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Has anyone been allowed to (or wanted to) keep the piece of skull after decompression surgery? I want to for some reason.
When I was in elementary school I kept my tonsils in a jar after I had them removed. My sister brought them to school for show and tell. She dropped the jar on the school bus and they were last seen rolling around on the floor. I'm just saying.
Another thought for those skull parts....if you suspect you may be part of a family in which there is a genetic link for Chiari, volunteer to participate in the genetics studies that are being done right now at Duke. I heard a presentation on this and collecting DNA from bone tissue from the head was mentioned. Of course, you would have to enroll, etc. But it is really not a big deal if you meet the criteria and your doctor is willing to send info.
Most importedly, it is a very constructive way for us to really do something useful to help future generations avoid the pain and suffering we are experiencing. If they can find the chromosomal markers for Chiari, that could lead to a much better understanding of the condition and future treatments, cures, etc.
If you have already had surgery but have now found that another family member has CM, you can still apply to be part of the study. They just use blood tests and you don't have to go to Duke or travel or anything.
Kate456 wrote: If I had my fragment in a jar on the mantle I think my family would have me committed!
Not yet but I hope to be. I have talked with the research coordinator and now have to check some things out with my family.
Now that I think about it, it might be handy to have that piece of bone in my cabinet too so I would have proof that I am losing my mind....
I asked about this today and was told I wouldn't have a skull fragment, that they grind the skull into a fine powder while removing it with a drill. So I guess there's multiple ways to do this surgery.
I guess it depends on how much bone they have to remove based on the location and size of your herniation. My skull fragment measures approx. 2-1/2" x 2". They decided to cut it out in one piece rather than sanding it off a little at a time. There are as many different ways to do surgery as there are surgeons.