2016, maybe into 2017 was my “annus horribilis”. We all have them 
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Be aware that booze can elevate our blood pressure. I was told in my college years, a drink or two here and there was no big deal. Combined with my anti-seizure meds, 1 or 2 drinks really felt like 5 or 6, though. Booze can also lower seizure threshold if you are prone to full blown seizures b/c of your avm. I gave up booze completely at age 29 before any treatment for fear of these ‘break-thru’ seizures. I was fortunate to survive the drinking/party days I did in my twenties. All the best, Big Mike. GK
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Now, ain’t that the truth, 2013 was mine I had 3 neurosurgeries that year.
But look at it this way ‘Things can only get better…’
Merl from the Modsupport Team
Shit, this is a bigger deal to me than most - that’s me in the Avi a week or 2 before this shit began
You can kinda get the idea of what’s most important to me. . . .
But, I do like a challenge. . . Hardest part is keeping myself mentally stable - my anxiety picks up & runs away < of course, I never had issues even close to this before this hit the fan
Def a good day of age to be in - these procedure have really been most perfected in the recent years - but, the uncertainty & seeing the old me left at the shore is really piling up
Mike,
This stuff can blow any of us off course quite considerably. It’s absolutely normal to be away from where you thought you were or want to be. I was well off course for a year, could’ve been 2. Don’t take it personally and don’t take it that tough guys can stand up to it because that way disaster lies.
Honest.
You just need to be WAY more patient with yourself than you’ve ever been. Stick with it. You’ll be fine.
Richard
Mike,
You are already getting some good input and my fingers seem to want to run in overdrive, so instead I’ll do my best to make it shorter…
AVM first diagnosed in 1978 - I was 13. 11 hour surgery but it didn’t bleed. Docs said they got 95% out and it might grow back but the part they didn’t get out was too risky to remove.
Went back in 1984, 1986-87, 2009 and 2018. Some of them (all embolizations) were a bitch to go through. I describe them Iike someone was beating on my left shoulder with a baseball bat. 1986-87 was the worst for that.
2018- we accomplished what was needed (prevented a brain bleed) but way too many symptoms and side effects afterwords. I found a chart, I think it was on John’s Hopkins site that named the 13 cranial nerves and a sentence or two of what they did. Of the 13, my side effects fell into 8 of the 13 nerves. All.over.the.place
I struggle with hearing, vision, physical activity (thank the good Lord I can still walk and I’ve only fallen twice (once out of bed LOL). Headaches, balance, swallowing, talking, fortunately I can still type - probably at 90% of my former speed and I can still write. I’m on disability because while there are things I can do, I can’t do them 8 hours a day for 5 days a week.
Every time I’ve had an embolization, until this last one, I was able to come back and be very close to what i was prior in about 2 weeks. I was in college with the 1986-87 embolizations. My recollection is that we did these on Thursday, so I’d miss school Thursday and Friday and back at it Monday but a bit slower. Most of the time that worked fairly well.
Until we got to this last one. My therapist described it as sort of like that old lumber industry game where two guys would stand on a log floating down the river and by moving it back and forth, each guy would try to knock the other one of his end of the poll and into the water. The first times, I was able to get up on the log again and didn’t lose very much, a little bit every time but.I was still able to catch up and climb back on. This past one, the 2018 - it was like it knocked me off the log and I went under water and hit my head on a rock. I came back up and very little was the same. Two years later, I still struggle. Things have changed but they really aren’t better.
And by now, they usually would be better.
Now tell me what things I did not answer for you.
Thanks,
TJ
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Thank you for all of the info so much. Things are def different now - But, I am very very aware that so far I am the luckiest man alive. . . Three weeks ago exactly at this time is when I was getting prepped for my embolization.
Today - I feel great(no, not like before anything happened great) - but, I am dealing with this the best that I can. Walk for 20 minutes every day, get up every hour for 5-10 minutes & lift 10 pound dumbbells(discharge orders clearly say 10 pound max) when I feel up to it. . . . The hum in my left ear makes it a bit difficult to sleep. I can’t get excited or drink coffee - it makes my BP run away & takes way too long to bring back down.
Trying to get myself together enough to get this root canal done this Saturday - It would def be a good idea to get it done, since I just have a temp filling rn
Then tread towards my next angio in about a month. . . . Again, I really do know I am lucky af to be able to just type this rn. . . . But, my emotional spells are something new, that’s for sure. . . . . I can’t even describe them to myself at times. . . . Although, at most times I think my wife is worried more than I am - Although a friend of mine who was just recently diagnosed with thyroid cancer & already had it removed - says I have it worse than him. . . . . I dunno if I wanna win that battle
Mike,
It’s good to hear. Keep on keeping on.
I think sometimes the taller we stood before, the harder the fall feels. Don’t worry about vulnerability: it’s what being a rounded person is about. We are learning stuff about ourselves we probably wouldn’t have learned for way too long.
Keep on keeping on. Avoid the coffee and chocolate and alcohol and smoking and anything else that puts your blood pressure up.
More importantly, good luck with the root canal on Saturday! Root canal work is way worse than an embolisation!
I’d say 
but dentistry just isn’t funny.
(Extends a virtual handshake through the internet).
It’s good to meet you.
Richard
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Lol, thanks for the laugh man
I like that - kinda the way I feel about it. Just don’t need to focus on it like that - the more we have, the more we have to lose - luck with the root canal < lmao. . . I’m very weird & enjoy getting dental work - not kidding. That’s y when this sprouted up - I was like, this can’t be my tooth - I’m a tooth weirdo. Lol
I am def taking it easy & pretty much go by my schedule < it keeps me sane & seems to b working. . . No booze(one sip off the wife’s margarita since I been home), no nothing aside from 1-3 cigarettes a day & I am working on dropping that. . . .I smoke weed, def calms me down(I don’t know if this could/should be mentioned on here) but, I’m trying to cut back since I have no clue how it really is for this
I feel beyond lucky that we were able to sell off our business at the perfect time. Between me still being able to do some stuff as soon as I got back & my wife handling the grit of the work - we got it done. . . Now, I can just stick to my routine & hope for the best(and, I feel real good about all of this having the most positive possible outcome) < being serious here, at times this feels too good to be true. . . Of course it’s not the same, but I been looking for a reason to pull out & needed a change - but, this being the reason - well
Any suggestions to sleep with this pressure noise that sounds like a electrical sub station would be great - during the day when I either talk or listen, it’s no problem at all.
This year tho, she sure is something
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I found I needed to be propped up a bit with pillows. Normally I’m 1 decent pillow and that’s it. When I was not very well and my head was feeling a bit pressured (and possibly for a while post op) I used two or three pillows. I’d just get yourself a bit more propped and see if it helps.
Sounds like you’re doing pretty well. It’s good to have a good bit of timing occasionally, isn’t it?
All the best,
Richard
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That’s exactly it! My head feels better propped up a bit(always has, but now more) but, I don’t sleep well that way - more to get use to, I suppose
Off topic a bit: But, how are you feelin? I read I believe all of the two threads u sent me - thought I’d ask. It’s really tough to get a grasp on this stuff - without having one, people don’t get it(I know I wouldn’t)
I’m absolutely fine. I do everything I used to.
It took me 18 months post op and my doctor insisting there was nothing remaining wrong with me to get back to normal. You’re going to need to be patient. The re-plumbing takes a looong time to get used to.
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That is Good to hear, man. . . . That’s just fine with me now. It took apparently 3 weeks for this to start soaking in & for me to recognize what feeling is what - along with a new way of taking it easy
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It is very traumatic. Give yourself plenty of time to heal.
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One issue that’s really beating me up is that people don’t get it at all - unfortunately all the way down to my family. They see me back & just see it as something I already passed. . . U look great tho - well, I’m not. Def tryin my best - but, that def doesn’t help
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Mike,
You’re not alone there at all! I think you need to keep talking to them about how you are but some people really do struggle to get it and some people will get to the conclusion that you’re swinging it but they’re wrong and it’s a problem faced by just about everyone with an “invisible” illness or impairment.
It’s possible you may still need a second embolisation and the reason you still feel more ropey than you might is that the doc has closed of most of it, but that might be giving you different weird routes for the blood to flow. As you’ve seen with my story, I was convinced I still had a little something to do but it turned out “no”: it was just talking it’s time: but embolisation is a treatment that is often used in two or three goes to get everything, so there may still be a little something to do.
I’d say try to get the most important people on board with how you are: partner, parents, boss, closest friends or good colleagues and they will spread the word for you a bit. People will talk about you behind your back, so getting some good allies seems to me a tack worth trying.
Lots of others have said the same. I think the only person who didn’t believe me was my boss’s boss. I can’t remember what she said directly to me early on but it was very dismissive but she came round over time, helped maybe by those I interacted with more.
It’s a long game. You’ll get there.
Richard
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I lost most of the people close in my life in the last few years. I am one out of five left, all died but one - who’s serving two life sentences
My family is here(wife & son) my son isn’t even 9 yet, it hit him hard & it wasn’t something I could prepare for
Wife - I dunno, I don’t have anything to say positive or negative, for the most part. Positive was that her & my son is what got me through the empty hospital room. Now - well, I am trying to manage is the best & polite way I can put it
I am quite aware of the procedures in this process now - me & my neuro are on the same page about this. . . But, I can see how much skill these guys poses & I am just hoping for the best. At this point I am just trying to hang on the best that I can. This minute, I am doing a ok - I’d say. Tomorrow is my root canal - at this point of time in my life, I really am taking this one day at a time with nothing but hope.
If it wasn’t for miracles all of my life, I wouldn’t have gotten this good this far
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Have a good day today 
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Thank you sir!
Root canal was a success. . . I may be some sort of weird but, I don’t mind dental work what’s so ever. No probs whatsoever - I’d take 5 of these to my last one embo. At, least that’s how I feel about it. . . .
I’m into week 4 of recovery, still throbbing a bit on the left side of my head - although, some of that throbbing was caused by the tooth infection that started again under my temp filling. Mainly the throbbing that I am feeling seems to be coming from the temple area - I always had some mean looking veins on my temples. But, now the left seems to be prominent - it comes and goes tho. . . From what I figure, it’s no vein - it’s an artery. And, now I figure it’s getting more pressure since the arterial flow that was going into the veins inside my head is blocked off.
Of course I will give it more time & see what it does - no way to predict this stuff for me at this point - re routing the plumbing of the brain(as my neurosurgeon called it) has to have some fairly odd effects to say the least. . . .
Pacing for the next angiogram, then take it from there
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It just proves how different we all are! Glad it was a breeze.
I think the day-at-a-time thing is a good plan. At some point, I hope you’ll be more relaxed to run it out to a week at a time. Next angiogram is not too far away. 
If you get anything properly worrisome go on, don’t wait for the angiogram but talk to your doc or go to the ER according to the severity. However, I’m sure there’s a lot of settling down to do in there.
If you don’t mind my asking, when is the angiogram? I can count down with you.
Richard
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