hi everyone i am going for open brain surgery on the 31st december hopefully to remove my AVM. I am dreading the surgery now it is getting closer. Anyone who has had similar surgery how long were you in hospital for after your surgery if it was straight forward. can anyone share their experience with me and give me some advice and what i should expect.
Hi jg200, my husband had open surgery to remove his AVM on a Monday morning and they released him from the hospital on Friday evening! He was on the ICU until Tuesday morning for close monitoring, then moved to the normal neurological surgical unit.
They did say that he bounced back surprisingly fast - normally they would have kept him there until the following Monday (7 days in total).
I hope your surgery goes as smoothly. All the best.
Best wishes to you for your surgery, jg. Please update us when you are able to let us know how your recovery goes.
I had emergency surgery to remove an AVM from my brain stem. I was in the critical care unit for a week afterward, and spent another week in a regular hospital room. I was on anti-seizure medication for about a month or so after going home, but never had a single seizure -- and this was four years ago. Except for some loss of coordination, I've had absolutely no side effects of any kind.
JG,
I had surgery 20 years ago after an embolization ruptured the AVM and caused a massive bleed. They rushed me in to surgery (we were going to do a craniotomy anyways, but not right then until the AVM made the decision for us).
My particular surgery took about 12 hours - my AVM was 3 cm located in the left frontoparietal lobe. They kept me out for 3 days after surgery and when I woke up I couldn't move my left arm or leg and had some pretty nasty headaches. They gave me some rather strong painkillers anytime I needed them, though, and pain was never an issue for me.
I was in the hospital for about 3 weeks before they shipped me over to a rehab place where I stayed for another month or so - the only reason my stay was so long was because of the paresis on the left side.
After a couple months of physical therapy, I regained use of the left arm and leg, returned to my dance career, and suffered only minor cognitive deficits. I could not remember how to get from one place to another if the locations were more than a block away from each other. I'm talking about places I had been going to for years and years - it was like someone just erased my mental maps. Once I had retraced my route to a place, though, the map seemed to be restored.
It took a long time for me to regain all my strength and coordination in my leg and my arm and to this day, they wear out faster than the right side and my handwriting (I'm left handed)is not as good as it was unless I really take my time. I can still do calligraphy with my left hand, but that's because it's something slow.
No two ways about it, brain surgery is not fun, but it's an excellent treatment option for some AVMs and the techniques have gotten much more sophisticated than they were when I had mine 20 years ago.
We'll keep you in our thoughts - when you're able please let us know how it went and how you're doing.
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I had 2 AVM’s the first one was removed in March this year the op was at the rear I was in hospital over 4 weeks in total. The op lasted 21 hours & I had to have a blood transfusion too the side effects are I don’t feel hungry/no appetite & I still feel sick & dizzy especially when I move my head quickly. My last surgery was Tuesday 9th December it lasted 10 hours with 2 surgeons on my right virtually in line with my ear. I was in Hope hospital & discharged on Saturday 13th December should be having my 30 staples out tomorrow. I don’t feel anywhere as bad as I did the first time & to be honest I decided surgery again for my last one then I knew it would be out a decision I would make again in a heart beat. I think it is hard the closer it gets to the surgery & I didn’t sleep properly I don’t think you’d be “normal” if you didn’t feel anxious. Good luck for the 31st December & I hope all goes well take care x
Hi... while my AVM repair was not straight forward, as I did have an active bleed. It was repaired Tuesday morning and I was home in my own bed Sunday afternoon! My husband thought I should have stayed longer as I had problems with pain meds, but nothing felt better than being home. Good luck!
Hi!
I had a craniotomy to remove mine (right parietal) and I went in on a Thursday (and then had to wait around from 6am to 2pm before they were ready---but there are emergencies in neurosurgery---just so you know). I was in Neuro ICU for about a day, then moved to regular Neuro and was released on Sunday. So it was only 3 days for me--but I'm not sure how extensive or difficult your surgery is. I think mine was pretty easy.
For me, while it was really nerve-wracking beforehand, it was actually surprisingly easy to recover. I was nauseous and in pain for the first day or so afterward but it got very managable very quick. I often joke when I'm asked that if you have to have surgery ,brain's the one to have--except for the worry beforehand, LOL.
Wishing you the very best on a similarly easy experience and please do let us know how you are doing!!!
Gail
I had a craniotomy on 9/8/14. I was absolutely terrified, so I completely understand. I requested anti-anxiety meds the night before surgery to try to stay calm. My surgery was about 6 hrs, which I hear is rather short for brain surgery. I was pretty comfortable when I woke up in the ICU. Make sure to stay on top of the pain- the nurses will help you.
I did have another angiogram the next morning to check the site of my avm. Lots of positive thoughts and be patient with yourself (easier said than done!). I spent a total of 6 nights in the hospital, 2 of which were in the ICU. Sleeping was difficult with the discomfort of the staples in my head, but I was extremely exhausted after the surgery. The whole thing is scarey, but don't allow yourself to go into dark places in your mind. Surround yourself with friends/family and don't be afraid to ask for help.
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I had my AVM removed 7 years ago this March! It was 3 cm and located in the right frontal lobe. My surgery lasted 12 hours, and I was kept in the hospital for a week (2 days in ICU, the rest in step-down). The surgery itself isn't too terrible, and they keep you pretty drugged up during your time in the hospital.
One thing I wish would have been emphasized by my docs is that recovery from a craniotomy isn't a fast process. It took at least 6 months to feel closer to my "normal" self. It's just slow going, but trust the process! I DEFINITELY don't want this to increase your dread/anxiety about your procedure, but I think having the reality in mind beforehand will help you from being too discouraged in the months following your surgery. Just know you probably won't be running any marathons in the next year or so. But just so you know...I finished my first one three years later.
Hang in there, be strong! It'll be over before you know it, and you'll have the rest of your life to look forward to! :) :)
Good luck with yoursurgrry, will keep my fingers and toes crossed for you!
I had craniotomy almost 18 months ago to remove AVM and clip aneurysm. I was in hospital for 5 days. Had some problems with the meds (still do from time to time) and was very, very tired for a couple of months. Better now, though energy level still not what it was before. I'm 73, female, very active. Think positive, try to relax (your doctor might give you anti-anxiety med now if you ask). Good luck! Chilly
hi everyone just ant to thank you all for leaving me these comments couldn't believe my email when i saw so many people had got back to me, so nice. I appreciate all your comments as it helps to give me an idea of what to expect. I will definitely be back on to let you all know how i get on or might be my husband he will keep you all up to date on how i get on. once again thank you so much for taking the time out of ur day to respond to my message i appreciate it.
Joy
Hi jg200, I also did the surgery on 27 May this year. I was also very afraid of surgery due, but he knew everything that could happen, but wanted everything runs well.
The day before the surgery I spoke to the entire medical team, which reassured me.
But I know one thing that helps to ensure that the operation runs smoothly is to rest and sleep during the night before.
Also try to be as quiet as possible this helps. And now trust that everything will be OK.
Hi jg200! Waiting was the worst of it for me! I had a 3cm avm removed from my left frontal lobe at the end of Feb 2014. It had bled - and I only found out about it days before the surgery. My total hospital time was 12 days - with 9 of those BEFORE the surgery for proper diagnosis. I had surgery (craniotomy) Friday morning and was out of the hospital on Monday night. Recovery was really good. I have had several operations on my knees over the years and this was a piece of cake in terms of pain! I had relatively minor pain after the surgery and no major deficits. I was back at work at the beginning of July and feel well. It did take some time to get energy back and I still have times of EXTREME tiredness - I could fall asleep anywhere, but they are few and far between now. I do feel as if I have some memory loss as well - but for me I sometimes wonder if it is just age!! (turning 50 next week!!)
Best of luck with your surgery and recovery. It is so much better for it to be removed and gone. The benefit of the surgery much outweighs the risks.
Take care
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thank u for ur messages swimmom1990 and marcio I appreciate it as im not beginning to feel very scared at all the unknown things but it is good to know im not on my own and other people are suffering the same as me.
hey, my daughter had to get that crainotomy surgery she's 5 days out from it, her swelling is alot better-when they put the bone back in will her face reswell again? Just wondering she is still on a ventalator because her ICP pressures have been an issue for the past 2 weeks , just starting to come down, she's been in a med induced coma..has this ever happend to anyone they put drainage tubes on both sides of her head they didn't work so then she got the craintomy surgery. Still waiting until she's more stable to do an angeogram--anyone else ever simular to this experince..comments welcome
Hi jg200 and all the best for your AVM to be obliterated and a speedy recovery :) Looking forward to hearing how well you are doing in the new year.
I can’t get mine operated on but I hope you luck and a speedy, complete recovery!
There is a lot of differences in operations. Mine was back in 1989. It took over 20 hours. They even had a cot for the surgeon to take a nap in the operating room. Things were a lot slower back then. The good news is I’m here today to annoy my children who weren’t born then. So, take it one step at a time. Good luck.
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