AVMs are torture

I don’t think people who are unaffected by AVMs realize how they flip an individuals world completely upside down and now every tiny little aspect of your life that you would have taken for granted before is now impacted. I miss my life before my diagnosis, before my symptoms started showing. I miss not even knowing what an AVM was. I miss that freedom. Not having to plan my entire life around this thing that is just wrecking my body. Not having the lingering knowledge in the back of my head that I will continue to deteriorate, that I will never get rid of this, that I can never go back to who I was before. I will never be the same again, and what my life could have been is gone. So much suffering and struggling on a daily basis, for something that can’t even be cured. I’m tired of the depression, and the anxiety, and the mental breakdowns. I’m tired of the only available hospital to get treatment from being over 3 and a half hours away from me. I hate not even having insurance to get treatment. I hate not having the finances or the familial support to cope with this better. I miss being able to sleep comfortably at night, or even just sit comfortably. I miss not being completely repulsed when I look at myself. I miss not having people stare at me because my body is so malformed. I miss not worrying about the fact that there’s a good chance of me going into heart failure at an early age and losing the ability to use my left leg as a result of my AVM. I don’t know what my future will look like. I don’t know if I will ever be able to be independent. I’m terrified that I might have to rely on a caregiver, when I don’t have anyone who could be that person for me. Everyday, I’m just constantly spiraling and losing myself in my misery. I know it’s not healthy to live like that but I can’t control it anymore. I’m suffering so much and have been since my diagnosis and I know the suffering will not end. Even if they came up with a miracle cure for AVMs, it won’t change the damage already done to me. I’m so tired and I’m in so much pain physically and emotionally and I feel so alone. There aren’t enough words in the dictionary to truly paint a picture of how I actually feel. And trying to talk to people who don’t have an AVM is somewhat useless. You just kinda get looked at like “yeah that sounds horrible, glad it’s not my problem.” Or at least, that’s been my experience anyways. I’ve been through so many traumatic and appealing things throughout my short life, it’s honestly never been easy for me, but having an AVM is hands down the worst possible thing I could have ever imagined living with. Knowing that I will have to keep treating this for the rest of my life only for it to keep getting worse, is unbearable. Not to mention, I don’t currently have the resources to keep getting treatment and don’t know if I will in the future either.

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I just want to say “I hear you” and under the circumstances, I think you’re doing brilliantly. If there’s a way to get yourself back into being able to get health cover, that feels like the thing you might be able to do to help yourself.

I feel myself to be in such a privileged position with a much smaller AVM that has been able to be successfully treated. I’m privileged because I’m not in your position. I don’t have your pain or experience to go by, so mostly I feel the need to shut up! But I hear you. Definitely.

Lots of love,

Richard

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Thank you. It just helps to have people to listen. :heart:
I’m trying everything I can to figure out a way to get treatment but unfortunately in my state it seems like it’s nearly impossible. Not to mention that the surgeries might continue to make me worse, which scares me just as much as not treating my AVM does. The three embolizations I have already had have caused permanent sciatic nerve damage, and I believe my doctor said future embolizations will make it worse which could potentially caused my muscles to atrophy as a result of the continued nerve damage so then i would still be in a situation where i wouldn’t be able to walk. But not treating it will certainly leave me unable to walk. It’s the worst catch 22, and I’m constantly dreading the future and the uncertainty it holds. I really, desperately wish there was a more effective treatment/ cure for AVMs. But from what I gather from my doctor’s, AVMs, at least, ones like mine, are ridiculously difficult to treat, it seems as if they are very resistant to treatment and just really want to fight to make things as hard as possible for the person who has one. I don’t know if I should even bother hoping for a cure or a better treatment in my life time. It feels like a pipe dream. I want to have hope but due to all of my life experiences and constant hardships,.I’m naturally a very pessimistic person.

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Dear @moonglow500
I hear you. With my 5 dural fistulae that have made a reappearance in various shapes and forms and a (thankfully now-ex) neurosurgeon who managed to convince me that recurrence was so rare (err, no it isn’t) that he could not possibly be at fault, I have the regular feeling of “no, I never signed up to this life” after having worked so hard to get through my studies with the rosy glow of a wonderful, flourishing career to follow (well, no, that didn’t quite happen but my peers seem to be well-respected in their respective fields of work).

I would say though, that you express yourself with incredible honesty about how you’re feeling and there is such strength and power in your words. I hope that doesn’t sound ‘back to front’. I know that I have my blackest days when I feel that I have no place in ‘normal society’. I actually now listen to a podcast in the UK that is all about disability news and mental health and the presenters are themselves disabled. There is an authenticity, energy and drive about how these people talk on this podcast and I do not feel alone, or not as alone as I felt a few moments ago. Tons of apologies if I am really barking up the wrong tree but it just got me wondering whether there might be some kind of thing like that near to where you live, and whether you could submit written or audio articles about your experiences with AVMs (avoiding all the scary social media trolls!). Perhaps there is a local newspaper or forum?
Thinking very best wishes,
talloak

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Thank you for your suggestion. It is definitely something that I could look into.

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Where is your AVM located ? How old are you ? I still have 25% of my avm in my neck c-5. I’m 58 years old. I had two bleeds one at age 22 then 30. I was almost paralyzed during embolization. I survived. I remember praying to God please let me live to 47 so I can see my two daughters grow up. The second bleed hurt so bad I thought I was having a heart attack. I fell to the floor and felt paralyzed, went to hospital via ambulance. The doctor sent me home saying I had a pinched nerve. I said no way , how can this be a pinched nerve I can’t stand I am in terrible pain. We discovered the AVM with a different doctor due to a car accident a couple years later. I am living proof that you can have a great life. I have a blessed life. I have some nerve damage to my left arm , used to have back issues from the cyber knife radiator. I am retired now , I go to the gym 5 days a week. I stopped working out for years because I thought I would bleed and die or be paralyzed. I don’t know if I survive another bleed now. But I am thankful for the extra years. Don’t let this bring you down , stay positive. Have faith. I can go on and on but if you have any questions or concerns , feel free to ask.

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I hear you too, and I think your are admirable. I admire your strength and endurance. I think the difficultly you have getting medical treatment really sucks, and is very unfair. For all that my AVM has upturned my life, I am lucky that I live in a country with an excellent public health system. I’m not sure I would have coped half as well as you, if I had been fighting to just to get care.

Stick with life. Try to hang on to hope. Remember hope is a scale, so you can hope for small things. I’ve found in recent times, that small hopes bring joy because they are more likely come true. I try to watch the parrots outside my house start their day and look at the sky every morning. I’ve also found listening to history and science podcasts helps because they are full of new ideas - I recommend Alan Alda’s podcast as a great way to distract yourself.

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I’m 22, my entire left butt cheek, upper-mid thigh, and partially through my pelvis. Also have sciatic nerve damage since my sciatic nerve runs through my AVM and the treatments have made said nerve damage worse, which my doctor says could lead my leg muscles to atrophy, and me unable to walk, but if I don’t treat it, I will be in the same boat, because all of the excess blood flow will make my leg too weak to walk on. Also will go into heart failure if I don’t treat it but I don’t have health insurance or finances to treat it so I’m very SOL atm.

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Thank you. Distraction is definently the only useful method of coping for me.

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Can’t your parents put you on their insurance ? You can be on it till you reach 26. Have you looked into cyber knife radiation ? Takes theee years for it to work but non evasive.

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Unfortunately the only available treatment for my AVM is embolization. My dad died long before I was diagnosed and my mother doesn’t have any health insurance or a job for that matter, so I don’t have anyone who could help me get treatment. I don’t work myself, and I don’t qualify for any financial aid programs in my state. I’ve been trying to get on disability insurance since my diagnosis but I keep getting denied, and where I live, disability insurance is the only way to get full health care coverage. Working a regular entry level job and getting their insurance would barely cover a visit for a head cold unfortunately.

Have you tried healthcare.gov. ? Do you have a doctor in mind to do the surgery ? They have a dept that will help you or guide you in the right direction and get assistance. The hospital will work with you I know this. You have to get this done. Like I said I was 22 years when I got my first bleed. The older you get the harder it gets and caused much more pain.

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Yeah, I’ve looked into healthcare.gov, I don’t qualify because I don’t have an income. There is only one hospital in my state who is able to treat my AVM, and I’ve been working with the surgeon ever since I lost my insurance. He’s been trying to help me get on disability benefits, because I don’t qualify for anything else, but I keep getting denied disability benefits as well.

Dear Moonglow500,
I am so sorrowful for your painful and limiting state of health. I had survived the rupture of a cerebellar AVM 31 years ago and recovery from the craniotomy was tough. Like you have expressed, I found my world upside down. Lost my nursing career, no income… lost my identity. But, being as young as you are, with a pelvic AVM and all the challenges you face is overwhelming for me to even think of.

I know you say that you’ve been denied disability status. I don’t know how many times you have attempted, but keep at it. I was told that only a few, specific diagnoses receive acceptance on the first attempt. My neurosurgeon volunteered to fill out the initial medical/surgical paperwork. He knew what kinds of data the reviewers were looking for. You’ve probably done this, but be very specific when detailing the impact your condition has on your day-to -day life, your ADLs, activities of daily life.

Having access to medical care, having a doctor who cares about you, would give you a sense of some control. If I hear you correctly, you have very little control and sense of personhood.

Wishing you all the best

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I thought I remembered your insurance dilemma - that just plain out F*****g sucks - let alone the location of this thing in your body

Sucks hearing about people’s cases like this & not being able to help at all

Kinda y I stay off here mostly

Real sorry to hear lady

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Thank you

Thank you.

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WOW !!
Well said my friend, very touching, haven’t been on site for a long while and you’ve really hit it, obviously enough to get me to reply, please just know your not alone, I am a very long to, don’t want to say survivor but I’m at 36+ years post, left temporal craniotomy, so I’m old school, no such thing as todays stuff, gamma knife, ect, all I can say is your 100% right and I have lived this a long time, recently turned 60, and I’m still here, for what it’s worth, Accept what you can do and what you can’t, be good to yourself and try not to let others effect you so much, because like you said, the only people who understand are right here waiting for you, I don’t even know you and I love you, blessings always, reach out to Richard, he has really help me through some rough time, god bless you. Andrew

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Thank you :heart:

Completely unrelated to AVMs…but I had an opportunity to travel to Memphis last October. A friend of mine and I drove down from Manitoba in two days, spent 3 days in Memphis. We then toured Arkansas and Nebraska before blasting back north through South Dakota and ND, which are very familiar! Absolutely beautiful and met some great folks! Who would have thought we would tour a WW2 submarine, the Razorback, in Little Rock Arkansas! It reminded me again to keep my eyes open, there is a lot to see and experience. Take Care, John.