ANA Discussion Forum
AN Community => AN Community => Topic started by: Syl on March 02, 2010, 09:12:26 pm
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This March 8 at 10 PM ET/PT Discovery Health's show Mystery Diagnosis will show a story about an AN patient.
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Yes, I got this email from the ANA also.
Can't wait for the episode.
Jan
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As a side note, "acoustic neuroma" was on Jeopardy earlier this week -- among a list of other things that cause hearing loss. We're gettin' out there!!!
Dana
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I am tuning in and making sure my husband , who has never really understood all the symptoms I had pre surgery and post surgery issues , watches it ...
I like watching this show and trying to see if by clues I can guess what the paitient has before they tell you ... guessed the one wehre a woman had lupus ... we could have been twins
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Dana,
I saw that on Jeopardy too! Looks like we've hit the big time! :D
Mystery Diagnosis is my favorite show (after Survivor), so I can't wait to watch this one! I'm getting tired of the reruns!
Lori
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There was also a mention of acoustic neuroma on House a couple of weeks ago as a false diagnosis. Suggested a hearing test and ruled it
out. I'm recording the program on March 8th, however the information says it's about a woman whose leg turned black?
Jill
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I love that show. I knew it was just a matter of time before we were noticed. I will be watching. Thanks for the heads up. :)
Sue in Michigan
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however the information says it's about a woman whose leg turned black?
The synopsis of the episode on the Discovery Health web site says:
"Diane's legs turn black and doctors think she's lost all circulation in her legs; they may need to be amputated. Teresa finds out that she's pregnant, but her joy is short lived when she wakes up to find the right side of her face completely numb."
Teresa is the star in our eyes, but it is Diane who gets top billing. The episode is titled "The Woman Whose Legs Turned Black", so be careful when you tell people it is about a woman with an acoustic neuroma!
Steve
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a long time ago somewhere here we talked about the invisibility of ANs ... the woman with her legs turning black probably gets top billing because it is more dramatic looking ...
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Very true, Soundy.
But I for one am glad that the show is doing a segment on Acoustic Neuromas. As we all know, most people have no idea that they are - and PR is always good.
Jan
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I don't get Discovery Health Channel, but I do get The Learning Channel and I know they broadcast Mystery Diagnosis as well. Does anyone know if TLC will also be showing that episode, and when? I'm not having any luck finding TLC's schedule. Thanks in advance!
Karen
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setting the DVR now...
K ;D
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I rarely watch TV myself, but make an exception for the Discovery Health channel.
That's where Mystery Diagnosis is in my area.
Jan
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We don't subscribe to cable, so I won't be able to watch. I always forget to tune in to shows anyway because we are just not in the habit of watching TV.
I'm sure it will be interesting to read everyone's reviews, though.
Sara
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I wonder if Discovery Health has a web site & if you can watch episodes there like you can with other channels?? ???
K ;D
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That's an excellent question, Kaybo. There are podcasts available for download at http://health.discovery.com/fansites/mystery-diagnosis/podcasts.html -- I guess we'll havve to check back and see when the new ones are posted.
Sara
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Just my opinion, but I was disappointed by the show.
While they mentioned neuroma and brain surgery, there was no mention of acoustic neuroma - which I guess was what I was expecting :(
I also had hoped they'd talk about the treatment options available to those with ANs - radiation vs surgery. Maybe I didn't read the "blurb" about the show well enough.
I found the other story - about the woman with the black legs - to be more interesting.
Anyone else have thoughts?
Jan
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I have to agree with Jan. I found the show disappointing. It really wasnt all that informative. I'm glad my 71 yr old mother didnt watch as I believe itwould have made her upset...It took me several days to convince her 'my tumor' wasnt going to kill me like my step dads cancerous brain tumor.
the story on the other woman was much more interesting. Just my opinion
JO
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I was VERY disappointed...I ran here and no one had posted yet so I waited until this morning. I figured that others would pretty much be let down like I was. I do feel sorry for that girl and she certainly got the bum wrap with the body part (being numb) but I have NEVER heard of that & certainly don't want to scare people that do have an AN!!!
K :-\
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I was disappointed too! But not in the show that I haven't seen yet - in the fact that I get 5 bazillion channels and not one of them is the Discovery Health Channel! >:(
Guess I'll watch it on the computer.
Lori
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Lori .....
Not to worry ..... as with the others, I was very disappointed. This case was not a "typical" AN case and no mention was made of acoustic neuroma. The Teresa featured certainly had a rough road, but I would not have billed that show as a show about acoustic neuromas.
Clarice
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I agree,
The segment was disappointing. Liked the black leg much more.
Ok so a pregnant woman is having numbness and tingling down her left side of her body. She is pregnant, BUT don't you think they would rule out stroke? They mentioned MRI's aren't done on pregnant woman. ???
Secondly, it turned out to be a trigeminal neuroma (5th cranial nerve), so it was not an AN. They did have to cut the hearing nerve to get the tumor. She is deaf and having the numbness to the face and I think tingling on her left side continues. At least it didn't mention post op headaches!
Our problem is we know too much!
Maureen
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I guess it's usually the reruns that I catch on TLC, so I guess I'll have to wait for that. Sounds like I didn't miss much.
Moe, they should have asked us all to be assistant producers! I'll bet we would have done it right! ;D
Lori
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Hi all
Saw the segment as well. Regardless of what I think, I have to commend Theresa for sharing her very difficult situation for national tv. Her struggles were tough.. and remain tough.. and I commend her for sharing her story as she did. Regardless if AN or not, as you can see, we all have taken extreme interest in our "AN Family" and have been looking forward to seeing national attention for the "journey" we endure.
we share in blogs, we share in YouTube (yeah, me....), we share here with an international contingency of AN'ers..... and as many of you noted, heck... you don't even get the cable channel it was shown. So, we still have the strong hold on getting the word out about AN's. "Strength in numbers" certainly exists here... and we continue to do what it takes to help those out there that don't know about AN's to recognize, aid and support our AN community :) At last year's symposium... heck, Chicago's Mayor even noted that it was "Acoustic Neuroma Weekend" proclamation! I'll take that as well!
so, to Theresa... well done! And may she experience continued wellness! :)
And for us here..... we forge forward to get the message out that we exist, we will not be ignored, we are here to shine on... and most of all...... we rawk! :)
I had coffee... hit me later! :)
Thanks all for hearing me out!
Phyl
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Even though I haven't seen it yet, I agree Phyl.. Theresa deserves a ton of credit. She has no control over how the producers choose to put the final product out there. I'm sure they edit the heck out of things to make it more appealing to a larger crowd. And we all know that we AN-ers are truly unique!
Jeopardy!, Mystery Diagnosis....baby steps. We'll be front page news before too long!
Lori
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I didn't see the program in question but apparently it was not a 'true' acoustic neuroma case with the kind of information we deal with on these forums every day making it a bit of a disappointment for many. Too bad. Based on the comments made about the show, I won't make an effort to see it.
Phyl has a valid point regarding the fact that while any kind of national publicity for acoustic neuroma is welcome, the woman featured in the segment was suffering with a trigeminal neuroma, not an AN. However, the fact remains that she was certainly brave to allow her case to be filmed and broadcast. I hope she fully recovers.
In light of the poor 'reviews' this segment has received here, one is moved to pose the rhetorical question: why didn't the producers use an actual AN patient? The answer is most likely because ANs are only ubiquitous on this website/forums but relatively rare in the 'outside' world. To those of us that spend any time on the ANA discussion forums, it may seem as if 'everyone we know' has an acoustic neuroma. The reality is: not really. I lived for over 60 years without ever hearing the words 'acoustic neuroma' and most of us were strangers to the fact that these benign tumors existed, right up until a doctor gave us the news (via the phone, for me).
Still, although the 'Mystery Diagnosis' segment - supposedly about a woman with an acoustic neuroma - was a disappointment and seems to have been somewhat hyped, I concur with Lori that sooner or later ANs will receive more publicity, hopefully making more research funds available and helping to educate the public on these small, benign but problematically located tumors that can permanently affect the lives of those of us who have had to deal with them.
Jim
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I did watch it and add me to the list of the disappointed. I commend Theresa for sharing as much as she did. Specifically, I was bummed that Acoustic Neuroma wasn't mentioned as that was what it was billed as, but in reality it was a Trigemeral Neuroma, which is slightly different.
I found the black leg lady story to be much more interesting possibly because much of the information on Theresa wasn't really new to me..
The struggle to get the word out goes on.. As with many here I'm sure, I struggle with the daily chore of not "looking" like anything was ever wrong. In many respects I'm thankful that I don't, however there's a small piece of me that wants people to know WHY I can't hear as well as they do, WHY a seemingly simple task of going hiking can be an internal adventure, or WHY going to the dentist and having to hold your mouth open for what seems like hours is such a draining exercise (as I did today)..
I digress..
Brian
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In light of the poor 'reviews' this segment has received here, one is moved to pose the rhetorical question: why didn't the producers use an actual AN patient?
To help answer Jim's question.... the ANA was asked by the producers for AN patients that were interested in participating. The rally call came from the ANA, looking for AN'ers willing to participate. Many, along with myself, responded, noting our unique situations. The producers chose from a selection of those that noted an interest in participating. Thus, the producers chose what they felt would be good to broadcast, based on info shared with them by those that stepped up, noting an interest to participate.
Teresa's situation is most definately unique and what we "define" as an AN would come into question, yet, the fact is... Teresa has won her "neuroma" challenge, pursues and participates in the AN realm (fyi, she is also an ANA support group leader in TX) and for me, I commend for what she has shared.
Hope that helps with answer.
Phyl
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I didn't get to watch the show because I don't get that channel with basic cable (I know I live in the stone age) Anyway, Phyl, I think you gave us a great summary of the show along with Jim and the others. Maybe one day we will be able to tell "the rest of the story" (Paul Harvey, Good Day!). Thanks for the information. Ann
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darn, i thought it was tonight so i missed it to. tonight's episode was 'i didn't know i was pregnant.'
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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
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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
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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 ;D. 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
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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 ;D
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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 ;D. 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
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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
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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
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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
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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
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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
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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. 8) Jill
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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 !!! 8)
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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 !!! 8)
yeah, yeah...... but at least on YouTube (did you see that yet, dood?), I'm always out there talking AN's :)
Phyl
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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 ;D. 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