Quantcast

AVM Survivors Network

So, what now!? Post AVM Embolization

Yesterday was 2 weeks since I had a AVM Embolization(with Onyx, from what I gather) for a Left temporal-parietal IPH/SAH w/L occipital dAVF; POD1 s/p trans-arterial obliteration of dAVF(other paper says dural AV fistula)

This was done at Barrow Neurological Institute here in Phoenix. . . . I feel good(I say amazing, considering what happened) - but, no one has called me - I have had my wife call them & be placed on hold for a 1/2 hour at a time and that’s it

I feel very physically intact(amazing) have odd physical feelings here & there around the Embolization area - but, no aches. I have not taken any meds, just get a tad more tired than before this whole Episode

Any input at this point would be great - mentally, I am mess & have no clue of how to handle this or anything else in my life - it feels like a dream, but it was def real

1 Like

Mike,

Welcome! You’re among friends, so share anything you like. It’s what we’re here for.

I don’t understand many of the abbreviations above, so feel free to expand on them if you know what they are!!

I had a DAVF that was pumping into my right transverse sinus back in 2016/17. I had it embolised (with PHIL glue, rather than “onyx”) in April 2017. Like you, it felt pretty weird beforehand and it felt pretty weird afterwards. Indeed, I’d encourage you to be really, really patient with yourself about your recovery. I’m some ways, recovery from an embo is pretty quick – you’re in and out in a couple or three days – but actually, getting used to the redistribution of your blood pressures in your head (for me) took an age. Months. Even over a year.

So… welcome. Tell me anything you fancy and I’ll share my story with you, if you’re interested.

Very best wishes,

Richard

2 Likes

What changes have you noticed? Might as well ask

My other prob right now is the neuro team that did my work isn’t the most responsive

I have no clue on what I’m allowed to do or not - physically

I feel fine, shoot better than I have for quite a while - I didn’t think there was much chance of making it back from where I went.

I feel like the walking dead - I seriously feel like this should of been it - no, I am not suicidal at all. I was living the life for the last 2 decades - now, I don’t know what’s going on

The wife & I thought it was a tooth infection. It happened while we were on vacation, made it back - went to the dentist, he got through 1/2 of the root canal before sending me to ER saying there is something much more wrong. Went to the ER & got the news

And, now I’m freaking out about my 8 year old son being born with this shit(pardon my language) - my wife is trying her best, but she’s not great at sharing feelings when it comes to this - we were running full speed, then this

Mike,

There’s at least a 50:50 chance that a DAVF is an acquired thing rather than a congenital thing. And the views of my neuro (not that I rated him) were that a familial link had not been demonstrated. I believe that this is because of it being a DAVF in my case. If you’ve got a DAVF then I assume similar for you. My interventional radiologist who did all the work was a very sound guy. Trust him completely. The neuro less so.

I think it is completely normal to feel that life has been severely diverted when this sort of thing happens. All sorts of worries that you’ve never had before come forward and it is a complete shock. So take it from me that to feel completely out of it about it is normal. It is.

Post op, I didn’t feel like I’d got everything “fixed”. I had quite a loud pulse (different from the pulsatile tinnitus I had pre-op; pulsatile tinnitus is like a whooshing noise that I could hear because my DAVF was pumping blood into my transverse sinus and then it flows through the sigmoid sinus past the ear) but the ongoing pulse made me feel that there was still work to do in there. I think I’ll have to link my story to you because I forget how I felt post op but I can say over a couple of months I felt pretty serviceable. Not perfect but ok. After 3 months, I still felt a bit dizzy but not enough to be a concern re driving and I was allowed to resume driving. I then progressed slowly for about 6 months before having a day and then a week when I had quite a dizzy spell and felt I was going backwards, not forwards, enough to persuade me to the doc and ask if everything was still ok. As it turned out, I was doing ok but it was not always a progress. Sometimes I regressed a bit.

So be patient with your recovery because if you follow my pattern, you’ll be getting better and a bit worse and better and a bit worse for maybe a year or 18 months.

What I’d say is it is really early days for you. You need to take it quite easy at the moment. Go for walks. Do very moderate exercise. Very moderate. I played a game of badminton against my son perhaps a month or six weeks post op. I really don’t think it did me any good. I went back to the gym (and I won’t have done anything serious in the gym: I’m not a gym person generally) maybe a month before starting to regress a bit. I think I overdid it, even doing fairly normal stuff. Just take it easy.

My interventional radiologist did encourage me to put the episode behind me and “rejoin normal life” but I seriously recommend you do it really steadily.

Hope this helps!

Richard

1 Like

Link to my op and how I felt for the first 3 months… My Update - Dural AVF Embolization

And my later “degradation” which turned out to be me just not being patient enough with progress… Third Stage - Degradation Post Embolisation?

I can tell you that three years later, I am doing everything in life I would have done pre-AVM. If I listen carefully there might be noises there that didn’t used to be there but if I ignore them, I can carry on life untouched by the events of 2016 and 2017.

Mike,

Your profile says you had a bleed. I didn’t have a bleed. I would say that that will have affected you a fair bit, so another decent signal to expect recovery to be quite some time.

Best wishes,

Richard

1 Like

Sounds quite a bit similar to mine. . . I did have a pulse that I heard in my left ear - the side with the AVM. . . I have def been pushing myself way too hard & I know it - it’s difficult for me to turn down. How long post the 1st procedure did you start to experience this? I still feel A ok - no pulse in my ear at all, but some times I do hear a running water like sound on my left hand side. But, from it sounds like - I need to let this set much longer. I haven’t done any wild activities - but, that’s by my standards

I’d say pretend you’re 60 for a few months, not in your 30s. Seriously.

I only had the one embolisation, though I thought I might need a second run. See the links above.

I assume you’ll have a checkup with the neuro in a couple of months, same as with me.

I’m reading brother, I’m readin

Totally got u & glad to hear this from u - I am A ok with turning myself down, not easy - but, will b done

Any other advice, is greatly appreciated - you have given me more info than all of my neuro surgeons combined already

1 Like

It’s late here. I’ll catch you tomorrow.

Oh, no problem - Thank you so much for this info! . . . Get back to me whenever you can. Read both threads -

Hey Mike,
Welcome to Ben’s Friends.
I must agree with everything DickD has posted and say recovery takes time. Post craniotomy I had a whooshing sound in my head which was amplified when I was walking, like the fluid was rushing from one ear to the other. Very disconcerting. But over time (years) it has reduced, it still messes with my balance but the whooshing has reduced.

I must say you sound a bit like me, previously I had 2 speeds, full tilt and stopped. The whole idea of pacing was very foreign and I HATED it. I tried to convince myself I was building stamina, the reality was more like I was driving myself into the ground. My body was giving me signs, but I ignored the signs and just pushed harder. Ahhh, don’t do that. I pushed too hard too soon and did myself more harm than good, requiring further surgery. Listen to your body, it will tell you. But only if you listen and read the signs.

I have a bit of a ‘Love/Hate’ relationship with the neuros (I love to hate them :wink: ) Some are great… …in the operating theatre, but their human relation skills are next to nil. I had one tell me regarding my symptoms “Well, that can’t be happening…” but it was. I have enough of an issue accepting all of this for myself, to then have a neuro dismiss my reported symptoms. I was not happy. He then stated "I’m the dr, I’ve done years of study, so I know… …you, you’re just the patient. You wouldn’t know…’ and that made my blood boil. You can read all the textbooks in the world, but the reality of living through all of this is no simple thing. No book education can ever give the education reality of living it can.

And then there’s the psychological side of it all. I’ve said it before and I’ll say it again:-
“If anybody, and I mean ANYBODY ever tells you this is an easy thing to deal with, they have NEVER been in this position. They have never had to deal with anything like it, so how would they know?”. I have heard a lot of anecdotal theories ie 'My friend ‘John’ had one of those and he’s OK…" But no 2 are exactly the same, with exactly the same symptoms, treatments nor outcomes. So IMO trying to draw a straight line between patients and symptoms is near on impossible.

For me life has changed (and not for the best). My acceptance of those changes has been a very bitter pill to swallow and for a long time I did not want to accept it all and I fought against it. This did my psych more harm than good as I could not achieve my own goals, so I pushed harder, which increased symptoms making it harder to reach those goals, so I pushed harder… ….and around I go again. The frustration with self was HUGE. I was a damn mess. I had to learn to accept and I didn’t want to accept ‘This’. Who would? But the reality was I had no choice but to accept.

As DickD states “I’d say pretend you’re 60 for a few months, not in your 30s. Seriously.” And I SERIOUSLY have to agree. You’ve had some major neurosurgery, give yourself a break. I only wish I had. Seriously.

Merl from the Moderator Support Team

2 Likes

Hey Mike, welcome aboard. My case is also similiar to yours. Diagnosed @ age 13 but didn’t require treatment until age 35. No rupture here. 4 embolizations 10 1/2 years ago. Check out my many posts when you get a chance. BNI is one, if not the BEST, place for AVM treatment. My “whooshing sound”, or bruit, went away after my embolizations. I was initially set for additional treatment after my embos for resection of my AVM, but my neuro team deemed it too risky. Plus, my symptoms that led to my treatment completely disappeared after my embos. You’re in the right place. Btw, I’m 46 now and doing well. GK

2 Likes

Sounds about right, wound myself up in the ER yesterday morning. Had a odd pain the night prior on my left side of my head & went into a few minute seizure. . . Had a CT done & of course got more BW done. . . . She’s holding solid, from what they can see on a CT. . . . Had an excellent talk with the lead neurosurgeon at BNI. . . . Really put a lot of things into perspective. According my RN, he is the best neuro she has worked with in terms of patient communication. The guy sat down with me for a solid 20 minutes and answered every possible question I could think of:

Relax - it was clearly hard to have this guy tell me to relax, but I get it for sure
Apparently I can drink alcohol with this thing in my brain
They used Onyx 18 & 34 - a tad over 3cc’s total
Each vial set of Onyx is about 9,000 Dollars
My seizure was most likely wasn’t an exact seizure - but, more of a neurological hiccup < his terms
Onyx dries very hard - similar to JB weld
The light whooshing sound in my ear is - well, it happens
Next visit is in a month - for an angiogram
They are going for complete obliteration - he says the neuro that did the work is one of the best for one time full repairs
If not fully obliterated they will most likely go in for a 2nd to complete the job
My case was definitely one of the more severe ones he’s seen - apparently a dura fistula is not that common
From what he says seen, a full Onyx obliteration tends to stay intact. . . the one he’s been a part of and seen are holding up for over 5 years

Apparently I have seen symptoms of this for well over 6 months - I have had a pulse in my left ear(side with my AVM), odd migraines, lightly blurred vision on the outside part of my right eye, and last but not least - I had spinal fluid shoot out my nose when I was at the gym - I had no clue what it was, but it did not resemble mucus. This was the only time it happened & I never thought much of it - Asked the neuro about that also, he said no biggie as long as it’s not recurring

That’s about it - relax time. . . .lol

Well, I agree with Greg, Barrow are top notch internationally, so you’re under the best care.

Take it easy and relax. Personally, I’d stay off alcohol for at least a couple of months.

1 Like

Ehh, I’m referring to booze to booze for the long term - it def seems like a good idea to lay off for now. . . . Although I did have a sip off my wife’s margarita - this is the longest I have not drank in one consecutive time since I was 20 or so. . . . It’s def a change, but I seem to be managing better than I expected

1 Like

I don’t know if anyone can reply to this - But, I was in mid root canal when me & my dentist came to the conclusion that this was no tooth ache. He still needs to finish the root canal(it has a temp filling) & it’s a three hour drive for me. How soon can I go get this done? . . . . That’s one thing I did not ask anyone on my medical team. . . .

I’d ask the nurses in the neuro team and the dentist but I assume straight away. Other than the fact that your head is smarting from a bit of an invasion, as long as you can take on the discomfort, I’d go for it.

If your DAVF or any other part of it is near your mandible, then it might be a different answer… hence worth asking the question, especially if your dentist decided there was more to your condition than the tooth. Whatever it was that he/she saw might be interesting to understand.

Nah, it’s not that exciting - my tooth infection & the AVM are both on my left side. We thought the hemorrhage & pain were caused by the tooth infection. I told the dentist about my severe head ache - right away he said the tooth isn’t the likely cause. He went ahead & numbed up the tooth area - asked me if the pain was still there - it was. He cleaned the infection out & closed it with a temporary filling.

And, then all of this started. . . . This year sure is turning out well :roll_eyes: