Craniectomy: Life on Hold

I'm new here. I had brain hemorrhage/stroke the end of May 2016. One minute I was at the airport getting ready to fly back home to Alaska after a routine stenting of an anuerysm. Next minute I was between hallucinations and in and out of consciousness. Turns out my brain hemorrhage and stroke where huge. Fortunately my left side was paralyzed and I was fit and am right side dominant so I've been recovering very well physically but came here looking for recovery stories. Thank you all for the positive cognitive recovery stories. They've given me ton of hope and a very positive outlook on getting my skull cap put back on in November. Thank you Tammy

My husband is having replacement done in the morning. I hope he does as well as some of you. He is worried, but have read him the encouraging stories. Thank you for telling them.

I am a craniectomy survived of 34 years when I was 8 I had a nail go thru my skull from a fall I got rushed to the emergency room and the doctor tried to clean the wound but didn't do a good enough job. He stitched me up and sent me home a year later I developed an infection on my brain. I complained about headaches, dizziness to my parents but they thought it would go away. It got so bad that i started pus and blood in 5 areas of my head and scabs that I scraped off then my parents knew something wasn't right so they took me to the hospital not making the connection to the nail accident a year prior and they didn't know what to tell the doctors they placed me in quarantine and isolated from everyone I felt like the boy in the bubble and I was scared. They ran test on me and told my father that they think they caught it in time To save my life. I they did the craniectomy in five different places on my head and I remember after the surgery it was itching so bad I actually put my own fingers in the holes in my head for some relief then when I notice I had craters in my head I wanted to see because I was a kid and I wanted to know what they did to me ... I went to the bathroom and took the bandage off and I will never forget what I saw ..all I can remember saying is I wonder it would ever close back up.... I never remembered the second surgery to replace the bone flaps back but the next time I looked after I got out the hospital everything looked almost normal.then I vowed to never talk about this to anyone in fear of it coming back .......so for 34 years till now am I able to speak about this openly Thank you ....Tai

My daughter was in a car accident 10/31/2014. She had a craniotomy with bone flap replacement a few weeks later. Now 15 months later she said she feels an indentation & a screw feels like it's coming out. Has anyone else experienced anything like this?

I'm praying for everyone with this issue I know what's it like! My son needs prayer November 19 he is getting bone flat back please pray everything go well for him his name is Malik.

God bless everyone of you. My son too was hit by a car at 16 in 2007. He suffered severe TBI and after about one and a half days after being placed in the icu had reached the "worse case scenario" that the doctor didn't think would happen just one day before. Until reading up on this stuff tonight I did not really realize just how close my son came to death. I just read that 50% of the people who have craniectomy surgery die. I have also read that they say the outcome of people who have this and survive is really no better than those who have had standard medical care with no operation. I truly do not believe that. Of all the people I have heard of that did or didn't have the surgery the disablement seems to be worse in those who don't have surgery. I don't know how they can compare it anyway because most of the people who have it are at the point of surgery/death. So if they didn't have the surgery and died how can you compare that? All I know is I thank God for my son's survival and your survival and for those who have lost the battle. God bless your families. I feel in my heart if they had not done the surgery on my son he WOULD NOT be here today And if there was any chance He survived he would not be the Jerame that he was before the accident the way he is today. He came through with very little brain damage And really is slightly different than before. I owe all of this to God who gave the doctor the wisdom to do this surgery, the excellent doctor who performed it, the nurses who watched him around the clock without ceasing and let the doctor know exactly when his pressure became too high, and the fact that the surgery was done immediately to prevent more swelling and damage. I guess what I am saying is this surgery is a miracle from God. We all I'm sure are very thankful for the chance to have our loved ones back and I thank you God for your blessings.

My son had a mva in aug 2011, he had a cranietomy. His sight too became infected after five operations they decided to leave him without that part of skull.( about as 10cm in diameter) the fear of him living like this drives me insane! To make things worse he has developed epilepsy. He refuses to wear a helmet, and even plays cricket! He says he would rather die on the cricket field than not play. As a mother i live in constant fear!

Was hit by a U- Haul Truck in 2001 when I was 18 years old. Was drunk and walking on a street with 50 mph speed limit, Fighting with my girlfriend and the next thing I remembered was lying in ICU with my friends and family around me.I thought I was an idiot until 3 months later my girlfriend told me she was in the street and i ran and pushed her out the way and got hit by passenger window at about 60mph. She said  I flew 15 feet high and 20 feet across. The EMTs told my girlfriends dad I was DOA. 3 months no skull.Never wore a helmet. Scar is the size and shape of a horseshoe. No real bad side effects or memory loss.Thank you Jesus for not taking me and saving my life

Thanks for the piece and sharing your stories. It is encouraging that there have been some promising progress in the surgery to replace the bone flap, which may greatly reduce the risk of infection and result in better aesthetic appearance. This study was just presented last summer: http://www.sciencedaily.com/releases/2014/02/140203122833.htm

http://journals.lww.com/neurosurgery/Citation/2014/06001/Multidisciplinary_Approach_for_Improved_Outcomes.3.aspx

Totally can relate to this. My wife got hit by a car crossing the street the end if August and the replacement titanium skull piece is scheduled for February 2 weeks away. I sure hope we only have to go through this once as I am beyond anxious! More like PTSD symptoms for me!  I so miss my wife and hope this provides another piece of this puzzle and Merry go round that won't stop! Thank you for taking the time to share!

Our GOD has enabled... life after a Craniectomy is a New Beginning for the Patient, Family and Friends. He has enabled everyone involved to accept the challenges, changes and applicable restrictions of the Patient, so therefore we must adjust given the Divine ability to do so. Never and I mean NEVER GIVE UP.