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 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.

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?

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.

Hello...I have a friend who is now as we speak under the hands of surgeons going thru a craniectomy. She is so young, only in her twenties. She was a passenger on a motorcycle accident and was his by another on coming car. She is in a coma and has had severe brain pressure, with 6-7 skull and face fractures. I pray this will ease the pressure for her brain and help her recover. She is a sweet soul. ...

Hello there,
My brother is going back to get his skull cap back tomorrow after it had to be removed to relieve pressure after his kite surf accident. He was in coma for a while. But luckily things worked in favor for him. He has been in rehab since and has done great progress. But yes for us it feels like life is on hold. We are hoping so much that all goes well and that the closure will give him some of life quality back. 

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

hi everyone i am looking up the procedure of craniectomy because my friend just recently had one and he has been in an induced coma for about 4 days now, how long before he will wake up if he ever does? 

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.

My dad under went a craniectomy last night following a stroke. We aren't getting many answers from physicians about long term because I guess they can't be too sure. Reading this is encouraging that these men are starting to get back to themselves.

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

Yes my children's father had fallen from a construction building, a piece of his skull as been removed

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