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AVM Survivors Network

Tykes69ers

#1

Hi I got rt occipital avm since I was young now im 36yo, since its stage 3 or 4 gamma knife was not applicable. According to my first neurosurgeon it position said it’s dangerous to undergo surgery, I had my latest ct scan and mri and everything is still the same no new growth and expansion was seen and bleeding and I got 2nd opinion with another neurosurgeon and he said it’s safe to have elective surgery but my family and my wife don’t want it. We are both ot nurses even me handles cases like this. The risk of elective and emergency surgery for avm is just the same. We decided that to have that procedure when if really needed. Now what im having is just a medicine Trilleptal for seizure and it has been 3yrs I don’t have attack. Im just protecting my head literally not to bump anywhere or being hit and also not to make my BP elevated because that is one of the causes of rapture. The one thing that affects me is I have hemianopia in my right eye because of my left avm, I still have 20/20 vision but nearly half of my right eye is blurred not totally dark blind if I cover my left eye i can still see in my right eye but it looks like im a right sided blind view, to see my right side while walking or running even driving i need to to my head to make sure im not hitting bumping o watching for an incoming.
Thanks guys for letting me to share my condition and I got some questions as well.
What is the latest treatment for avm?
Is there a chance to reverse or treat hemianopia??
Is ginkobiliba, fish oil, vit B complex supplement safe for us??
Is avm a hereditary or genetic problem?
I encountered patients in my workplace who had surgery then after few years it grows again even at the site of their brain.

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#2

I had a rupture on the border of my right occipital and parietal lobe I have homonymous hemianopsia so I can’t see to the left or down out of both eyes; with the location of the brain damage I have from the rupture it’s not reversible my only advice would be an elective surgery is controllable rather than a rupture that you don’t know what the outcome could be so make sure you get all the information you can and make the best decision you can.

#3

I have to agree. Ruptured AVMs can create more permanent damage from pressure/ bleeding. I lost upper right quad vision when my AVM ruptured on the left temporal as well as speech issues. Just make sure you know all risks to make the best and safest choice.

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#4

Welcome Tykes! I was treated with Gamma Knife in 2016 after a bleed, presented less risk than the craniotomy for deficit. I had no idea I had an AVM until it bleed, and for me if I had a treatment option which ultimately I had two, I was taking it. I did not want to go through another bleed. If I had a second bleed while awaiting gamma knife to do its thing, I was clear to those who would be making decisions if I couldn’t, craniotomy. That was my circumstance, and we are all so different, with different risks and so many facts to consider based on our circumstances. I’ve met two other AVMers, one who has no options due to location and another who has had two bleeds and her choice was to stay the course. For her it was the best decision based on factors important to her and her family. I agree with Mike, make sure you have all the information you need.

In respect o supplements, I take a number including fish oil and B12, my neuro did not have any concern but it is always a good question to ask the Doc. Really glad you joined us and hope our input is helpful, and know you are supported! Take Care, John.

#5

Hey Tykes. I am with you on the hemaniopia thing. Mine onset only recently (past year or so) after progressive damage around my occipital lobe. The reason I chime in however was to provide info on the hereditary question as I have been researching that for my family. AVM HHT is hereditary AVM. www.curehht.org Ms. Marianne Clancy is President and may be able to refer you to a local treatment team.

However, not all AVM are hereditary so I definitely encourage you to consult with your doc to get the best plan of attack! We have been given this life for a reason. Press on and know there are many who are wishing for a full recovery for you! Grace and peace!

#6

HI there. I’m Lulu and I’m in the UK. My AVM is in my Cerebellum but otherwise I think I’m in quite a similar position to you. 20 years ago I was told my AVM could not be treated by surgery. It is far too deeply embedded. Medical opinion on my has not changed despite me being on my third neuro consultant. But recently they did start talking about gamma knife maybe being an option. They are going to look into this further. By my issue is that I suffer very little by way of daily deficits. Although I’m always aware that I have an AVM it doesn’t stop me working, driving, having a family etc. I don’t suffer headaches, epilepsy etc. Although I do have recurrent hydrocephalus and a shunt for it. To answer your questions I don’t think AVM treatment options have changed much. Its surgery, embolization or gamma knife. Your neurologist is best placed to advise on the best one for you. Not sure about hemianopia, sorry. I think all supplements are safe for us aren’t they - apart from blood thinning ones. I have certainly never been advised otherwise. I don’t think AVM is hereditary/genetic in most cases. And lastly AVMs can reform if they are not obliterated entirely. Whats left can recruit new vessels. Best wishes to you. x