Question for those who have donated brain tissue...

[Guest guest]

How long did it take to get the results after you

donated the tissue? It's been ten weeks and we still

haven't heard anything. I was told initially that we

would have a " preliminary " report in 4-6 weeks, with

the final report coming after 2-3 months. We haven't

even received the preliminary report.

I called Dr. Parisi (at Mayo) today to find out the

status but he is out until Monday. The assistant with

whom I spoke said that Dr. Parisi had ordered more

stains as this was an " especially difficult case " . I

wonder what that means? I hope they weren't treating

the wrong disease. I suppose even if it was another

disease, there probably still wasn't anything that

could have been done.

Anyway, I'll know more on Monday.

Thanks!

__________________________________________________

[Guest guest]

,

You MUST remember that no one treats MSA, PSP, CBGD or any of this type of

brain disorder. They " treat " the symptoms, the best they can. These doctors

are trying to give you exact definitions of what the actual brain damage was

(after the fact). Pathologists can take the time to be exact and like to be

sure of what they are telling you, as there is no hurry to treat the patient

anymore. Give them time, these are complicated and time consuming tests.

Don't fall into the guilt phase of grief over this. You did the best you

could under difficult circumstances. The doctors did the best they could

given the limited knowledge oof this disorder. Be glad your dad gave his

brain to find out and help others. Charlotte would not agree to an autopsy

or brain donation.

Take care and hang in there, Bill Werre

-------------------------------------

M Bruner wrote:

> How long did it take to get the results after you

> donated the tissue? It's been ten weeks and we still

> haven't heard anything. I was told initially that we

> would have a " preliminary " report in 4-6 weeks, with

> the final report coming after 2-3 months. We haven't

> even received the preliminary report.

>

> I called Dr. Parisi (at Mayo) today to find out the

> status but he is out until Monday. The assistant with

> whom I spoke said that Dr. Parisi had ordered more

> stains as this was an " especially difficult case " . I

> wonder what that means? I hope they weren't treating

> the wrong disease. I suppose even if it was another

> disease, there probably still wasn't anything that

> could have been done.

>

> Anyway, I'll know more on Monday.

>

> Thanks!

>

>

>

> __________________________________________________

>

[Guest guest]

Bill,

Of course I know you're right...that the disease

itself, regardless of which one it was, couldn't be

treated, just the symptoms. Still, there is this tiny

bit of doubt that sneaks in that makes me worry that

maybe he had something else that *could* be treated

and we just didn't know at the time. It's irrational,

I know, b/c with all his symptoms, it couldn't be

anything but some bad neurological illness. Still, I

worry from time to time.

On a funny note...my dad had an obsession with pine

trees. Their place was covered in huge pines, all of

which he put out as tiny seedings. When my sister and

I were discussing our irrational doubts, she said,

" What if we thought he had MSA and it turns out that

he just had a bad allergy to pine trees? " :-P I don't

mean to make light of anyone's illness, but we've

learned that we have to be able to find some humor in

our situation in order to survive. :-)

I'm so glad that we donated his tissue. I get a lot of

comfort from the fact that maybe through our donation

we're helping others down the road.

Thanks for your reply, Bill. As always, you've been

helpful.

--- Werre b.werre@...> wrote:

> ,

>

> You MUST remember that no one treats MSA, PSP, CBGD

> or any of this type of

> brain disorder. They " treat " the symptoms, the best

> they can. These doctors

> are trying to give you exact definitions of what the

> actual brain damage was

> (after the fact). Pathologists can take the time to

> be exact and like to be

> sure of what they are telling you, as there is no

> hurry to treat the patient

> anymore. Give them time, these are complicated and

> time consuming tests.

>

> Don't fall into the guilt phase of grief over this.

> You did the best you

> could under difficult circumstances. The doctors

> did the best they could

> given the limited knowledge oof this disorder. Be

> glad your dad gave his

> brain to find out and help others. Charlotte would

> not agree to an autopsy

> or brain donation.

>

> Take care and hang in there, Bill Werre

>

> -------------------------------------

>

> M Bruner wrote:

>

> > How long did it take to get the results after you

> > donated the tissue? It's been ten weeks and we

> still

> > haven't heard anything. I was told initially that

> we

> > would have a " preliminary " report in 4-6 weeks,

> with

> > the final report coming after 2-3 months. We

> haven't

> > even received the preliminary report.

> >

> > I called Dr. Parisi (at Mayo) today to find out

> the

> > status but he is out until Monday. The assistant

> with

> > whom I spoke said that Dr. Parisi had ordered more

> > stains as this was an " especially difficult case " .

> I

> > wonder what that means? I hope they weren't

> treating

> > the wrong disease. I suppose even if it was

> another

> > disease, there probably still wasn't anything that

> > could have been done.

> >

> > Anyway, I'll know more on Monday.

> >

> > Thanks!

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Don't be surprised if you don't hear something for another month or so.

It took the research hospital in Tampa almost 6 months before my

sister-in-law got the final write up of my brother's autopsy report. He

died from a very rare form of leukemia. The report is the last thing

they do and they want to make full use of the tissue and learn as much

as they can.

Sally in KS

[Guest guest]

,

Never give up your sense of humor, it is a wonderful thing! I know

what you mean when sometimes it is what you need to get you through

the day. I think we all do. I know I would rather laugh anyday than

cry!

God bless,

Belinda

> >

> > > How long did it take to get the results after you

> > > donated the tissue? It's been ten weeks and we

> > still

> > > haven't heard anything. I was told initially that

> > we

> > > would have a " preliminary " report in 4-6 weeks,

> > with

> > > the final report coming after 2-3 months. We

> > haven't

> > > even received the preliminary report.

> > >

> > > I called Dr. Parisi (at Mayo) today to find out

> > the

> > > status but he is out until Monday. The assistant

> > with

> > > whom I spoke said that Dr. Parisi had ordered more

> > > stains as this was an " especially difficult case " .

> > I

> > > wonder what that means? I hope they weren't

> > treating

> > > the wrong disease. I suppose even if it was

> > another

> > > disease, there probably still wasn't anything that

> > > could have been done.

> > >

> > > Anyway, I'll know more on Monday.

> > >

> > > Thanks!

> > >

> > >

> > >

> > > __________________________________________________

> > >