Craniectomy: Life on Hold

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Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

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?

my question is this. 4 months ago while riding a motorbike apparently i crashed and the hospital had to remove one side of my skull due to swelling.I have recently had said part put back in here in Hanoi.I feel good though in the mornings i feel depressed and full of anxiety. It has been about 10 days since operation. Is it normal to feel frightened to go out?

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.

In February 28, 2015 my 11 year old son Andrew had a ruptured AVM and was rushed to the hospital where he received life saving brain surgery.  They removed a large portion of his skull to operate and relieve the pressure that had built up in his brain.  We were told that he would have mobility issues and that they couldn't tell us how much other damage it had caused until he woke up.  I am glad to say that Andrew is a miracle, the only way you can tell something happened is because he has to wear a helmet until his bone flap is replaced.  They have decided not to use his bone for one reason or another and a piece has been made.  We have just been told that Andrew will have his surgery on November 26th.  I was wondering if anyone can tell me if they have experienced this and what we can expect for his recovery for the replacement of the bone flap.

Nadine (nvermeulen@abacuspe.com)

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.

Hi everyone. I am new. My 5 year old had a craniotomy a year ago. He fell off the bed and had an extra dural heamorage. My question is how safe does he need to be now. Relating to sports and accidentally bumping his head. What are the risk and time frames after TBI?? Please advise me if possible. I am being a helicopter mom and driving myself insane. Mail me if possible! magsstrydom@gmail.com

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!

Has anyone been through this procedure or similar and thought you were fine, only to discover 10 years later cronic migraines, sleep apnea and cognitive memory loss. My son had a tree fall on his head at 20 ...lifeflighted for surgery and at age of 29 started have migraines with weekly syncope episodes. Only answer to pain is opiates which has a whole new set of problems

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

My daughter's bone was frozen for 3 months and then put back in but 6 months after that it didn't feel right so I brought her to the neurosurgeon and the CT scan showed that it was being re-absorbed. So she had to have (what was left of it) removed and a prosthetic piece put in. If I had known there was a chance of it re-absorbing I would've insisted on a prosthetic the first time. It was very difficult to have to go through more surgery and hospitalization again a year after her injury.

I had my brain injury after falling from a ladder in Oct. 2003. Had a craniotomy 2 day's later, needed to wear a helmet for 4 months before they were able to place my "bone" back in.  I hated, hated, hated wearing that helmet, but thought that one brain injury was enough for me so I wore almost all the time... but not so much when I was at home. My wife say's that when the bone-flap was placed back on my skull I was 100 times better as I was able to process, see and think much better.  RJ

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

The helmet.... I loved and hated that thing at the same time.

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!

Dear Dana, I'm so sorry for your loss. Thank you for your comment. I wish you peace. Rosemary

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.

Hi Rosemary,

I'm Dana from Buenos Aires. I've just read your post and I'm glad both Hugh and Bob are having a second chance in life. A very good friend of mine, Pablo, wasn't that lucky. He had a TBI at the end of last July and after fighting for 4 months he finally died of sepsis. He was only 37 and had two kids. I know what you're talking about when you mention setbacks. I somehow find comfort when reading stories like Bob and Hugh's. My friend couldn't make it but many others are still here, fighting and alive. And that's good. I wish you all the best.

Dana

my 19 year old son just had a pain in his head take him to the doctor was in a a coma had to do decompressive cramicomy he is awake now his right side can't move he can't see an he can't speak after three months I thank God for all those who survive an pray my son will to

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