anything.
Hey Taylor! If you are looking for a few opinions out here, you could also try Thomas Jefferson hospital for neuroScience in Philadelphia… The neurosurgeon there Dr. Jabbour saved my life after my rupture and did my gamma knife radiation with Dr. Shi, the radiologist/oncologist… I met with both before my procedure and they went over the benefits and risks in complete detail along with how future follow ups will be handled… I wasn’t even nervous in their hands, they are the best. To them, doing gamma knife is like putting stitches in a finger.
Wow! Thank you Jeannine. I am from just outside of Philly and didn’t even think of looking into TJH. What you said about gamma knife is like putting stitches in a finger for them, that has Really relaxed me. I will definitely look into Dr. Jabbour and Dr. Shi now. My parents would probably also like having me get the treatment close to home, so they can be there. - Thank you for the recommendations!
Hi Taylor! Try looking into getting second opinions. I was told my AVM was inoperable but found a neurosurgeon who was willing to do surgery and it was a success ( Dr.Lawton @ UCSF) . I did gamma knife before surgery thinking it was inoperable and I do know that the one of the risks would be: rupture/ bleed during the procedure.
I must say I have never even heard of that being one of the risks of gamma knife, that is super weird considering the radiation doesn’t even show any effects whatsoever until at least 6 months after the procedure… The gamma knife radiation is like getting a super strong X-ray, definitely ask questions and have them go over all risks and benefits of all procedures you may be interested in and that are possible… I was not told of such thing… I was told that the risk of rupture would actually decrease after the procedure until it was obliterated.
I have not spoken to a doctor about gamma knife particularly Yet, so I can’t be sure what’s what. I was only told it was only treatment option. Although, I am leaning towards not getting any treatment. Of course I will see what the doctors recommend and if they tho L I can be fine without treatment. But I believe e , currently, that the risks may be too high to be worth it. However, I may want children in the future and I know that can be risky with an AVM. We’ll see
Like others have said, get as much info as you can. Whether you're talking about a gamma or cyberknife, in order to treat the AVM they have to go through good brain tissue. This is one of things that makes me apprehensive about radiation(by choice). The brain is the most complex structure in the body. Good luck.
Thank you Rob. Yeah, that’s my hesitation. Mine is a pontine AVM. Since the Pons is packed with so many important and vital functions they will not do physical surgery. Radiation is my only option. But I worry about side effects of radiation on that particular area. Any damage could be detrimental. I am asymptomatic so I feel like just continuing with life as normal without treatment would be the best option… maybe…
Although its not a common risk, You are informed that its still a possibility just like how death is a risk when getting a angiogram. Its not common, but it's a risk that they like to let you know about.
Yea I don’t think any decision is easy with these things… I had not one symptom myself until the darn thing popped 4 days before my 31st birthday last year… Nobody even knew what an AVM was- Thank god I was one of the lucky ones with just some vision loss and these daily migraines… Get several opinions, see what the docs say… Ask a lot of questions and find one that you like and trust and go from there
I came in touch with the leave it alone/monitor literature(see below) after I began embo treatments. To this day,I still go back and forth with my decision to intervene. But as one Doctor told me its not like "you take a pill and this goes away". A ruptued AVM is not something to be taken lightly, so its not an easy decision. Again, Best of luck
Hi Taylor,
I have a right temporal avm, I pretty much rushed into having mine treated I didn’t really know about this site beforehand so I never seeked 2nd opinions. Anyway I had gamma knife twice with 6 months between treatments due to the size. It’s not a pleasant day but doable! When going for my 2nd treatment they said that it has shrunk by 10% so far so,I’m hoping I’ll be one of those rare ones where it will work quite quick. As far as side effects go. I’ve had the odd headache, some dizziness and just feeling a bit weird in the head but nothing major as of yet! It has been 9mths since my first treatment and 2 months since my last, so I know there is plenty of time for effects to kick in!! (Hopefully not tho) hope this helps a bit
Amanda xx
Hi Taylor,
My AVM is in a different place but am too struggling to draw any conclusions and decide. Gamma comes with a 5% chance of permanently damaging my vision as AVM on optic nerve. Not easy. Did you make any decisions in the end?
Alex
I too have an AVM that is inoperable and GK was suggested. Regardless of the risks, GK in this situation is the obvious choice.
Now in my case my AVM was made smaller by the GK but not obliterated and unfortunately I was one of the unlucky 2/3% that end up with radiation necrosis. Now i just have to wait for it to bleed.
They dont yet know why some people get the necrosis. In my case 18 months after the GK, i felt sick and suddenly became disabled while jogging to a video rental store.
Good luck! I’d take the chance everytime when its inoperable.
Hi Alex, how re you? what did you decide? My daughter got the same situation with you, difficult to make dicision. Would like to learn from your experience.
