Hi! I just discovered this network and I am so glad that there is a place where I can go to talk to people that have had the same problems that I have.
Now, on to my story. It was spring break in 2021, and my family was sick of being cooped up in the same house with each other for nearly a full year. So, my dad went on a work trip, me and my sister went to Florida to visit our family, and my mom stayed at home. I had a great time while I was there, we were going to go fishing with my cousins the day it happened. On April 1st, 2021, I had a seizure and a stroke because an undiagnosed AVM in my brain burst. It took about an hour and a half to get me to the hospital, no clue why. (I was a little bit preoccupied doing something else) I was in a coma for about 9 days, and I had to relearn how to walk and talk. I was in the hospital for three months, and Iâve had the surgery where they go in and do an angiogram but they also put glue on the bad vein. (I canât remember the name at this moment)
(Unrelated side note: I have had so many FREAKIN angiograms. I dislike them but I know that they are definitely necessary)
The glue didnât hold. My brain is slowly bleeding and my spinal fluid is getting more bloody every day. So, in two months Iâll have an open skull surgery to remove the leftover AVM. Picture attached is of my brain scan post-bleed.
It is great you found us, too bad there was a reason to look. I think you will find a tremendous amount of support and experience in all areas from a great group of people. I have had gamma knife, we have lots who have had gamma, embolizations, surgeries and monitoring as strategies to manage. It would be safe to say the majority of us brain AVMers have had an angio. Personally I have had 3, and it is also the access route for embolization so those numbers are higher for many.
Where are you having your craniotomy? Do you know the size of your AVM or what is remaining to be removed. It is not uncommon to do embolization to impact some of the flow prior to surgery to reduce the risk. Donât be shy at all to lean on us here, we have a pretty good understanding and know the impacts extend beyond the AVM itself. Take Care, John
Hi @emeraldbrody and welcome! This is one group it would be nice to never know existed but so grateful they do! Iâm sorry your AVM ruptured if I understand correctly. Having had 3 separate AVM and a stroke rupture myself, I can sympathize and empathize with you! I want to hopefully encourage you in saying youâre still here! That means you have the opportunity to warn others of the existence of and dangers of AVMs. I wrote a book, you can find it in my profile or visit www.mymalformation.com. In it, I detail some 22 years of life after an AVM bleed and the ups and downs I wish the doctors could have warned me about not the least of which is to get scanned! I hope you can find help and encouragement and I hope the terrible tragedy of a bleed can be utilized as a launching pad for you to do amazing things because of your unique brain and not in spite of it! Blessings as you continue, grace & peace as you go!
So, Iâm having my craniotomy at Childrenâs National hospital in Washington, DC. Iâm not sure of the size of the AVM, but it isnât very large, or very small. Itâs medium sized. I donât think my AVM got embolized, because it was very close to other, more important parts of my brain. Itâs kinda in the middle part of my brain, not on an outside easy to reach area, so I canât have a very easy surgery to remove it. Will update once I have the proper thoughts and ideas in my head.
Good luck! Weâll be interested to know how you get on and I hope it goes really well!
You probably did have an embolisation, which would be the glue you referred to. Sometimes embolisations include coils or other embolic material but mine is just glue.
Thank you, Paul! (At least, thatâs what I inferred your name was from the website) That means a lot, I will try and save up some money to buy your book! It sounds like a great story. Thank you for the wishes!
Welcome @emeraldbrody to the family and sorry to hear about your AVM⌠Please keep us posted on your journey and rest easy knowing that if the medical experts are comfortable operating then they must be confident that they can get to it and get rid of it with minimal complications⌠I suffered a bleed and had surgery near 12 years ago now and there isnât a day I am not reminded of my journey and challenges BUT I got through it and still here to tell my story like so many others⌠God bless!
Chiming in a tad late, Iâve been preoccupied with life & havenât been on here much.
Read your post & profile - like Richard(DIckD) mentioned. They attempted an embolization(with one of the available materials, there are a few). Sounds like it didnât take - so, they are going in for a craniotomy - all of my medical experience is from myself & here.
I had a hemorrhage in July of 2020. Things didnât seem so well for quite a while. I had an embolization with Onyx Copolymer.
Same here, oh those angiograms - I had about a handful now.
But, have been âmostlyâ symptom free here lately.
Wish you well! It definitely makes life different to say the least.
The symptoms I have currently are clonus in my right side muscles (fingers, foot, calf, thigh) and difficulty finding words and pronouncing them. The part of my brain that was affected was the speech part and a little bit of the motor part. (I had a Left Parietal AVM burst)
I hear that clonus is going to stick around throughout the rest of my life, and that sucks. Same with the word finding skills, that supposedly wonât improve but I donât agree with that.
We are hoping for a mid-March surgery date, as that is the closest non-emergency appointment that my neurosurgeon had. If something were to go wrong, such as the slow leak getting larger before my surgery date.
Kinda sucks that you have to wait that long, but at the same time not - Iâm not gonna sugar coat it or lie, a craniotomy scares the crap out of me. When they did my embolization it went somewhat the same way - âweâre gonna tryâ - but, no promises. Their saying was âbe optimistic, but realisticâ.
After it was done, I was a mess for months. It started getting better after I was cleared that it was 100% occluded at 5-6 weeks. But, even then there were no guarantees. Afterwards Iâve had about a 1/2 dozen visits to the ER for sudden stroke like symptoms - each one being a false alarm & related to CNS damage.
Itâs difficult to say, but it does get better.
Even now Iâm full of ânot normalâ sensations. Like yesterday, the left side of my head where the embolization was done was just burning after a workout - like I had decent sun burn on the side of my head.
Itâs a part of the new normal now for me. It is what it is, considering.
Yeah. Iâve been weighing out whether or not to freak out about the surgery, because it could very well save my life, but the fact theyâre cutting into my skull to dig around in my brain isnât very comforting.
At least I know that the neurosurgeon is world renowned. He just got back from a trip to the Philippines, where he performed many neurosurgeries. (Doctor Robert Keating, for those curious)
The fact that the AVM wonât regrow after itâs been removed is comforting, because itâs trying to do that for a while now. But yeah man, thank you for the wishes!
We are all scared of brain surgery. We are in this together.
There are lots of people here whoâve gone through the same as you, so you can chat to us and understand that sometimes people come through the surgery and practically have a miracle cure, some people come through and have scary symptoms that last a short while, and some people have issues that carry on much longer.
If youâre going to need brain surgery, the technology and knowledge and skills today are better than they have ever been, so it is better to be in this position today than it was 10 years ago or 20 years ago or even longer.
Hopefully we can show you, by being a bunch of people whoâve gone through much the same stuff, that you can get through it, too.
Anything we can do to help, just say. We all understand the OMGness of this.
Thatâs definitely a fact - weâre on the medical frontier of neurosurgery
The technology of today is out of this world compared to even a decade ago
Embolizations werenât even considered a permanent repair up until 5+ years ago or so.
And, thatâs why this community does have some weight to it - it shows that there are and have been quite a few people going through the a similar event - and, everyone is different. Some things I have read on here are nothing short of amazing - some, well - quite the opposite
OHH YEA!!! I couldnât agree more. âThat thing in there, my brain, makes me âMEâ and you want to do WHAT???â I had a huge battle with myself prior to my craniotomy ie Do I or Donât I. The reality for me was I really had no choice. It was either do it and fix it or have worsening symptoms for ever, which were chronic bad anyway.
Iâm a bit of a control freak, especially when it comes to self. I need to be in control of me and yet here I was having to hand all of that control over to someone else, coming to the realization that I had no choice and I had to give control to the medicos was a bitter pill, but one I had to swallow.
Others here have spoken about the advancements in technology/methods and I must agree. Iâve had a few neurosurgeries, my first back in '96. The processes and procedures they implement today have improved 10-fold. The progression in neurosciences has been massive and theyâre still learning more every year.
ABSOLUTELY. As I often said to others, âWe know because weâve lived it tooâ.
A little update; I am having surgery to remove it (craniotomy, I suppose) in June, unless my condition worsens. If my condition worsens then weâll get it done ASAP, but itâs alright for right now. Fun stuff
Fun?? Hmmm, Not quite what Iâd call it. you must be hard up for fun
But it sounds like you have a plan and often thatâs 1/2 of the battle. For some people they get the âWait and watchâ approach with no plan, unless something occurs. Itâs a bit like walking around with a timebomb, never knowing when/if⌠every ache, every pain and youâre question yourself âIs this it???â
Having a plan can often give us some peace of mind that it will be dealt with. âTryâ to relax going into it and âTryâ to relax coming out of it. I say âTryâ because Iâm a ball of stress going in and a damn nightmare on the other side (I donât know how my poor wife puts up with me sometimes). I do try to relax but Iâm yet to succeed.
Put things in place for your recovery. Have a dark, quiet space, just for you. Somewhere you can isolate if needed. Post craniotomy I found too much stimuli overwhelmed me. Bright light, noise, some touch and some movement could overwhelm my system, so I had to limit and manage my exposure to these. If you have foods you like, stack your fridge/cupboards. Stock up on necessities. We all hope/wish/pray none of it is needed and you bounce back relatively unaffected, but on the off chance that your bounce is a little more subdued or non-existent, having things setup prior can be a HUGE blessing. Trying to set things up when you are unwell/in recovery can be a nightmare.
Post surgery is a time to be kind to yourself. Listen to your body. It will give you signs when enough is enough, but only if you listen. Recovery takes as long as it takes. Drâs will often give us the ânormalâ 6-8week recovery timeâ and for muscle/bone 6-8weeks is about right. But with neurology 6-8weeks is just the start of the recovery. Do Not and I mean DO NOT be pushing your recovery. Push your self too much can do you more harm than good. Slowly, slowly⌠No, I mean S.L.O.W.L.Y. is the best way to recover from neurosurgery.
