Hi everyone, I recently got diagnosed with a Grade 4 AVM on my occipital lobe. Anyone else have a similar diagnosis? I would love to hear about your experience. I have struggled with migraine with auras for 15+years, this year my symptoms have worsened. I had a fainting episode which prompted the MRI that discovered the AVM.
I’m in the process of deciding what treatment to pursue. Dr. Patel in Boston says he can operate on it, though there’s a chance of losing my vision. Two other neurosurgeons recommend gamma knife. I’m nervous about which treatment option to pursue. Craniotomy is the ultimate cure but comes at a high risk. Would love to hear from those that have Grade 4 AVM. Thank you in advance.
The irony of this all is that I’m getting my doctorates degree to become an occupational therapist. When I found out about my diagnosis, I just finished a lab practical on a patient with a hemorraghic stroke. It’s bizarre and frightening to be on the other end of this, a total identity shift! I’m a mother to a 3.5 year old girl and want to be in her life. Thanks for reading this far. Any feedback is appreciated.
@Seachange welcome to AVM survivors! It’s great that you found us!
I was immediately going to say that I’m sure I’ve read of someone going through exactly the same situation recently but I can see that you’ve found Jazz’s post elsewhere, so you’ve found the most immediate, relatable person straight away.
I guess my question for you is about the potential sight loss: has the doctor indicated a risk of losing some peripheral vision rather than any central vision? Because from my reading of people’s stories, this loss of some peripheral vision seems more common for operations in the occipital lobe than any risk to central vision.
I have a grade 4 AVM also in the occipital lobe, in the right lobe.I also suffer from migraines and aura in my left eye. My only option as it was presented to me was Gamma knife, surgery was too risky and there was a big chance I would lose part of my vision in my left eye.
I understand your worry and especially with a little one around, but the chances of a bleed are relatively small with an unruptured AVM.
Gamma knife will take a while to “work”, but it’s a safe option.
Hi Seachange, sorry to hear about your diagnosis. Mine was very similar, grade 4 and right occipital. I had one bleed resulting in minor peripheral vision loss, then had gamma knife surgery as this is the least invasive approach. That’s how I was diagnosed. So as Sarah says, chances of a bleed generally are quite low, and even then it’s not always a disaster.
I did not respond to that probably because my AVM was very high flow, so ultimately I went for endovascular surgery that completely closed the AVM but had a more severe impact on my peripheral vision. I’ve adjusted to that and am absolutely fine. Ultimately you need to get some opinions from neurosurgeons to know which options are available to you. Gamma knife is probably your safest option and may be done in one stage for more compact AVMs, or in multiple stages of your AVM is more diffuse. The downside is the waiting time which can be 3-5 years. I waited 5 and didn’t get a result but many people here have had good success at 2-3 years. Surgery is often done with some endovascular intervention first to reduce the number of feeding arteries. The risks of a purely endovascular approach seem to be similar to the combined approach but with lower success rates overall, although endovascular methods have improved a lot lately and there are some surgeons using newer methods that seem to be able to treat AVMs that were previously not addressable. It’s a difficult process balancing all of this and I know exactly how you feel trying to make the treatment decision. I honestly don’t think there is a wrong decision, just take your time in making it. Happy to share any information/experiences.
All the best
Jonny