Ok so I’m scheduled for May 11 for my embolization. I am so scared does anyone out there have any success stories. I need some positive thoughts right now . And what symptoms did any have after the embolization?
Where are you doing?
Phoenix Hoag California have some of the best doctors
I live in NY and I have one of the best Drs here. He is very well known I have done a lot of research. He did my angiogram and it went perfect.
I was really quite scared of the whole idea of brain surgery. Having the interventional radiologist say that the risks are that “bad stuff might happen, or you might die” didn’t really help, as you can imagine. I’m also very vasovagal, if you know what that means.
So, no. I was not looking forward to it at all.
However, it is perfectly gettable-throughable. The drugs are great and I was ok going in and (while you feel like nothing when you come round) it’s a bearable thing. Honestly it is.
What are the bad things about it? (I’m saying this to try to encourage you!! )
- When you wake up, your mouth is as dry and bad tasting as it has ever been. This is because you’ll be breathing out the solvent from the glue. It doesn’t taste bad it’s just like you’ve slept for a week with your mouth open . You’ll need a drink of water.
- Your head feels mostly like you’ve got a hangover, I’d say. It’s feeling quite abused.
- Again, when you wake up, you’re on great drugs and there’s no reason to move. You just get wheeled to the ICU and you’ll have a nurse to look after you. I think the least comfortable thing was actually having the cannula in the wrist and the fiddling with that.
I got looked after in ICU for one day. Then down to a less surveyed ward for a day or two then home.
I needed at least a couple of weeks off work. I pinned a third week of holiday to that and was fine going back to work after that. I’d say my head was sore for quite some time post op. However paracetamol / Tylenol kept me just fine.
I didn’t feel “fixed” straight away and the doc had suggested he might need to do two goes at getting me fully glued up but after the op, he said he had done it all in one go. I can honestly say that if I had needed to go through it again, I could have done it much more easily than first time. I am sure we worry about the unknown so much more than we need.
It did take me a loooooong time to get back to feeling “good” post op but I’m sure that is pretty normal for messing around with the brain.
You’re going to do brilliantly. I am sure you can get through the op ok. All you need to do is turn up in the right place at the right time and the nurses will look after you beautifully.
Ask anything you like. I’ve been there. Others have been there, too.
Very best wishes,
Thank you so much you have no idea how much it helps to hear stories like this . I’m so happy to hear you are doing well
Hi @Chloe !
Glad you found this site. I know it helped me to talk to others prior to my embolization. I am on day 18 of recovery. I also had my embo in NYC at Mount Sinai. My guess is that you have found a great surgeon. Sounds like you did your research, which I also did, and NYC has some of the #1 surgeons in the world.
I would be lying if I said I wasn’t nervous and scared prior to my surgery. It was a lot to take in knowing what would all be done. I had a DAVF was is a little different than an AVM, but the procedure is rather similar.
I hope my story will give you hope! My surgery took 6 hours (estimate was originally 1 hour) and I ended up with 40 coils and several stents. NOT in the original plan. But my surgeon told me prior once he gets in things could change. Apparently it my davf was a lot more extensive then what they saw on images. I spent 1 day in ICU and half a day in a hospital room. Week 1 I was pretty sore at the incision site and didn’t have a ton of energy. But by week 2 I was already feeling better and today 18 days post op I’m back to myself!!! I feel so good and have no restrictions at all.
All in all I want you to know that no matter how big or small your procedure ends up being know that your body is a miracle in itself and it will do anything and everything to heal itself. Stay strong and you have a good surgeon to care for you.
Thank you so much. Wow 6 hours they told me 45 min . He is planning on doing the one vein that has a bulge in it . He was concerned about that.
But thank you so much for the word of encouragement I love to hear these positive stories.
Glad to hear you are doing well
My 15yo recently had his 5th embolization in 4 months. I can share his experience and tips we learned to ask for on the repeat trips. Sharing in the order I remember things. Sorry it’s so long, but I think more info going in is better than not enough.
- Each procedure was 3-3.5 hours, limited to this by the pediatric limit on radiation from the angiogram pictures they take throughout
- Prep required IV insertion, just like your angiogram
- Recovery was monitored by an A-line inserted into a wrist artery while under anesthesia. We learned to ask ahead for the smallest A-line catheter possible be inserted, secured by a suture or two
- Also during prep we made sure to ask for the Foley catheter not be removed until after he could sit up in recovery. (Like during his angiogram, he had to lay perfectly flat for 4 hours in recovery, so artery used in his groin would not open. First embolization they took the foley out too soon, he really needed to pee after 2 hours, and was increasingly uncomfortable waiting till he could at least sit up and use a urinal)
- We always asked for a shot of whatever sedative they offered into the IV just before wheeling him to the OR. Erased all anxiety and let him relax for the final prep
- He remembers very little about the first 30-60 minutes post op. My husband and I saw a big difference in how alert he was, depending on how deep and/or major the feeder was that was embolized each time. When they did the bigger & deeper ones, he remained knocked out for hours after. Superficial ones he was already awake when we got to his PICU room.
- His AVM is over his left occipital lobe. After embo #4 his vision was wonky for a few hours. Left eye saw everything at a slant. This corrected itself, eventually.
- He felt “garbage” for at least 6 hours after each. But as much as we could tell, it was mostly from the anesthesia. And having IVs and the A-line and electrodes connecting him to all the tubes and wires.
- Aside from the wonky vision mentioned, sometimes he had headaches and migraines in the first hours. Headaches continued as before surgeries, till we got some new preventative meds for him. I don’t know how much of that could be an expected side effect from the embolizations
- In the ICU the thing they monitored most was blood pressure and they gave him meds as needed to keep it very low. Those meds made his heart beat faster and he did not like the feeling
- BP is measured by the A line. Which became the bane of his existence if it wasn’t secured well enough (hence the early, requested sutures). Every time his hand would move, or even not move, a loose A line would shift and his BP number would spike and the alarm would go off and then his BP really did spike out of annoyance.
- by about six hours post op he was so hungry he ate two meals. Every time. Maybe because he’s a teen boy with no food now for 24 hours?
- He had no nausea at any time during any of the embo’s
- 1st night in PICU isn’t restful as they check vitals, including flashlight in pupils, every hour
- By day 2 he felt ready to be up and moving a bit. Moving to a non-ICU room meant finally a good sleep
- sometimes they discharged him on day 2 if he was moving fine and feeling up to it.
- (By day 3 if we were still in the hospital, he was so ready to be home that he was super cranky)
- Home, it took him a week to feel about 75%. Tired easily, no appetite until suddenly famished, regular headaches until he got his new med. then only rarely
- By the end of the second week he was 100% back to himself.
I hope this helps! By the time we got to #3, 4 and 5, he/we were no longer freaked out about the procedures. Great doctors whom we trusted and amazing nurses made that easier.
Best of luck to you in your upcoming procedure. I hope you sail through with minimal discomfort!
Wow I feel like a wimp. Your 15 year old has had 5 embolizations and keeps going . God bless him and you . Your story was vey encouraging and thank you for your information. They are doing one vein for me they told me it would be about 45 min.
And would be in icu overnight then hopefully home the next day. I know my angiogram went great I was in and out of the hospital it 3 hours. Only had to lay flat for an hour. So I hope this goes just as smooth.
Thank you again for all the information.
Heather, really useful summary! And I’m in agreement with the getting used to nos 3, 4, 5. I’m sure some of his famishment is to do with being a teenage boy!
I’d say an embolization leaves you feeling quite uncomfortable and hungover but I had headaches for at least a few weeks after mine.
Very useful summary, thank you,
My first one I was put in a coma and on life support and I believe this is common so there is no risk of movement or seizure. I had to make a will and put my assets into my son’s name. My sister had power of attorney and there was a briefcase of loose ends I struggled with. I really encourage that you get your stuff in order. When I woke up, I had a massive migrane and chest pain and I could not see. 3 days in ICU a new woman. The other two embolizations were no big deal compared to the first. I am happy to say thanks to my surgeon I am AVM free. I hope you you have complete trust in your doctor. NJ did not have a single vascular neuro surgeon and I ended up coming to Florida for my care. I think in the last 5 years there has been so much more advancement. Praying for your complete recovery.
Hi Chloe. I had 3 embolizations before my Craniotomy. This was 11 years ago now. The first two went well with no lasting problems but the last one left me with a blind spot in my peripheral vision. The actual procedure wasn’t too bad as obviously you’re out for it and afterwards, I had varying symptoms that only lasted a few days: a bit of sickness/dizziness and just generally felt a bit weak and unwell. But as I say, it didn’t last long. Obviously everyone is different how they react to certain things! I hope yours goes well x
I was diagnosed in 2013 with a right frontal lobe AVM. After MRIs and such, I saw the surgeon. He said there were only 3 things that could be done and my AVM was too large for anything except surgery, and he recommended surgery. I tried to be funny and ask if I could get it done the following year. The doctor turned pale and said no!!! He told me my AVM was so large that if it ruptured before he could get to it I would just drop dead. He said if he had his way, he would have it out in a matter of weeks. That woke me up. I had 2 Embolizations prior to surgery. The only thing I would suggest is, if you have a weak stomach, tell them to give you something before the procedure for nausea. I didn’t do that the first time, but we all knew the second time. I felt fine after the procedures other than the nausea the after the first one. I was just tired.
I wish you all the best and pray you have a complete recovery.
Thank you so glad to hear you are doing well.
My dr cannot do surgery so the embolization is the only thing they can do. Especially because one of my veins leading to it has a bulge.
I only found this because I had ringing in my ear and they sent me for an mri I’m 50 years old and have never had any symptoms. But he does want to treat it because of the vein bulge.
I’m so nervous but I’m sure all will be ok
You’re not very different from me. I found mine due to the pulsatile tinnitus, too, aged 50. Embolization got me sorted.
I had 3 embolizations back in 1999 when I’m sure the procedure was a lot more risky than it is now so don’t worry…Trust your surgeon and his team. I had no bad symptoms after each only the sound of air or liquid rushing through my brain. A little freaky but cool.
@Chloe hello and so glad you found the site. I have a DAVF- I had a combo angio/embolism @ Stanford the first time which was 7 hours. We already knew that I was deathly allergic to the dye they use during the procedure so I have to take steroids for a few days before . Then I am not sure what they pump into me during - When I woke up I realized I had stroke and was in terrible pain - I had 10 months prior had a CVST Massive stroke ( 5 blood clots in my brain- the kind that the Johnson & Johnson Vaccine is causing) and I could not talk. So I was signing with my right hand that I could still move that I was in pain and to get my stroke dr who is the head of stroke at Stanford - he was also part of the surgery team. Anyway they got my husband to see what I was saying but he did not know that I knew sign laugauge - but he got paper and pen - so I wrote the same thing I was signing - since then we have both learned the signs for pain and some other signs like mother and father. I would suggest just in case you do have a stroke and cant talk some basic signs . It is a different part of your brain to write with so you could write.
I find too that post I need to flush my system so I drink electrolytes - I like Ultima which you can find on Amazon- You will most likely spend the night in the hospital and not sure if they are letting people in the hospital in NY yet. But I would bring my own tea crackers etc.
After I did hear some popping , My neuro radiologist said it was the glue moving and not to be concerned. It stopped I think after two weeks. I had glue and onyx. I used to lift weights too and when I had my blood clots they told me I could not lift weights are do anything that would increase my bp, but I dont really have any restrictions with my DAVF except my pain neuro made me stop playing pickle ball with the senior citizen group because they are super competitive and she saw me with a black eye and it was my second bad fall with them. I have always wanted to learn how to ice skate and they are going to be building a new rink - my family doesnt want me to do it but I promised I would wear a helmet
Good luck with your embolism and let us know how it goes. I am sure it will go well. I think I had my stroke because my procedure was too long after having my first stroke. And I recovered the very next day.