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.

Hi everyone,
My partner had undergone a craniectomy almost 4 years ago, and ever since then he hasn't had his bone flap replaced. The doctors say he might have a titanium mesh instead. I'm really nervous about all of this & would love to hear your experiences both positive and negative, any tips or just relevant information you think I should know about.
Thanks in advance !!

Hi Sakura,
We've opened the topic of craniectomy and bone flap vs. titanium mesh to the BrainLine Facebook community: www.facebook.com/brainline/posts/10157573915362240

"My husband had a TBI in July 2018. The bone flap was removed and was placed inside the tummy for safe and sterile environment. However, flap got infected and titanium mesh was used after three months after TBI. He improved so much after the titanium mesh was done. We are six months now post titanium mesh. All good. Rehab and healing now. Go for it"
-- Prithee

"My sons bone was replaced with titanium. He also had his bone frozen, but surgeons decided to go with titanium after an infection. It was also a nerve-wracking time having to enforce him to wear his helmet, and of course, with a brain injury he kept forgetting"
-- Colleen

My 7 year old son was assaulted by a teenager in our neighborhood a little over a week ago. We took him straight to the emergency room at our local childrens hospital, where they did a CT scan and told us he sustained a depressed skull fracture. They did an emergency decompressive craniectomy and removed the hematoma that had formed. So far he has made a miraculous recovery. We are already home from the hospital, he spent two days in the icu and three in a regular unit before being released. He was fitted for a helmet; he doesn’t have any issues moving his limbs, his personality and speech are unchanged, he has slight balance issues and some dizziness and headaches but overall I think he’s doing well. I am freaking out a little because everything I am reading on this procedure and the following cranioplasty on the internet basically says he will not be okay. This forum has made me feel a little better hearing from people who have had this surgery before and survived. I am having a hard time getting him to slow down and I am just scared we will have to live like this for months. Initially the neurosurgeon said the flap would be out for two weeks, and then right before he was discharged they said two weeks to four months. Can anyone tell me the average time the bone flap usually remains out for? Thank you so much.

Hi my son had a tbi after falling down the stairs backwards and landing on his head - he had to have a part of skull removed twice to stop the brain from swelling - we have been through a tough time but six months on things are progressing - from my experience and with people that we have met along the way it seems to be six months before the skull replacement takes place - we live in Ireland and they use peek as opposed to titanium! While waiting for the cranioplasty my son was lucky enough to get four months in a rehabilitation hospital where he really benefitted - we have a long way to go and have been told that it will take at least 18 months to be what he will be (hopefully his full self) He had his skull replacement on Friday (using peek as opposed to titanium) and came home from hospital today - his stitches will be removed in two weeks and then intense physio and speech and language therapy to help with his speech and reading and writing. We are staying positive - he is 23 by the way

Usually 3 months

My boyfriend had a car accident last week and they said his brain was swelling and he had slight bleeding. They rushed him into o.r. And took out his right skull (bone flap). So the brain could have room and they said that if all goes well 3 months they'll have it back in. Each day he's improving by walking, talking, and eating from not knowing if he'll be ok cause the doctor said it's going to be about 5 to 7 days to see if he'll make it. But he's veering to the left when he's walking and his short term memory is affected. Long term memory he has but he's disoriented and confused. I'm so anxious but patience is key cause I understand this is a long recovery.

My husband had a massive stroke last year and is still waiting for cranioplasty, but with a titanium plate. He is paralysed down left side. I am hoping after the procedure, when ever this happens, it will help to walk again. A year on the waiting list is so disappointing and husband is depressed. If we had the money, we would pay.

I had a major stroke 12/2021 and then had swelling on the brain and had a craniotomy2/1/22 waited 11 months for cranioplasty Titanium plate surgery was cancelled 4 times I was58 wore a helmet for 11 months after cranioplasty you feel scared without helmet but I had noticed a big improvement with my mobility no more falling onto bottom or collapsing getting out of car. Found sleeping difficult for 2 years and am finally able to lay on plate side I think it’s improved my mental state and I’m looking to the future and travelling by plane I’ve recently gone b@ck to work but find the fatigue the biggest an£ most annoying thing yet also after 29 months am driving slowly but it’s independence

This sounds very similar to my mother. How is your husband now with his mobility?

I get "my skull put back together" Feb.6, 2019. Thank you for this blog. Springfield, IL

I had my skull put back together last year Sept 17 following post craniotomy staph infection... 2018 was a brutal year. i know exactly how you feel.

Hello, on the 28 July 2018 my husband was assaulted whilst trying to separate an altercation with some other friends. He endured severe brain injuries and on day 1 of his injury had an ICP monitor put into the skull to monitor the pressure and swelling. The swelling increased after day 4 and he had to go for an emergency operation to remove a part of his skull to release the pressure. The bone flap was placed in his abdomen area. After 4 weeks, he went to theater to replace the bone flap however the bone flap was infected and the operation did not proceed. After 2 months he developed hydrocephalus and had a shunt put in. However after 4 days this had to be removed due to over draining. A programmable shunt was then put in. This worked fine and was switch off remotely after 2 weeks when the fluid levels were ok. After a 3 month period, a cranioplasty was done using a titanium mesh to replace the bone flap. Within days of this procedure, he started to talk a little, memory gain, use of his right arm and legs, eating etc... The next step is rehab so that he can learn to walk again and use his hands. He had a seizure a couple days ago but the doctors say nothing serious as they just need to increase the dosage of the anti-seizure medication. He has been in hospital for the last 115 days and soon to be discharged to the rehab facility . He has lost a lot of weight but all good now. It's been a long, tough road but we can finally see the light. Any recovering patients had seizures post-cranioplasty with a titanium mesh?

Hi..
i hope you and your husband both are doing well.
my brother got TBI in 03.02.2023 and his bone flap was removed to allow space for swelling.on 21th march 2023 he got cranioplasty with autologous bone flap which was stored in freezer.But on 28th march he got SDH and after cleaning the blood same bone flap put back.On 14 th april again his bone flap was removed due to infection and after three month same bone flap was using in craniplasty but again after two month his bone again gets infected.
my younger brother having cranioplasty with autologous bone flap on 18th july 2023 but after two months the bone gets infected.Now Dr. said that this time he will use PMMA implant or Titanium mesh implant.
Can you please share your experience after titanium implant cranioplasty and which is better in both.

I had titanium put in after infected skull flap removed, before the mesh I was seizure free, about a month after I had my first one. its been almost 2 years and I'm still stuck on keppra. I was hoping it's a matter of my brain adapting to the presence of the plate but I fear that's not the case. anyone else having this issue?

Following a TBI due to an assault, I had to wait 2 years, for my crainioplasty. During this time, approximately a third of the top of my skull was missing. I forund this story whilst trying to see if it was normal to wait this long.

Did you wear your helmet while you waited? Husband is waiting for surgery and they say maybe August.

Where are your family member's living while they await cranioplasty? Have you all found a helmet that they can wear in bed while they sleep?

My brother was on a scooter and hit by a truck on May 31st this year. His plate should be finished and surgery to replace the left side is scheduled November 6th. He has been in the hospital the whole time. He is no longer able to to make words and this gives me hope that once the piece is on he will improve. He won’t be able to come home but I hope for some quality of life for him. The stress and anxiety has been unreal for both my mother and me and there is still such a long road to go. Thank you for this post. I needed someone to relate too and how they handle this situation. We all have not gotten to move forward yet to what is the new life. Wow it is so tough. This gives me hope.

My sister was hit by a car has bleeding on her brain doing surgery as I type this she has no ins ,will they send her to rehab or any help for her if she comes through all this ? I am her only family and she is at least 10 hrs away from me we have not been around each other in a while due to her drinking problems,it’s 6 days to Christmas my kids and husband are here should I go to her or wait to see what happens? Her boyfriend is with her I don’t know what to do ? Please help what would u do ?

Thank You! My nephew undergoes Cranioplasty tomorrow just over 12 weeks post severe head injury. Your positive story has helped me. I understand feeling anxious!

Hows everything??

Thank you for posting it definitely gives me some much need insight on the road ahead for my family.

Wow, all of these incredible stories. I was in a car accident 3 years ago (at 21) and rushed to the hospital for this surgery; doctors were predicting many different outcomes during my coma (none of which were very pleasing) to my family. There was a point in the hospital when I was literally on the verge of death, then the lord literally sprinkled me with another chance like the guy that got famous for sprinkling salt on the meat. Up and and out of the hospital in 3 weeks, helmet and all. 3 month later after the swelling went down got my surgery and prosthetic skull plate, no symptoms of anything at all. Made a vow to do spectacular things with my life as it is my duty to help others.

Hi there, Thanks so much for your story and for all the wonderful comments above. My father is going through his third surgery in 3 months and he did have to have part of skull removed due to infection and wears the helmet currently. We are told he needs antibiotics to kill the infection before he can go in and get the bone replacement surgery. We want to take him to the best place for this surgery. Where did you go? Please advise. Thanks, Jennifer Gilman

BALTIMORE SHOCK TRAUMA ON GREEN STREET, BALTIMORE MD. #1 in all the world

I am Jennifer's dad. Since she wrote this post I had 3 more surgeries. Peek replacement flap placed, infection cleanup, and Peek replacement removed. Now awaiting to be infection free for next surgery, titanium mesh. This is getting old. Wife and kids keep me going

My brother went under the knife last Sunday, April 29th, for ruptured aneurysm. There was massive bleeding and it all happened so quickly. What happens after craniectomy? He still hasn't woken up. It's been days. What can we expect? We feel so helpless and afraid.

This is a nice post explaining a lot about life on hold. I really appreciate your efforts to do so. Keep Posting.

This is really inspiring. My husband was in a car accident September 11th. We are actually in the hospital now. He had his bone flaps put back in. But has been asleep since the surgery 2 days ago. So I do not know the improvements yet. I hope his success story goes as well as a lot of yours. I worry because some of his brain was damaged due to lack of oxygen to the brain before paramedics arrived. So we will see. Thanks for the inspirational story

I had a cranioplasty using an artificial bone flap. This was preceded by infection meaning that my original bone flap could not be used. The four months that I had to wait until the Doctor was happy that the infection was under control were difficult. Loss of balance, difficulty with speech, impaired mobility, the list was long.
I returned home today, the difference is remarkable. I can walk, talk, and I am looking forward to gradually regaining most if not all of my function.

My husband had a motorcycle accident in May of this year, he had a cranial removed on his left side 1.5 weeks after his accident, he was improving, needless to say, I was kept from him for almost 2 mos by his mother and she signed to ha e him moved with a broken shunt in his brain to another hospital, he had issues, they had to do surgery in hospital room and he developed staff, he has had 6 shunts since one being a permanent one. He had his bone flap replaced 2 weeks ago and he has gone lethargic because he has anair bubble and blood behind bone flap. Dr.is just waiting, I m very concerned. I don't kniw what to do, he still has trach in and I want them to try a talking trach but getting push back from his mother. Is this normal?

A wife has legal standing over a mother regarding medical decisions for her spouse. Don’t let her do this or at least speak with an attorney.

Hello, I am 22 years old and I received a craniatomy after I was in an accident about 2 months ago, and my skull has been replaced a week ago. My question is those who had loved ones in a similar surgery or anyone who's gone through this yourself, does anyone know that life will recover like it was before? Or will this be almost a disable for anyone who has gone through this.

Hello quick question. My boyfriend recently was involved in a really bad motorcycle accident. He had many problem such as fractured skull on one side along with face and bleeding on the other side of the brain. Along with broken ribs from chest compressions. He recently had the surgery to fix broken face bones which I find is a good start. Then about a week not even more or so 3/4 days later he was cleared to start rehab. He has amnesia and can not remember who I am. They think it may be short term. I was wondering due to the fact that I've seen almost everyone post the same length of time. Is it usually 3 months after a craniectomy does the bone flap go back or in general a doctor looks to see if it's ready to go back? I'm really curious if anyone can give me some sort of info on that because google and research in general hasn't shown anything. I just want to know if it's 3 months due to the fact that before this accident we planned to start a family that next week. Thank you again everyone for your time and help.

My husband was shot in the head on 12/31/16. Due to his brain swelling they removed his bone in his skull. He lost feeling on his left arm and weaknesses on his left leg. Reading these comments give me hope that he will improve once his flip bone is replace. I really hope so. Our life's is not the same waiting on his to get better

Your story sounds similar to my mum. How did he pull up after the last 3 yrs?

Hi. My husband had splinter running across frontal skull taking away his right eye and had to undergo surgery.

Since then we've come a very far way but haven't yet reached how smart he was originally. Although, he is far better than what doctors had warned.

It is going to be two years in three months. I wanted to know if your spouse became all fine after craniotomy?

Hi everyone, I've had two craniectomies and since had to put my "life on hold" twice. The first was an emergency surgery to allow my brain to swell after I was hit in the head by a while playing softball.The second one was done to clean out an infection I got after my bone flap had been replaced. There was a brief period of time when I actually had a full skull before Then a mysterious infection hit my life Islas somehow become the x files. It's like a cruel joke that somebody is playing on me :( I now await my second cranioplasty without any idea of whether I will get back my own bone flap or a prosthetic. It's difficult to live with a bone flap I'm always paranoid about rolling onto my right side while I sleep. I'm also tired of wearing a helmet all the time.

That sucks. I had cranioctomy 13 years ago and recently sustained an infection. I now may have to have it done again. Hopefully, the science will improve to allow for alternatives to this rather harsh invasive procedure.

I saw your post and had to respond. I am a 29-year-old woman who is a year out of your exact situation. I suffered a subdural hematoma from a car accident, had a craniotomy with burr hole treatment (a straw basically draining your blood), but then it became infected with 5 staph infections after my staples came out.

I had the second craniotomy and washout one month after the first. I endured 3 months of IV Vancomycin at home after discharge but something felt awful in my head. I could literally feel the screws from my bone flap, pushing themselves out. I was in severe pain but was scared to go back to the original hospital! So I got a second opinion a county over.

Last June, 2015, a surgeon saved my life by believing in my concerns and went into brain surgery blind. No scans currently can allow our hardware to be seen accurately. In surgery, he found all the screws loose and and the bone flap destroyed, due to it hitting my healthy skull with every heartbeat. He performed a craniectomy and cranioplasty. Basically making a new bone flap, using pins instead of screws, and stapled it up.
You can overcome this. I am fully functioning now when before the 3rd surgery, I could hardly speak, had terrible short-term memory, and right-sided weakness. My saving grace was intensive outpatient therapy at a neurorehab outside of Detroit. 5 days a week, 5 hours a day, for 5 months. Today when meeting new people, they all say they would never have guessed all that happened by how I present myself and speak. The 3rd surgery changed my life for the better, as I know it can do for you!

What exactly do you mean by "regained the use of his left side"?

I am trying to post again...to the woman concerned about having the surgery and being home with your young son's. You are sent home with in just a few days. Your first few days home you are in need of some help from your family but you will be home with your family and very coherent when not on pain meds. I had a bit more than the craniectomy done but I am feeling so much better. Don't prolong your surgery. Symptoms can stay the same or worsen. No one knows when this can happen and for me personally I did not want that risk.

To the person who most recent posted about concerns to return back home to her two young children. I had this surgery 1/31/17. I was home 4 days later. The first 3 or 4 days I needed assistance from my 3 grown son's and husband. Week two I was able to be up and around. You can't lift the children or a gallon of milk at this time but you will be home with your children.

My wife after 11 years had to have her bone flap re-removed after replacing it. If I would have known back then I would have never had the use the same bone flap. Our neurosurgeon said it is safest to have a Prosthetic to replace it. I can tell you that the last three months have been filled with her fighting a infection and about five weeks in the hospital. Her bone flap was just replaced and and just overnight what a difference it has made having her whole again. No more nausea spells and balance issues.

I suffered a ruptured brain aneurysm in October while seven months pregnant, (thankfully baby survived the surgery and was born in January). During surgery I suffered a stroke and lost function of my left hand, and doctors could not put my bone flap on my right side due to the brain being swollen. Now I'm just waiting for a second surgery to put my bone flap back in. I'm nervous about it because I have no idea what to expect for this surgery and don't want to be in the hospital for too long away from my two sons who are two years old and a newborn. I know medical advise can't be given but if someone who went trough this surgery could comment? I will be checking on new comments. Thank you.

I had 3 brain aneurysms in 2006, had brain surgery and 2 months later MRSA infection. I just had my 11th surgery on Dec 6,2016 because of another infection that after almost 5 yrs set in. Now no skull again, home on vancomicin picc and waiting for surgery #12. Let's hope this will be my last? Chins up and move on, keeping a positive attitude also can help.

I feel your pain. I am awaiting my 9th surgery next June 2019 to replace my skull plate. Brain tumor surgery 3 times then infection, plate rejection, antibiotics, titanium back in and another infection, wash outs, infections.....Crazy time in my life yet I am very Thankful for my life even as it is. I have a wonderful team of MD's at JHU , loving family & friends and a God who loves me and has this in His Big Strong Hands. Hang in there and yes Attitude is everything!!!!

I've had the same surgery. The neurologist told my mom the same. In 3 months the swelling will go down and then bring me back so they would put the bone back to my skull. The funny this is, they didn't put the bone in any freezer they slit above my right abdomen and put the bone there for healing. I went back 3 months when the swelling went down but the docs told me they couldn't do it because I didn't have health insurance. That was in '04. I finally had the second surgery in 2010. Imagine living like that.

After waiting literally years to have your skull replaced, how is the outcome. I keep hearing the longer one waits, the more likely to have rejection of the new one???? I had a piece of mine removed 1-14-2018 when I fell 150 feet from a cliff and my skull was broke and a piece went into into my brain, thus they removed it all and I'm stuck w a half dollar piece gone!!! So far no side effects but am looking forward to getting g my head back !!!

I had both surgeries - first for a subdural hemorrhage, then 2.5 months later I received my bone flap. When I had my "partial skull" everything was a challenge. Eating hurt because it hurt to move my jaws, cold was an instant brain freeze, hot food was an instant headache, riding in the car was a nightmare - my brain was a loose egg flying around with every slight movement. The subdural hemorrhage caused brain herniation so by giving my brain room to work it all out, that issue corrected itself. When I got my one flap back it was as if someone snapped their fingers and I was all well physically anyway. I was out of the hospital in a tad bit under 46 hrs. Mentally it is a bit slower, but doc is referring me to some counseling. My Hubby too put our lives on hold while I recovered. Truly an amazing procedure. It has been just a bit over 6 months since the brain nightmare, and 4 months since the bone flap fix. I am now all better.

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