Hi! I’m Liz, I’m in my early 40s and was recently diagnosed with a 3 cm AVM in the right occipital.
I’m in information gathering mode before making a decision regarding treatment, but given the location of the AVM, medical professionals seems to be leaning towards radiation because of risks associated with either a craniotomy or embolization.
I have plenty of research to do regarding radiation but the consensus among the neurologists and neurosurgeons I’ve seen, in addition to what I’ve read on this site, is to undergo treatment.
Has anyone with an AVM in the right occipital undergone radiation? If so, could you please share your experience with me? Truth be told I’m terrified of anything going wrong, from brain swelling, to vision loss, to hair loss, to pretty much anything and everything.
Any info you could share with me would be greatly appreciated!
Welcome to avmsurvivors! It’s really good that you’re having a look round and getting plenty of info before making your choice. I think I did basically the same.
My AVM was in my dura mater, kinda “over” the right occipital area rather than significantly invading my occipital. For whatever reason, my interventional radiologist and the neurosurgeon recommended an embolisation for me and I had a decent time out of the “surgery”. Embolisation was very gettable throughable, as far as I’m concerned.
So… I’m not sure we have tons in common but I’ve been in the OMG discovery space and it is a bit OMG. Finding out options and taking time to get used to the idea of having surgery of any of the three kinds helps. I hope by the time you get round to making your choice you’re a bit more settled about it than I expect you are today.
Hi Lizz and welcome. My AVM was in my left temporal and ended up having gamma knife. I went through the decision process between gamma and craniotomy. Ultimately gamma knife was my neurosurgeon’s recommendation and I went with it. The waiting was at times trying but in my case was far less risk. John,
Thanks so much for the welcome! I am indeed in the OMG phase, Richard, but doing my best to stay positive.
John, was your overall experience with gamma knife positive? Are there any questions you recommend I ask my doctors? Side effects, other than brain swelling, were not addressed in my initial meeting with the oncologist. From looking through the various threads on this site, it looks like hair loss, nausea and vomiting are things I may want to inquire about. Thoughts?
My experience with gamma knife was really positive. I had some mild headaches afterwards and then some more around the 5 to 6 month mark but nothing that I required medication for. I experienced some “ice pick” head aches which was sharp isolated pain but it came and went quickly. At one point it would occur several times a day and trailed off and just stopped.
I would consider asking the Dr on estimated time frames, if he thinks one treatment will be sufficient, percentage of success estimate. While dealing with the brain is a best guess for sure with few certainties they may give some indication. My Dr. gave me a 95% chance of success in two years with one treatment. From brain guys that us a high guestimate! He was right!
I did not have hair loss, nausea or any other significant side effects. John.
Hi Lizz, my 16yr old son (now 18) has an AVM in his left occipital lobe. As with you, the surgical removal had too much risk for permanent vision loss so we chose to do Gamma Knife at UC San Fran. Because his AVM was large he had 2 GK sessions about 3months apart. His experience was much like John’s experience in his post…headaches and some migraines that eventually went away after about 12-18mos. He has had no other vision issues and has no side effects at this point. We are at the 3yr mark so will get getting an angiogram to determine next steps. As of a year ago the AVM was a fraction of the original size and we are hoping that it will be completely gone this year. Hope this helps. I would definitely look into this treatment and my advice is to go someplace that has used GK for AVM treatments versus tumors and others types of issues. We live in Portland, OR and although there are GK facilities here none of them had extensive experience using for AVM treatments…which is why we went to UCSF. Jeff.
Hi Liz, guess what? I’m in my early 40s and have a 3cm AVM in the right occipital lobe. It bled last April as a result of which I was diagnosed. No major issues from my bleed. I had gamma knife at Sheffield UK in July 19. The procedure itself was fine, I felt rough for a few weeks after but am fine now with no apparent side effects 8 months on. Happy days! Surgery for me was high risk (Sensitive area and I already had some minor vision loss from my bleed plus the main draining vein is in the way of the primary arterial feeder making it a difficult surgical approach) and although I was told I could potentially have embolisation (Liverpool) my neuro and I felt that radiation was the best balance of risks with the strongest track record (several thousand treated at Sheffield to date).
You should not loose any hair unless it’s close to the surface and if so only a patch.
My nidus was compact and they were able to treat it in a single session, giving me an 80% chance of success over 3-5 years. I’ll take those odds. Some larger AVMs need fractionated treatments but they can only be sure when you are in the treatment room and they run the Gamma Plan.
The fact gathering stage and treatment decision was hard, and I sympathise. The hardest part was adjusting to the fact that this is a long journey rather than a quick fix, but I feel like we made a good decision. I wish you the very best for your journey and do get in touch if you have any more questions. It sounds like a very similar AVM.
Best
Jonny
Thanks so much for sharing your experience. I’m glad things have worked out for you; I hope your vision loss was temporary.
Our AVM indeed sounds very similar and your story is encouraging.
Initially, the neurosurgeons thought I might have two nidi/niduses, but after the angiogram, they agreed it was one that is a bit spread out. The larger portion of my nidus is compact and the smaller part is a bit more diffused.
One team of neurosurgeons has recommended a 1-time radiation treatment to the larger nidus and then depending on the success of it, they’d treat the smaller section. This team thinks I have a 60-70% of curing the AVM,
Another team of neurosurgeons is leaning towards a more aggressive approach and they’re suggesting a 3-5 series radiation treatment. That team, however, is still awaiting to review my angiogram. Perhaps after they have the full picture, they may change their recommendation…at that point, I’m sure I’ll have more questions for them.
I still feel like I need to gather a bit more information and I agree that its super frustrating that there is no quick fix, but onward and upward.
Thank you for sharing your story. You’ve given me hope that if I end up needing more than 1 session of GK, I don’t have to wait years between sessions.
Additionally, thanks for your advice regarding going to a facility that has used GK for AVM treatments vs. tumors…I wouldn’t have thought to ask that, so I’ll add it to my list.
I’m very happy to hear that the side effects your son experienced were temporary and that the AVM is indeed shrinking. Best of luck to you guys!