Tired of it

How do you guys cope with an AVM. I get tired of having to deal with it. Mine dose not cause a lot of long term symptoms but I do worry about it growing often or needing further treatment for it because it’s been stable for a while. I have an MRI coming up in October so I’ll know how it’s looking then but until then it’s tough wondering and having no way of knowing for sure what’s going to happen.

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Hi - personally, it’s difficult

And, I’m “100%” occluded from my one shot kill embolization

I don’t have “severe” symptoms - but, I’m a regular at Barrow Neurological. It’s been a tad over three years since my rupture & embolization procedure. I’ve been back, I’d say about 6-10x for related symptoms. Last month was due to brain swelling - most likely caused by, stress and/or work

Each one of “us” are quite different - try your best, and follow through with your neurologist’s advice - - - hopefully you have insurance

Wish u the best

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My AVM is no longer thanks to gamma knife, but I do have a scar on my brain. This caused a seizure in January of this year, and am now on medication. Lately I’ve been having some more head aches, and while no more seizures, the fear exists. So while different, I think the fear of the unknown is similar. I also think it is quite normal among us. Every time something in my head feels different I pause. I wish I could shut it off but can’t, so I need to recognize it, think about it, and file it away until next time. Seems to work for me, but took a lot of practice. Take Care, John.

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Hi.

The way I look upon it is a bit like tinnitus. If I listen to the tinnitus, it gets louder.

If I worry about all of the small things that seem a bit weird post op, I could spiral out of control. So I’ve not “concentrated” on doing this but I worried about not being 100% fixed after my embolisation and I worried about it for about 1½ to 2 years. My doctor told me “I can’t see anything amiss, so it must just be that you need to get used to the new pressures in your head.” Finally, I accepted that and just decided to look forwards to all of the rest of life (and all of the other dangers that can befall anyone) and actually, I think it’s working well for me.

So to the extent you can, put it all behind you. It’s fixed. Sure, it might be something that develops and shows itself again but then all of life’s other challenges run a similar chance of appearing and challenging us.

This is how I’m approaching it, anyway. My 1½-2 years of doubt were 2017-2018, maybe sneaking a bit into 2019. Since then, I’m pretty good. I still spend time here, so it isn’t as though AVMs are ruled out of my life: I’m still here talking about my experience with lots of people: but that isn’t denting my approach to put my AVM behind me.

I’m quite sure that it differs as to how easy it is to put these experiences behind us but if you can, I think it’s a good plan.

Lots of love,

Richard

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I had to do a double take because I could have written this. I’ve been wondering recently if I will ever not have to think about having my AVM. There is a huge weight always dragging me. I too have an upcoming MRI to see how things are post CK but then another year to wait before angiogram. All I can say is just keep breathing. And then breath some more.

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I am a 20-year survivor of a very aggressive cancer and a 10-year survivor of a cerebral AVM. Both life-threatening conditions are in my rear-view mirror now. Praise God. However, for each, there were years of uncertainty and high anxiety. I remember the dark days of fear quite vividly. I did not ask for these experiences, but I give thanks for them, for they taught me many invaluable lessons.

I have learned to live in the moment, to treasure each and every day, to not surrender the quality of my life to disabling fear. I have learned to learned to count my blessings, not my troubles. When I give thanks, the result is always an even greater blessing, which is renewed faith. Most importantly, I have learned to trust God. When I tell Him that I cannot do life in my own strength and I ask Him for His, He always abides.

Richard is right. No matter who you are, life is filled with risk and peril. At any time, I could be injured or killed by any number of things. The following scripture is perhaps the most powerful one that I turn to, especially in anxious times. I will forever keep it in my heart as a source of strength, comfort, reassurance, and peace. It has blessed me enormously, even on my darkest days when I was tempted to believe that all hope is lost. May it do the same for you. Amen :heart:

“Because he loves me,” says the LORD, “I will rescue him; I will protect him, for he acknowledges my name.” Psalm 91:14

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Hello, I feel what you are saying, not only is it a roller coaster ride of emotions but the unknown future is difficult. I have a complicated nest, my AVM has been deemed too risky for ANY intervention. I just had my third appointment to confirm next steps as I was reluctant to accept previous doctors strong suggestion that GK would cause more harm than good due to the complications that will most likely occur from trying to fix my particular AVM. I have a brain stem AVM and am doing well in there opinion without intervention. I have finally accepted Doctors view, but it took three opinions, I am a bit stubborn.

For me first steps are accepting there is no help, this is hard to accept. I am working through acceptance and its hard. However I am 54 years old, lead a good life and have lived with my AVM all of my life. Over the years, starting in my 20’s I had weird symptoms that would come and go. Often causing sudden hearing loss or vision issues. When I was younger they would fix themselves as fast as they came on. It was a difficult journey of doctor after doctor and test after test. In 2020 I lost my hearing completely in one ear, and it has not returned. This lead to finally having a Cranial Angiogram that confirmed my complicated nest. It took me about 3 months to accept it and it fueled me to go live my best life as I was made aware they couldn’t fix it and therefor I focused on making sure I was living a life NOW AND not putting dreams off for the future. But I have continued to have complications that during this stage of life have seemingly increased in frequency and severity. It makes me sad, sad to my bones at times, but the one single thought I try hard to hold on to is the fact that I have had this my entire life and for the most part it hasn’t stopped me from living a good life.

I am a competitive person, I like winning, and I have approached the fear with a winning attitude. If fear stops me from living a good life then fear wins. I can not control my AVM, besides living a healthy life, so I channel my energy on fighting the fear. If and when fear takes over, I often give in for a short time, allow myself to walk in the fear but limit it to a day. Then I start the next day determined not to allow the thoughts and fears to rule my mind. This is easier said than done, but for every time I manage to park the fear and then have a good day I realize its working.

The single most important thought I hold on to that helps me is, I have lived many many many more days where my AVM didn’t affect me compared to the few days over my lifetime that it has caused me issues. And second thought I hold on to, is a belief that thinking and feeling positive helps me to remain healthy and it is the ONLY intervention I have to combat my AVM.

By no means is this easy, this past summer I spent 10 days in hospital learning to walk again and manage my life with impaired vision, but I am riding a bike again and playing tennis and these two activities seemed highly unlikely weeks ago. So they feel like gifts now, I have always loved riding my bike, but now when I get on my bike I smile from ear to ear as I feel incredibly grateful I am able to ride again.

The other thing that brings me peace of mind is having a good legal directive in place. Here in BC, Canada its called a Representative agreement section 9, enabling my appointed person (in my case my husband) with the ability to plan on my behalf for health and personal care plans should I not be able to act on my own behalf. I am fortunate my husband has a very clear understanding of my wishes and I feel fortunate to have such a strong and logical man by my side should the time come. This agreement has brought me much comfort.
Take care, Lisa

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I’ve just learned to deal with it as part of my life. Everyone has some kind of health issue…this is mine. I was 64 before it was discovered and used to brag that I never spend a day in the hospital before then. Now I’m a member of an even more exclusive club of AVM survivors. Every time I come to this website I realize how lucky I am that I live with this thing everyday, but it does not control me and who I am. The fellow survivors here (like lisa1969, DickD and Oak and many others) also inspire me to live a life that is full. I am truly blessed that I can function as I did before, with a few restrictions and very few side-effects. I tend to push the envelope and when I go too far or do too much, and that little bugger will send a signal to stop, pause and take a deep breath as a reminder that it is still there.

It’s been six years since the AVM was discovered and three years since I had a stroke and went under the Gamma Knife. My AVM has been reduced but not fully annihilated. So I’m heading back for an angiogram to decide where to go next. I won’t let this thing win.

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I have days where I desperately want to have a pre-craniotomy operation smooth, scar-free head again. Aside from the behaviour of my clinical team that is now being investigated by the Government Health Ombudsman, I think that means that I just want to go back to being in blissful ignorance of how my brain functions (surely it just does its job as it’s meant to do, doesn’t it?!) and that I can push myself physically, emotionally, academically…arghh, keep going no matter what… because I’m in control of what goes on in my head, surely?

I then realise how until now, I have treated my brain and my mind as a “black box” that I can fill with instructions and plans and expect a result to be processed. The shock of my multiple dural fistulae diagnosis has taught me otherwise, that my brain is a part of my whole body and it needs to be cared for, understood and supported just like any other part of my body. This isn’t helped by the fear and taboo that pretty much most other people have in talking about what’s going on in the brain. This means that for me at least, I am exceptionally lonely but I value the knowledge that I have gained so very highly and find myself at times incredulous that I was completely unaware of it before! Thank you, @Longtermsurvivor2457 for this conversation because I feel very much more together with everybody.

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It’s definitely not easy but you need to try & do your best… it’s not healthy to have a lifestyle living in fear of something that may or may not happen… all you can do is live with it & do your best to adjust & live a lifestyle to suit you best… it’s easier said than done but time heals… God bless!

This is something I have been struggling with since I got diagnosed four years ago. My AVM completely changed my life for the worse, it has affected me in so many ways, and in fact, it has gotten worse with each treatment, and I still need several more that I can’t get because I don’t have health insurance, and I will have to get treatments throughout my life. My AVM is severe, I can’t even sit comfortably, or lay down comfortably. I can’t sit in a bath. Walking for extended periods of time hurts. It’s very noticable and I get a lot of weird looks. I can barely wear pants and I can’t even wear traditional underwear because of the size of it. Every tiny aspect of my life has been impacted negatively because of it, and I feel it constantly, everyday. It never gets better, and it never goes away, for me anyways. Always throbbing, aching, sometimes burning, and it’s so, so heavy. I’m 22, but I still feel like a 16 year old girl, mentally. I want to bounce and jump around and dance and be goofy and I can’t. I want to go roller skating like I did as a teen, but I can’t. I want to wear pretty dresses and heels but I can’t. I can’t do anything that might risk me falling or otherwise damaging my AVM. I can’t wear cute clothes, or if I do, I’m so insecure and I get stared at a lot because it just looks like I’m walking around with a melon attached to my body. There’s so many little things my AVM has affected, and I’m almost constantly thinking about it and I’m almost constantly miserable because of it. It’s like having a demon that follows you everywhere and torments you that you can’t get rid of. Difficult doesn’t been begin to describe it.