Today I had my angiogram results - I will have embolisation in 3/4 weeks. They say it is 90% chance they can seal it off in one go, but due to the placement I have 5-10% chance of stroke and severe disability. They said they would have recommended Gamma Knife but I have a ‘bulge’ that they are concerned about and therefore highly recommend embolisation.
To be honest, from the previous chats, I was pretty sure they were going to say gamma knife - so that is what I have been asking about and researching… so now my question/ask to you all is… what were/are your experiences with embolisation?
I am someone who likes to know all the information (good and bad), so please don’t hesitate to share, even if it isn’t a good experience.
So my answer is that it was ok. If there was a route of brain surgery that I had to go through, embolisation was the one I was most comfortable with. My doc thought he might take 2 goes at it but he glued me up in one. Having gone through it once, I thought “If I need to do this twice, I can handle this.”
It’s not entirely easy and I worried my way all the way there and most of the way afterwards but I think it’s perfectly gettable-throughable. If I can do it, so can you. Honestly. And ideally, you’ll worry about it less than I did.
It took me a loooong time to feel “good” afterwards. I was “ok” pretty quickly but “good” took a long time, so my advice there is to be really very patient with how you get on. So far as I can tell, that’s true of any of this messing about in the brain.
There are risks associated with the surgery, so you need to be happy that it’s the right thing to do but how anyone judges that, I don’t know. I was convinced, so surgery was “on” for me and I got through with no deficits. Doc gave me a 5% estimate of “bad stuff happening” (including killing me) so your op sounds a bit more risky than mine, for some reason.
NB everyone is different: your AVM will be different from mine but I hope that by sharing this kind of info, you get a feeling for things. Happy to share anything you’re interested in.
How did you get on with your contact sports questions?
Time doesn’t allow much more right now, but I will be back on here later today (if you haven’t heard from me by tomorrow morning Eastern Time (in North America), pm me about it.
Here’s a very quick overview of my history with embolizations:
next Monday I am going in for what is, I believe, my 17th one in the last 42 1/2 years. No, that is not a typo.
this coming one will be #4 this year.
Of the 17, 7 of them had side effects that didn’t disappear within the first month. Of those 7, 4 of them have been in the last 3 years and those 4 have knocked me out of the work force, put me on disability, impacted my speech, vision, hearing, headaches, hand tremors, weird numb patches in strange places, hair loss, sensitivity to not necessarily “loud” noise but even just “not soft” noise, loss of executive function ability (most of that has come back).
The big embolization in 2018 was done to remove the risk of a brain bleed. Afterwards, my doctor said I had a greater chance of getting hit by a car on the way home from his office than I did a brain bleed. If I had a brain bleed from that particular risk point, he said my odds of surviving were less than my odds of jumping off the roof of a 10 story building without a parachute and surviving.
I’ll take what I’ve got rather than that, thank you. More later…
Hi @ashleigh There is also risk with embolism for stroke and in my case I did have one with my first embolism but my DAVF was more complex and I was still recovering from a massive stroke (CVST) - the stroke that I did have was minor and I recovered the next day. But still scary. I already knew sign language but had never told my husband. I would highly recommend learning a few things like pain , yes, no, help and its a different part of your brain to write things out with than speaking. When you have a stroke you know exactly what you want to say and can see it but it wont come out.
I am allergic to the dye so I have to take steroids for a few days before and then I few bad for a few weeks post. Now if I have anything done I drink electrolytes to help flush my system.
I hope your embolism goes well and please let us know how it goes.
hugs
Angela
“gettable throughable?” I’m sorry I missed that the first time. Seriously, I totally agree with your assessment of it and that’s why I’ve been “okay” with having a lot of them done.
I will report back after Monday and let you know how I “gottable throughable it.”
This is why I still prowl through here - to just hear people’s truly amazing perseverance
I have been through apparently a few hemorrhages - until the big one took me down like the iceberg took down did the titanic
But, only one embolization < I am beyond thankful for this
Hearing this, multiple upon multiple embos - geez, I think my body would give out. I remember waking up from mine & it was nothing short of being shot back from hell. I felt so toxic for days, if not weeks.
You’re all amazing & never stop amazing me - the human spirit in some has to be so much stronger than others. . . Like my neighbor in icu, he’s been in ICU that the whole staff knew him by name - maybe 6-8 months out of the year.
I keep getting asked how I feel about it - obviously I tend to fall on the generic “just want to have it done already ha” - this is true. But truthfully, I would be lying if I said I wasn’t scared. It’s the moment I wake up and will either be able to see or not see, move or not move - that’s the scariest part for me. I was going to say “I am rolling the dice” - then I realised that I literally am… I have as much chance of rolling ‘snake eyes’ as I do having a stroke/paralysis/deficits etc. Being an athlete, I also tend to joke it off (how I deal with things) and say “well either way, I’ll be training soon - football preseason, or a Paralympic sport”… again true.
I wondered how people felt mentally and physically in the days/first few weeks of their embolisation?
For those who it went well for, how long after did you feel okay to be able to go for a light run?
By the time they got to my embolization, I done gave up days ago. It was either “we try this” - or you’re gonna die. . . So, it was kind of a no brainer(lmao) for me. . . The nite prior to my embolization I barely made it through an opiate over dose in ICU
Horrible, but not at the same time - since I really didn’t have a choice, anything was a win
Being athletic seems to help recover - everyone told me so far
As long as you’re in the best hands possible with this, you should be fine - this is the time to have this done. A decade ago we would have not have this as an option.
I think it hits you harder than you think it should. So, while I think there’s every reason you should get through it fine, do expect to take it very easy post op.
One of the other things I’ve learnt by hanging around here is that if you wake up unable to move or unable to see (and it would scare the sh** out of me if it had happened to me) remember that it could well be temporary. I’m quite sure if I’d woken up like that, I’d have thought “Well, that’s that, then” but it’s not. You’ve just gone through a big op and everything is rather upset. It needs to calm down.
Anyway… that’s not going to happen
What I would say is, immediately post op, my mouth was as dry as anything and like I’d been snoring for a couple of days. A few sips of water helped. I’m sure I felt rough but your head is full of contrast material and the solvent from the embolisation liquid, so that’s not a surprise. Obviously, you’re on a decent amount of drugs, so that takes the edge off anything.
What they will do is look after you like you’re their own daughter.
You expect to feel poorly while you’re in hospital but when they send you home, just take it very steady. I had two weeks off sick and I added a week holiday to that to be sure. I was fine to go back to work after 2-3 weeks, definitely.
Actual recovery back to feeling more “you” could take much longer than that. But we can talk about that once you’re through.
Wishing the best for you! Really good to know when you’re going in.
Mine next embolization is next week. They said 50/50 chance of success and if not, we do surgery the next day. The truth is I’m so scared I don’t know how I’m going to make myself go into the room. I’ve already had 2 sessions with 2 embolizations each session. FWIW, I came out of both doing quite well other than a headache and really tired - both of which improved over 2 weeks so I was back to work 2 weeks later. You can totally plan on being too tired to do much for a little while. It’s the what if’s that keep you up at night, I get that.
My way of dealing with the what ifs was simply to satisfy myself “Do I think I need this operation?” because if that’s true, you just have to knuckle down and do it.
I did all the other stuff of making sure my wife knew where all the finances are, etc, but it was the “Do I think this is important to go through?” question that was pushing me into the same unknown as you.
It doesn’t help to worry about it, so make your mind up, don’t do it or do it and relax because the hospital will look after you nicely. I think my wife had the worse time of it because she committed me to the hospital and then had nothing to do all day but worry. I was “out” for the difficult bit; she wasn’t. You shouldn’t worry about stuff you can’t control.
Hope some of this helps.
By the way, I agree with @Dee625 about having a headache and being tired. The description of what to expect is good.
@ashleigh Good luck tomorrow- Being a math person and tom boy snake eyes have the worst odds - I love to play craps snake eyes and rolling 12 are 35 to 1 odds to worst odds at craps. I think you have a better chance than that.
This is scary and its normal. I know I was freaked out . Now I did have stroke but my story is different where I was recovering from a massive rare cvst stroke prior to my DAVF - and I think it was just too long they did my angio and embolism at the same time and it was 7 hours.
I was able to talk and walk the next day thankfully. But just in case I always tell people to learn the signs for pain and tell your support people if you do have a stroke to get you pen and paper. Its a different part of brain and you can still write.
I do feel like crap for about 3 weeks post embolism but I am also allergic to dye so I am not sure if it that or not .
I always have plenty of ice gel packs in my freezer and a heating pad ready to go at home.
Angela
@ashleigh have a good day today and just know that we are all with you, all willing you on to have a good day and we’ll catch up with you at the weekend or next week.
Sooo i fell into the 5-10% risk and had a stroke during embolisation
My left side been effected - left leg started as a 2/5, arm 0/5 and face 2/5…this was wednesday.
Today i can shuffle around, can move at my shoulder, elbow has some movement, wrist and fingers some movement now too. I had some swelling which steroids have been trying to sort (had my last dose this morning… so whatever im left with from tomorrow/tuesday will be from the stroke damage.) They arent sure ill get it all back… but im really going for it!
My head itself feels okay, light headaches but thats okay.
I cant really think too much about anything past doing my exercises daily at the moment because going from an athlete to not controlling limbs is too much… but im taking the small progress as wins.
I’m still in hospital - my second day out of the high dependency unit. Physios and neurosurgeon will reassess me tomorrow… but to be honest im in no rush to get out, just want to work on rehab to get better.
I’m with you on focussing on the recovery: I’m not sure how I would deal with it: but it sounds like reaching for positivity is the right thing to do.
These things can turn into a long road, so without putting you off, somewhere in your mind I’d say don’t let any slowness diminish your determination, just keep at it. If you ever get despondent through a lack of progress, I’ve got a documentary that I would share with you that shows what persistence might do.
For the moment, hoping that I’m worrying too much. But if you ever need encouragement to carry on along a strange path in the woods that doesn’t seem to be leading back out into the light, let me know.
@ashleigh I am so sorry Ashleigh to hear about your stroke the good news is that your are young and my stroke dr told me the younger we have strokes the better chance of full recovery. One thing he forgot to tell me at first was you sometimes have stroke like symptoms that resemble a stroke - this happened to me about 3 months after my massive stroke -by the time I got to the stroke dr my face was no longer droopy , but he still ordered an MRI-
Sounds like you have the right attitude just concentrate on doing your exercises and dont beat yourself up if by chance you have a small set back sometimes this happens too. One thing I had my family do was video my pt so I could watch it and so I could remember how to do it at home .
There are always more than one way to exercise a certain muscle too so if something isnt feeling right be sure to tell them. Like I cant do any wall exercises with my arms cause it makes me vomit turns out I have something called thoratic outlet syndrome so my PT figured out a different way to work out those muscles.
also science has proved swearing helps with pain.
Hugs Angela
I’m doing really well thanks!! I have managed to get almost full function of everything - to the point where I am actually back playing football again! My forefinger and thumb have full range but I struggle with speed of movement. Everything else, I have managed to get back. Managing fatigue is challenging, but I would say that overall, I’m back to 90-95% normal.
The football thing is huge for me - I wasn’t sure I would ever walk again, never mind play again! I have to work twice as hard to be half as good as I was… but I’m working on it.
I have signed for a team in the third highest league in the country which will be announced on Friday (my 6th month anniversary of the procedure & stroke). BBC caught wind of my story too… so I will be on the news tomorrow or friday evening!
I have a meeting with my surgeons on monday about my next treatment (they want to go with gamma knife) - I think this is where I find out risks/benefits etc.
It’s been a crazy 6 months but I just feel incredibly grateful for the position I’m in at the moment
That’s great! It’s good to hear from you and it sounds like you’re doing very well after a pretty unfortunate embolisation.
Look forward to seeing you on the news, unless it is limited to local news! I made it onto the local news when I was waiting for my embolisation because (despite this being a rare condition) exactly as I was getting fed up waiting for a referral to Nottingham, there was someone on the local news waiting for a referral for gamma knife from Nottingham to Sheffield, so I told the BBC “I’m going through that sort of thing as well” and they came to interview me. Hopefully you’ll get some nice contacts from people you’ve not seen for a long time if the same after-effect of being on TV works out for you as it did me.
Keep us in the picture. There are always others worrying about the same things as you – @Chloe comes to my mind at the moment – and it’s good to be able to swap notes.
