Brain Autopsy


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Brain Autopsy

Postby myownwoman » Thu Sep 25, 2014 4:51 pm

I guess I don't know quite what to do when the inevitable happens. I understand the why just not the how.

Because of the PSP, Hospice will come in, pronounce time-of-death, the funeral home will come and take the body away, and eventually be cremated, with no autopsy unless something funky comes up and the cause of death is questioned.

How do I go about getting a brain autopsy done? or the brain sent to the Mayo Clinic?

Sorry to ask such a horrid question, but better now than when it's too late.
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Re: Brain Autopsy

Postby eplowman » Thu Sep 25, 2014 8:48 pm

You've come to the right place for the right answer. Robin is the expert on these matters. She may contact you privately, but I hope she also posts the answers to your question here so that others will know what needs to be done, when, and by whom. Planning ahead for brain donation is extremely important. A forum search on brain+donation should yield helpful information by others who have gone through the experience. I was one of those who received helpful counsel from Robin.

ed p
.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Brain Autopsy

Postby JoB » Fri Sep 26, 2014 9:10 am

Some University neurology departments [eg University of Pennsylvania] will do brain autopsies for free; this is done both as a service to the community and to provide materials for research; UofP quietly and with little bother to us collected my late wife's brain and subsequently sent us a copy of the autopsy report.

I don't know where you live, but, if possible, check around to see whether a similar service is available in your community.

Courage, Joe Blanc
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Re: Brain Autopsy

Postby Robin » Fri Sep 26, 2014 5:44 pm

Feel free to read about brain donation for PSP and other disorders on our website, brainsupportnetwork.org. There's a short webpage on brain donation and a brochure about it as well. We specialize in PSP/CBD brain donation to the Mayo Clinic.
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Re: Brain Autopsy

Postby myownwoman » Fri Sep 26, 2014 11:05 pm

Thank you all. Robin, I'll read this website tomorrow.
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Re: Brain Autopsy

Postby zeldadarln » Sun Sep 28, 2014 1:48 pm

The CurePSP Foundation has the detail information linked on their website:

Brain Bank Info: http://www.psp.org/research/brain-bank.html

Brain Tissue Donation Program Brochure is linked on the above mentioned web link.
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Re: Brain Autopsy

Postby Robin » Tue Sep 30, 2014 8:51 am

Yes, we use some of the CurePSP forms. We customize the consent form for the particular family.

Seven years ago when I made my dad's brain donation arrangements, I thought to myself "why isn't someone helping me with this?" I thought CurePSP or the Mayo Clinic should be arranging things -- calling funeral homes, calling three different pathology technicians, ordering shipping containers, instructing me how to order medical records, etc. But that's not what either organization does. That's why I started helping families do this. We've helped over 180 families donate a loved one's brain.

Along the way, families have expressed appreciation that we've been there to help them. Making comprehensive brain donation arrangements is a lot of work and most families don't have the time, interest, or experience with that task.
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Re: Brain Autopsy

Postby duits77 » Wed Nov 02, 2016 9:37 pm

I wanted to share our family's story, as the topic of the brain tissue donation is so important, but has also brought an additional level of stress and grief. It was/is important to me to have a confirmed diagnosis of my mother's illness due to the fact that I have children and we want to know what we can about our family medical history, especially since PSP is so rare. It was also very important to my mom to do something that would benefit research efforts. My mother passed away on June 5th of this year, so just a couple days shy of 5 months ago. We have yet to receive a report from Mayo, despite the fact that I have contacted them several times. It is frustrating and disappointing to have to wait so long for answers and information, after what we went through to participate in this process. My mother's passing took a grueling 10 days, during which time she was heavily sedated and non-responsive. Due to the necessary process of the "brain procurement" we barely slept for those 10 days, as we could not risk that she would pass away without someone being aware as soon as it happened. We were not fully prepared for what this process would put us through, and I wish that we had been better prepared for the possibility of such a scenario. Waiting this long for a diagnosis is proving to be very hard, beyond what we have already been through. I feel like we will not have closure until we have the final definitive diagnosis. My hope is that in sharing our story and my feelings, people are better informed and prepared than we were for this process.
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Re: Brain Autopsy

Postby Robin » Thu Nov 03, 2016 9:36 am

Niki,

I'm sorry again for your sad loss. I'll email you a specific suggestion about getting your mom's diagnosis. A family whose loved one died a day after your mom just received the neuropathology report last week, so I don't think your wait will be too much longer. We used to tell families the wait would be 2 months; now we tell families 3-4 months *after* the receipt of all neurological records, family questionnaire, and tissue. Clearly, Mayo is very behind as we have a few families who have been waiting longer than you have.

I am sorry you were under the impression that someone needed to be awake all the time with your mom. I can see how this added a lot of stress to your already-stressful situation.

Robin
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Re: Brain Autopsy

Postby zeldadarln » Sat Nov 05, 2016 7:17 pm

duits77:

For our family, it was nearly 5 months to receive the report, back in 2014. When the report arrived, it confirmed what we already knew ... my FIL was treated for the symptoms of PSP, and the final pathology report from Mayo - J'ville corroborated. If I recall correctly, the harvest of the brain is within 24 hours of passing, per the research protocol. Hence, we did not have the sense of "urgency," as you report.
Peace and Blessings!
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