My story is that i was pooping (gotta see the funny side) and seemed to have backed out, and fallen and hit my head on the floor. Was about for about 1 minute, my wife found me and called an ambulance. None were available, so took a ride to the nearest hospital. 3 hospitals later and 10 days on the Neuro ward i had an undiagnosed AVM which ruptured. Thankfully zero damage as the bleed was small and seems to have bleed directly into the ventricle cavity. Hopefully this is the bleed pathway so if it does bleed hopefully it bleed the same way.
Very strange to be rushed as a priority case while full conscious, in conversation, and feeling fine. The hospital bed did more bodily damage to me than the bleed did.
I was discharged home to recover, and had my suregon consult. My surgeon was great, super informative and reassuring. I’ve a 3cm ish AvM on the boarder of the occipital and parietal lobe on the left hand side. The surgeon doesn’t want to risk imparing my vision due the pathway of the optic nerves, so recommends radiotherapy (linear accelerator, Novalis TX I think).
He’s confident in a 70-80% chance of obliteration, which I like the sound of. The session should be within the next 2 weeks if i approve (ive no real reason not to tbh). The radiotherapy doctor said they have to give my brain more of a dose than they like to normally, hence he said ive a 25-30% risk of vision impact.
Such a relief to have a diagnosis and plan in place. It is what it is so let’s get it started.
3cm avm in my left occipital/parietal region with the main course of treatment looking like Novalis TX linear accelerator radiosurgery.
Had a call from my radiographer last week saying that the dose plan indicates a bit more of a dose than he’d usually like to give. He said this results in an increased risk of it affecting my vison. He said it was a 25% - 30% risk. Im not clear on what he means here, is that 25% rosk of any side effects or 25% of a full vision cut. Ill ask him when he calls me next week. I wonder is it the volume of dose thats the issue and hes worried about poissble adema or necrosis?
From reading papers on postgeniculate stereotactic radiosurgery for avms it seems like vision risks is about 5%. Looks like the avm is quite “high” on the occiptal lobe (hence parietal boarder) and i hope avoids the opic radiations. Suregon did say he doesnt think there is any healthy tissue in the avm itself.
I dont really have much choice as after 3 bleeds (very luck with no effects) something needs to be done. Surgery is a much higher vision risk and embolization isnt suitable due to its feeder.
Id just like hear of anyones similiar experiences?
Welcome to AVM survivors! It’s great that you found us, though none of us wanted to need to find such a place!
I assume that the risk is of some impact to your sight rather than a risk of a total loss. Probably the most common impact to sight that I feel I’ve read about on here is to lose some quadrants of one’s peripheral vision and there are definitely a number of people here who are making their way through life without some peripheral vision. Some people have diplopia (loss of binocular vision) and some people need prisms to assure binocular vision, so there are definitely different things that can go awry without losing everything. Definitely worth asking the radiographer.
If you’ve got any worries about the whole thing, do feel free to ask. Hopefully sharing a bit (and having a read round others’ stories) will help you to get more comfortable with what’s ahead.
Very good to meet you,
Richard
p.s. I’ve brought both posts into one place, else you’ll end up managing multiple conversations and that way madness lies!
Ive been a lurker since diagnosis but thought i would join.
On the vision loss, I am of the same belief that it will be a risk of some impact. From my research (im an academic researcher so its my go to for everything lol), that full homonymous hemianopia is quite rare (and more associated to surgery). Ill ask the doctor but more for full understanding my side as im 99% on do0ing the radiosurgery.
Thankfully im a very calm pragmatic person, so this hasn’t been too disturbing personally. This has come, so ill deal with it, also what will come will come and ill deal with that as well. I will 100% engage here, as id love to contribute to helping others deal with similar (even if only marginally).
I’ve had a bit of a read around and actually, I can see people reporting HH with all sorts of treatment and/or from their bleed, so I’m not sure that there is any comfort that can be taken there. It probably depends most on the exact location of treatment.
Of the people who have lost a segment of their peripheral vision, that seems to me often to be homonymous, too (an odd word, in this use intended to mean affecting both eyes in the same segments).
Definitely something to discuss with the doctor. Gamma knife radiation is already one of the treatments used when accessing the AVM surgically would be otherwise difficult or overly destructive. Embolization (I had an embolization) is limited by, among other things, the vessels needing to be large enough to admit the catheter without effecting an ischaemic stroke. So it may be that gamma knife is the most accessible method for your AVM but it is always worth asking what other options there are and why they have been put aside.
I had a left parietal/occipital/motor cortex AVM (Spetzler-Martin grade 4). Had gamma knife surgery in 2009 after a bleed and it’s thankfully obliterated now. I do have recurring radiation necrosis/edema issues but hyperbaric oxygen therapy has been effective for me as a treatment.
Everyone is different but the weirdest visual issues I’ve had when the brain swelling/necrosis was bad was not being able to interpret what I was seeing. So my brain would interpret a pothole in the road as a tire or a dog sleeping in the road, or garbage cans on the side of the road as bears. I wasn’t able to drive for a couple of years during my first and worst bout of necrosis which started about 18 months after my gamma knife surgery. My balance was also bad because i had a hard time interpreting what I was seeing.
I still have problems with fine motor control in my right hand and right foot drop and limping. All of which get worse when the brain swelling/radiation necrosis gets worse. So far it’s been manageable and I have been able to live independently with some help from friends and family. I also have a mobility and medical alert service dog. My service dogs definitely helped me reclaim a lot of independence.
Best of luck with your journey and recovery. It’s a tough club to join, but the community here is awesome and super supportive.
Thanks Jessica. Ill make sure to eatch for any changes and get right back to hospital if any occur after SRS.
Mine is in the parietal/occipitsl boarder and 3cm max diameter. Ive been lucky to have had no symptoms after my bleeds. Fingers crossed thst continues into treatment.
Did you have any vision impacts or deficits? How big was your avm size wise?
Mine was pretty big - sort of torpedo shaped and approximately 4cm by 13cm. The vasculature in my left hemisphere is seriously messed up. I used to have a bruit but it’s mostly gone now.
I was lucky in that at the last minute, the neuro radiation oncologist decided that we could do it in one gamma knife treatment rather than dividing it and staging it with two. We didn’t know at the time that my body is extremely responsive to radiation. I’m glad they were conservative. Given the recurring radiation necrosis the general consensus is that I can’t have any more to my head. The AVM is completely obliterated though, so it was totally worth it. I do have some issues with gum recession and bone loss that may be related to the radiation. No regrets though, it took me about a year to rehab from the brain bleed so I’m very glad it’s scarred over and stable.
Sorry - you asked about vision deficits. Yes, i have problems processing and interpreting what i am seeing when the brain swelling/necrosis ramps up. I was lucky to not get any blind spots. I do see a neuro-ophthalmologist about the processing issues. He said that the location of my AVM and scar tissue could impact the upper right quadrant of vision in both eyes. I did notice more weirdness in what I was seeing in that part of my visual field during the brain swelling episodes, especially with neurofatigue. Honestly I was so miserable with the head pain and fogginess from the brain swelling/radiation necrosis it was all kind of a blur and I wasn’t supposed to drive anyway so I mostly trusted my dogs to keep me out of trouble. My first service dog was exceptionally good at taking charge and getting me to a safe spot when he alerted for neurofatigue, which made my visual issues worse.
If you have access to a neuro ophthalmologist it might be worth a consultation. They specialize in visual issues and eye problems that are primarily from a brain issue/problem rather than vision problems from the eyeball issues that a regular ophthalmologist treats.
He had me do some vision therapy that helped quite a bit with my balance. He was also one of the few doctors on my team with any service dog experience since several of his patients had guide dogs. My mobility/medical alert dogs have different tasks and training than guide dogs for the blind but he made several extremely helpful suggestions for their task training that really improved my ability to walk and balance.
Update from me. Just off the phone with my radiologist. He approved the SRS treatment as did my neurosurgeon.
Volume of my AVM is 9.5cc so treatment volume will be about 15cc. Will be 1 single SRS session of no more than 1 hour. Im surprise how much better this little bot of extra info made me. Knowledge is power, so more is better.
Now just waiting for the treatement date and cross my fingers for no vision impacts or necrosis.
Excellent! I do hear of a bunch of people in Northern Ireland travelling to Sheffield for radiotherapy (I’m sure the Christie in Manchester also has radiotherapy equipment) so it’s good to know you’ve got good facilities over the border in Dublin.