Yeah, but Mike, you know, if it’s pretty much impossible, that means it’s within the ball park for pretty much all of us…
There’s a tiny bit of BS in that statement but not much.
TV
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A couple of thoughts about brains and embolizations etc. (not that I’m claiming to be an expert, but I have had, well, counting the partial steps in removing it back in the '80s as each individual one, I’ve had 10 of them at least.
My daughter has her doctorate of nursing practice and she said that in all of her education the overwhelming them she’s heard from neuro doctors has been along the lines of for as much as we do know about the brain, there is twice as much that we don’t. That’s not exactly comforting but it makes sense.
So, when I’m having a day that’s less than positive, here’s my list of things I look at to try to explain it:
- What was I planning to do - if it required effort - physical, mental, emotion, you name it, my brain could be saying, “Nagh, don’t do that much.”
- What did I do yesterday? For example - Saturday I worked on cleaning some of the basement, swept the garage, put away some stuff in the garage, did some writing etc. Didn’t break a sweat, hardly got dizzy, had a day that was relatively normal. Sunday morning, I woke up feeling like I pitcher or two of Merl’s favorite brewpub and then tried to run a 10-mile race back to Merl’s place. Let’s just put it this way, they wanted to call the Ambulance when I stumbled across the finish line.
Other things that can cause additional problems:
- A full moon
- Two full moons in one month (a blood moon?) 36 years ago, my wife and I thought that was a total joke when she was told it during training for her RN job. It wasn’t, it isn’t. Whether you’re a Pediatric ICU Nurse or an ER pharmacy tech or a neonatal ICU nurse, I’m sure I could come up with story after story after story
- Snowstorms, rain storms, hurricanes on the other side of the country, tree fires, earthquakes, all of these can make for a difficult night or day or night and day and night or whatever. IN other words, nothing that has anything to do with the patient or his/her family.
Now, you are either thinking, “Man, send that guy a bottle of something refrigerated from the pub down the street (I’d be happy to give you an address), because he is hurting,” or "You know, that TJ guy, I think I will start paying more attention to those type of things to understand maybe not completely but at least partially what TJ’s talking about.:
And as one of the people who talk to me quite often, I’ll probably say both of you are right…
I think it would be safe to categorize the side effects of an AVM after treatment to be similar to skipping a stone off the pond. You might get it just right and it goes and goes and goes. OR it might give you one “bounce” and then it twists and “kersplash” it’s down in the water. Or it bounces and bounces and bounces and bounces and looks like it is coming down for its last bounce and its a rock and that gives it just enough space to make it far enough to the other side.
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Very well written there guys, really sums it up
What I do know is that I’m not looking to stop living - if I feel good, I’m going to keep going
Today, I’m back in the gym feeling pretty darn good - a very slight throb as usual right where the rupture happened
There’s def no way of predicting any of this -
So thankful to be here today - too bad it took this for me to realize the things I feel now
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God Bless you ALL, for what you are all dealing with! No matter how bad things could get, try ALWAYS to SEARCH & FOCUS on any small or large POSITIVES going on at those time! THAT IS MY MOTIVE, & IT WORKS QUITE WELL FOR ME!
Good luck to you all.
Lisa A. Stuckel
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Well, I feel that today has good timing for an update - it has been exactly 17 months(it was also a Monday the 13th) since my dAVF/AVM has been diagnosed and was the cause to an active brain bleed. At the time, things looked quite grim - between how/what I was feeling, being in the midst of the worst part of cOVID & going to a hospital that had no clue what to do with a patient with my/this condition.
Fast forward to today - I feel nothing short of amazing!
I thought to myself at the time there was no coming back from where I was, let alone what I was about to go through.
Now, I physically feel better than I have before & my entire perspective on life has changed(to put it mildly).
And, after being on here I wish everyone had the same “luck” I had with this - And now, I feel quite compelled to help people in any way possible that are going through anything similar.
As far as how I exactly physically/mentally feel - I still feel odd sensations all over the left hand side of my head(where the AVM was embolized & where the hemorrhage occurred) - mostly in the upper left cranial region from back to almost front. No headaches - period! I have not taken a pain reliever for any type of head ache/sensation for months upon months - my wife gets way more headaches than I do(some, possibly caused by me though, lol). I still lift very heavy in the gym - my temporal veins come out pretty hard after doing so(on both sides equally). But, I am really taking a different approach to my fitness at this point - not because of this, but my overall health(joints, ligaments, etc.) I am still in the same physical condition as I was prior to fifteen months ago.
Anxiety is the only thing that seems to haunt me almost daily. I stopped smoking weed, since it really was not helping much at all. It sure did for the first few months of being released from ICU. But, up until stopping - it actually kind of given me an opposite effect along with adding to a fatigue feeling. My anxiety really kicks up in the evening after a full days work. During the day, I seem to do just fine. It’s time for me to change PCP’s, since he believes it’s better to place me on long term antidepressants, than me carry on with my antipsychotic medicine use(along with telling my pharmacist to tell me to look for a new PCP < seriously, what MD would do this? At least have the courtesy to call me or something). I am far from depressed & do not believe in these meds at all. My Rx of choice has been Xanax, it has a short half life and I do not abuse it at all. It doesn’t make me feel anything that I am attracted to, but more of a necessity.
That just about covers it
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Mike,
I think you’ve done amazingly well. If there’s anything you can encourage yourself with it is that you’ve done amazingly well:
- You got through a bleed
- You were really quite well post op very quickly
It’s interesting that you still get slightly odd feelings, because I’m a bit the same. Very rare I feel odd but it happens occasionally. I had a carpal tunnel release on my right hand several years ago and the sensation just at the scar or adjacent to it is probably 99.999% so I think to myself that if that’s the case with my hand (and the surgeon cut his way in from the outside with that one) then it’s reasonable to have a similar not-quite-100% with my head. After all, brains are that bit more fussy, more complex than a hand.
So it’s nice to hear your reflection. Encourages me as much as it will encourage others.
I also like your impulse to help out here. If you’d like to join the moderator team, just let one of us know 
otherwise just carry on doing what you’re doing. I know you read and follow what’s going on quite closely.
I hope you find a way to get on top of the anxiety. I’m sure anxiety is one of the more challenging things to sort out but there’s every reason to think you can get there. If your current PCP is that off the wall, it sounds like a time to find someone with a bit more imagination and/or patience.
Nice update. Good to hear.
Richard
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Great update and great news Mike! Thanks for all you add to our group, always a great perspective. It is amazing how different we all are but how much we have in common. That’s quite a sentence! Take Care, John
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Another month passes, my brain/head feel quite intact. Back to doing insane weights at the gym - just a tad, I go by feel. Nothing feels off aside from a slight pulsating in my temples + a light throb where the hemorrhage happened. Both of which are long gone before I leave the gym.
Crazy weight or not, I focus on head elevation. It no longer feels good to lay flat, let alone decline position.
I’d never believe this would be possible again + I feel that fairly extreme workouts strengthen our neurological pathway & gray matter tissue.
I don’t promote this, and this is still a tad bellow my personal record - but, I’m still holding strong.
Shoot, my gallbladder gives me more pain than my head
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Smashin" Steel! John
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I’m exhausted just in looking at those weights 
Merl from the Modsupport Team
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Figure it’s time for an update -
I am two months & two weeks from my two year anniversary of my “rapture”
Been doing quite well in all aspects(well, aside from fairly severe anxiety) -
About a week ago, I woke up with a minor headache/pressure on the right side of my head(opposite of where my dAVF/AVM) is. I took a pair of Tylenols & just went back to sleep.
To most of “us” I am one of the luckiest ones - considering, I hemorrhaged & lost all motor skills, etc.
I extremely rarely get any type of headache
But, since this occurrence a random pressure seems to be lingering on the right hand side of my skull/behind my right eye
I haven’t exactly been taking easy - considering the last post on this thread. Since, I actually pulled back quite a bit - not just because of my underlying condition. But, everything - I can maintain my physical shape without such extreme weight lifting. Work, well - has been more intense physically than my lifting/working out. I have been working on nearly nothing but diesels for months < talk about a beating << this is all in near 100 degree temperatures
I suppose I will pay real close attention to this “guy” - being 20 minutes away from BNI is a true gift. I already got the drill quite well on how these visits go. But, an unnecessary angiogram is definitely not high on my list of things I want to do.
Been keeping on eye on my vitals - My BP has been quite spot on, aside from one day I caught it very high(159/84) - This was already post the incident where I woke up with the pressure/pain. It was an intense day at work - straight 6-7 hours in direct sunlight & I forgot to take my BP meds 
Just took my vitals right now & sitting at 102/73 with a BPM of 60 - throughout most other days it’s right around 135-138/72-78 - BPM gets pretty high depending on my activity
Along with being hard on my self physically, stress has been a huge factor - a neighbor/my wife’s friend just passed earlier this week. Her, her disabled mother & her daughter live a few minutes up the street. Her & her mom were the first to show up during cOVID to our door step with flowers when I was released from ICU - current cause of death isn’t official - but, it was natural. From what her mom said, she has had a rough cough & coughed up a bit of blood for a few days to a week. She refused to go to the emergency room - she set an appointment with her PCP. The night prior to that appointment, her mom found her unresponsive at 3am. Her daughter is one grade up from my son in the same school. I seen her leaving school yesterday, the sorrow in her face can’t be described.
But, just like that - one day you’re & the next you’re gone. I just seen her two days prior picking up her daughter from school - she was only five years older than I am & appeared healthy as anyone can.
That about sums up my current state - GL to us all, we all need it much more than some of us think we do.
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Mike,
Good to hear an update. If we could get you sorted on the anxiety front, that’d be 
Your story about your neighbour is terrible but it’s a good reminder to all of us not to get anxious about minor odd feelings that might be related to our AVMs or not because while we’re getting distracted by all of that “stuff” we’re likely to be missing out on enjoying the random length of time we’ve got left.
I’d like to hope you’re nicely in the clear by now. Do your best to put the adventure behind you and do as my doc recommended: “Just restart normal life.”
I can say I feel better than the 99.999% I gave you back at Christmas.
Best wishes,
Richard
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Thanks man,
My opinion, between sensations, my lifestyle, etc. - I am forming some sort of recanalization. Of course it could be just CNS damage to blame.
But, I put hours upon hours of research into this. And, it is my unprofessional conclusion - or, it could just be a new formation.
I don’t care, some days are better than others. But, it started now about two weeks or so back.
Some days, nothing - some, a pressure behind my right eye, along pressure around the upper right cranial region.
I suppose this goes along quite well with the “my decision” thread.
Whatever it is, I’ll treat it as I feel necessary. BNI is right up the street with arms wide open full of fresh procedures - LoL
I just do know two things, one - don’t let the bastard rupture, two - it’s a big possibility that I won’t come out the way I went in.
Every day is a blessing, and I’m taking it as one.
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Darn.
Honestly, I’d say pushing big weights might not be helping. I know I go on about this and it is completely for you to live your life the way you want to (I do mine!) but honestly, I think it might accelerate trouble.
You’re in the right place though if you’re just down the road from Barrow.
Very best wishes,
Richard
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Can’t say I disagree
But, what I do for work is not much any lighter.
For now, I’m “trying” to take it easy - but, it’s not something I can just do on a dime.
Understood.
My wife had a heart attack a month ago. It has definitely refocussed what she wants to do in life. It’s up to you to decide how you react to it but it’s worth looking at changing away from heavy work, if that means you’re safer and you stand a decent chance of getting to retirement some day. Even if changing what you do takes some time.
If you were struck down by it again tomorrow and ended up somewhat disabled, how would that change your world? Is it worth starting step 1 in the right direction tomorrow to try to reduce that risk?
Look, I don’t want to tell you what to do: that’s not what we are about. I’m just being the friend at the bar who dares to ask you some of the difficult questions.
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I am so sorry to hear that, friend
And, right now - well, I am in that place. I halted everything, thankfully - again, our finances are in order & that’s thanks to my insane hard work - I do have a few things to finish with work, but I don’t quite know if it’s such a good idea.
I’m taking things one day at a time - yesterday, I was right on the money almost all day. Today, the pressure in/on the right upper quadrant of my head is persistent.
I’m steps away from taking a trip to BNI. A hemorrhage is the least on my list of things I want to go through again(“if”, I make it through)
Can’t say I am not fearful of their findings.
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I completely understand. Sounds like you’re starting step 1, so that’s good to my mind.
Mrs D is ok. We’ve been doing walks to get her a bit rehabilitated (and she started back to work last week – she works just 18 hours a week). She’s gone from doing very tentative, slow steps 3 weeks ago to walking at a normal pace this week. She’s having to pause for breath occasionally but much less than 3 weeks ago. In fact, I’ve nudged her into preparing dinner just now: first time in a long time.
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Man, this health stuff surely beats us down
A heart attack sounds about as fun as a hemorrhage - I wish her the best for sure. Definitely didn’t wanna hear that about you guys. Really hope she’s alright man - and, you as well. You’ve been a tremendous help to me, feels like I just started this thread - yet, at the same time it feels so distant.
Back in from BNI - one of every test later(aside from an angiogram) I am A ok
Headaches/pressures I am randomly experiencing - their verbatim here, it could be a number of things - anything from me starting to feel withdrawal symptoms, since I am trying to taper down my Xanax use - to, well - anything
Of course part of me is a huge hypochondriac. But, come on - when the previous hemorrhage(happened) I overlooked symptoms so much.
It’s been about 16 months since my last visit. I still call it a solid win - I’ve had a few close calls, of where I felt just odd - but, still decided against going in.
Being 20 mins away from this place is seriously a life saver for me
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Hey Mike,
Truer words have never been spoken and the weight of it all can be HUGE
And it takes a university degree for them to work that out, does it?? As I’m sure I’ve said before, that theory of 'It could be ‘X’ or it could be ‘Y’ leaves every other letter of the alphabet as a possible ‘Could be…’ too, often leaving us with even more questions than answers. Personally I find the randomness of symptoms one of the hardest to manage. If I knew that at 3pm everyday I would be symptomatic, I could work around it all, but my symptoms fluctuate MASSIVELY. There is no set time, there is no set symptoms so I’ve learnt I have to be super-flexible in how I best manage.
Now, hypochondriac? It’s a term that gets thrown around quite a bit when they have very little in the way of answers. I think we often become hyper-aware and hyper-sensitive to our own signs, but after my initial neurosurgery, every ache, every pain and I was questioning myself ‘Is this it?’. Over time I have figured out which symptoms a ‘Normal’ (as if any of it is ‘Normal’) and which are a sign of ‘Act Now’. On a few occasions I’ve had ‘act now’ signs, gone to hospital, only to be sent home but by the same accord, I’ve had symptoms I’ve ignored as ‘normal’ only for them to progress to the point of OMG. The medicos often make out they know all about it, but you know ‘You’ better than anybody and if something ain’t right you’ve got to speak up. Is that hypochondria? In my humble opinion… NO!!! I know for myself I am super-aware, my initial surgery was a shocker and I don’t ever want to be in that position again.
And that’s 1/2 the battle won. If we can accept the realities of it all, then yea, that is a win in itself.
Merl from the Modsupport Team
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