So I’m back after months of being gone. Sincerest apologies that I keep reappearing when things get bad. I have an angiogram coming up and my Neuro told me that I have high chances of needing a second embolization. I didn’t know how to process it and had to make an emergency appointment with my therapist for tomorrow. I thought I was done after radiation and I had a ticket out of all of this pain but I guess I’m not as fortunate as I thought. My AVM started as a 3.5 cm, and based on my scans a few months before radiation, is now at 1.5 cm. They got the deepest parts of the AVM, and said that they feel confident that they can get the rest with one more embolization but my capacity of trust and motivation is near empty and I feel as though I have nothing left to give. I just thought all the hard parts were over. Should I be weary of a second embolization? Is it harder than the first? I don’t know what to expect and I’m feeling very crushed at the moment.
Others may weigh in with more info but in all honesty I would imagine the second one is no harder than the first and possibly I’d think its easier? because of reduced blood flow already
But I can say with certainty that it’s quite common to require more than one embolisation to try to achieve obliteration
I wish you the best
I think it makes perfect sense to be weary of the whole process by now. However, if you can hang in there, it sounds positive that they will get you sorted (finally!)
You are encouraged to come here and shout up like this. Don’t feel as though it’s wrong to do: it’s what having a space to rant like this is for. It’s great if we can get the good news as well as the less good but this place is exactly a space for you to say “aaaaaaaaaaargh!”
Big hug from me. You can do it.
I’d say something better - but, that seems to cover it
This place is like a club you never actually wanted to be a part of - best way I can put it to myself.
I have no exact idea what made me so lucky so far - to get to where I am with just one shot in the dark. Made by the best marksman of embolization who’s hands I also wound up in, by sheer luck.
Multiple embolizations are a very common practice. When I went in for my follow up angiogram, it was either me going home that day - or waking back up in ICU and going through another embolization. . .I told my wife, if I had a million dollars, I’d give up every cent to go home that day - I cried when they said “we hit complete obliteration” you’re getting out of here within an hour or two - not to mention, I seen the inside of my brain with the completely occluded dAVF on a 50” monitor right above my head.
They gave it to me straight before starting the angiogram procedure - I had a 3-5% chance of going home that day. . . My main neuro said “be optimistic, but realistic”
And, yes - same feeling, family or whomever around me. I’m on this mission alone - although seeing my son that day, boy - had to be one of the best feelings I’ve ever had.
You & everyone else on here - even if it’s something I read the day I joined, are always in my thoughts.
Just try to keep yourself together. . . All the way up until my follow up angiogram I had to be on a decent dose of Valium 24x7. I’d just freak out & my blood pressure would spike.
So, if you’re doing better than that mentally - you’re doing better than I did.
Hearing this shit is so hard for me - but, I’ll never forget what I went through.
I found one of the most difficult things for me, and Mike really hit it, and that is the not knowing. I was on edge leading up to every MRI and angio, and I felt better after “knowing”. This includes my second angio when we were going to decide if it was craniotomy or Gamma Knife for me. The third angio, and waiting for results was tedious. I was fortunate on that one and gamma had worked. The unknown leading up to it was very difficult.
Never feel bad about “reappearing”, its why we are all here, to support, help as best we can and pass along our experiences. I’m hoping for positive news from your angio, with a guaranteed resulting of knowing whats up. Take Care, John.
I’m back, sort of. At the local rehab hospital recovering from two additional embolizations. Long story, don’t have time or emotional strength for more at the moment.
It could always be worse. I’ve had embolizations or surgeries or both in 1978, 1886, 1987, (x 9 ) mid 90’s (date escapes me), 2009, 2018, 2021 (x2)
If my counting is right, that makes 16 embolizations - as in 16 separate treatments in the last 42 years.
I’m still here. I still want to get up most mornings. I still thank God for my wife and five wonderful and sometimes horribly obnoxious kids.
More later, suppose to go home tomorrow. I have spent close to 40% of 2021 in the hospital and only 4 days of it was planned.
To quote our dear friend Mike (multiple times…), “shit” shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit shit.
You sir are made from human grade titanium steel. . . With one embolization + hemorrhage, I felt like I got shot out of cannon, then splattered on the walls of BMI ICU
Seriously, after reading everything on here & going through this, even once - I have completely changed my perspective on sheer human strength.
Love this! He is!
(He’s mostly glue, tbh, but the rest of him is made of amazing stuff!)
Love that whole post!
Can only speak as a mom helping my 15-yo through the process, but he goes in for his 4th angiogram with embolisation next week. The process and recovery for each has been nearly identical, except that we have learned to ask for little tweaks in the IVs and A-lines that have been less irritating for him.
Whilst it’s sad circumstances and I feel for you, you sir really are a legend and I wish you the best!
Well, apparently today’s copolymers seem to be possibly even stronger
You make me smile. As I sit in my hospital room waiting for the world to wake up so I can check out, go home and take a nap in my recliner, in my home, with my dog, surrounded by my family…
Oh and don’t forget, in addition to the glue, there are a LOT of coils and such in there too. The speech therapy people did a swallow study yesterday (exactly what it sounds like) to make sure I’m not at risk of pneumonia due to food going where it shouldn’t (I’m not) and they got some amazing pictures of just how much stuff they have put in my neck and head. And to think, it’s all to make sure I don’t sound like I’ve spent too much time in the pub with Sir Richard tossing back a pint or two or…
blushes and tips his hat
Go Mom! Surprisingly, I can still remember some of the treatments from back when I was his age. Mom plays a HUGE role in giving him the strength to walk this. Tell him we’re cheering him on.
He leans on you, you lean on us, and the circle repeats itself…
(Guys, we need to make sure that we remember this is @Bellnucci’s “OMG!” thread and it is to Bella that we turn our thoughts and support)
Still thinking about you Bella and crossing my fingers that things go well. When is your angiogram?
Lots of love,
Thought no 2 for today…
When I had my embolization, my doctor said he might get it in one or he might need two approaches to the target. As it happened, he got it in one (so far as we know!) but I have to say, I did find the experience a lot less worrisome than I thought, so if I needed a second shot, I was ok with it.
So I hope that you might borrow a bit of my "ok"ness about it and you’ll be fine. I think trip no 2 should be less of a worry than first time round because you know you got through no 1 ok.
Let us know what happens when and talk about any of your worries.
Please don’t get discouraged
I had three embolizations but now I am obliterated
I was never fan of radiation I think it’s too dangerous unless it’s incredibly small
Embolization is the best science has to offer IMO
As long as my memory serves me as it has,
I don’t forget anyone on here, everyone is in my thoughts - like I said, it’s like small knit club that has no invitations & no one actually wants to be a part of
It’s the reason I take this place is small doses sometimes . This isn’t just close to home - I have a lifetime membership. Lol
As @mike_az_21 and many others have said, I too take this place in doses. Just like too much google searching can lead your mind to wander far too deep. I have felt bad myself for reappearing from time to time and not messaging those who have taken the time to write me. It happens to all of us You are not rare by any means with having a second embo. When are you scheduled for this? It’s understandable to feel crushed and hopeless. You are not alone at all and I along with everyone here will help however we can.
I have a DAVF and going in next week for my first embo. I’m scared, nervous, afraid for anything and everything that can go wrong. I sometimes feel I’m so different from everyone else with all of my medical issues that I tend to keep things to myself because I don’t want my friends to think differently of me. In addition to my DAVF I have an inoperable brain tumor to live with the rest of my life until something changes with it. So yeah there’s that. It’s just my life and I’ll always have medical issues lingering over my head. I can’t though let it drag me down. If something comes up I deal with it then, otherwise I pretend I don’t have any issues and live a happy life. We can be incredibly strong and courageous, it’s amazing as humans what we can go through and still come out through it all.
Stay strong and we will all be thinking of you throughout your process. Keep all of us up to date!