Keeping your skull fragment after surgery

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Keeping your skull fragment after surgery

Postby pseudotumor » Wed Jun 29, 2011 2:11 am

Has anyone been allowed to (or wanted to) keep the piece of skull after decompression surgery? I want to for some reason. :lol:
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Re: Keeping your skull fragment after surgery

Postby tennesseewalker » Sat Jul 02, 2011 2:24 pm

Yes, I have mine. It's in a glass jar filled with rubbing alcohol. It's in one piece. Pretty cool.
Mary
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Re: Keeping your skull fragment after surgery

Postby aspen13 » Tue Jul 12, 2011 9:45 am

I wasn't allowed to keep mine, and I really wanted to make a necklace out of it. :lol:
CM DXed in 2004 - 9.3 MM herniation
Pineal Gland Cyst DXed in 2008 - 11 MM
Degenerative Disc Disease L5 and S1
Hyperreflexia
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Re: Keeping your skull fragment after surgery

Postby gunflint » Tue Jul 12, 2011 11:41 am

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.
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Re: Keeping your skull fragment after surgery

Postby Kate456 » Tue Jul 12, 2011 12:59 pm

The image of the tonsils rolling around the bus floor put a smile on my face!

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.

If I had my fragment in a jar on the mantle I think my family would have me committed!

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Re: Keeping your skull fragment after surgery

Postby tennesseewalker » Tue Jul 12, 2011 3:23 pm

Kate456 wrote:If I had my fragment in a jar on the mantle I think my family would have me committed!


Good one...I keep mine in a cabinet out of view.

Kate, are you participating in the study at Duke?
Mary
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Re: Keeping your skull fragment after surgery

Postby Kate456 » Tue Jul 12, 2011 5:47 pm

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.... :lol:

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Re: Keeping your skull fragment after surgery

Postby pseudotumor » Wed Jul 20, 2011 9:14 pm

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.
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Re: Keeping your skull fragment after surgery

Postby tennesseewalker » Fri Jul 22, 2011 3:31 pm

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.

Good luck with your surgery.
Mary
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