3 weeks post embolization and having some issues

General
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I am finding it easy to blame the AVM as google is helping me with that. Even tracing my 33 year tinnitus to it, unfortunately the tinnitus didn’t disappear after my embolization like I was hoping it would (didn’t expect, just hoped).

I am with you on the hidden condition concern as I am a pretty talkative guy and try my best not to burden others so I don’t doubt I will come across as “healed”. I have been trying to get ahead of that concern by already laying out that I have future procedures and that I am worried about them. Unlike a scar on my head, I don’t think it would be suitable to be showing my embolization site on my groin to prove legitimacy :blush: I do carry around a photo of my MRI on my phone and show my AVM to anyone that wants to see it (my scar so to speak).

I definately had reached a point that I was starting to think I was making the whole mental health issue up and that I should just stop it. With that in mind, the diagnosis was a relief as oddly as it sounds to say it. That whooshing sound would be quite scary for sure.

Ready for what is to come and best wishes to you both.
Chris

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Are you talking pulsatile tinnitus or more ordinary tinnitus?

Since you’ve only had a proportion of your AVM blocked off, it might be that the next interventions might sort out PT. However, I think most of us DAVF people would tell you that ordinary tinnitus gets worse post op!

I told just about everyone around me at work about my issue: I was very worried about having a stroke as it developed quite quickly while I was waiting for the embolisation. I then vanished from work for 3 weeks for the op (2 weeks sick leave and I took a further week as annual leave) so they knew I’d been off and had the op. The fun thing was, of course, that there was no apparent scar. So that became something that one or two asked about and I explained “I’ve got about a 6mm scar and a ton of bruising down here…” which led to an amount of confusion until I explained that it had been done by navigating a fine tube all the way up to inject glue in the right places.

They were amazed. I think even with a tiny invisible scar you can take people a little way along the journey with you.

And as we know, nothing feels very normal post op. My doc said that basically areas of my head that had got used to much lower blood pressure than they were supposed to have suddenly had normal (high) pressure and the veins that were a little used to having overly high pressure were immediately changed to normal low pressure. You’re obviously not even there yet: the op you’ve had has shuffled a lot of it around but not wholly got rid of the odd pressures, so personally I can’t imagine how your head feels at the moment. So I’d say it’s important to talk about how your brain has been replumbed and it’s going to take more work and quite some time to get used to.

I worked with a bunch of gas engineers, so understanding different pressures and suddenly redistributing them worked very easily with my audience…

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I am going to use that term, replumbed, as I think it presents a good visual for people around me. I work in the mortgage business so will have to talk in terms of “compounding” problems rather than pressure as it is more up their ally :slight_smile:

The tinnitus is ordinary tinnitus I think and gets worse/higher pitched when I move my jaw around. Not the end of the world if it doesn’t resolve as it is something I have put up with for at least 35 years; just a bonus if it disappeared but I won’t get greedy.

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I think psychs can be good for a chat, to assist in processing what has occurred. But as for a diagnosis/treatment, medication is about their only option. For some these meds may work great, but for others, like me, those meds were masking the underlaying issue, a physical cause.

I think that putting it in terms others may comprehend is a really good idea. I’ve tried to explain exactly what’s going on and seen people’s eyes glaze over. I now wear a hat to hide the numerous scars and humps and hollows all over my skull from the craniotomy/surgeries, because when people see my head I get these looks of shock/horror, then come the questions. ‘Plumbing issue’ shuts it down fairly quickly :smile: I’d love to have a tiny invisible scar :smile:

My eyes are my ‘give away’. In the bad stages of a headache one eye droops, it weeps profusely, the lid partially closes and I look damn awful. When people ask I simply say ‘I’ve got a bit of a headache…’ that shuts it down fairly quickly too. Everybody gets headaches, eh? Not like these they don’t. Like someone shot a steel bolt from the back of my head, out through my eyeball. POW

Merl from the Modsupport Team

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Sorry to hear of such an ordeal Merl and what surgery has done to you; all the more reason to appreciate the time you spend on here helping others. I should count myself lucky they didn’t have to go through my skull; of course I should wait to count my blessings as it is not over yet. This headache and sharp pain behind my eye and cheekbone is a giveaway that I have some more hurdles ahead.

The last couple psychiatrists I saw didn’t even want to get into the chat but preferred to reach into their bag of tricks. Only the municipal psych I saw at the beginning was a decent/nice man who wanted to get to know me as well as having talk therapy in his bag of tricks. Sadly, our health care system only allowed me to see him at the beginning and that ran its course.

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Hey Chris,
With our health system you ‘can’ get services but you need to be in the system and maintain the contact. For example I had a hospital appointment a few weeks ago, was sent for scans and told ‘see you in a few weeks’ and… …nothing. So I called them asking what was happening. Seems I’d mysteriously dropped off the system and a new appointment was made. Had I not called/maintained contact they wouldn’t have follow up for 12mths.

Some services via the govt are limited BUT there are other services/support agencies that can either provide a service or can link you in with community agency that may assist. Technically, it’s considered to be a brain injury, so linking in with an agency such as Brain Injury Associations - Brain Injury Canada may be an option. Even if an agency says they’re not the right agency for you, then ask “who is the right agency?” Many of these agencies network with each other and once you link with one it can open up all sorts of options with other agencies. I say all of this because in my former working life I worked for such an agency and we would often need to network with other agencies to obtain the services people needed. Use them to your advantage, ask the question.

Merl from the Modsupport Team

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Chris, I’m from Canada as well and know some of the challenges with the health care, if your are urgent the system is a well oiled machine and really incredible. If you’re non urgent or “elective” it is not so much…I needed an EEGand ended up going to Fargo North Dakota 5 days after I called, I’m now more than 4 months ordered here and still not even scheduled. It did cost but was reasonable and the folks I dealt with were amazing.

The mental health side of the house is challenging, although we are finally bringing more attention to it. Without either employer benefits of some sort or back to the crisis situation, it is really left to the individual. While our elected folks don’t want two tiered health care, we do have it. Mental Health is health care, and we all prefer to keep health care just that, not “sick” care. There are a few options but a lot depends on your personal circumstances, and the ability to get services.

I know it is not much help, but I found I needed to be my own advocate for sure and make the links. I see a psychologist every few months just for a check in, although post my recent seizure has been a little more important, but I’m fortunate as covered through work as a benefit. Of course all our provinces vary as well! Take Care, John

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Thanks John. I think most people could do well with checking in with a psychologist from time to time, particularly when having some life challenges. I will be looking for someone I feel comfortable with to unravel what I have been going through.

Regards
Chris

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Hi Chris, I’m just wondering how you’re doing/feeling. I’m doing okay. It’s been a decent while since I’ve had a seizure. Knock on wood. And my broken back is still slowly healing. Greg

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Hello Greg, glad to hear that you are steadily improving and I wish you continued improvement. I am doing ok; my heart rate is finally back to where is should be. I do however have some issues still unresolved. I am at an all time depressive low and have 0 libido (which I hear the right temporal lobe area is responsible). Seems the two are related. I am loathe to see my doctor about it as she will just send me back to one of the local psychiatrists who will throw pills at me again (although this time I think pills might not be a bad idea). I am wondering if the bleed has caused some sort of disruption in my serotonin production.

This medical issue coming out of left field has really shaken me and played into my fears of aging. Hopefully my next embolization procedure at the beginning of July will clear some of that up; although I worry that and the radiation I will be enduring will further damage the area.

Regards,
Chris

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Chris, I’m glad you’re heart rate is where it should be. As far as libido I was just reading a book by the Dalai Llama and he goes into detail about there being many different types of intimacy. Be well, Greg

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Thanks Greg. I wouldnt be as concerned about the libido thing as I am in my 50s now (so dropping testosterone will do its thing), if it weren’t for the fact that it was just like flipping a switch. Worries me that part of my brain has done a 180 on me almost overnight. I guess I am lucky that right now my issues are mental rather than physical in response to my bleed/surgery.

Regards
Chris

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Hey Chris,
“Libido… …it was just like flipping a switch.” Ohh yea, me too.
I had a craniotomy (along with a few other neuro procedures) and my drive went from 100miles an hour to nil. My wife asked if she’d done something wrong, like it was her fault, far from it. It was all me and I didn’t know why. Over time things have improved in that department but I’m nowhere near that ‘100miles/hour’ of previous.

As for the mental vs physical, I’ve found both can have a huge impact and for me it’s like they feed off each other. Pushing the physical envelope (and failing) adds to my frustration which adds to my mental load and around it goes again. I find I need to keep my mind occupied doing something, anything, because if I really sit down and think about it all my mind can take me down some awful dark holes.

Crawling out of those dark holes, breaking that mindset, can be difficult. So, I ‘try’ (Not always successfully) to identify when I can feel myself sliding into that mindset and make the change to stop it. That change maybe something simple like a change in activity or a change in environment. It might be medication related. It could be food related etc, I sort of have my own mental list that I run through and usually at some point with those changes, it works. If not, I need a bed to reset myself.

That’s what works for me, it has taken years for me to work out what works best and when. You too will learn what works best for you.

Merl from the Modsupport Team

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Thanks Merl. I am in the same boat as you were I push myself physically (like today I have a worse headache from a cardio workout last night) which then frustrates me and makes me worse off mentally. I am sure the building pressure of my AVM supercharged my libido and then, like a light switch, it turned off completely with the hemorrhage and procedure. An odd change of events when it is now my wife coming to me and me turning her down.

I will try to employ some of your suggestions to try to avoid going down those dark holes; although I seem to be living in a dark hole these days.

Many thanks,
Chris

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Skimmed through the thread a bit

This close after getting it done is nothing - I’m two months away from my 3 year anniversary of having a brain hemorrhage & embolization to fix it.

Like Richard, they got mine in one shot - they were shooting for 90-97% on the first round

Just this year I am starting to feel my usual self & normal - with a few very slight additions.

You mentioned cardio workout - relax. My ordeal happened during COVId so I had no gym access & just sat around all day lifting 10 pound weights.

Just the other day I pushed my cardio hard - my right leg went numb for a few hours(my AVM is on the left side) - that’s a part of my new normal

You gotta give it time & recovery isn’t exactly linear either

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Hey Chris,

Big, HUGE, MASSIVE +1 on the time. I wanted to be right and I wanted it right bloody NOW!!! I had a life I’d worked my *&%$ off to achieve and I wanted that life back NOW. I’d had surgery before, I knew surgical recovery. Initially, not nice, but then 6-8weeks later all good and life goes on. Only here I was 6-8 MONTHS later and still I couldn’t work. I was on a seesaw of symptoms. Just when I thought ‘I got this thing beat…’, it would up and bash me into submission.

This recovery thing from neurosurgery is nothing like any other procedural recovery, for some there is straight line of progression, I just wasn’t one of them. I pushed myself too hard, too soon, trying to ‘recover quicker’ HINT: You can’t recover quicker than your body heals. Something went pop and I was back in hospital.
“…You gotta give it time & recovery…” Yep, you do. Don’t be pushing it.

Yea, I’ve been there too. When you’re living in that hole, often seeing a way out of it, around it, over it can be a challenge, but if you can learn from it, it’s not a wasted challenge. My whole system went haywire, all of my senses went into overdrive. I’m in Australia, we were having 40-45C days all I could do was hibernate, my temps had to adjust. My balance was/is a mess. I go to stand, get all dizzy. Bright sunlight zaps me something terrible. Smells gave me a headache from hell. Someone would touch me and it’d sting like touching a burn and nothing tasted right (except for chocolate :laughing:).
I tried to look at what I could do, rather than getting frustrated at what I couldn’t. I learnt to break tasks up into steps, then completing a few steps today and a few tomorrow until the task was done.

I had to re-learn all of my normals, all of my limits and this helped keep me occupied:
It used to be I had 2 speeds, full tilt and stopped, now even 1/2 speed is a challenge. So I had to learn to pace myself
No bright light
I can’t handle too hot or too cold (Just call me Goldilocks :rofl:)
DON’T touch me
I have to control my environment, where possible, keep it all even.
I had to learn all of my signs again and it was all a bit weird, it used to be 'Just get up and go. Now I go to get up and go… …only to find the floor, with a thud. I now have to plan it all out and take my time, S.L.O.W.L.Y. and I’m YEARS on from my last neurosurgeries in 2013. And I’m still on that seesaw today.

I’ve required a few neurosurgeries and the slower you take your recovery the more complete the outcome. Pushing your recovery always has consequences and some of those consequences can be NASTY. Try to find something to occupy your mind. It doesn’t matter what, anything. Take up knitting or crosswords Go watch silly dog videos on Youtube, play an online card game. Find something you can escape into, to switch off that incessant tick, tick, tick, tick, tick… of your thoughts on repeat. Yea, I know. I’ve been there too.

Merl from the Modsupport Team

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Thanks Mike. It is encouraging to hear of your progress and I appreciate the feedback. I am going to have to really hold myself back as cardio workouts are my “medication” so to speak and keep my mood from falling too far into the dumps. I will certainly slow it down a lot and pay close attention to what my head is telling me and adjust accordingly. Perhaps a few light weights might be a good idea so as to try to keep my blood pressure and heart rate down.

Thanks again.

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This certainly appears to be the path forward, as hard as it is to pace myself. I have been full speed for the past few years, culminating in the last 6 months were I was almost full blown manic; probably in no small part due to what was/is going on in my head. I guess once my heart rate dropped back down to normal, I took it as a green light to go. I will rethink that.

Thanks once again for all your sage advice Merl, I will try to put it all into practice.

Regards,
Chris

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Hmmm, sage? Not sure about sage. I learnt the hard way. If there was a right way and a wrong way, I did it all the wrong way and paid dearly for it. This is why many of my comments are “Don’t do ‘X’… …because I did and ooppss…” Is that sage or is that just learning from bad choices? Fine line that one :grin: I did learn but I could have made it much easier than I did.

I’m certainly not saying ‘I have all the answers’, I don’t. I’m merely sharing my experiences/knowledge from my own journey. My info doesn’t come from a book. I know all of the book theory, but the reality can be FAR more shocking and very isolating. I can’t tell you how many times I’ve gone “PHEW, so I’m not the only one…” I thought I was the only one having some of those post op side effects. Ben’s Friends members showed me that many of us come out with odd side effects. The medicos made out it was just me. Seems some of it is rather common.

Merl from the Modsupport Team

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I think that is the biggest benefit that comes from these sort of groups; hearing others experiences of trial and error as well as finding out that others have been through the same thing and gotten through. Thanks again.

Chris

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