After Surgery

Hey guys my wife is wondering what it is like recovery time after surgery. She is going to have surgery to have her AVM removed from her head after she has a couple of Embolization procedures done. She would like to know what it is like after they do the Embolization, any strange or different things that have happened. Also she is wondering if anyone has had one removed from their head and if they have what is it like in the weeks after? Do you have to wear or put some kind of protection over the skull where it was cut out? Do they put you to sleep or keep u awake during the surgery? Are you able to wash your hair? How long you stay in ICU afterwards? Thanks for any help

I had a craniotomy on March 1. My profile picture was taken on March 3. I will answer your questions and then tell you what I know according to my experience and what i learned from other patients.

The surgery:

When I first woke up from surgery, my husband was not there yet. I could not feel my entire body. I could not open my left eye and had very strong vertigo. I didnt notice any pain when i first woke up. For me, my surgery was very risky, called inoperable and I had to travel over 2000 miles to have it. I was just HAPPY. A strong feeling of pure joy :) I was not even upset that i couldnt move or feel anything. I just drifted back off to sleep and I woke up hearing my husband's voice. Again I was just happy. I did feel pain at that point just said that it hurt. A minute later I drifted to sleep again. My husband told me that was a very hard moment for him and I dont remember at all what he described. I was sent to a Post Op MRI while they got my ICU room ready. I dont remember much of it. The next 2 days are a complete blank to me. I have pictures to remind me of certain milestones but i do not remember them. My husband even took a funny video of me talking and I do not remember. :)

what is it like in the weeks after?

THe first few hours, I couldnt move at all. I was just happy to be alive so i was not upset. Even my husband was not upset... we were going to take it one day at a time anyway. A few hours later, i could move my arms. I was completely numb... even when i regained movement in my arms and could wiggle my toes, i did not "feel" it. I was moved into a inpatient rehabilitation center on day 4 and there they taught me how to walk despite not feeling my feet touching the ground etc. I had very slurred speech and double/triple blurry vision. I had therapy for that too and it still keep getting better. I had severe vertigo and dizziness but that gets better too. All these things you feel after surgery get better with rest and lots and lots of sleep. I would go to sleep at 7pm and sleep until 7 am, waking up often but determine to get as much sleep as possible. The brain needs energy to heal. The first week, even "thinking" and sitting in a wheelchair for 20 mins was totally draining, but each day you can do a bit more. Now 2.5 months later I get tired easier than i used to (i was always up and running, cleaning, cooking, busy with kids etc) and Its going to take some time to get back to normal but I feel like a mom/wife again and its a great feeling.

Do you have to wear or put some kind of protection over the skull where it was cut out?

No. They didnt even shave my head, and i have a pretty long scar that is not gross at all. It is on the right side of my head, under my hair. I was surprised to wake up with so much hair. haha even my daughter first question to her dad was "dada, did they shave a lot of mama's hair?" haha I did not even have a bandage. Just staples. My whole head was very very numb. My whole body was numb. Cold felt wonderful. On that picture, I am laying on a ice pack. I had it 24/7.

Do they put you to sleep or keep u awake during the surgery?

Yes! They very rarely do awake brain surgery. I believe its only with people with strong epilepsy but i could be mistaken. There is another name for this type of surgery. IF she is to have a craniotomy, she will be asleep. Also, I was worried that i would be afraid once in the operating room, alone without my husband... but I do not even remember being in that room. They gave me a sedative in the pre op room and i do not even remember being wheeled down in the OR.

Are you able to wash your hair?

Yes! I was told by someone that i wouldnt be able to wash my hair for a month. hahaha I was able to wash my hair as early as day 3. I was not allowed to shower by myself. I asked the nurses at the rehab center if my husband could help me instead of them. I was in the hospital for 3 weeks and only 2 times did I need one of them. If you plan on being there with her, plan your routine so you are there at shower time. I know it meant the world to me. Even if they were women nurse, i was glad to have my husband help me wash instead of them.

How long you stay in ICU afterwards?

Typically ICU is 2-4 days. ICU is nicer than you think. Its very quiet and its very reassuring to know a nurse is watching you at all time (for me it was thru a window) When the pain was hard to manage, i never had to wait. When I needed anything!! ICU sounds scary but it is actually very self reassurance, comforting. You are also alone in the room. I was in the ICU 3 days. I was moved to a regular room on day 4 and to a room in rehabilitation (attached to the hospital) on day 5. Some people do not need rehabilitation. I had to re learn how to sit, stand, walk, eat, talk and do basic things. (less than 3 month later I am totally independent... my house is a mess but I am alive and independent :)) I was away from home 2000 miles away from my children for a month. I have NEVER left them before. I was very very sad to leave them and wondered how I was going to be able to go thru this. The kids are so much stronger than we think and they will amaze you. They will show you how mature they can be and will make you not worry.

Not all surgery is the same. In what location in the brain is your wife AVM/Surgery? Research what that specific area of the brain control and it is most likely that her deficit after surgery are going to be related to what that location of the brain controls.

Also please keep in mind that the deficit your wife has when she wakes up are going to improves dramatically over time. I have had a very fast recovery, I am very blessed. I am now able to walk on my own without a wheelchair or a walker, which i needed for some time. The brain is amazing and will continue to heal for a long time. What she feels now is not what she is left forever with. its amazing the progresses she is going to make.

I suggest you set up a meal chain... that helped us SO much. No words to describe how much it helped... People brought meal every other day. My husband also made it very comfortable for me in the living area where i could rest a lot but still be with the family. Because i was wit them, i didnt feel like i had to "get out of bed" when i should rest. A mom is always a mom!!

Because i live so far away from family and friends ( I am from canada) we opened a facebook page the week before my surgery. Its filled with information about the surgery and recovery. I still post in it. My husband wrote updates when i could not. It is called "that brain fart" . You dont have to "like" it to see it! but i think most of your questions would be answered there. I also have a blog where I talk about my journey. You really dont have to , but if you want more info, the address is It helped me so much to read other people stories!

My email is ■■■■■■■■■■■■■■■■■■ if you want to write more. I am keeping you, your wife and your children in my prayers.

I had a craniotomy and avm removal April this year in England. ICU for 1 day then a care ward for a few days then home. First week was tough with movement strength, thought and walking. 1 week after I was almost perfect and 4 weeks on I am as good as back to normal - some slight headaches and memory stutters but in all better than I felt before the surgery. I had an infection at week 3 and spent 5 days in hospital until it was sorted - small patch of skin had died on my surgery scar but I guess that’s not common and its sorted now… As the feeling comes back to your scalp I have noticed some shooting pains and the odd eye pain. I feel grate dispite what I have gone through so best of luck :slight_smile:

dandelionwishes, I didn't know you were from Canada!! I am from Canada as well! Most of my family still lives in Canada but I was lucky and my mom and dad came down to stay with me right after my Annuerysm ruptured and didn't go home until the two weeks after I was released from the hospital when the docs gave me the all clear.

I have not had a craniotomy per se and my aneurysm surgery was very different than AVM surgery and it allowed for a quicket recorvery. But I may be able to give you some insight into brain surgery.

As for if she will be awake or asleep during the surgery I am pretty sure that they do not do awake craniotomies for AVMs, however they may elect to do them in special circumstances. I would always ask the doctor if she will be asleep during the surgery though. Like dandelionwishes said they usually only do awake craniotomies when they are treating people with things like deep brain stimulation, or removing tumors in specific areas of the brain.

Usually you don't have to have any protection over the skull after surgery unless they do a craniectomy where they remove a portion of the skull for a period of time to allow the brain to swell. I would again ask the doctor if they plan on doing a craniectomy. But always be careful not to get hit in the head anyways!

See if you can meet with the doc before surgery so you can ask them these questions and be prepared for it.

And good luck to the both of you with this surgery! If anything she is going to feel great after to be able to say she had her AVM obliterated.

so cool! where in canada are you from? i am from NewBrunswick.

I grew up in Winnipeg Manitoba but now live in Texas. Always great to “meet” other Canadians! I was luckt to meet another member from here in person last weekend at the walk who is also from Winnipeg :slight_smile:

On the subject of what she should expect tell her to be prepared to be very tired. While in the hospital i slept constantly and i remember my first day home i was so tired just from getting in the wheelchair, into the car and then the 45 minute drive home that once we walked in the door i kissed my dogs whoni had missed so much and went right to bed the rest of the day.

I would sleep 10 hours a day and would also take a 2 hour nap in the afternoon. Even now 10 months later i still get tired a little easier but it has gotten much better. I think this exhaustion is to be expected after any surgery though. My dad had emergency gallbladder surgery 2 and a half years ago and for weeks after he was so tired. I think it is the bodies way of healing though so it is okay to give in and sleep :slight_smile:

It took me about a year to recover from surgery & finish with rehab. Though I think recovery time is really variable. I met three people in rehab with the same condition, & they all had varying recovery times. Also, I had an emergency craniotomy on a traumatized brain after my AVM ruptured, so I’m sure having surgery without that added problem would require less recovery time. I think recovery also depends on where in the brain the AVM is located. I had mine in my right frontal lobe, so things like executive function & short term memory were slower to come back. Your doctor could probably give a much better prediction of what the effects will be though…They DEFINITELY put you to sleep for a craniotomy. They put me to sleep for an angiogram a year post-surgery to fix additional problems, so I’m sure they wouldn’t do brain surgery without anesthetizing you…

THank you Eileen!

I was in fact blessed with a very good recovery so far. I was told it would take me a long time to walk again, but it didnt. I also shocked them with no swelling. I did not need steroids at all, which I know is not typical... I left the rehab center with no prescription medicine at all. I was told I am a alien. I am very blessed and I know it and am forever grateful for it. It is so important for me to try to pay it forward the best I can. I was very detailed because like you said, I so needed that before my own surgery. I would read "it want fine and i have some trouble but i am ok" and i wanted more details!! I think it would be better if a lot more people were more detailed, like what medicine they were/are on etc,and the side effects of them etc etc etc.

I had my surgery last October. I had one embolization done before the craniotomy in my left temporal lobe. I felt fine afterwords although I did throw up a few times after (which happens after any surgery I have). Afterwords I believe I was more concentrative toward my craniotomy the following day. After my craniotomy I was highly drugged. The doctors would give me tests that I would fail, I would say that I was in severe pain - eventually they gave me as much drugs as possible. I had an emergency CT scan done and they found there was a bleed that had occurred outside of my skull that seeped into the skull causing my problems. An emergency craniotomy was done again to fix the problem. They put me to sleep for all procedures/surgeries except the angiograms. After that surgery everything was different. I obtained my intellectual capacity again and my pain felt completely gone. My discomfort came from constantly getting shots, blood tests, pills, having pee tubes, etc. But just having a successful brain surgery none of those things matter. I was in ICU for about 4 days after the craniotomy and in the basic hospital room for another 6 days. I washed my hair when I returned home but I did so very softly and over time I got back to washing my hair nominally. I was given no protection for the skull. I did have my head shaved where the craniotomy was and I lost all hair on the left and back side of my head from the radiation. Over time it grew back and is just as it was before. I was different then most in my sleep pattern. I hardly slept at all in ICU and the normal hospital room - which the doctors reported was not a problem. Eventually when I returned my normal sleeping pattern returned. I have recovered nicely except for a dent on the left side of my forehead and memory problems which are very slowly getting better. Luckily no seizures! The doctor still wants me on 1000mg keppra for two years to be safe. The entire process is extremely difficult but over a long period of time you will be impressed by your body's ability to recover. I hope all goes well!

Hi Coolj45. I just had my AVM resection at Duke University on the 14th of May and was released on the 16th. I can't believe how good I felt the next morning. I can honestly say my migraines were more painfull than the after effects of the surgery. I didn't even need an aspirin the next morning. My AVM was located in my right occipital lobe so I have some visual field cut for now. I was told that my AVM was large and complicated. Along with the AVM I also had 2 aneursyms, one was coiled and the other is to small to treat. I did have two embolization first one embolized 45% and then the second 60%. So I was embolized 95% before the surgery. After embolization I was pretty wiped out for a few days. I felt good about a week later. I think every one is different. For now I have to say I feel great. I have no idea how many staples I have maybe 40. Small price to pay. If you have any questions don't hesitate to reach out. Best wishes on your wife's speedy recovery.

Sounds like everything went good we are glad to hear that. We are scheduled to go next week to go and see the radiologist about the embolization procedure and set up a date to have it done. They say it will possibly take two to three times before it is cut off enough to surgically remove. Also her surgeon is saying all of this including the removal of the AVM will all be done within two weeks, I know she is hoping and praying that it will be and so am I but only time will tell. How far apart was your Embolization and Surgery? Thank u for taking the time to respond it really helps.

Thank you all for the bottom of our hearts for taking time to read her questions and respond to them. It has made a world of difference to her getting answers from people who have been through this and dealt with it rather than what google has to say or some doctor who has no idea what it is like but what people tell him. She has her good days and her bad more bad than good right now but is praying that after everything is done she will have better. She is trying to stay positive about it and in good spirits but is having a hard time sometimes with her head hurting the way it does. Her doctor had her on 10mg of hydros every 6 to 8 hours as needed then it took her a week to get them to send anything else and when they did it was 5mg every 10 hours which is a big change and she understands why they have to step down and take her off of the medicine but is irritated the way they are doing it and the way it has her head feeling. Thank u to all for all your care

I can share with you what I experienced with my son, I think every person goes through many different things. My son who at the time was 15 had a left cerebral AVM. He had 2 embolization's, he experienced severe headache, nausea, dizziness, visual loss from those procedures, for him the pain was unbearable after each one, some people I have talked to have had no pain. He was not asleep for those procedures, just happily sedated & remembers nothing. He was in ICU for 5 days after his first embolization and than 5 for the 2nd. Where is your wife's AVM?

He than had a left occipital craniotomy, the AVM had also embedded through his visual field. He was in ICU for 4 days after that, he woke with severe pain, and was unable to turn his head to the left from being in the same position for 16 hours of brain surgery. He still today can not fully turn his head. He remained another 25 days in the hospital after coming out of ICU. He was transferred to a rehabilitation facility and spent the next 6 months relearning how to be 15 again, It took about another 6 plus months of out patient occupational therapy as well as PT to regain most of his faculties. He was able to shower about 2 weeks after the surgery, (that differs too it seems for others) so the hair that remained though they sponged bathed him was not very clean, but vanity at that time didn't matter, I don't think he realized honestly. After Showering for him was with assistance and sitting in a chair. As for his hair they shaved the entire back of his head and though the hair grows, around the incision the hair never has come back so he has a permanent horse shoe that takes up the entire back of his head.

When is she going in for her embolization? I hope all goes well, I will keep her and your family in my prayers. The AVM was life changing for Tim as well as us, his family. Be strong for her!

Hi Coolj,
I have 4 embolisms before craniotomy. The embolisms became increasingly routine. By the last one, I was asking to go home in the recovery room. Most generally, they made me feel woozy but fine. I remember repeatedly wanting to go home, feeling ready for it, but was required to stay in the ICU for 1 or 2 nights. Always walked out.

The craniotomy was something of a different matter. I was out of it for a few days straight - completely doped up on morphine. I was cognizant very quickly. Rolling out of surgery I made a joke. I remember talking to the nurses in the recovery room, and they reported I was making sense to my family. By and large though, I was pretty out of it for a few days. I can't recall it all - certainly not a narrative. Just pieces. I was in the hospital for 10 days then walked out completely fine, complete recovery. I slept a bit more for some time, my eyes hurt, but all was well quickly.

My hair was unaffected after the embolisms and 1/2 shaved after the craniotomy, I don't know why they just didn't shave the whole head! It was quite strange looking (still is on account of male patter baldness).

In the end everything will be alright. If it's not alright, then it's not the end.

Its a hard question to answer but i was out of hospital after 2 weeks of surgery but had to rest for nearly another 8 and then unable to drive for minimum of 6 months.

During my recovery time i was off work for nearly 6 months and i was generally taking baby steps going out after about 2-3 months as i felt so dizzy every time i got up.

Everyone is different but its a slow process that takes time....tell her to be relaxed and stress free and just kick up her feet...will be sending prayers her way.

God bless.

I had an op to remove an aneurysm and AVM at the same time so my op was quite long, around 9 hours I understand, however there were guys who had embolization on their AVM's and appeared to be up and about very quickly after the procedure (around 1 day)
A guy opposite me in the Hospital was in for only around 3 days. Had an angiogram on the first day, op the second day and out on the third. His AVM was around 2mm in size.
If it is any help, my recovery has been faster than I thought it would be, I feel I am stronger every day, however still feel fatigued and have the odd sleep in the afternoon.
Its been 2 weeks since my op and I thought I would be a lot worse than this, since I have had someone messing around in my head, but apart from the odd headache I have no real lasting problems.
You just have to listen to your body and let it lead you in your recovery. Don't try to push things, it really isn't worth it.
A woman who was in the other ward to me told me that this was her second AVM op. Her first went well enough that she felt able to go back to work, maybe a little to early, as when she was at work she had a bit of a breakdown, getting confused with the work tasks at hand.
Confusion is something that I feel at the moment and lack of concentration. Reading books has been a bit of a waste of time as I loose interest after a very short amount of time.
This I am sure will rectify itself in time. I just have to go with the flow.
I hope this has helped somewhat with your questions.

You sound so terrific, Stuart. It really makes me smile.

When I woke up from my brain operation (which took four hours) my family said 'you had a smile on your face it was really strange, as if you were saying, sorry folks, but I'm gonna be sticking around a bit longer. That sucker ain't gonna finish me off, no way."

That is great glad to hear everything went good.