Has anyone had their AVM "cured"?

Has anyone, especially those with a more complex or severe or larger AVM been “cured”, to a point where you haven’t had any more growth and haven’t required any more treatment? The thought that this is something that I will be battling my entire life fills me with a very deep sense of dread and hopelessness like nothing else.

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I think you’ll get the closest answer from the other @PelvicAndUterine members.

The impression I get is that larger AVMs, those in extremities and those in the pelvis are much less easy to get on top of. I get this impression from reading the many stories in this forum. While it is also true that a lot of brain AVM people have an ongoing battle, it seems to me to be often more successful than in other places. My own personal theory on this is that something locked inside your skull is very well protected. Something outside your skull is subject to a lot of movement, maybe bumps and bangs and all of the usual stuff of life.

So my reading of things round here is that you seem more likely to spend most of your life dealing with it. I’d love you to have a read around, maybe keep a tally, and prove me wrong but this is how I feel about it. (I can’t statistically justify my words.)

If it helps (and I’m bothered that I may not have helped much by saying this so far) I have the greatest respect for everyone afflicted by their AVM long term.

At the moment, I seem to have done very well with mine and I’m conscious that might last or it might not. At the moment, it seems to be good. I’m 6½ years post embolisation of a brain DAVF.

This forum is really for you, not me. You’re the survivor. It’s tough. Physically and mentally and that’s what this place is for, really, the people who are in a tough place to stand together and be able to support each other. You and everyone else here who is fighting to do the best they can get the highest respect from me. I think you’re all doing great, even if you’re struggling.

I hope some others will chip in. And even if they stay a bit quiet, I’ll send a virtual hug or handshake from me.

Lots of love,

Richard

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Thank you for your kind words. I guess, we should all remember to not give up hope, no matter how hopeless it may seem or how difficult it may be at times. Who knows, maybe in our lifetimes there will be an actual cure for AVMs. I sure hope so.

That would be a great thing. You’re very young: I guess there’s a better chance of changes happening in the right direction than for someone older like me.

My grandfather suffered with brain haemorrhages from about the age of 29. Having had an AVM diagnosis myself made me wonder if there is a familial connection there but my neuro poo pooed the idea.

However, my grandfather was born in 1893. He was 29 in 1922, having survived the first world war. There wasn’t the technology to even look at what was going on in his head back in 1922, never mind do anything about it and many men came back from the war with unusual health troubles. He died aged 60, having had massive haemorrhages and nosebleeds for years, his wife keeping the household of four going on a post room lady’s wage and by taking in lodgers. He didn’t stand a chance.

We have to have a better outlook for the future. I’ve had an endovascular embolisation to block off a shunt in my brain. I feel in so different a place from my grandfather.

Be positive.

I have seen your other post. I do hope some US folk might help you find a way to get insurance coverage. It really is an amazing thing to me that health coverage is not socialised in the US. Are there windows in which you can apply for social healthcare cover? Does it cover the sort of thing you need? (I’m splitting the conversation between two threads :roll_eyes: : answer in the other thread maybe). I’m sure that’s the main thing you need to get fixed is your health cover.

Hang in there: remember, you’re the survivor more than me.

Richard

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So far, everything I have looked into I don’t qualify for, since I don’t have an income. Tenncare, which is the government insurance people get until they turn 21 in Tennessee, I no longer qualify for, since I am 22. My only option for health insurance is by getting on disability benefits, which where I am, is a very lengthy process and you have to continuously fight it. I have been trying for over 2 years and keep getting denied. I will keep trying, since it is my only option. It really sucks, big time. If health care coverage wasn’t a concern, a good amount of my stress would be relieved. going through the embolizations has been hell enough on their own, but not knowing if I’ll even be able to continue getting treatment throughout my life scares the crap out of me. As I have mentioned in some of my first posts, in my case unfortunately, if I do not continue to embolize my AVM, eventually I will go into heart failure, and potentially lose the ability to use my leg.

Understood.

Pursuing disability is a long road from what I can see. I would definitely search out the stories on here about it. I get the impression that perseverance is required, multiple applications, a good doctor to support and maybe a good lawyer to support.

I’m sure there are stories in here that will help. Use the :mag: at the top of the page. Some stories will still have people active on here. Some will have people who are no longer active on here (and I know one person who has passed away) so you may not be able to ask many questions but I think there’s a reading resource there that you might mine.

Good luck!

Richard

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Dang

I’m no pro on AVM’s anywhere else in the body aside from the head

As far as insurance coverage in the US, it sucks bad. I just got very lucky that when I had my hemorrhage I was already on acchs

Only thing I can possibly think of is get a job with benefits if you’re still able

If not, I don’t know what else to recommend

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That’s something I have been trying to look into as well. Unfortunately where I live, most entry level jobs have really crappy insurance and wouldn’t cover embolizations. :frowning: also, I fear that because of the extensive amount of time I need to recover from the embolizations, I might have trouble sustaining a job anyhow. In the past when I’ve had my embolizations, I’m out of the game for like a week and a half to two weeks. It’s a tough situation and it really blows.

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I don’t know if it will be much help, but I picked up a great book on coping with chronic illness and the grief (and sadness) that long term conditions can bring.

It is called: healing your chronic illness grief - 100 practical ideas for living your best life

It is by Jaimie and Alan Wolfelt - both of whom also have chronic illness and conditions.

It isn’t specific to AVMs, but the authors clearly get what we go through With such conditions and it is fantastic to read and feel so seen. I would recommend it if you are struggling (I know I am and these tips really do help on a day to day basis.

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Aw thank you so much. The mental and emotional effects of my AVM have definitely been a huge unforseen struggle, so I really appreciate this.

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Hi, Moonglow, where is your AVM? It is a tough thing to get your head around, but it helps to know you’re not alone