Surgery Experiences?

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Howdy folks!
I’m being admitted to the hospital on Tues (Jan/30), the next day I will have an embolization, recovery day Thurs, and craneotomy to remove AVM on Fri.

I’m curious what your experience was like? Either embolization, craneotomy, or both.

Embolization: Were you put under for embolization? How long did it take? Side affects? Complications?

Craneotomy: what was it like when you woke up? How long until you were sitting up in bed? Walking?

What was your recovery like?

I’m getting kind of nervous :flushed:

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I feel like it’s almost pointless to comment, since I “only” had one embolization

But, how it went? They did a angiogram(I was all the way under). They couldn’t get to it, they went back in the next day. I was under about 4-5 hours, woke up feeling like straight hell - which lasted for days to follow. From just insane cranial pains to extreme nausea.

It’s been easing up ever since, over the last 3+ years

Resection folk - that’s a whole other animal

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I have only had an embolisation so I can only comment on that.

I am terrified of needles so they did the angiogram and embolisation under a general (no way I could do it conscious).

I was pretty rough for a week or so afterwards, but after that I was alright. Be prepared to take some time to feel better - take it easy and be gentle with yourself afterwards.

But my AVM they were treating was in my foot - so I don’t know how relevant this is. I hope it helps a little.

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Hi @Phoenix

So I can give you some info on my own experience with craniotomy. Mine was performed June 2022 @ Cleveland Clinic. These Hospitals (meaning the size and specialties) are like Factories, they perform so many operations and cares all the time. That is good to know.

The day prior to my surgery I had an MRI and angiogram so the Medical team could map out everything, all the process. These two procedures took time, but I was aware that they needed all the information they could have prior to surgery. In a small sense I welcomed all this exams before.

The night before surgery we stayed @ a Hotel within the hospital, because I needed to arrive at pre surgical administration @ 6 am. Surprisingly the night before I slept ok, I think I was @ peace with my decision and the process.

I was with my wife ‘till like 7:30 am, and then was taken to surgery clinic and was greeted by 2 anesthesiologists and then the rest of the surgery team. About 7 drs in my case, including my neurosurgeon Dr Bain. I was asked general questions about what would go through and then with their care it begun.

I woken up in the recovery room about 7-8 hrs later. No pain, tired, still very drowsy. And immediately asked to see my wife. I could move my body, and talk. And the most impressive memory I have is just as Dr Bain had said: “when you wake up, you don’t have it anymore”. Relief.

Of course recovery took time, plenty of physical therapy. And very great full to be here. I stayed 4 days at the hospital, 2 different ICU rooms as you recover. Their goal is to have you there as less days as possible. Keep your blood pressure low.

It is completely normal to feel nervous, it will pass. I went for some walks, read, prayed, and took one day at a time.

I hope this information helps, and truly wish you the best as you deal with you AVM.

Francisco

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Hi @Phoenix

I hope you have a good week!

I think it’s fair to say we all feel the same about this, so yeah, I was keen to do it, I was convinced it was important to do, but it’s the unknown, isn’t it?

I’ve only gone through the embolization so I can tell you about that. I’ve no doubt but that craniotomy is a more invasive thing but my main message is the drugs are good!

As with others, my angiogram and embolization were done together under general anaesthetic: I just think they don’t want you moving around at all. They looked after me nicely, just took me through the day and told me what was happening next up to the point of going under. All very considerate.

I came round in recovery at what felt like 10pm at night. I guess I felt groggy but it was perfectly gettable-throughable. The main thing I remember was a very dry mouth and a need for something to get rid of the taste of that. The embolic glue is obviously in a solvent so you breathe out the solvent for probably the day after. It’s not unpleasant per se but simply your mouth feels like you need to clean your teeth again. And again. The nurses would come through saying “Oh, wow, someone’s had an embolization!” because they could smell the solvent. I can’t remember what they described the smell as – maybe like bubblegum…

I spent a night or two on neuro ICU then demoted to a neuro ward. For you, you’ll get through that and then go in for the crani and then go back onto neuro ICU.

Pain wise, I definitely felt headachy. I could hear a very loud pulse post op, which surprised me. But the drugs were great. So I was comfortable with what had gone on and just took my time in hospital as like an all inclusive holiday where I was being waited on hand and foot. The food was very average for such a posh holiday but they did look after me nicely.

I think the other thing to remind yourself of as you go in is that if you come round from any stage of your op and something doesn’t work – e.g. if you can’t see or your words are jumbled up or you can’t do something – don’t immediately decide that it has all gone horribly wrong. I’ve read stories on here where that has been temporary, just to do with the disturbance that has occurred, and when everything has calmed down things have returned to normal. So even if you get some effects you don’t want out of the op, don’t give up or get down.

Have a good week!

Lots of love,

Richard

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Hello Phoenix. You are probably undergoing the embolization as I write this, or about to i the next few hours… let us know as you are able. I did not have an embol… as a first step, but my AVM had ruptured twice, a week apart. I was 59. I live about an hour east of Toronto, and had the surgery at Saint Mike’s in Toronto.
When I awoke, post-craniotomy, I was ravenous. They fed me a full meal, then an extra sandwich.
I understand the nervousness, but thank goodness they discovered it.
I am really looking forward to hearing from you next week, with an update on how it went, how you are feeling, and what plans you are making to continue living your best life.
Cheers, Barry

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I’m in the same boat as you. Planning for surgery now. I have to have another functional MRI because the last one was 4 years ago. I am nervous too.

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Hi,
My 6 year old granddaughter had a craniotomy last September. She also had an aneurysm which they dealt with at the same time.
She had a Grade 3 AVM situated in an awkward place affecting both speech and mobility areas.
Op took 12 very long hours, 3 days in high dependency unit, 8 days in a normal ward and she walked out speaking perfectly.
Had follow up yesterday and AVM completely gone and she is now a very happy, sassy 7 year old.
She dealt with the surgery and afterwards like a true warrior.
Hope this helps a little.
Sending you lots of luck and a speedy recovery.

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I had craniotomy & was in High Dependency/ICU for 2-3 days before being placed in a normal ward… I woke up thirsty & hungry but unable to eat or drink as I had to stay flat for 2-3 days & minimise any risk of pressure to my head, hence no food that could upset my stomach.

I was all over the place in terms of mentally as I was still under the influence of heavy drugs that had me hallucinating. Pretty much was a blur and about a week I was up and about slowly getting around & discharged.

It was a slow but steady recovery & best to rest as much as possible… All the best & keep us posted… God bless!

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Hi Phoenix, I haven’t posted in quite some time. I hope your surgery and recovery went well. My AVM was asymptomatic and was discovered only by chance. Read my story in profile if you wish.

I’ll share only this: recovery is long, slow and frustrating. Be mindful that the healing process expends a lot of energy. Be patient and get in your mind that there is no other option other than returning to pre-surgery health. Never believe anything else. Never!

Happy healing!

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I love this. “…very happy, sasst 7 year old.” Bless your heart. Greg

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Richard, I love your post, one of the best I’ve ever read. I’m talking about a very traumatic time, 2 craniotomies, age 14, year 1973, after a big bleed, technology way less… But you made it sound kind of fun… [quote=“DickD, post:5, topic:29447”]
like an all inclusive holiday where I was being waited on hand and foot
[/quote]

Anyhow… the message is that it’s a really rough time and you can still make the best of it with a positive outlook. My craniotomies/arteriograms were “only” about 9 hrs and I suppose it’s indirectly a good thing that the pain was so bad I remember nothing. Good luck, Greg

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Hi Melissa Joyce, I don’t have much to say except that I want you to know there is someone pulling for you that hasn’t even met you. I’m hoping you have a successful procedure and wonderful life. Best wishes, Greg

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