My daughter had a crainiotomy three months ago because of her AVM surgery and because of the Coronavirus pandemic hasn’t been able to get her bone flap replaced. It is considered an elective surgery. We have a lot of questions about how her recovery will progress once her bone flap is back in. I would love to hear experiences you have had with that part of the recovery and any ideas about how we can prepare for the day they finally give us the green light to go ahead and get the surgery. Thanks.
This is the easiest part of the process! I don’t believe there’s anything you need to do to prepare. I don’t know whether she had her bone flap beneath her skin on her belly or in refrigeration, but if it’s beneath the skin, then let her know that where the incision is on her stomach will be very tender the day after she had the cranioplasty completed, and she should try sit up or down in bed as little as possible. The day after, I was fine to move around, but her healing time may vary.
It’s a huge relief not to have your brain exposed anymore! I would also advise her not to rest too much weight on the flap just yet. I was sitting on the couch, my elbow propped on the arm of it, and out of habit I leaned that side of my head against the palm of my hand. It didn’t hurt, but it made the most disturbing crunch sound. This may just be a natural side effect of cranioplasty, but I would advise not putting much pressure on it for a couple of weeks.
Congratulations on getting this far!
Thank you so much! Hers is in refrigeration. I was wondering if you felt improvement in your abilities once it is replaced?
My daughter didn’t have her bone flap replaced until 15 months after the first surgery. The location of hers was sub occipital (so very low in the back, just above the neck). Technically she did not need to have it replaced at all. But we found out a year after the first surgery an angiogram revealed that there was either regrowth or residual AVM. So she needed a second surgery to remove that. We decided she may as well have the bone replaced. No issues. It’s been almost 2 years since the second surgery. Replacing it did not improve her abilities or worsen them. What area of your daughter’s brain was operated on?
Sorry you’re going through all this especially while we’re dealing with the pandemic.
**it is located on her right parietal lobe. It’s a flap that is about 3x5 inches that must be replaced. She’s not allowed to sleep on that side of her head and must wear a helmet at all times when she is not sleeping to protect her brain. It makes it difficult for her to sleep at night because if she accidentally turns on it it puts pressure on her brain and gives her a headache. Thanks for your reply. It helps knowing that there are others out there who care.
3x5 is a decent size. I have no experience of these things at all but I would think that removing the atmospheric pressure by having the bone re-fitted would be beneficial for her recovery. See the “My Amazing Brain” film I linked under UK AVM Support.
It’s amazing what is considered “elective”, isn’t it? My original treatment for my dural AVF (a specific type of AVM) was apparently elective, too, though it didn’t feel elective at all to me.
Oh yes, given where it is, that is completely different. I hope she can have the surgery soon.
Thanks for your encouragement!
I also had a cranioplasty (titanium mesh). I also have experienced the crunching sounds. It’s been over 2 years now since then, and occasionally still hear it click. Have you also ever experience this?
I had more confidence once it was back in, which may have lead to improvement of physical abilities.
Mine was in roughly the same place! She will sleep better once it’s replaced. It is such a relief to be able to sleep on that side again!
Yep, still hear the crunching sounds occasionally! They are less startling now.
Just wanted to let you all know that my daughter was allowed to have her crainioplasty last week. It has made a huge difference in how she feels. She used to have to take Tylenol constantly to control the headaches. After less than a week she stopped all other drugs and only takes Tylenol just before bed only to ensure a good nights rest. She still wakes late and takes an afternoon nap but her energy is so much higher. We have a lot of hope that will improve as the anesthesia wears off and she heals from the effects of surgery. She felt positive effects immediately after her surgery. So grateful that her doctor scheduled her for surgery when we told him her health was deteriorating.
I did think as much! I’m really pleased and, as you say, we hope she continues to get better and better!
2020 not such a bad year, then! I need all the encouragement we can find at the moment!
Very best wishes!
… Far too many exclamation marks… probably not good practice…
congratulations and so glad to hear your daughter is doing well. Many blessings for your whole family.