Next angiogram should be in under a month. . . . Well, thanks a lot man - I really mean it.
I’m alright - now, at least. . . I’m living it up until my next angio - no, not that I do anything I use to. Right now, I’m working on completely putting down smoking cigarettes. I quit for years at a time in the past - I think it’s time for another one.
Day at a time seems to be working for me well right now. Me & my son are closer than ever - shoot, that’s a huge positive to me in itself.
I just feel less worried now - really trying to stick to this “if it’s out of your control, don’t worry about it” thing
Next thing I’m also working on is my sleep - having crappy sleep patterns prior to this can’t be helping. Lol
This is very common. VERY.
Some people seem to look for a scar or a limp or something physically identifiable. The line of “…but you look OK…” was infuriating. My common response was “Well, you want to have a look from this side…” it often stopped people dead in their tracks, but what they can see is nothing compared to what we are managing and although many mean it with the best of intentions, I don’t need nor want their judgements.
I have often said sometimes it would be easier if I’d lost a limb, people would be able to see, but being invisible it’s easy to judgements.
Trying your best is as good as you can get. Some days my ‘best’ is far from my normal ‘best’, but some days that’s as good as it gets.
It really showed me some things about people that I did not want to see - some quite the opposite. Unfortunately more of the 1st than the 2nd - but, this goes for anyone living with a not so visible illness.
But, I’m not stopping giving it a 100% until I can’t < preferably a long time I’m the future. Lol
I really do feel like the things that happened prior in my life were meant to prepare me for this - sounds quite fictional, that I kno. . . But, my life has been filled with too many coincidences for them to be coincidences.
I have always asked for the strength to keep going, not for things to be easy. . . Well, apparently I’m stronger than I thought - because, things are def not easy for me at the moment
It’s funny you should say that… …me too!!!
For years my symptoms were listed as ‘all in your head’ (No pun intended) like I was imagining it all. If I was imagining I should have been able to imagine it all away. There were signs something wasn’t right, but I learnt to shut up and ignore it all, pushing symptoms away.
I got myself a qualification and started teaching people with disabilities independent living skills, never thinking that I’d end up being the one with the disability, but here we are. Although I was the ‘teacher’, my former clients taught me SO much about being adaptable in the way they managed and I still use many of those skills today. Is that just a coincidence?? I think not.
We have to learn how best to manage all of this for ourselves and not for anybody else. Others may think they know but as another member used to say "You don’t know it until you have to live it’.
I’m not going to exactly say that I am happy this happened. . . . But, if it wasn’t for this happening nothing in my life would have changed. I had some serious problems going on, but I pushed them off because I kept everything in my life working like well oiled machine at any cost. I can’t exactly say all of this is for the best of things just yet - But, what it really showed me is people’s true color - the real thing, most pure - that’s something not easily obtained.
So far, I am battling through through this one day at a time - one root canal at a time & whatever else it takes. My son is my #1 reason to keep going - it’s hitting him hard, but as long as my ass stays alive(which at this point sure looks like I will for a while) it will be for the positive
Everyone else that I personally know(for the most part) - well, I changed my mind. . . .People were so different when it was easy, now that I am barely managing to handle myself at times - no one is around - No calls, no texts, no visits
I can’t sleep, my sleeping med doses are climbing & I don’t exactly know what to do, I don’t get running thoughts - I just lay there(my mom had severe sleeping issues all of her adult life & refused all meds until recent years). . . . But, I’m not stressing - after going through the pain of a brain hemorrhage for a week & being told I’m fine - there’s not much I can’t take on - def wouldn’t like to tho. Lol
A lot of others say that they found out who their real friends were when this happened. Make sure to keep the one(s) who are still standing by you. It’s a big shock for you and your son, I’m sure. I’m pretty sure my son was somewhat rocked by the idea that I had to have what is effectively brain surgery, though I didn’t have the bleed like you.
Are there any things you can do to reduce any of your worries? I’d say if not, just try to dismiss them as stuff that is uncontrollable. If there are things you could do with some, put them on a sheet of paper. Rank them up the page as to how much they affect you and across the page how difficult it would be to do something about them. Then, start to deal with the easy-to-do but big hitters and move across the page into the more difficult to sort out. You’ll probably never get across the whole page but by knocking off at least some it might help a bit.
Well, there aren’t many - I think I mentioned it above somewhere. But, all of “us” die young - if not one thing, it’s another I have had a solid half dozen people just vanish from my side in the last few years. It’s been very hard even before this happened - but, ya kno what - I’m stressing, but on another level - I’m not letting personal nonsense effect my blood pressure - I check
Hey, if you can check my last post that I made on another thread - see if you have any input
And, all of u - seriously, thank you for the support
I saw that. One of the guys in that thread was a dural patient like you & me. He spoke to his doctor about it and his doc said “give it at least 6 weeks post op”.
I’m not sure whether Viagra puts your blood pressure up or not; Merl was saying it might be ok or even beneficial. Anyway, overall, we don’t know and if you’re concerned, it’s the kind of thing to discuss with your doc. Don’t muck up your brain for the sake of s.e.x. is how I see it. It’s too important not to have another bleed.
I’d discuss vasodilators with the doc as well. While the lower BP seems beneficial, if it is opening up your glued arteries, it might not be. I’ve no idea. Always ask important medical questions of your doc.
Viagra & Cialis actually drops the BP since it dilates the arteries/veins
Well, some things in life to me - are on the same level as living. I will def pull off the vasodialators now - but, shoot - been using them for the last 2 weeks. I doubt I’d have another bleed - according to what my neuro explained. But, messing up the procedure a bit - well, that’s another story
I’m off all of my BP meds(the side effects to me are horrendous) and I use celery juice & beet juice to keep my BP fairly leveled - stays at right around 135/75 now
I’m quite certain I know the answer - But, I will refrain from asking until my next neurosurgeon appointment after my Angiogram - like I said, one day at time
I didn’t even think of this until today - I been using that stuff at low doses(25mg) for the last decade along with being on TRT(testosterone replacement therapy) - I’ve suffered from low test for over a half a decade - from my mid 20’s to about 30(my total test was in the low 300’s) - Then I jumped on, it worked - I could actually do “stuff” again
But, man - I’m feeling like I’ll be getting my first crotch rocket after my next follow up(I said I never would, since it’s so dangerous). . . . Guys having a mid life crisis, please. . . Try this on for size. Lol
If you are EVER changing/altering medications YOU MUST ALWAYS consult your Dr.
Some meds can be beneficial, some can be risky and some can be down right dangerous.
You have an underlaying condition, you are probably on some sort of medication already?? Adding any other med or supplement can have some catastrophic consequences, especially if you are unaware of the chemical interactions that may occur.
PLEASE (I CANNOT SAY IT LOUD ENOUGH) WHEN IT COMES TO MEDICATIONS, PLEASE CONSULT YOUR DOCTOR
They are trained to know which meds are a bad mix and BP meds are one of those you’ve got to be REALLY careful about.
Hopefully I’ll be back in a while - But, some things just have more importance than others to me - smoking cigarettes is not one of them. Lol. . . Dropping that junk. But, if I’m healthy enough to be with my wife - well, that has more importance than sitting on the couch full of meds watching TV. . . Thank you all for the amazing info & understanding. . . . I hope all goes well
I have had noise in my head (but only occasionally voices) for going on 11 years now. After 2018, the volume got so much louder that it gets in the way of hearing. At a restaurant with my brothers and all of our wives, brother says something to me, I pop out my hearing aid and say, “Uh Ron, don’t take this wrong, but the voices in my head are louder than what you just said. Can you repeat it?”
Get some really strange looks with that line.
How do I get to sleep?
pharmaceutical assistance - at times I’ve been using Benadryl, any sort of cough and cold meds that make you drowsy. Also used Clonezapan, Ambien, trazodone (though that works well for my PTSD son, didn’t do anything for me).
Music - music that you can play loud enough that you hear it over the noise in your head. Play with the timing - do you play it all night, for 2 hours, for 15 minutes whatever gets you into a relaxed state of mind. I find once we can get our brains relaxed, sleep comes easier.
Don’t go to bed until you are dead tired. Yeah, there have been some times where I have slept sitting up on the couch with the TV playing until 4:30 in the morning, hey if ESPN doesn’ t keep me awake nothing will.
Keeping your head elevated - as much as you can. I won’t tell you how much of the last two and a half years I’ve been sleeping in the recliner. Not the most romantic, but we just celebrated 35 years together and I vote for more - and you do what you have to do.
“In sickness and in health,” any of us here who are currently in the marital arena know that this is the sickness and health time - and you do what you have to.
M, I am so grateful that I saw your message here! WAY BACK, in 1990, I, also, went to the BNI to get my very large AVM fixed. Just my opinion, but, if I were you & your wife, I would just keep bugging the BNI to get more answers!?! What I TRULEY know, is that recovery takes TIME, & our BRAIN does not get ‘fixed’ over night! In my eyes, after 2 strokes during 7 brain surgeries, I realize I will recovery for the rest of my life. That is SO, OK, by me! I am Blessed for what I have accomplished, & I believe you might feel the same? JUST BE PATIENT, search for all the small or large POSITIVES in your recovery, & ask GOD for help!
Elizabeth (Lisa) A. Stuckel
Thank u for all the info, def hard to process this one for me
Got my pre op done today, next angiogram / possibly another em o is scheduled for next Thursday
I like what u said - they def didn’t let us know darn near any of this - no EVER mentioned that I will most likely need multiple procedures < does it matter? Well, not really - but, it’s valuable info
I’m glad that I went back into ER and talked to the 2nd down neuro(I don’t wanna mention names on here) - he broke this stuff down to my level. . . It’s what actually made sense. Everything else has been info I found on my own
Mike, we’re with you on this. Really glad you went back and asked some more questions: sounds like it helped.
I assume the plan is that Thursday is angiogram only and if they see any work still to do, that they’ll then schedule a date with you for a further embolisation? I assume also that that is how they looked after you before: step 1 MRI or CT scan; step 2 angiogram; step 3 embolisation.
Going to hospital for an angiogram is a long day but I got nicely looked after for the day. I’m not very good at taking time out for myself and I look upon haircuts and hospital visits with the same view: that these are periods in time when you can only take the time to do either the haircut or the hospital visit: it’s not really possible to do anything else at the same time: so my approach is to just accept that I’m having some time off the mad, mad rat race and it’s time for “me”. In the case of a haircut, it’s an enforced 20 minutes of doing nothing. In the case of an angiogram, it’s most of a day off. But I looked upon it a bit that I don’t give myself much time, so I had a bit of downtime due.
If you’re worried about stuff, talk to someone, either here or at home or work or at the doctors. If we can talk you through one worry, I hope we might improve your day.
Negative - I’m scheduled for an angiogram, possible embo on the same day
I either get to wake up ok, or - well, we know how an embo goes
It’s aight - I just recovered & got my tooth fixed. . . When I spoke to the other neuro, he said: “we’re shooting for 95-98% occlusion” - I asked, no 100%? - he said; “of course, we’re hopeful”
From the sound of things, they are planning for 1-2 < this also seems like today’s average of 100% occlusion - 1-3 embolizations to get 100%
I’m hopeful, if not - well, I’m barely ready for another one < def don’t prefer getting another one. . . It’s just a bit more difficult this time, since I feel very near 100% & I really don’t want that messed up. . . But, I feel that they need to check their work & possibly do a tad more to embolization < otherwise, I’d skip it & not care
My first time in hospital was a combined angio and embolisation, same as you.
The main thing, I think, is that if they find you’re all ok, they won’t put you through the embo. An angiogram on its own is much more straightforward and pleasant – no awful taste in the mouth as there is with the embo.
It’s efficient but I can see why not knowing how many days you’re going to be in for or whether you’ve got to go through the embo again is unsettling.
That’s what mine was supposed to be. But, they split it due to the difficulty of my AVM - they aren’t expecting it to be 100%, neuro told me 95-98% occlusion(I asked, no 100%? - he said, possible & we are hopeful). . . . . Hey 2 embo’s and to be able to walk & talk again - well, it sounds like a fair trade - actually one, I feel great now - which is kinda making it difficult to wanna go through this - but, I know it’s the way to go - these guy’s seem to be the #1(maybe 2) leader in Onyx embolizations
