Mystery Diagnosis cable show will show a story about an AN patient

[leapyrtwins]

Although I was disappointed by the content of the show, I agree that Teresa is to be commended for all she has gone through.

From enduring the surgery and the side-effects, to letting her story become public property.  I think it's wonderful that she's involved with a local ANA chapter and I wish her only the best.

Jan

[CHD63]

I have to agree with you, Jan.  I was not disappointed in her story, only that it was billed as a story about a patient having been diagnosed with an acoustic neuroma, which she did not have.  She endured much agony on her journey and I, also, commend her for sharing it in such a public way.  ..... and yes, she has had many of the same post-op issues.  I wish her well and I am so glad she has been willing to pitch in as a Support Group leader.

For what it is worth, I never saw the call for patients willing to participate in a possible show, unless it was sent out before I became a member two years ago ..... I would not have been a candidate anyway ..... just curious how the call was made since we have several currently active forumites who have had very interesting cases.

Clarice

[sues1953]

OK just want to comment on this show.  First of all I don't get the Discovery Health Channel so my daughter recorded it for me so I read all of these comments before I saw the show.  I think it was very worthwhile.  I am not sure I would have noticed that it wasn't an acoustic neuroma, they just called it a neuroma, right?  I guess I have to watch without my grandchildren climbing all over me  .  I felt so bad for her having to wait until the birth of her daughter to get a diagnosis.  I believe they mentioned that it may have grown considerably during her pregnancy.

Sue in Michigan

[Kaybo]

My hat is definitely off to Teresa!  I guess that it was NOT promoted as a show about Acoustic Neuromas EXCEPT to our community...is that safe to say?

Clarice - I was wondering about that as well as I have NEVER seen anything put out by the ANA or anyone else about a "call"... 

K   

[ppearl214]

OK just want to comment on this show.  First of all I don't get the Discovery Health Channel so my daughter recorded it for me so I read all of these comments before I saw the show.  I think it was very worthwhile.  I am not sure I would have noticed that it wasn't an acoustic neuroma, they just called it a neuroma, right?  I guess I have to watch without my grandchildren climbing all over me  .  I felt so bad for her having to wait until the birth of her daughter to get a diagnosis.  I believe they mentioned that it may have grown considerably during her pregnancy.

Sue in Michigan

correct Sue.  Her docs did not that there was a chance that her pregnancy did speed up the growth of her Neuroma (correct, they kept referring to it as "neuroma" with emphasis that the 5th cranial was very involved, as well as it was pressing her brainstem).  There has been talk of estrogen receptors enhancing AN growth (many conversations here on the forums and if you search online, a few things out there as well).

Clarice, I'm digging through my private email inbox for the email that the ANA sent, seeking AN'ers interested in this (I believe I saved the email). Gimme a little time to see if I can find it.

Phyl

[ppearl214]

FYI... I dug through my inbox. I could not find the original email from the ANA seeking AN'ers that would be interested but... I did find an email from the ANA office, dated March 4, 2009, noting that someone had been chosen for the filming. It was an email distribution list that the ANA maintains, so I cannot confirm who all was on it.

Phyl

[Pooter]

I found this one:

From: Melanie Hutchins <localgroups@anausa.org>
Subject: Fw: Mystery Diagnosis - Acoustic Neuroma
To: localgroups@anausa.org
Date: Thursday, December 18, 2008, 10:52 AM
 
Good morning ANA Support Group Leaders and Co-Leaders,
 
We have been contacted with a really interesting proposal by the producer for the seventh season of Mystery Diagnosis on Discovery Health Channel.  Mystery Diagnosis is a cable documentary series that strives to raise awareness for rare diseases and disorders - they tell the stories of patients who have been misdiagnosed before discovering their actual diagnosis, or who have simply baffled doctors on the way to being diagnosed.  They just started casting for the new season, and are on the look-out for new and interesting stories.  
 
This is a great opportunity for us to get exposure on national TV for acoustic neuroma.  The only bad news about this is that their deadline is soon - they will be casting through January 9.  They did say if we can't get it together for this season - they could consider it for next season.
 
Was your acoustic neuroma misdiagnosed and would you be willing to tell your story? See the attached questionnaire for initial screening.  They are looking for 3-5 candidates.
 
If you are interested in pursuing this, please let me know within the next week.
 
Happy Holidays to you and your family!
 
Melanie Hutchins, BSW
Support Group Coordinator
Acoustic Neuroma Association

Looks like it went to Local Chapter Leaders, and then it may or may not have been passed on to local members of that chapter.  Our local chapter leader did pass on the original message..

Regards,

Brian

[Debbi]

Well, as usual, I am late to the party.  I tivo'd it and just watched it tonight.  And, yes, I was disappointed.  That isn't to suggest that I don't applaud Theresa for stepping up and allowing her story to be told - bravo indeed.  Just that the show didn't mention acoustic neuroma at all.  Hm, well, maybe it leaves the door open in the future for an Acoustic Neuroma episode.  Heaven knows, there are some incredible stories amongst our community.

Debbi

[leapyrtwins]

I got the email from the ANA asking for people who were interested in being on the show, but I don't recall when it was.  Since my case isn't "phenomenal" and there are so many who's stories eclipse mine, I think I suggested a few names to the ANA - or I suggested they check out the Forum and recruit a few people; I'm not sure which.

I also got the email Phyl mentioned about someone being selected.

I'm with Debbi in being hopeful that one day Mystery Diagnosis will have an acoustic neuroma episode.  We certainly have a lot of candidates they could choose from.

Perhaps we should start lobbying the producers 

Jan

[CHD63]

Thanks, Phyl, Brian, and Jan for sharing where this idea began.  I did not receive either email, nor anything in snail mail.  However, my journey with my AN was not technically misdiagnosed and certainly contained nothing that would constitute a "mystery" or anything of particular interest for this show.   

Clarice

[Jill Marie]

I haven't seen the show yet, will have to check it out on the Internet.  From what I've read here I'm going to guess that they went for a story that they thought would really get the viewers attention, what better than a story about some one going through pregnancy which should be one of the happiest times in her life but to have a serious undiagnosed illness lurking in her mind.  Perhaps to them a neuroma is a neuroma, they probably don't see a big difference between them.  They could do a show on me as I was misdiagnosis but in reverse, I didn't have an Acoustic Neuroma, I found out the day before surgery that it was a Facial Neuroma.  Just wanted to say thanks for letting me hang out with you guys since there isn't a Facial Neuroma support board that I know of.    Jill

[Joef]

Many, along with myself, responded, noting our unique situations.

you mean they could of picked you for the show? .. how cool that would of been !!!

[ppearl214]

Many, along with myself, responded, noting our unique situations.

you mean they could of picked you for the show? .. how cool that would of been !!!

yeah, yeah...... but at least on YouTube (did you see that yet, dood?), I'm always out there talking AN's

Phyl

[Soundy]

First let me say I missed it due to the unconscious state I fell into after a rough day at school ...

OK just want to comment on this show.  First of all I don't get the Discovery Health Channel so my daughter recorded it for me so I read all of these comments before I saw the show.  I think it was very worthwhile.  I am not sure I would have noticed that it wasn't an acoustic neuroma, they just called it a neuroma, right?  I guess I have to watch without my grandchildren climbing all over me  .  I felt so bad for her having to wait until the birth of her daughter to get a diagnosis.  I believe they mentioned that it may have grown considerably during her pregnancy.

Sue in Michigan

correct Sue.  Her docs did not that there was a chance that her pregnancy did speed up the growth of her Neuroma (correct, they kept referring to it as "neuroma" with emphasis that the 5th cranial was very involved, as well as it was pressing her brainstem).  There has been talk of estrogen receptors enhancing AN growth (many conversations here on the forums and if you search online, a few things out there as well).

Clarice, I'm digging through my private email inbox for the email that the ANA sent, seeking AN'ers interested in this (I believe I saved the email). Gimme a little time to see if I can find it.

Phyl

I was having hormonal issues for about 8 months ,  that led to hemorrhage type bleeding and a hysterectomy in March of 2007 ...

then  less than a month  later when I began to feel different as far as dizziness and hearing I requested an early MRI…wasn’t suppose to be done until October but doctor listening to my body talk to me ordered it and saw my  AN had gone from a 3.something mm baby in October 2006 scan  to the  3.2 cm x 2.75 cm .3.3cm in the April scan ... My surgeon believed that the hormone problems caused the growth spike … Bennie had sat for years with less than a centimeter of growth ,  but ballooned with the hormone bath my body was experiencing ..seeing results of that scan was the scariest part of my whole wait

so after recovering fully from first surgery and getting through a week of Day Camp I had AN evicted  July 2007