A few months ago I asked if anyone had experience with a Bone Flap re absorbing - no answers. Now, I know that my Bone Flap is disappearing like the West Antarctic Ice Sheet. I will have a prosthetic BF put in next month. Has anyone had this procedure? They have to use expanded to stretch my scalp, but not mess up my shunt in the process. If anyone knows anything please let me know what to expect with surgery, recovery other things.
My daughter had two surgeries to repair her bone flap. The second one they used a prosthetic piece made out of titanium and that was 3 years ago, no issues to date! She does not have a shunt to deal with though. God bless you and i pray for your surgery that this will work!
Hi Current#17. I don't know what a Bone Flap is so suspect this doesn't affect me. But I just wanted to say I'm sorry that noone responded to you before. It can be a bit depressing if this happens - I have experienced it myself with a secondary condition caused by my AVM. But I'm sure it isn't that people don't want to respond, just that it doesn't affect them and they don't think they can help. I really hope that any other sufferers get in touch and that your operation goes well. Best wishes.
Hi - I had a crainiectomy (vs. a craniotomy); the difference being that the bone flap wasn’t reattached. I called the surgeon to see if I needed to schedule another surgery to put it back on/in; he said that I didn’t need to. I really liked that answer, so I just went with that.
That was a few years ago…I’m not sure if bone regenerates or not; my thought-process is that if it does, bonus! If not, he didn’t seemed concerned about it.
Thanks for answering. According to my paperwork, I had a craniectomy, too. But, 2 months later they replaced the bone flap. It has receded so much that a lot of space and a HUGE dent is where the Bone Flap was. Because nothing hard is covering my brain I can’t do things i want to do- ski, bike ride. I do rock climb with a helmet. That’s why the prosthetic. Or I’d have to wear a helmet all the time.
Hi ~ I had my craniotomy in Feb 2004 to remove my AVM. After a couple months in rehab I went home... by July I was beginning to fall apart! Something was wrong mentally and physically . I was rushed back to MGH where the found that I had a bone infection and would need my bone flap removed. Because it was so damaged eventually I would have a replacement made. February 2005 I had a porex bone flap replacement... It was a long road to go without a bone flap ! wearing a helmet was tough! being home bound was tougher. It has been 9 years now and all is well ... I'm pretty sure they have come up with some new and better techniques for the recovery process.
I hope this helps....
Good to know- thanks!
A bone flap is the piece of skull bone they remove to get into the brain to get the AVM. Then they keep it in a freezer til time to replace it. My mom told me that senator from Tucson who was shot in the heaf had her bone flap kept in her abdomen instead of the freezer. But that’s an extra 2 surgeries my neurosurgeon said.
I know it sounds weird to ask , but what is protecting your brain? My mom is crazy about being cautious.
What is porex? My neurosurgeon days it’s a simple procedure compared to all I’ve gone through do far. That is a long time to wear a helmet. I don’t want to wear one again.
My son had a craniectomy, and then cranioplasty 7 months later to replace the bone flap. My friend's son who had a tbi had a craniectomy then cranioplasty 2 months later. His bone flap reabsorbed and he had to have a second cranioplasty with a prosthetc flap. Apparently this is more common in children than adults.
I had to wear the helmet for seven months because they removed my occipital bone flap and there was nothing protecting my brain. They made a prosthetic bone flap out of a material consisting of porex, for reasons unknown to me ... it wasn't ready until feb 2005. It took a long time to recover from the bone infection This kept me in the hospital for another 3 months. I'm sure your neuro will discuss the options with you regarding what will be used for you. My event was a while ago so I'm pretty sure they have improved things~ All the best !
7 months! That’s so long. I don’t know what the new BF is made of, but they already measured me and are making it. I have my surgery 1 month from today.
Wow! That’s exactly what happened with me. You are the first person to know of this complication that i have heard from. My neuro surgeon said it happens about 25% of the time with craniectomies. But, he says this surgery compared to my others is not as big of a deal since they don’t actually go into the brain. But, I still just don’t want to do it.
Hi Jacquelyn- my son went 7 months as well with a helmet. Gortunately he didn't have any infection. They attempted to put back in at month 3 but he still had two much brain swelling so they waited. You are the first I have heard that had to wait that long.
How old was your son when he did this? I hope he is ok now.
I had to wait for my replacement ~ Due to the bone infection, Osteomyelitis, I was on a 3 month IV antibiotic treatment in the hospital with rehab . I'm sure there are others out there who have had these journeys...
I hope all is going well with your son ~
My son was 21 when he had his craniectomy. 22 when he had his cranioplasty and he is 23 now. He is doing well considering. My friend's son whose skull was reabsorbed was 14 when he had his craniectomy and 2 cranioplasties.
Not to sound like a total idiot, I have no idea; I’ll need to ask my surgeon/his assistant.
It was so long ago, and I don’t usually hand-over such a seemingly important piece of information; at the time, he sounded pretty confident, and I was completely all-in for him not to cut into my head for a 4th time. He didn’t seem concerned, and I’m sure that he had a great reason; and I need to ask him.
Thanks for addressing this.