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AVM Survivors Network

Struggling

#1

I’m new on here - I’ve read so many of the stories on here. Thank you for all of you…truly.
So with out sounding like a broken record bc I believe our treatment is so limited that we know what to expect. However, no matter how many times I have treatment- this AVM doesn’t stop growing :cry:
My main struggle is to convey how hard and in pain I am in- with out feeling like I’m some victim and giving in to the disease. I know I have to have faith that I will get thru this. Let’s face it, we have NO choice. But God this is so hard. I’m so discouraged and doing my best to keep depression away. I just feel really alone. Really tired and most over just being sick. I loved my life pre AVM… I just can’t seem to get well enough to build anything. Am I crazy or does anyone else go thru this?

#2

Hi,

You are definitely not alone. You are definitely not the only one finding it hard. I am sure others in a similar situation will add their thoughts or experience.

It does feel to me as though people with “extremity” AVMs, or AVMs almost anywhere outside the head, have the worst time of it because they seem to be so much more difficult to get under control. I wonder to myself that brain AVMs might do better after treatment / treatment works for longer due to fewer moving parts. With something outside the skull, the movement of things means an embolisation, for example, lasts not so well. I don’t know – I’m not a doctor – but that’s how it seems to me.

I think your other challenge is perhaps to let go of the “old” you. Grieve about losing the old you, yes, but find a way to move on. It feels a bit harsh saying this, as I have no direct experience but it is something I’ve seen others recommend. It may not help you physically to get rid of the pain but it would be good to help you find a way of getting past the more mental health aspects. I think it could be good to be honest with yourself about how big a deal losing the old you is, and be able to re-set your thoughts upon the world ahead rather than the world behind.

This is difficult stuff. Dont just do it alone. I would definitely seek out support – mental health / trauma / bereavement type support because I think it could help. Honest.

Well done for joining and posting. It’s great to chat with you.

Very best wishes

Richard

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#3

I had a craniotomy to remove an avm in my brain. Everything you have written is EXACTLY how I feel. It’s been a long tough battle, and just when I think I’ve “figured it out” I’m slammed by another emotional wave.
When I got the diagnosis I knew this would be hard, but I didn’t realize how hard the mental side of it would be. I agonized for months about seeing a mental health professional and spent hours online trying to find the right one. I finally just called a place near by and got sooo lucky. It’s probably the best thing I did for myself through all of this. If you do decide to see someone, just look for a person with trauma (because this is medical trauma) and grief expertise.

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#4

Welcome to our community, and you are certainly not alone! These things test our patience in so many ways, so often. I had a brain AVM that bled and altered the course of my life. I’m finding people with AVMs other than brain face a whole lot of challenges that I don’t understand. Many folks on here battle these things and are examples of incredibly strong and courageous people, that I admire. With most will come times of questioning ourselves, anger, resentment and the why me syndrome. I’ve been there for all of these emotions. We have different mechanisms to battle through, it took me some time to find my way, but I did. This site helped me so much, just the understanding that I wasn’t “fine” and that I appreciated the input and experience to know I could carry on.

I don’t profess to know much about AVMs outside the head, I haven’t experienced that. I do know some of the unique challenges from folks on this site and am sure you get some first hand experience passed along. I again want to welcome you and let you know we are here for you. We lean on each other regularly! Take Care, John.

#5

@LeftarmupperchestAVM Welcome to the group- Glad you found it.
It is totally normal to freak out and it’s impossible for others to understand what it’s like.
I had a big freak out on here when I first found the group and everyone was great .
I had already been through a rare stroke due to 5 blood clots and had been in a coma , paralyzed , brain damaged and then 6 months later a DAVF found for bonus points.
Then I had another small stroke during my first embolism.
Since then I have been diagnosed with Centralized Pain Syndrome and Thoracic outlet syndrome but I try to stay positive - I can now walk, talk feed myself.
Each day I am in pain but I really don’t talk about it to my friends and family because nobody really understands
I try to stay busy but I listen to my body.
I do see a pain neurologist and pain physio
Also Barrow in Arizona does second opinions and Dr Lawton is considered the best in the USA
Hugs
Angela

#6

My AVM was asymptomatic and was only discovered after a car accident (read my story in my profile if you want to be entertained). Best part is the first doctors missed it on the MRI. I took my images to Barrow Neurological Institute here in Phoenix, AZ and just down the street from my house. They found it. Lucky me!

I decided to have what was technically elective surgery to remove the AVM. This was in June 1993. No noticeable permanent deficits and life is good.

Get another opinion even if you have to pay out-of-pocket like I did. Was the best money I ever spent.

It’s very frightening. But all of us here have been where you are right now. Reach out. We’re here to help. There’s long healthy life after AVM.

Bill

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#7

Hi Leftarmupperchest: Welcome to the AVM-ers Group. We are a great source of support and encouragement. This is the place where you can vent all your frustrations and maybe even cuss a little bit if needed. We can all relate to your frustrations. The doctor’s can make you crazy; your relatives just don’t understand it; and your friends may start to shy away from you because they don’t know what to say or do with the new you. Yes, you are different. The old you is gone and all you can do now is to try and embrace the “new” you. And trust me, that takes a long, long time. Therapy helped me, but I still have the occasional 15-minute pity party where I’m mourning the old me. To be truthful, the new me is nicer than the old me in a lot of ways. I wish you the best of luck on your journey. And now, I’ll give you my recipe for dealing with all the challenges this disease brings … P&P (Prayer & Patience). Just keep in mind that “we get it … they don’t”.

Sharon D…

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#8

Angela, a BNI Brethren! I live in the Roosevelt Historic District and keep in contact with my surgeon, Dr Zabramski after all these years. He retired in August 2018. Yes Dr. Lawton is the absolute best. No complaints when he was handed the baton by Dr. Spetzler.

BNI’s second opinion which discovered my AVM and changed the trajectory of my life is the facet of my life that I am grateful for every waking moment.

I wish this forum was around in the early 90s when I had my AVM. I had to go to the library on McDowell to research via card catalog to help me figure out what to do. Plus I was doing it all alone. Didn’t tell anyone for quite a while. Isn’t it great to have this resource now to assist others!

Stay positive. What else is there?

Bill

#9

I’m so sorry you are going through this LeftarmupperchestAVM. Unfortunately for us AVMs are pesky blighters and if treatment doesn’t obliterate them completely they recruit new vessels and regrow. I feel so bad that no one is understanding how much pain you are in. But please try not to feel alone. I realise its not ever so much, but we are all here for you. x

#10

So sorry your having to deal with this crap. My AVM is cerebellar, so I don’t have any direct experience with extremities either.

One experience I can draw on though is that I had cancer when I was younger, and as awful as the physical experience was (and is), the emotional part of it was just as hard. It was pretty much impossible to explain to my healthy office mates in grad school that the reason I wasn’t joining the department basketball games was because I could hardly make it up the stairs to the second floor - walking to the gym sounded like hiking to the moon as far as I was concerned. Not to mention my armpits cracked open and bled every time I forgot and lifted my arms, kind of a problem when writing on the board. It wasn’t that they were callous, they just didn’t have a frame of reference for what I was experiencing.

I didn’t meet another Hodgkin survivor until twelve or thirteen years later. The internet is such an amazing resource for connecting people.

Just last night I was chatting with some other survivor internet folk and we were talking about how barbaric those treatments in the 1980s were, compared to today. Not that any of us have regrets - it’s data garnered from us, as well as technological changes, that have made better and less destructive treatments possible.

And technology does change. I was in a dental study during treatment and got to hear over and over that I could never, ever have braces again because the radiated bone on my lower jaw would have problems healing. But I couldn’t wear my retainer either because my mouth was so dry and sore from the radiation, so my teeth quickly moved back to their old crowded mess. Then, a couple of years ago, I got the sign off to get trays instead of old-fashioned wire braces, since the gradual constant pressure instead of the periodic tightenings would be okay for me. I call my dentist the next day. And just a couple of days ago, I finished up and got my new retainers and my teeth look great and are so much more functional! I never thought I’d be able to whistle again but that’s my new goal, lol.

If my AVM had been noticed on the brain scans I had in 2005, what would they have done? The embolization I had in 2015 wasn’t available then. Things are changing, getting better all the time. My heart’s electrical system held out long enough for me to get an MRI compatible pacemaker, which came in pretty darn handy six months later when I had the stroke.

My point is that there’s no diminishing what you are dealing with. It’s discouraging and it’s lonely. But that doesn’t mean you should have to assume it will be that way forever.

I really, really hope that things get better for you soon.

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#11

Hello LeftarmupperchestAVM) — LAUC (loss : )

I totally am in the same plays trying to accept that I’m not gonna get better.
I’ve not been on AVM network for like 5 years. I am not . the best writer, so anyway, I bumped in on my email and just read your letter.
I am in the same exact life span. Multiple health isues–, weekness, physical, emotional, mental pain. I’m alone too, running out of income… This, I believe, is a spiritual connection and randomly ran into your feelings! Many doctors–many appointments–many issues–
NO results or diagnoses, no comfort.
I feel like this post is free therapy!!

#12

Three points:

  1. You are not alone. This sucks.
  2. My therapist and I have spent a huge amount of time dealing with the grief of losing the “old me.” Dealing is a current time word. I am not done with this. As he describes it - sometimes you stand on the balance beam, sometimes you slide off into the mud, sometimes you step off on the green grass. But either way, you keep walking. Give yourself time to grieve, don’t beat yourself up for having a bad day.
  3. There is no time line. Let me repeat, there is no time line - at least not one set by anyone other than you.

Hang in there and come by and tell us how you’re really doing. We care, because we are there too.

TJ

P.S. And now I’m going to go get my pharmaceuticals so that my head quiets down and the headache settles down enough that I can get to sleep at a decent hour…