Deep Brainstem craniotomy- Please share your story with me

My title says it all. I was told my only hope to know for sure I will live is to have the riskiest craniotomy. I have 50/50 chance of waking up with a severe handicap, mental or physical or both. I would love to read as many stories as possible, with all the details. Surgery, recovery, rehabilitation, how are you today.... It doest have to be in the same location.. i just need to educate myself as much as possible.

Stay strong… Prior to my operation I was so drugged up due to the rupture I don’t remember much… But this new me is daring, fun, life is too short to hold onto negative feelings. All the Best. Bhav

I hope you are doing well. I first had a SAH in 1995 and the erradication of my AVM has been very complicated and still incomplete. I have told of the details of my adventures on my intro page, so please read that or if you have specific questions I will be glad to share. I had a craniectomy in the back part of my head, which has not filled back with bone yet. Initially the visible AVM was located in cerebellum, then later they found it extends thru my brainstem. I had 4x gammaknife radiation treatments over a period of 12years. I have a lot of pain and some vision,speech,memory, balance and coordinated movement problems; among other difficulties. I am very lucky to be alive and pretty much in control of my faculties (to an extent) but I need constant supervision and help with a lot. My husband is great! He has been my rock and has endured all of this with me. I hope you have good support. God is always with us also! I take it one day at a time. I live everyday to the fullest too. I wish you the best.

Dear Dandelionwishes.....i too went thru craniotomy at the age of 15 in the year 2001....i was in coma n after gaining consciousness was discovered to have lost 95% of my memory power.....just to give you a harsh reality...i didnt know which hand to use in the bathroom after i regained consciousness from my coma... from there till today in 2013 its been a really tough my memory power has improved to 80%....i still face 20% deficit n daily humiliations in office, social life etc etc.. but all that i can say is AVM surgery is one such phase of ur life where u cannot plan what steps u need to take to lead a life post surgery... i mean.... dont try to educate yourself more about AVM(only your family needs to know about AVM without fail)..... i never knew anything about AVM rehab or this website for almost 11 yrs after my surgery... it is bcoz of this ignorance..that my mind was able to keep itself occupied in daily routine without logging into the internet all the time n trying to find some or the other feedback on AVM... U get my point ?

try to lead life as though u didnt know that u r going thru an avm episode....keep ur mind busy...

tell yourself.....God chose u bcoz he knows u r strong enough for this challenge...

take care...


Thank you :)

I am so sorry you wnt thru all that and still do :( having a supportive husband is so importnatn! im glad you have that.

Thank you Santhosh,

I know what you mean because that is what I am and do. The only reason this is on my mind so much is because i have a choice to make, and this choice determines my very unpredictable future. I know that everyone is different and i cannot predict how i would come out of that surgery if i choose to have it...
I have never been anxious before. Only the past week since learning of my grim prognostic. I have 4 children and they still need their mother. It is very painful to look at them and know that they might not have a mother anymore. I am not a negative person. This is reality and denying it wouldnt be good either.
I do enjoy each day and this is not on my mind constantly :) I know that no matter how many stories i read, it will not change what the outcome would be for me. IT doesnt mean anything at all.

i can understand your fear being a mother of 4 prayers are with u..... from my journey of struggles....i am still 75% positive but 25% negative minded... but one wisdom in the corner of my heart says GOD DOES TROUBLE GOOD PPL BUT NEVER LETS THEM DOWN...i know its philosophical... but genuinely...God has a plan in place for you...keep faith...keep faith ....keep faith...take care.. :)

Thank you Santhosh, i did need to hear that :) I have been forgetting this too easy lately..