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AVM Survivors Network

New Member - Still debating treatment!

#1

Hi I’m Mike, 3 years ago I was diagnosed with an AVM on my occipital Lobe and 2 un ruptured aneurysms. I have always been an aura migraine sufferer but this time the migraine mimicked a stroke! Got scanned then diagnosed. I’ve had a craniotomy to clip one aneurysm and the other coiled. Recovered really quickly. The AVM, well my specialist said if it gets removed I will definitely lose most of my eyesight. I’m an artist and graphic designer. Freaked out to put it mildly. Specialist said he couldn’t give me the odds of a rupture, could be tomorrow, could be when I’m 99. I’m in the UK and he couldn’t advise me either on wether to have the surgery or opt for ‘conservative treatment’. Well I opted for the latter, regular scans and I’m on Neurotonin and blood pressure tablets. Here’s the thing, I don’t know if I’m making the right decision.I feel really lost. Most days I don’t even think about it, but the ‘what ifs’ creep in every now and then. Anyone else opted not to have surgery? Am I crazy for not doing so! Appreciate any support.

#2

Hello Mike and welcome! Fantastic that you’re here with us, and you’ll find a ton of experience with all things AVM and a bunch of other stuff! I had a left temporal AVM discovered when it ruptured, and had Gamma Knife 6 months later due to risk associated to location. The location was fine, getting to it created the problem! My neuro didn’t tell me what to do but he honestly answered the question when I asked him if it was him what would he do? Made my decision much easier. I think quite a few folks will chime in here, lots have opted to not do surgery, or anything other than monitor for a variety of reasons. These things are so varied and any action requires consideration, and I consider action being to monitor only. Take Care, John.

#3

Hi Mike:

Welcome to the group. We are here to support and encourage you when you need it. Whatever decision you make, is the right one for you. All of us have had to decide which road to take on this AVM journey. I chose Gamma Knife because that was the only option to me. I honestly don’t know what I would chosen had I been given a choice. I am much better now, but I will never be the same and that’s okay with me. As long as I’m here … I’m good! Do your research, talk to your doctors or new doctors. The decision is yours and yours alone. Try a little P&P
(Prayer & Patience). It works for me. I wish you all the best in whatever direction you chose to go. Keep us posted.

Sharon D…

#4

We have waited nearly 7 months before deciding the treatment for my son’s large AVM that ruptured. We changed the country of treatment and recommended solution. He did 2 embolisations , maybe a 3rd one will follow but he he could continue his life as usual, no downsides have appeared and since he was extremely scared of surgery, it was the best for him and allowed him to finish his university studies with all his peers !

#5

Mike,

Welcome to the group! Crazy? No. If your neuro really thought it was more important to have the treatment, he or she would have sent you home to have a big think about the sight v AVM question but it sounds more like guaranteed to lose most of your sight v no guarantee as to when your AVM might do anything. So it sounds perfectly sensible to me to keep an eye on it.

There was a study back in 2007 to 2013 to try to properly evaluate the treatment of brain AVMs to determine whether outcomes were better by treatment or by leaving. It was called the ARUBA study. To some extent, it concluded against treatment but there is debate as to the basis of the trial and I would say a general belief in medicine that the interventions we have (craniotomy, embolisation, radiotherapy) do have a beneficial effect. So, take heart that it is not clear cut as to whether treatment is always effective.

There are several people here in a similar situation to you, where their AVM is too pervasive or complex or close to vital functions who’ve been told treatment is not an option, or who have similarly chosen not to treat. You are not alone.

Hope this helps,

Richard

#6

That is a choice that only you can make I had lost a good chunk of my peripheral vision after my AVM ruptured though there was a moderate chance I would go blind with the surgery to remove the AVM.
I wasn’t willing to deal with the what ifs if it ruptured again as I barely survived the first one so for me I couldn’t risk another rupture so I had to take the risk; it all depends on your probabilities of a rupture and how much risk you’re willing to take based on the information they give you.

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#7

Hi Mike, I’m almost two years post diagnosis of an unruptured AVM in my right frontal lobe. It’s located in the area that coordinates movement for my left side, especially my left leg. My neuro team recommends embolizations and a craniotomy although there is a risk of left side deficits and I may need lengthy rehab to learn to walk again and/or use my arm. And of course, there is a risk that I won’t walk or walk normally again.

I haven’t been able to bring myself to have the procedures or make a solid decision about when to do it. I’m independent and have always taken care of myself. I don’t want to be dependent on anyone, and I don’t want to give up the life I have worked so hard for to move a thousand miles to live with my parents.

Still the thought of rupture is with me everyday. I bought an emergency services button and am getting my end-of-life affairs in order. Even if I do live a long time, I don’t think I could bring anyone else on board with this so I will never have a spouse. I’m trying to live like it will be okay if I die tomorrow, but it’s hard. This is not a normal life. I’m looking for a therapist but it’s an impossible decision and I’m not sure they will be much help. I guess I want someone to help me know if I’m crazy too.

Thank you for posting. We are a rare bunch without common paths to follow. My thoughts are with you.

#8

believe me anybody with an AVM doesn’t have an easy path; when my AVM ruptured it caused 2 right frontal strokes. I still have some left sided numbness and my walk is a little wobbly. It took me almost 4 months to learn to walk again and even longer than that to learn to do arithmetic, read and write again and I truly miss my independence as I can no longer to drive due to the my vision loss but I’m happy to be alive and I got to walk my daughter down the aisle last month so I am thankful for what I do have because it could have been much much worse… again everybody has to make a decision that is best for them and what risks they’re willing to take.

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#9

:heart: fantastic! (word of the day!)

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