Craniectomy: Life on Hold

I have such mixed feelings about finding this site. My 33 year old son is 5 months craniectomy for a massive left hemisphere stroke caused by traumatic carotid artery dissection. His Cranioplasty was done 2.5 months ago using a PEEK implant and everything was going great until about 2 months later when his healed incision began to ooze thin yellow fluid. They opened part of the incision and cleaned out some areas, replaced some of the titanium plates and washed it all out with antibiotic irrigation. The cultures came back positive for Pseudomonas infection and he has been on IV antibiotics for 3 weeks. Unfortunately the drainage continues and he will need his implant removed next week. I am dreading the next few months and fear that he will require multiple surgeries. He has made such great strides in his recovery. So far he does not have MRSA and he feels great but a body can only take so much. I also worry about the skin flap. This will be the 4th time that incision is opened and the temporalis muscle dissected away from the bone. A second Cranioplasty holds an even higher risk of infection.
Worried Mom whose life is on hold too.

Hello,
October 2021 I had a stroke a week after having my daughter. Had a craniotomy on the right side. When I woke up after 10 days of surgery I was in a induced coma .i Could not move my left side of body. 3 months later. I’m able to move and hold my newborn daughter. Currently waiting for my cranioplasty. Bone flap was put in my stomach. Got some sucky news that my skin flap has shrunk and now my neurosurgeon wants to insert a balloon to stretch my skin for three months. And later put my bone in. I’m so scared of infection. I’m suppose to get married this year. But everything is canceled now. I’ve been crying due to him saying I need a balloon it sounds so scary. I’m 30 years old. 3 kids.
Anyone can message me email me
Steffnygc@yahoo.com

gm/hp fri ..always grateful 4 people shrin stories..im 51--.nov 2020 i went in 4 surgery to fix a thoraic aorta aneurysm. their was complications, while shaving the aneurysm down a blood clot floated up my spine and got lodged in bk of my skull, causing a cerebellar stroke,
(no major deficits) an emergency crainiectomy was performed, bone flap was not replaced, in feb 2021 a vp programable shunt had to be put in for proper cf (cerebrospinal fluid) drainage because a small pouch w/fluid in bk of head formed. the programable shunt had to be adjusted a few times for pressure.. sometime in june/july it was completely turned off, shunt is still in my head..iv'e come a long way, but still a bit off with balance, especially when bending over.I still feel i hv some more healing ahead of me. 1 day at a time.. thx for everyones time.. extremely grateful to be here.

My mother had an aneurysm 6 years ago, they inserted a plate on her right side and she was left paralysed on the left. In January of this year we discovered she had a bine infection on the right side and they needed to remove the plate and bone. Today she had a craneictomy and they removed slot of bone on her right side leaving her nearly with half a flat head. Originally they said eventually they would do a second surgery to put in an artificial bone/plate but have now said it would be too much of a risk to operate again and it will stay as it is with nothing there. Does anyone have any experience with this sort of thing? How is day to day with nothing but skin protecting the brain? Did you wear a helmet all the time? Side effects? I would appreciate any help.

My Father had his first severe brain stroke( left brain haemorrhage) on 11th August 2019 , We immediately rushed to the hospital , and he was put in ventilator . Then after 10 hours or so the doctors performed craniectomy . We were informed that it will be very difficult for him to survive after the surgery . After 14 days of surgery my father opened his eyes from coma. It was a new ray of hope for us .
after 25 days of stay in hospital he was discharged with his bone flap preserved in hospital .
His right body and limbs were completely paralysed , his speech was lost and the head did not had any balance . The tracheostomy tube was still inserted and the feeding was done through Ryles tube . It was hard to believe that this man was my father . He was almost like a lifeless body . All he knew was to cry and cry loud .

On November 23, 2019 my father again had the Cranioplasty (joining back the bone flap) . Then gradually he started gaining some balance on his head . He could swallow his own saliva , some liquid food . We thought that one day he will be back in his old form .

Then on the night of 9th January 2020 , he again had brain haemorrhage now on the right side of the brain . This caused his left body to get paralysed . We again rushed to the hospital . The doctors suggested another round of craniectomy . But this time his survival chances were even more less . He stopped responding and sometime and the doctors said that he has attained brain death . But his heart was still working as he was on ventilator . On 11th January ,2020 at 11.30 am his heart stopped due to cardiac arrest .

My father is no more . He is gone . Gone too far , with all his pain left behind .

Craniectomy can not always save the life . It can just delay the death .

I’ve just had a craniectomy (due to a mass growing inside the bone) and it was replaced with titanium mesh.

I’m doing remarkably well- No infection and no bad things happening like i was warned. There is obvious pain and it was very strong for the first 2-3 days but it is easing now some. Only complications I had was with my breathing but that was due to issues with my asthma and the anasthesia, not the actual surgery causing issues itself.

I feel very tired and although I’m not having any major issues with stoke like symptoms from swelling and all, doctor has still put me in a walker for my recovery as I already have some balance issues and I can’t afford to fall and injure myself while I’m healing. They’ve also given me a raised toilet and are doing in home therapy- something I didn’t expect since it’s not a surgery for Mobility. My fingers are a little bit fumbly but nothing serious. I couldn’t use the left side of my face for app 3 days but that’s improving now as swelling is going down. Doctor said that’s common and normal for many people.

I’ve been very encouraged with how things are progressing! I think it’s super important to 1) get a great doctor (mine is famous in the field and was thankfully within my insurance program. Not only is he an active surgeon but he’s also the department head of neurosciences and the lead researcher for the Brain rumors and treatment lab at Emory university in Atlanta). 2) be so careful about infection! My doctor gave me extremely strict orders about how to prepare for the surgery and how to love afterwards. It seemed excessive but I don’t even have irritation at my wound site and now signs of infection at all, despite the fact that I have 3 immune diseases that severely compromise my ability to fight things off. I’m thankful he went the extra mile with prevention of infection.

I was wondering how long it takes most people to recover their sense of feeling around the incision. With a past surgery I had with a lot of cutting, it took a while but started to come back a little at least pretty quickly. But so far I haven’t recovered any sensation yet around where they cut. So was wondering go about that tbh.

Hope everyone progresses well with their surgeries and recoveries!

Hello. My daughter had a major stroke 10 years ago. She was doing fine with her flap replacement. But 10 years later the body has a sorted the brain flap. She goes in to.orrkw to remove any fragments and the plates that are poking through her skin. They say 3 months and she will get her new brain flap fabricated by them. My question is how long is the hospital stay after this? And the side they are operating is completely dead anyways due to the stroke. I am wondering about complications? .

Did anyone suffer from personality changes ,short term memory loss or slight abnormal behavior after craniectomy ? If yes, then how did it take to fully recovered from that? Plz give me answer of this.. A very close friend of mine has gone through surgery 3 months back.. Now he can walk , eat and talk..but behaviour is very weird. I m very tense

Hi everyone, I'm after a bit of advice please. Following a few weeks of 'unusual' behaviour my mum had a fall. To date we are unsure whether the fall caused the haemorrhagic stroke or whether she was suffering a minor bleed which culminated into her falling over. She had burr hole surgery and things looked to improve over 24-36 hours but then her brain swelled so much she suffered another stroke for which she underwent emergency craniectomy. It's coming up to 2 years now that the bone flap has been removed and we are still awaiting a date for the procedure. She desperately wants to have it done but I'm so concerned hearing all the risks and my mum is rather a complex patient (atrial fibrillation -and on warfarin, has a metal heart valve, suffers with heart failure, has scleroderma - plus a whole other list of health complications). I just sometimes think that its too risky to have the operation as she manages to get by as she is - although I have noticed some deterioration in her overall mental health during her recovery and it appears that could be improved by having a titanium plate put in. What I really want help with is my mum is desperate to go abroad (12 hour flight) to visit her relatives, but I'm not sure how comfortable the journey would be for her (given cabin pressure etc) does anyone have any experiences they can please share with me regarding how air travel has been for them. Is it even advisable to travel with just the bone flap? I'd really appreciate any insight.

My best friend Suzette has been going through hell over the last 2 years. At 37 she had a brain aneurysm and is just had her 3rd titanium plate removed because her body once again had rejected it. She has been diagnosed with MRSA also so her options for antibiotics are limited which makes it seem next to impossible to stop any infection she may acquire. Today she is recovering from her last plate removal surgery with what seems like no hope in site for her. Its so very hard to watch someone be treated like a guinea pig. From the beginning to now she has had 19 surgeries which include multiple shunt surgeries....things seem so hopeless. After the first plate replacement surgery she literally got out of bed 3 days later and walked down the hospital corridor, not she needs help to sit up and basically move. Suzette is absolutely exhausted and has become trapped in her body....its heartbreaking to watch. Is there anything else that can be done other that trying the same thing over and over?

Also, I have been hearing that CBD oil can increase brain function and help with aneurysm and stroke victims? Any truth?

I should mention that Suzette had suffered a stroke during her coil surgery to stop the bleeding causing her to have limited function on her left arm and leg. Therapy had helped her in the past gain back her leg and arm functions but now it seems that because of all her complications she is slipping backwards and losing those abilities quickly with every failed surgery.

Any suggestions or comments would be greatly appreciated...