Hi, I’m kind of venting here. And I think many can relate and maybe help each other. Today I got the results of my MRI yesterday-- broken back. When I was 14, AVM bleed, 2 craniotomies, seizures ever since from scar tissue. Car accident in August probably due to a seizure.
So now I have a fractured back that may be indirectly related to my AVM.
I’m not even going to go into the emotional/psychological effect of meds and traumas.
I know I have it good compared to lots of other people and I don’t want to ignore all of the good in my life.
I guess I’m just scared that this AVM and it’s offspring are going to follow me for the rest of my life. The logical thing is to just accept that and live a good life. It’s tough right now.
Thanks for listening, Greg
Hey Greg,
There is nothing wrong with venting, in fact, I recommend it. When we haven’t got an avenue to vent, all of that pressure can build and build and become very destructive. That’s not good for anybody. This is a safe place where you can vent and as ‘logical’ as it sounds ‘to just accept’, it just ain’t that simple sometimes.
My brain issues aren’t directly AVM related, but OMG, that ‘acceptance’ thing is on a sliding scale. Some days I can just get on with life, but then some days it all overwhelms me. My situation is going to follow me for the rest of my days, that’s for sure (sounds like it might be the cause for the end of my days according to the medicos). When they told me it would be ongoing, I sort of went blank. Drove to the beach, walked out to the end of the pier and it hit me like a tonne of bricks, I threw up. From there I decided I needed to deal with ‘Now’, not tomorrow, not next week, but now. I had to ‘try’ to keep it simple and try to deal with just one thing, the ‘Now’. If I let it, my mind can run away with itself at a million miles per second. And as for logical, forget that, my logic vanishes. I had all of those worst case scenarios playing over and over…
It doesn’t matter how good I have it compared to others. This is happening to me, not others and that makes it all VERY real and when it’s this real it’s not as simple as just move on, no matter what others may say. For me, I have to slow it right down and deal with ‘Now’ for myself
And yea, it is tough. If anybody tells you otherwise, they have NEVER been in this situation themselves.
Merl from the Modsupport Team
Greg, sorry to hear about your back, but like Merl says venting is good! I admire the way you are able to take such an objective view and I think a lot here understand when you say "AVM and its offspring…"I have a few of those things that are not the AVM but are because of the AVM, and every time I deal withe those situations it is frustrating and ticks me off. Many won’t realize the component of that connection in my irritability. I don’t know if that makes sense!
I have experienced a back injury in the past, certainly not as severe as yours, but it was debilitating for some time. I hope that is progressing for you, mine was a slow process to get healed up.
Take Care, John
Agreed, vent away! And, this is the place to do it. . . . Not many(if any) around us in real life can relate at all. But, here - well, apparently we have something fairly close to in common
Hey JD
That more than makes sense JD. It’s the reality many of us live with. I’ve lost count of how many times I’ve had people tell me I look like death warmed up. What they can see in a micron of what I’m trying to manage. They have no clue. I’ve given up trying to explain, usually I just apologize for looking bloody awful (as if I have any control of it all). On a bad day I might snap 'Yea I look like s*%&, but you want to have a look from this side…" I know I look awful, I don’t need to be told.
Hey Mike,
I am yet to hear of anybody having exactly the same neuro-journey and I think often that ‘fairly close’ is about as close as it gets. We see differing dr who have their own treatment, methods and processes. We have differing procedures, with differing technology, with vastly differing outcomes but we’ve all been ‘there’ and ‘there’ is a place that, thankfully, most never see. We, unfortunately, have been ‘there’, we have seen it, lived it, warts and all. That needs to be shared.
Family/Friends damn near drowned me in sympathy, but sympathy gets really old really quick. Empathy and understanding can only be truly comprehended by those who have lived it. You can’t get that from a book, it comes from a lived experience. Ben’s Friends gives us the opportunity to share those experiences. Turns out we have LOTS in common. I can’t remember how many ‘Yea, me too’s’ I’ve had.
This is all my personal opinion.
Merl from the Modsupport Team
Hi Merl, Thanks for the heartfelt response. I appreciate that deeply.
My goodness Pal, if I ever write a movie, you will write the screenplay. Not to be irreverent but that scene of you puking at the end of the pier is a true classic. (I’m really keeping my fingers crossed I can tease you a bit. Are people as touchy in Australia as they are in the U.S. lately?)
As usual your wisdom shines through. I have an aura that you could use a light hearted compliment right now. I hope you realize there is sincerity beneath my convivial manner.
“Acceptance is on a sliding scale.” I’m not Moses but I don’t know if truer words were ever spoken. And you’re right, my “acceptance” ability fluctuates daily and sometimes much more frequently. It’s not simple. And for me it’s never easy-- I’m inclined to shake my fist at the “deity/universe/karma” and do other stuff diametrically opposed to “acceptance.”
The other wise thing is that dealing with the “now” is the only possibility and, for me, the dream of peace and happiness.
Logic has very seldom managed to embrace me. I’m not sure Aussies are prone to resort to logic. (compliment) I’m hoping you are well and without suffering, Greg
It’s all good Greg and most Aussies can take (and give) a bit of flak. I think we’ve all got our sensitive types, who often react at the littlest things. I ain’t one of them 
You call it wisdom… hmmm, not sure I’d call it that 
. If there was a right way and a wrong way. I did it all the wrong way…repeatedly. The definition of stupidity is said to be ‘doing the same thing over and over, then expecting a differing result’. Lots of my advice comes from me (eventually) learning from my own stupidity.
For many years I used to teach and support people with disabilities living in their own homes. I’d walk up to the door and knock, from there I really had no clue of what I was walking into. If the client was having a good day, that’s great, but if they were having a bad day I had to deal with it. NOW. It couldn’t be planned for because you never knew. Sure, I had clients whose life was nothing but dramas and I was semi prepared for, but most days I had to manage and deal with ‘now’. I must admit I liked to try and plan ‘my’ time, but since all of this I can’t plan anything. To transfer those ‘Now’ skills for self was a very bitter pill to swallow. I hated it, I didn’t want to accept ‘THIS’. I fought against, that was a waste of time. Every time I thought ‘Ha, I got this thing beat’ it would up and bash me into submission. That taught me, I had to break things down to there basics and the most basic is ‘Now’ but it’s a route I wouldn’t recommend to anyone. I’m often saying 'Don’t do that ‘cos I did and this is what happened…’ Is that wisdom or stupidity? One man’s logic is another man’s crazy. It all depends on your perception
Merl from the Modsupport Team
Oh my…
I must say these exchanges above have been very seriously ‘heavy’ to read. Yet, I DID read them, knowing that behind the words were actual human beings whose experiences and suffering were/are very real. Each of us searches for means to cope with what has been thrown in our lap. And, it isn’t easy and never will be, from my point of view.
Thank you all for contributing to my growth in my post-AVM journey. (Even if it has been almost 30 years!) Many thanks again…
Lifeisgood (most days!)
This is exactly it!
Everything you say is 
(Simply pressing once on the post isn’t enough!)
Hi Greg!
There’s a lot of good advice in these replies and I’d like to add a few things which may be helpful for you to think about. Most of us were living “ordinary” lives before events happened due to AVMs that were life-changing. I struggled for a very long time to come to terms with it. I’ve been left with brain damage that affects cognitive function, behaviour and balance, I have seizures etc. I believe the mistake I made, as many others may have, was to try to rehabilitate myself to get back to my “normal” life. After finally accepting that it would affect me for the rest of my life, I realised that the normal life I had didn’t really make me happy. I was stressed, worried about work, worried about schedules, and worried about my kids. I’ve lost and regained my driving license so many times I’ve stopped worrying about it. So, I chose to strive to rehabilitate myself to be able to live a life that was my ideal kind of life. Pick the things you could do previously that were important to you and make those bits your goal, then add things you would have wished you had the time for, hobbies, places you’ve always wanted to see, etc. Even though the AVMs have changed us, we’re in a rare position where we don’t have to return to the ruts. We can pick and choose which bits of life are truly fulfilling for us and decide that that’s where we’re heading. Choose your perfect life and just make a few adjustments here and there so you can live it to your fullest. Sorry if that’s a long ramble but I hope it gives you some positive motivation when you’re having a really down day.
Hi Sarah, Thanks for your words. They mean a lot to me. It’s as if you were looking into my “soul.” I’ve wanted to pile every bit of work, worries, responsibilities, recreation… that I had in the past. Of course, even though I fought it, that is impossible. As Merl says, all we have is “NOW.”
I’m proud of you for embracing that reality and actually acting on it-- not just talking. Besides, “normal” is often not what it was cut out to be.
There’s definitely a balance. We can’t give up and yet we can’t escape reality no matter how hard we try. Thanks again Sarah and I’m wishing you much contentment and less seizures, Greg
Hi John, Thanks for understanding about my venting. What you said makes a lot of sense to me. I hope you are staying positive. You sound like you are. Greg
Thanks for sharing about your journey. My AVM burst was 59 years ago. February this year I was in the ER again with the doctors rushing to get new CT imaging. THey did not have my previous childhood history and I found myself trying to warn them against putting me in an MRI. I have had an endless number of followup investigatory visits and in a week scheduled for a spinal CT. I did finally get a medical ID bracelet to alert no MRI due to the presence of AV clips.
We each have our unique journeys and struggles getting others (including our doctors) to understand. So glad we have this place to share.
Hi Bill, I thought I was the oldest guy here. You may have me beat. My AVM bled in 1973 and I had 2 craniotomies and seizures ever since. I hope your results are favorable. You’re right this Ben’s forum is a unique treasure. Best wishes, Greg
Hi Bill
Tim from UK here. What’s the problem with mri and clips? I always get it queried by the radiographers but then the consultants just tell them to do the mri anyway.
Anyway this has/ is an interesting thread. I’m 30 years post bleed and surgery but still have crap days although I can’t complain compared to many AVM survivors.
Greg,
I have been reading this forum for a few years and I often find my experiences so ancient that I wonder if sharing my experiences is of much value to others. I find a lot of support here and with encouragement I finally have my medical ID bracelet now preventing a potentially fatal outcome from being placed in an MRI. (most modern AVM clips do not carry this risk).
I was only seven years old in 1964. The first hospitalization lasted 42 days. They had to locate and drain fluid from the burst AVM and assess what surgeries to proceed on. Three months later a week to conduct percutaneous arteriograms. Then the final surgery of the right frontal parietal craniotomy for AV malformation surgery high craniotomy in the right frontal parietal area for a partial obliteration of the malformation. 58 days spent in the hospital.
Tim,
The issue is rare these days. Most clips are now made of non magnetic materials. In my case the clips used predate any awareness of the need for these clips to be non ferrous (magnetic). Unsecured metallic objects are a big risk and now radiology techs check patients’ histories carefully.
Hi Bill, I just had an MRI done on my back and they asked me about the clips from my craniotomies. I sensed that they really didn’t care so I just said I didn’t know if I had metal clips. They took the MRI and I’m still here. Best wishes, Greg
Hi Bill, I can relate to a lot of the stuff you (and me) experienced. I had forgotten those arteriograms which were like mini-operations going into my groin, wrists, neck… I’m not sure if they still have such invasive procedures. Be well, Greg
Hey Timb,
I’ve had a craniotomy and my skull is held together with metal plates and screws. I’ve had numerous MRI’s without issue. In 2013, they placed a magnetic valve in a VP shunt. I was told, at the time, I would no longer be able to have an MRI. But in the last 9yrs I’ve had at least 1/yr and back in 2018 I had 5 MRI’s in 5 days. Since the mag valve has been in place I’ve always needed a neuro-techy to check the valve setting after the scan as the MRI magnets can interfere with the settings.
Initially, when they said I needed an MRI I rejected it due to the warning I’d been given. I’d seen pictures of wheelchairs and hospital beds being sucked into the MRI (have a look at the pics on the right in this link MRI Safety , but I was assured It would all be safe and, thankfully it was.
Merl from the Modsupport Team