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

[saralynn143]

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

[leapyrtwins]

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

[tenai98]

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

[Kaybo]

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   

[lori67]

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

[CHD63]

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

[moe]

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

[lori67]

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!   

Lori

[ppearl214]

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

[lori67]

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

[Jim Scott]

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

[Pooter]

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

[ppearl214]

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

[Desilu]

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

[Keri]

darn, i thought it was tonight so i missed it to. tonight's episode was 'i didn't know i was pregnant.'