AVM Survivors Network

New caregiver member treatment expectations

I’ve been browsing this very helpful network for a few weeks - thank you everyone for sharing your stories. My husband, Tito, was diagnosed in Jan 2019 with a grade 3 unruptured brain AVM in the motor cortex, with 3 small associated aneurysms. The AVM was found during a head CT because he had a left leg seizure - which we did not realize was a seizure.
3 neurosurgeons all agreed that, due to the size and location, the best option was to emobolize (glue) the AVM first and then determine whether the next step would be surgery or CyberKnife/Gamma Knife. Status post 2 embolizations, the AVM was reduced in size by 50% but due to the location, CyberKnife/Gamma Knife is now the recommended treatment. We are currently getting multiple opinions for the next treatment steps (Maryland/Northern Virginia/Washington, DC area).
We are (were) working full-time, active walkers/hikers/kite fliers on the beach, and energetically playing with our young grandchildren, until the aftermath of the two embolizations. Tito has left leg weakness, shaky left hand, and fatigue. The fatigue is the hardest symptom for all of us because we never know which day, or time of day, or for how many days, the fatigue will last. Some days his left leg is very weak, even with physical therapy.
My questions for the group are: Has anyone had embolizations (glue) and then delayed or stopped further treatment? What can we expect as side effects of the radiation for an AVM in the motor cortex? Thanks, KiteFlier

Hi, @KiteFlier

I’m sorry to hear about your husband being unwell but it is great to have you join us.

I’m not sure I can answer your questions, so I hope others will do so but I would say that it is very easy to underestimate an embolisation. It seems like a very uninvasive treatment but I can say from first hand that all of a sudden having your brain plumbing rearranged definitely takes it out of you and I think it can take months, not weeks or days, to feel “better” and if he is only partly sorted, then clearly, there could be new pressures in places he really doesn’t need them, so i am sure it can feel really weird.

Extreme fatigue is definitely one of the effects of treatments of any kind in the brain, so not unusual. I don’t know whether to be particularly worrying, or not. I do know people seem to often have the same with gamma knife, too.

I would think it is possible – depending on how long ago he had the embolisation – that his brain is still smarting from the embolisation and the weakness, shaky hand and fatigue could all be temporary until it all settles down a bit. However, it could be to do with anything.

I had an embolisation over 2 years ago and it took me ages to feel “better” so be patient. Talk to the doctor about the gamma knife do/don’t do. Motor cortex is a somewhat risky place but your doctor will be able to talk about the specific risks & benefits.

Hang in there. It might still be early days.

Wishing you both the best,