i have avm on temporal lobe 2.5 and schdule to remove it by embolization then craniotomy little scared but i am ok
i am happy that it will gone for forever please prayer for me
if anyone wish to give me any tips for before or after surgery will be helpful
i dont know if i should take my pillow and blanket to hospital or not ?
can anyone tell me how many weeks after you could take care of yourself i am 27 and my husband taking 2 weeks off
i dont know will i able to live alone on myself after 2 weeks
Hi Nilima, Firstly donāt worry too much, These surgeons are VERY good at there job and thatās why they are brain surgeons and do it multiple times every day 
, Regarding your blanket and pillow Iām sure the hospital can accommodate you, But you may not wish to take them in case they get dirty, Maybe you could vomit from something like food or medicine ?, Thatās just a thought, For me my craniotomy went great and my stay in hospital lasted 1 week, I was up and walking around the next day, But was very tired and low energy, My advise to you is to sleep as much as possible after the surgery this will help with the recovery, Sleep whenever you can even if thatās during the day and night. Good luck and I hope everything goes to plan.
Take care, Martin.
Thank you
i will take those with me and i am getting ready only 18 days left
did you remember how many hours after your surgery you woke up ?
Iāve had 2 , first one was due to a bleed so everything for about a week is a blur of sleep and heavy meds !, the second one I woke Later the same day in the ICU , then was moved to a general nuero ward, the surgery was more complicated for the surgeon and something that was supposed to take 3 to 4 hours took 10 !, but I didnāt care as long as they got it all out , after surgery youāll probably just want to sleep for a couple of days to rest that the best way the body heals
Hey Nilima,
I have had the misfortune of undergoing 6 neurosurgical procedures. No 2 have been the same, had the same recovery, nor the same result. So to be saying it will take X to recover is impossible. Itās a bit like asking āhow long is a piece of string?ā there are so many variables. ie where is the AVM located? how deep within the brain? What brain structures maybe disturbed in the process, etc. For one of my procedures there was a lady in the next room having exactly the same procedure I was up within 2 days but she had complications and was bedbound for a week. After a week she had recovered really well, where my recovery had slowed and stagnated. Every recovery is different so trying to compare is near on impossible.
My best advise, listen to your body, when it tells you rest, do so. I didnāt. Mine told me āLay down or Iāll put you downā I didnāt listen and it put me down with a thump.
Your body will tell you. DO NOT ignore it. Take the time you need, having a set limit or expectation is lining yourself up for failure. It will take the time you need to recover however long that maybe. I pushed myself and my body pushed back. A bit of advice- Ahh donāt do that.
Merl from Moderator Support
i am scared of wake up on vantilator i saw two people was there and soo uncomportable i am hoping that i stay only one day like ur second surgery
my dr very confident that its on right side and my age that i will do best but they told me that all surgery have risk so thats make me worry
thank you for you support i will update after surgery
you had 6 surgery omg how are you feeling now ?
my avm not very deep my neurosurgen told me its will best for me to get craniotomy but after they told me the risk have assosiate during surgery and
i am not much scared of surgery i am scared what will happen when i woke up will i able to see my family again or not that is on my mind all the time cant get out of that 
Hey Nilima,
I had exactly the same concerns, what I call the āWhat ifās??ā. That thing within my skull (my brain) makes me who I am. What if this happens, what if that happens I may not be āmeā when I wake up. BUT, I had to look at it another way. Would they (the drās) operate if it wasnāt necessary? NO. I had to weigh up my options. Leave it alone or operate. Leaving it was not an option, had I done so I wouldnāt be here today. So, on balance, I had no choice in the matter. Are there risk? well yes, of course there are risks, every surgery has risks associated and they have to give you the āworst case scenariosā but anything less than the worst is a plus.
The brainās more vital functions are deeper within the brain, so you say your AVM is not very deep, thatās a plus. My primary issue is right in the centre of my brain and it cannot safely be removed as itās associated with parts of the brain I need, so my surgeries have been to minimise ongoing issues, but they have not dealt with primary cause as doing so could kill me.
How am I feeling now? Well, as I often say " ā¦Itās all shit, itās just the depth that variesā¦" I am my own worst enemy. I wanted my life back, so I pushed myself to rehabilitate and I pushed too much, too hard, too far, too quick. After the first operation I got myself back to work. It wasnāt easy, but I did it. Knowing that I could get myself right and return to work I did the same after the 2nd operation too. It did take a bit more but I got there. It took some management of symptoms, some pacing of self and some pushing thru pain barriers. Being a typical arrogant male I ignored my bodyās messages and things travelled along OK(ish) for a few years. Then I had another major incident and I thought āIāve pushed myself before, I can push myself againā only this time my body pushed back. Again, with a big dose of arrogance, I thought āThis isnāt going to beat meā and pushed even harder, the problem was I pushed too hard and have now done myself permanent harm. It was my fault, it was self inflicted. I didnāt listen to my body. I saw a dr and his view was āThey operated, they fixed, so go back to workā so I did. In hindsight, It was telling me to slowdown but my past experience of pushing had gotten me back to ānormalā and I thought I could do it again. I was wrong. I had medical advice from a pcp and his advice was to go back to work, so I did, only to end up back in hospital requiring further surgery and this time there was no coming back.
Look, in all honesty, I can blame the drās, I can blame myself, but blame isnāt going to fix nor help anything. I have to accept and move on. Ohh donāt get me wrong, I still have days of the āPoor meāsā but as time has gone by Iāve had to learn to accept the reality of where Iām at. Iām not happy about it, not at all, but I have no choice.
I wish you the very best of luck with your procedure and my only advice,
Listen to your body, DO NOT do what I did and ignore your own bodyās warning signs.
Merl from Moderator Support
thank you soo much Modsupport
i will try not to push my body i am house wife and husband taking two weeks off and my mom will come to live with me and to take care of me untill i get better
i will update after surgery and pray for me
Best of luck Nilima. Iāll be waiting to hear how you have gone with it all.
My best advice, set low expectations on recovery. I had HIGH expectations and when I couldnāt meet them I beat myself (metaphorically) for not meeting them. In short I aimed too high, then forced myself to try and meet them. BAD, BAD idea. I wanted to be running the day after surgery, when even sitting upright was a challenge.
You have supports in place already and thatās a good thing, use them to aid your recovery. DO NOT OVER DO IT
Iām wishing you the very best of luck.
Merl from Moderator Support
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Nilima
There is nothing worth worrying about this. All you have to do is eat and drink at the right times, show up and they take you through the whole thing one step at a time. They look after you and you get better. As Merl says, if something hurts tell them ā donāt keep it to yourself ā otherwise just let them take you through it.
I only had an embolisation, so 2-3 days in hospital, then home. But I had 3 weeks off altogether and it was the first time Iāve had three solid weeks off for about 30 years. So I just told myself I was on holiday and being looked after. Itās just as hot in hospital as on a beach holiday, so not so difficult to imagine!
Itāll be fine.
Very best wishes
Richard
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Would love to talk to you.
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Danielle, did you know that if you click on another memberās avatar, up pops their profile, with a MESSAGE button. One click and you can send a private message.
Seenie
I had craniotomy done way back in 2000. Was 10 at the time. They let me go back home 2 weeks after surgery and was already in pretty good health. I went to a local physical therapist nearby for two weeks to play it safe and then a check up with my neurologist 1 months after surgery. They said everything was good and it was ok to be your self. I hope everything goes well for you.
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i inbox you
thank you John
do you have any problem in your life because of avm surgery
i want to get my normal life back
diagnosis to avm on last year july after waiting for neurosurgen appointment couldnt decide what i should do all the time stress and anxiety made me gain weight finally i am happy to go for surgery so i can live better
so only embolization worked for you didnt you needed any surgery or gamma knife treatment little confused 
Yes, just embolization. Often, where a craniotomy is proposed, embolization is done first, to reduce bleeding in the craniotomy.
I am not sure it has 100% fixed me yet, so I am still chasing the doctors but the theory is that Iām all fixed with one big blob of glue.
There are three main ways to fix an AVM:
- craniotomy
- embolization
- stereotactic radiosurgery, e.g. gamma knife.
Hope this helps
Richard
Best wishes on an uneventful surgery and easy, fast recovery. I hope you wake without pain and feel like you did before the surgery. Be strong and know that this is a blessing. You will be cured. You will never have to worry about that AVM. Your life will be your own.
My son has his surgery on the 23 of April. That week will be a good week for all of us! Believe that and it will be.
Lisa
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i will have embolization before surgery on same day wish same happen to me so i dont have to go for craniotomy 