So, what now!? Post AVM Embolization

Types of Avm's Brain DAVF
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I think that’s the best attitude to take with it all. The reality is that it doesn’t always go in the right direction. For a while there it was more a case of ‘3 steps forward, 2 steps back’ for me. I tried to look at it more like ‘Well, at least its 1 step forward’ then learn from it. Why had it gone 2 steps back? Had I overdone it? Was it a timing thing?
This helped me to learn and adjust.
Am I happy about it all? HELL NO, but this is where it’s all at. I can ignore my signs at my own peril or work within my limits and do what I can. And that’s what I ‘try’ to do. I say ‘try’ because I’m not always successful.

Merl from the Moderator Support Team

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No - I guess we don’t even know what the “right direction” is - I learned a lot from this ordeal & still am - physically though, I feel quite intact - the rest - well, I’m still trying to figure that out

I have heard this before on here quite a few times & it’s a tough pill to swallow - but, so far - I’m glad everything worked out the way it has. . . It’s hard to say after going through this physical torment - but, hey - I’m still alive & so far, doing fine

All together it just really gave me a new perspective of what normal is & can be

One of the things that mostly kicks me in the side is the uncertainty of it all - it def scares me up quite a bit to know how fast it all happened & the possibility of it happening again - but, I guess this goes for everyone & everything

Along with what I thought of as the closest people to me - not even trying to understand. . . All of this really felt like I attended my own funeral & afterwards everyone went out for drinks, yet I went in a different direction < but, in reality - that’s just fine with me. Apparently it’s what I needed - the whole package was complete mind f***. To be born with this, lasting this long, doing what I have been & making it here in place & time -

Least I can say at this point is I’m glad to be me more than ever

Wanted to add this:

Today marks nine weeks post my embolization procedure - And, I am just starting to break way from needing meds to sleep - I figure this is due to me actually getting back into working & actually tiring myself out daily. All my stressors haven’t changed - if anything, gotten worse. . . But, that’s fine - this year alone :face_with_raised_eyebrow:

The noise in the left ear(brut) has def gotten quiter - sometimes, it’s a bit noticeable when I am sitting in a quiet room - popped neck wrong the other day, but after two days it’s not too bad at all. I have not taken any pain reducing meds in probably the longest time in my life. I have gotten a tad nauseous in the last few days - but, I’m working in close 110 degree temps < it’s not too new to me. Still haven’t lifted anything above 10 pounds for exercise - I barely lifted a 5 gallon jug for a second the other day & just put it back down - Kinda hard for me not to lift “real” weight, since that’s what I did for the last decade - I also still have a very slight sensation in the left side of my head where the DAVM is - this is very minor & I think, sometimes mental more than physical

That about covers it - I really do feel like I am lucky af to be like this after what happened - and, at this point I’ll take it!!

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OHH YEA. I often look back and go ‘How? Why?’ I swear I should have been gone years ago. They say ‘Only the good die young’, in which case I’ll still be here till I’m 100 :wink:
One thing about all of this neuro ‘fun’n’games’ is that it really can make you appreciate the little things so much more.

Merl from the Modsupport Team

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Thought I’d post a bit of an update - this week will be 12 weeks post my embolization procedure. . . It’s def been one heck of a ride that I didn’t know I was signed up for.

Two weeks ago things got a little weird - I was outside in our hellish AZ heat in a hot tub, from what I figure for way too long - I had a real odd sensation - best way to describe it is, my brain melted right around the my AVM’s location(at least that’s what it felt like to me). I immediately jumped in the pool, cooled off & got out of the heat. For a week after I had just oddities - nothing major, but some nausea, just odd shooting type pains around my cranium(I only required Tylenol the first night this happened) & I felt a bit lethargic for a few days after - I didn’t panic, just relaxed & it eased off over the course of a few days. . Now(the last few days) I been feeling the best since all of this ever happened.

No pains, no sensations - nothing. Like nothing ever happened in the first place - not even the usual odd sensation from the inside of my skull where the AVM/Embolization is located

I’m really thinking exposure to high heat(sauna, hot tub, etc.) and this thing don’t get along. Yet - working in the sun doesn’t seem to cause issues - being in hot water or a sauna is what really seems to raise my body temperature.

Lesson learned

But, like another member’s thread stated on here - I feel like I have inner guilt a bit. What makes me so special to feel this good after such a set of events? . . . I still get very emotional about this stuff, I just hide it better now. . . And, like I said in the other thread “my almost 9 year old son seems to understand it best). I seriously asked for his advice - what would you do - he said; you look the same, you feel good - forget about it - just keep going. . . Every adult has a different story. . . i.e. My mom, stop weight lifting stop everything & just get a sedentary job again < no way, not while I don’t have to

I just woke up feelin like a million bucks, I thought it was worth the lengthy post

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Thought I’d do a bit of an update -

I’m a little under 5 months post my last angiogram & visit to my BNi - going on 6 months post Hemorrhage & embolization

I went back into the gym as of last week - I feel solid - pushing weights that no average person does & I am feeling good(I’m back to about 80-85% strength from when I left in March, pushing my body weight on a flat bench a dozen times - I weigh right under 225) - nothing bad to report - which is great in my book(at least as far as my head goes) - my Gi issues are currently way worse(LoL) - which I find somewhat comical. Since I rarely think of how my head is currently feeling - haven’t had a headache that required meds in more weeks than I can remember. . . When I do leave the gym, I do have a sensation around the area where the embolization was performed. But, it’s not bad & goes away fairly quickly < this is after two hour intense workouts

I thought I had a gallstone I was passing, until my wife came down with the similar symptoms - I think we caught something food poisoning like - but, misery loves company :slight_smile:

Caffeine < that stuff had to go. I thought I could outsmart my own body & switched from coffee to sipping green tea all day - oh no no. After about 3-4 days my Bp again skyrockets(145/90) - then takes days to back down + I just can’t sleep - NO caffeine it is then

Not drinking much alcohol(maybe a drink or 2 every other nite) - feels fine

Cigarettes are a complete gonner - being very fit helps me not smoke so much - it just seems like way too much of an oxymoron

There’s another guy at my gym who had extensive head work - he had a craniotomy about 5 years back. We never spoke before & I feel odd just coming off talking about it even now. . . Seems like a younger guy, maybe in his 20’s - with a cranial cut covering his whole left side. This guy has done so well, I seen him right before he went in - then a few months after, when he came out. He was in pieces post surgery - with his friends showing him the ropes all over again - now, this guy makes me look small + it looks like he’s training in the firefighter academy(him & who he was with were wearing shirts with the logo). . . I doubt you’re reading this “guy” - but, seeing you helped me out so so much!

That about covers it - I mean just wow! I never would of thought I’d have another chance - not like this.

Merry Christmas to all - happy holidays & a happy upcoming new year!

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Mike,

Merry Christmas and I hope you’re looking forward to a whole new year! (I am!)

It’s good to hear you’re doing well. I hope everything continues as it is.

We do know one young firefighter here (@John10) but I’m pretty sure he’s in Illinois rather than Arizona. It’d be good if you do get to talk to the young man at your gym: let him know he’s not alone, even if your op is less visible than his.

Very best wishes for 2021!

Richard

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That’s great Mike.Exercise is my medicine, and am fortunate to be able to do what I want in that department. This past week aside! I have a little catching up to do! I was several months getting back into exercise after my bleed, docs kept a tight reign. It was about 5 - 6 months where I was basically told to do whatever I was comfortable with. I still have coffee and tea and doesn’t seem to effect me much, but none after 2:00 pm or sleep will not happen.

I try to balance exercise, sleep and diet as best as I can. When I slip on one of the three I can tell for sure, glad Christmas is only once a year! Its fantastic to hear where you are in your recovery! Merry Christmas to all!

John

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My neuro told me to let loose at 3 months post embolization - I’m so glad I waited to go back to the gym, thx partly to this year

I push a bit of weight - I strongly doubt. Would have felt good three months post procedure

Being back really does feel amazing - I c what I took for granted in a whole different light, to say the least

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Certainly a humbling experience for me, sure does make one realize what is important! John.

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M, do not think you might have many surgeries like I did, right now. My brain surgeries were 30 YEARS ago, & the medical world has learned so MUCH more from 1990! Back in my days, they were almost just LEARNING HOW to do this kind of brain AVMs surgery & feel safer to do a step by step by step procedure? I am THRILLED to see the level of info about AVM now. Back in my days, hardly anything was around, & I felt SO ALONE. In fact, I might not even knew anyone had an AVM until I found Ben’s Friends @ 15 years ago, maybe?!?
I wish you the best!
Lisa

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Fresh back in from the ER again

Last Saturday evening around 4:30-5pm I got a pain/pressure behind my right eye a bit - not too bad, but worth taking a 800mg ibuprofen for. Went away & I ate, kinda thinking it’s maybe from not eating too long that day

The pain has lasted till late yesterday afternoon - I been taking both Tylenol & ibuprofen. It’s been on/off + I have been insanely tired, I nodded out after the gym a few days back on the way home & every day after - I’ll feel fine, next thing I know is I’m waking up two hours later - I’m not even on meds or drugs.

Go into our corona infested ER - they get me into an MRI so fast, I was like wtf - this top priority stuff is not bad. Didn’t even make me wait in the ER either - stroke patients get top priority in here (what a win - sorta)

Within mins I had the neuro, neuro rn & a resident. The neurosurgeon called it some name that I can’t remember(I believe he said reconvergence), I asked wtf it meant. His explanation was, a full return of ALL symptoms without the underlying cause < what in the f***

I asked what can spark it up, he said anything, bad day, anxiety, being dehydrated, etc.

My right leg was numb again, like it was when I left the hospital. All symptoms without the insane splitting head pain - he said, everything could just appear without the cause being present.

I talked my RN for a while about it(great lookin RN btw), she gave me some real solid info. She said people who undergo brain surgery “always” have some sort of probs for quite a while after - many, life long. I also asked her about my newly developed odd sleep patterns - she said pretty much the same thing. Post brain surgeries/procedures “everyone” is off somewhere. Told her what I took for sleep - she was like, look - if it works - you need it

Everyone around me tells me to take it easy - including my great looking nurse. I asked, what is “taking it easy” consist of - no one has an answer. I have been back to my usual self in the gym and every other aspect - without any sign of any type of issues - I watch myself so closely on the daily. . . I haven’t had a cigarette in “I can’t even remember”, cut my drinking to maybe 2-3 drinks a week ever since going back into the gym. I even pulled back in smoking weed - but, it was just for personal reasons. I’m trying to be safe as I can while getting the most out of life. . .My work/life is still unfortunately quite stressful & it’s not something I have a ton of control over - yet

So glad to be back home, didn’t think I’d be coming back for a little while this time. I also figured with BNI being right by my house, I strongly doubt they’d ever let me die - I’m more frightened of coming home not the way I came in . . . Real nice that now I’m on the straight MRI program, I think I’ve had enough radiation to last 5 lifetimes from all the CT’s & fluoroscopy.

Now exactly a week later, I feel almost as well as I did a week ago.

This episode truly follows what I believe in now so strongly - the next day isn’t promised, not the way we think it is.

Something felt so off, to me - it felt just like when the big one happened, but without the horrible sharp hot machete to the head feel.

I just couldn’t think of what would b the cause

What an intense week long event - the way I physically felt, I just thought I knew something was wrong. . . But, their speech stands - if you feel you need to see us, come in - it’s not a joke. It’s much better in your case to be safe than sorry.

I’m so thankful for these people - and, that’s a definite understatement

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It wasn’t “recanalization” was it? I’ve heard that term, though not looked it up.

Slightly amazing that you’re feeling back to ok again, though my incident at 5-6 months was brief.

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Oh, no no

I have definitely done my research - recanalization is def not it - thank god!

We have been having very odd weather with a ton of over cast - my wife blamed it on that

I just didn’t know what was the cause, but I felt rough & how persistent it was just disturbing

Went back into the gym today - just walked & lifted not even my warm up weight

recanalization < this guy :face_with_raised_eyebrow:

This is why I just let the pros do their work before I posted - we all speculate so much & unfortunately in all of our cases, for a real reason

How I described it to myself is “ghost pain” - everything felt as real as it could be - just without a hemorrhage being the cause

I’m just so glad to be back home - 3-4 days ago, things didn’t feel so promising

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Ok, well I think that’s good.

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This brain stuff really does scare me - I think it’s the only thing that does. Although this seems to be with all health issues.

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Ohh… …I can’t think why? (JOKE)
For a while it was like I was walking on eggshells. Every ache, every pain and I’m thinking ‘Is that my head?’ My wife is forever ready to hit the ‘PANIC’ button and on a few occasions she’s called an ambulance. Once because she found me passed out on the floor, which was fair enough. The other times have been because my symptoms were odd (as if any of it’s been ‘normal’) and progressively getting worse. Many times they’ve done scans, put me on a saline drip, then sent me home. But then by the same accord, I ignored things I shouldn’t have, thinking the symptoms would settle by tomorrow. Only they didn’t and it turned out to be a little more concerning than I thought. My wife was not happy with me at all. Now if I’m having those ‘odd’ pains and sensations she’s asked that I tell her. So then if she needs to tell medicos what has happened, they can have the info, even if I can’t give it. I agreed (well, the truth being I wasn’t actually given any choice in the matter but to agree :roll_eyes: )

What I look for now is that progression. I get some weird headaches every day, usually starting on the right side. A headache starting on the left side, that’s odd for me. If that progresses to limb numbness or nausea. I’ve got to act. These are some of my signs, but it’s taken me years to work out which pains and sensations are just ‘pains and sensations’ and which are an ‘ACT NOW’. Some of those ‘pains and sensations’ can be VERY %#$@%&* SCARY and don’t let anybody tell you otherwise, only you will ever know how bad BAD can be. Over time you will learn your signs too. Others may not understand it all but honestly… You know You better than anyone. If you’re concerned or worried, get it checked out.

I can only reinforce this whole statement:

It was only recently, last couple of years, that I was told almost the same thing by a very young (Well, younger than me :roll_eyes:) neuro. It was the first time EVER that a specialist has admitted they still don’t know everything about the brain nor the how’s and why’s of pain. We have to manage it all the best way we can.
I was in shock to be honest.

Merl from the Modsupport Team

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Good talks man, they really help me out

In my case, my wife - she’s the opposite. . . I’ll feel like I got shot in the face “did you need to get you a Tylenol” < yeah

Like when they my friend/neighbor called the ambulance when I completely seized and collapsed right prior to my ICU stay - she’s just in shock - it’s why I am so thankful for those certain people. He called the ambulance & he was right - I can’t really even stop & think what would have happened if he wasn’t there at that time.

I was talking to the BNI MRI tech, told him mine & my wife’s background. I’m straight from mother Communistic Russia & she’s straight Mexican - he’s like yup, that’s how we are(he was Mexican too) - I’ll pray for you & tell my mom to light a candle - no, darn it. . . I think something is really wrong, my freaking leg is numb. . . It’s one of the things that just stresses me out so bad. But, I get it - I spoke to her about it. She just can’t face it - I guess I could have learned that from the first incident - when she kept saying this isn’t happening - oh, but it is

So yeah, that’s the grim truth - we, need to know ourselves the best we can. It’s why the neuros question me so deeply, on what, where, how, what were you doing, what did you notice, how often & so on.

Geez, if she was a full on medical professional - I’d be stuffed in a car & dragged into ER if I mentioned any strange sensation.

Rant over - I’m glad I’m ok. . . I never expect for others to understand what I go through - since it’s pretty much impossible.

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Both the wife and I worked in social services, actually teaching people with disabilities all those skills that most people take for granted ie how to cook, clean and access services. We had to do annual training on ‘What to do if…’ we had to have safety accreditations, hygiene certificates and of course emergency protocols and certificates for everything related.

We were working in clients home, their environment, and you never really knew what may arise. So, you had to be prepared for ANY eventuality, and I mean ‘ANY’. You’d knock on the door and BINGO your day begun, now deal with it. So we’re both well clued up on the processes and how it all works. We’ve both been in situations where we’ve had, at different times, to use those skills and that helps because often the first thing people do in a situation is PANIC. Get themselves so worked up, they can’t even hold the phone, let alone dial a number. A bit of a trial run might help ie ‘If this happens, do this…’ and go through all of the processes with her. I’m unsure about your emergency services in the U.S., but when I was teaching clients I would call them at ‘999’ (In Australia it’s ‘000’) and explain what I wanted to do and why, as a practise run for my client. They were more than happy to assist, sort of like a form of desensitization. The emergency telephonist ran through it all like a normal emergency call, so the client knew what sorts of questions they’d ask and how to respond. It may help your wife. There is also a device known as (oddly enough) a panic button. Its a pendant around your neck, that has a button you push. Basically it’s linked to the ambulance service via the mobile phone network and gives them a location. Look, we all hope it’s never used and never needed, but it’s a bit of a backup.

Some people ‘may’ understand to some degree, some may have no comprehension whatsoever of what you’ve been through, but honestly, getting people to comprehend the realities of it all can be near on impossible. I know, I’ve tried. Even with people who should know, like some dr’s, can’t grasp it. As another member has stated previously “Brain Injury… …you don’t know it till you’ve lived it” and it’s so true.

Merl from the Modsupport Team

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Well spoken sir,

It is what it is, that I know

Just this stuff really kicks my a$$. . . And, stuff bugs me so differently now. I try my best every day not to stress - but, living a stressful life isn’t new to me. . . More like, living a stress free life would be a new concept.

That’s awesome that’s what you do/did for work - me personally, I don’t think I have it in me. I feel too much - and in these types of situations, that’s a negative - and, not a positive.

I’ll keep pushing that’s for sure - if I can grow from 150 pounds to 225 - I can keep at a task pretty well. . . My bodybuilding/fitness has helped me so much through this - but, it’s def time for me to step back - a tad

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I must admit, I didn’t recognise how much benefit I would get from working with people with disabilities. In my mind the idea was for me to help them, teaching them. But as time has gone on I think I learnt far more from them than they ever learnt from me. It’s a bit ironic that I’m the one who ended up with a disability.

Back before the term ‘Disability’ was used some of my former clients would have been labelled cripples. Some wheelchair bound, some on walking sticks/crutches or walking frames… They had a kind of determination ‘To do’ despite their own limitations. I often look back and think ‘Things ain’t good, but things could be a hell of a lot worse and if they could then what on earth am I complaining about…’ Giving myself a bit of a metaphorical kick in the pants. It can be very easy for me to get mind bound on ‘Me’ and then go round and round and rou… in my own head with the same question, getting the same answers, it can turn the mind to mooosh. By focusing that energy, that concentration on another person and their needs, takes me out of self. I still had that emotion or that ‘feel’ but use it constructively to help others rather than destructively ie Me, me, me and me.

I personally think if you have that drive ‘To do’ often that’s a huge part of the battle, the motivation. It doesn’t matter what it is you do, but you have a goal and you aim for it. That can be that drive ‘To do’ and not just isolate and hibernate as that can be an easy hole to fall into, but a hell of a hole to get out of.

P.S. I’ve lost that much weight, it’s scary. I used to weigh around 190 pounds. Presently I doubt I’d weigh 150pounds fully clothed and wringing wet :roll_eyes: A few weeks back I met up with an old friend from 20+yr ago. She gave me a bear hug that damn near snapped me in half, she put me down and said ‘Ohh you’re so bony’, as she’s blaming the wife for not feeding me properly.

Merl from the Modsupport Team

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