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 Brain autopsy 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Brain autopsy
robin wrote:
The *only* way an MD can know that he/she got the diagnosis right or wrong is if there's autopsy confirmation. I feel confident that all the MDs who diagnosed LBD but now see that it was AD or mixed dementia (AD plus VaD, usually) think twice before giving an LBD diagnosis to a patient. As MDs learn more about the clinical-pathological correlations, their diagnostic accuracy will increase. An important step that enables those clinical-pathological correlations is brain autopsy.

Are delusions and hallucinations a symptom common to all those diagnosed with possible LBD .... Do you know, Robin? I just read the post of someone who said their spouse did not have hallucinations. It is a primary symptom in our house.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Jan 27, 2011 11:53 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Brain autopsy
The LBDA lists hallucinations and delusions as 'core features' in their Symptoms/diagnostic criteria guidelines:
http://www.lbda.org/category/3438/symptoms.htm

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jan 27, 2011 12:28 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain autopsy
Hallucinations is a core feature. ("Core" doesn't mean required.) Delusions is a supportive feature.

You might've read a post I wrote awhile back about a local support group member who was clinically diagnosed with DLB but had PSP upon brain autopsy. The person had no hallucinations.


Thu Jan 27, 2011 2:45 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Brain autopsy
I got my Mother's brain autopsy report today. It was "diffuse Lewy Body disease". And nothing else, for which I am grateful.

The Final Diagnosis is:
1. Clinical history of cognitive impairment with hallucinations/delusions approximately five years.
A. Marked substantia nigra neuronal loss and depigmentation.
B. Mid brain and occasional cortical Lewy bodies identified.
C. Finding consistent with diffuse Lewy body disease.

2. No significant gross brain atrophy present.

3. Negative for vascular thrombosis, significant atherosclerosis, cerebral infarction, encephalitis, granulomatous disease, other neurodegenerative disorders or malignancy.

In the summary, the neuropathologist goes on to say " examination reveals occasional senile plaques and granulovacuolar degeneration in Hippocampal neurons, below the threshold to consider Alzheimer's disease seriously."

I was sure that her disease was Lewy Body, but I am glad that I followed through with an autopsy. It means a lot to me to know what we fought. I had the opportunity to view the tissue slides under a microscope with the doctor, who explained what we were seeing. The brain tissue was so abnormal it makes me proud of her that my LO did so well for so long.

The brain was not donated as no-one wanted it in WA State, but I will check with the local universities to see if I can find someone who can use the slides. Thank you to everyone who helped me so much through this journey. I literally checked the website every day for years. Take care and good luck to all. AnnieN

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Annie, daughter of brave Marie, dx 2007 and in ALF


Fri Jan 06, 2012 11:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Brain autopsy
Annie - glad you got the answers that you needed. May your mom rest in peace. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jan 06, 2012 11:56 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Brain autopsy
Thank you for the report, Annie. We're using the same neuropathologist [I think] that you did and he told me he will use the tissue for research 'if the pathology is interesting'.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jan 07, 2012 2:27 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain autopsy
AnnieN,

Thanks for letting us know your mom had DLBD. Having DLBD without AD is unusual. It's a shame no one in your state was interested in the brain donation. (I find it incredible that the UofWA wasn't interested.)

I've been helping another family today read/understand the neuropathology report they received. It's frustrating that neuropathologists don't use the same approach. Did your mother's report indicate the "likelihood" of clinical DLB? (The neuropathologist would've relied on this table in the neuropathological criteria for DLB -- http://www.ncbi.nlm.nih.gov/pmc/article ... /table/T2/)

Good luck to you!

Robin


Sat Jan 07, 2012 3:57 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Brain autopsy
Annie, Thank you for your mom's report. I, as you, want to know what we were fighting and what brought so much sadness for the last 8 years. I will also post when I get Frank's results.
Thanks again,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Jan 07, 2012 11:37 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Brain autopsy
I haven't been following the brain donation or autopsy threads because Mom has very specifically stated "no donation" and I can't afford an autopsy. But I have a kind of off the wall question.

If an autopsy is done and someone who loved the deceased very much helped them to gently leave this world, wouldn't an autopsy show it? Would a brain autopsy?

Don't get me wrong. I am not planning anything. But this is a question that has occurred to me more than once.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Jan 09, 2012 4:30 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Brain autopsy
The answer is "probably no." If someone was helped out with extra doses of morphine, for example, that wouldn't show up on a cellular analysis of brain tissue. A toxicology report is not done on the brain tissue. If someone was helped out by some means that triggered a stroke, then certainly the stroke would appear but it would be impossible to determine the exact time frame.


Mon Jan 09, 2012 5:07 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Brain autopsy
Thanks, Robin!

Now, do you know of any way to get someone else to pay for an autopsy short of ignoring the deceased's wishes about brain (or anything else) donation? With Mom's family history, it would be helpful to have the results of a brain autopsy, but I want to honor her wishes to be cremated - whole and all at one time. And I really can't afford the autopsy. (Luckily, Mom's still physically healthy-ish.)

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Jan 09, 2012 5:23 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Brain autopsy
Kate, I don't see how you can both honor your mother's wishes and have a brain autopsy done. Not that you asked but I would choose to honor her wishes even if it means never knowing for sure. JMHO, of course, and given affectionately.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jan 09, 2012 5:47 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain autopsy
Kate,

There is only one place I know of that offers free autopsies to everyone BUT (a) the brain is kept for research, and (b) it takes about 18 months to receive the report. If that's of interest, see the University of Miami's website here:
http://brainbank.med.miami.edu/

Harvard does free autopsies for a few diagnoses, but DLB is not one of them. Also, the brain is kept for research.

Robin


Mon Jan 09, 2012 5:50 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain autopsy
Kate,
Also....if you don't want the brain to be reserved for research, check with your local hospital. Some may be willing to do the brain autopsy at no charge (and then the brain is destroyed). If possible, find a hospital with a neuropathologist on staff. Otherwise, I'm not sure I'd trust the findings!
Robin


Mon Jan 09, 2012 6:02 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Brain autopsy
I'd also want to honor my LO's wishes, but what about the LO's who are living, Grandchildren, their children, their children and etc. Dr's always want the health history of our family, cancer, heart problems, high blood pressure, knowing what a LO died with might be just as important. I haven't been faced with honoring or not, so it's just my feelings at this point.

Take Care,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Jan 09, 2012 7:17 pm
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