I just saw my neurosurgeon today after my embolization in October. Since then I have turned 18, so I had to switch surgeons and hospitals. I was told today that the first embolization only glued 1/3 of the AVM which is in the left occipital lobe, fairly close to the surface of my brain. The neurosurgeon told me that she thinks it is curable with another embolization but she did not seem very optimistic, and went into a lot of detail about surgery. If the next embolization does not remove all of the AVM, they'll be surgically removing it. I am just wondering what everyone's experience was with surgery...side effects, recovery time, etc. I know that everyone's experience is different but I want to get a feel for what I might be going through, if I end up having to get surgery.
Hey - hope youāre doing well. I had the surgery four weeks ago, following three embolizations, each of which got about 1/3 of it. Total eradication by way of embolization is uncommon in the best of circumstances, which could account in part for your surgeonās lack of optimism. There is debate in the neurosurgery literature about whether embolization should even be seriously regarded as a way to ācureā (as opposed to just setting you up for safer surgery). As for the surgery itself, my experience has been really quite uneventful and reasonable considering what it involves. I was in hospital for just two days (home in time for lunch the second day after surgery), although I gather that different surgeons and hospitals have different theories regarding how long a craniotomy patient should be kept inpatient. I was going out for brief walks by the third or fourth day. I was back to work part of the day by week 3 (but Iām a university professor, so āworkā for me means reading/writing; I would not have been able to stand up in front of a class and teach that soon). Now in the fourth week Iām feeling pretty close to normal except still getting fatigued in the afternoon, but taking long walks, even riding a bike a bit. They seem to want you to lay off genuinely strenuous activity for a longer period ā six weeks or more, but again varies a lot from doc to doc apparently. Beyond expected discomfort associated with head incision and such during the first week or two (quite manageable with pain meds) Iāve had no other notable side effects. Iād sum it up this way, based on my experience: youāre pretty useless for a week or two but if it goes well itās pretty amazing how quickly you start to feel like yourself again. Let me emphasize that this assumes an operation that goes well, without complications, and an uneventful recovery. Mileage may vary, of course, and clearly a lot of people have craniotomies that involve more complicated recoveries. Hope this is helpful. Best of luckā¦
Thank you so much, that actually eased my mind a lot. Iām not sure why my first neurosurgeon seemed so convinced with the embolization - I think it may have been because heās with pediatrics but Iām not sure. Anyways thank you for your message and I am glad to hear that you are doing well!
bb said:
Hey - hope youāre doing well. I had the surgery four weeks ago, following three embolizations, each of which got about 1/3 of it. Total eradication by way of embolization is uncommon in the best of circumstances, which could account in part for your surgeonās lack of optimism. There is debate in the neurosurgery literature about whether embolization should even be seriously regarded as a way to ācureā (as opposed to just setting you up for safer surgery). As for the surgery itself, my experience has been really quite uneventful and reasonable considering what it involves. I was in hospital for just two days (home in time for lunch the second day after surgery), although I gather that different surgeons and hospitals have different theories regarding how long a craniotomy patient should be kept inpatient. I was going out for brief walks by the third or fourth day. I was back to work part of the day by week 3 (but Iām a university professor, so āworkā for me means reading/writing; I would not have been able to stand up in front of a class and teach that soon). Now in the fourth week Iām feeling pretty close to normal except still getting fatigued in the afternoon, but taking long walks, even riding a bike a bit. They seem to want you to lay off genuinely strenuous activity for a longer period ā six weeks or more, but again varies a lot from doc to doc apparently. Beyond expected discomfort associated with head incision and such during the first week or two (quite manageable with pain meds) Iāve had no other notable side effects. Iād sum it up this way, based on my experience: youāre pretty useless for a week or two but if it goes well itās pretty amazing how quickly you start to feel like yourself again. Let me emphasize that this assumes an operation that goes well, without complications, and an uneventful recovery. Mileage may vary, of course, and clearly a lot of people have craniotomies that involve more complicated recoveries. Hope this is helpful. Best of luckā¦
Had surgery of a grade 3-4 AVM that was fairly deep inside the brain. You can read my blog but remember every case is different. I just want to tell you that surgery sounds a lot more scary than it is. I was operated March 19, 2010 and this week I am back at work. First day today without pain killers
Good luck w your choice - have faith, courage and hope. Be mentally strong, I think that is 50%. The other 50% is finding the best surgeon you can.
I am so sorry to hear about what youāre going through. My daughter, who is 15, had 5 embolizations and then the brain surgery to remove her AVM in November of 2009. Eveything went very smoothly. For each embolization, she was hospitalized 2 1/2 days and for the surgery, she was in ICU for 4 days and then in a regular room for 2 days. Her side effects consisted of not being able to stretch her arms out straight which the doctor could not explain why. But, with therapy in the hospital and doing the exercises at home, she is now fully recovered. Her hair is now finally growing back and she is completely off her medication. If you should have any questins, please feel free to ask. I will keep you in my prayers that all goes well for you.
Thank you everyone for responding, itās so great to hear that everything went well for all of your cases. Really helps ease my mind, especially since it may be another 2 or 3 months until I know if I get surgery or not. The only thing I am nervous about is how it will effect my school year next yearā¦ Iām starting my first year of university. Guess Iāll have to deal with that issue when it comes up!
But thank you again, itās nice to be able to talk to people that have gone through the experience before. My thoughts are with everyone and I wish you all (and any relatives) an easy and full recovery.
My wife had brain surgery following several embos (about age 45). She was in the hospital about 3 days following surgery, and had to take it easy (as in a nap each day, fatigued easily) for a couple of months. But sheās built back up.
My son, on the other hand (non-AVM) had his amydala removed as it was the center of a hotspot causing epileptic zone out seizures. He was about 19-20 at the time. He spent about 1 day in ICU, then 1 day in regular, then RELEASED. He walked back to where we were staying, took a shower and a nap, then started to walk back to the hospital to wait with the family of a buddy he met having similar surgery. I had to stop him and make him put a baseball cap on! He had like 60 staples in his scalp and I told him YOU CANāT WALK INTO SURGERY WAITING WITH ALL THOSE STAPLES IN YOUR HEAD SHOWINGāpeople would have freaked out!
He took it easy for several weeks, but seemed to have no issues. When they cleared him to do athletic stuff about 3 months later, he and I went to the weight room. I saw how much he was lifting and I said Hey, the Docs said take it easy, ok. He said āDad, this is about half what I usually lift.ā
I had surgery On Jan 21st and stayed for 2.5 weeks. I had a bleed during the Angio right after surgery which is why I was there for so long. I had no after effects other than the bleed I was up and walking with in the first week and did not need any physical or occupational therapy. Now 2 months and 2 weeks post op I am ding very well. I still get tired, but have attempted to cut out my naps although I still need one now and then. I have not gone back to work, but my neurologist is in no rush to send me back as stress and fatigue can set me back as far as recovery goes. I wish you all the luck and hope you have a quick and safe recovery.
Donāt worry about next school year Before my surgery, I also worried about how soon I could return to work and how it would impact my work. I still care to go back to work ASAP (actually already started slowly) but in the bigger scheme of things it is unimportant - I am so happy to have come out on the other side of surgery in good condition.
I second that emotion ā Andreasā point about the ābigger scheme of things.ā To face brain surgery and then find yourself on the other side of it with an intact head and an intact future goes quite a ways toward putting all the rest in perspective.
And speaking of brain surgery, a worthwhile essay published in Time back in 2006, in case you havenāt seen it: http://bit.ly/70QAvW
Hi I had surgery on 9/4/2013 almost two weeks ago. I get where your at as I know what your going Through. On my profile is the angiogram of my avm so you may compare locations. My avm was front lobe and close to the surface about 3-4cm. First day after surgery I was fine just a headache and some eye pain. After two days I had problems coordination and planning and difficulty walking. I had some seizures like a stroke that lasted about 5-10 min at a time but after 6 days I was back to walking and doing well. By two weeks Iām almost fully fit with no problems other than my skin is numb where the operation was but this will come back in a few months. In all I feel better than before the operation and feel amazing without my avm. My eye pain was blood from the operation circulating my brain and this has passed. I have more blood going to my brain so sometimes feel like I have drank a few cans of red bull but thatās it so its not all doom and gloom. Good luck
