Mystery Diagnosis

[jerseygirl]

Hi, everybody,

I turned on TV sometime this afternoon and on TLC Mystery Diagnosis showed a woman who suffered unexplained headaches and neurological symptoms and who eventually was diagnosed with ... SCHWANNOMA of the 9th cranial nerve! The program showed her suffering and said that "the tumor spread from the 9th cranial nerve to 10th and 11th". We know that schwannomas don't spread, they originate on one cranial nerve and press on the rest when they grow. One would think that TV is accurate in portrayal. It also showed her getting on a plane and getting a 14 hour surgery somewhere in North Carolina (surgeon was unnamed). Luckily for her, the show continued, she did not die and fared very well although the recovery was difficult. People, so many of us would qualify for this Mystery Diagnosis program! I am afraid I might be the exception because I doubt anybody would like to know about headaches and neurological symptoms AFTER the surgery.

              Eve

[leapyrtwins]

I don't want to give away any trade secrets here, but it is my understanding that the ANA was approached about a possible episode of Mystery Diagnosis not too long ago.

From what I recall, although the ANA came up with several case studies, the producers ultimately decided not to feature an episode about ANs.  I think it had something to do with not having enough time in their schedule.

We can only hope that they will create an episode about ANs sometime in the near future.  It would certainly be helpful since many AN patients are misdiagnosed for years before they are sent for a diagnostic MRI.

Jan

[jerseygirl]

Wow, that is great! A lot of ANers would make great Mystery Diagnosis heroes. Producers will have a hard time choosing.

                                    Eve

[Jim Scott]

Eve ~

I've never seen 'Mystery Diagnosis' but it certainly seems interesting.  I've enjoyed similar TV programs over the years but I notice they don't usually stay on the air very long, probably due to poor ratings.  I would guess that not many folks really want to watch other people's medical problems unfold.  At least not on a regular, long-term basis.  Even with happy endings, it can be depressing and not exactly what most people would consider entertainment.  Like it or not, TV has always been primarily about entertainment, not education. 

That noted, I agree that an acoustic neuroma case would be interesting for this show.  Of course, they would have to gloss over how many doctors mis-diagnose ANs, sometimes for years, and how many patients ignore the symptoms, for years (ahem).  The surgery-or-radiation issue would have to be addressed, which would be interesting.  I would assume they would use an institution such as HEI as the site for surgery or radiation, based on their reputation for handling AN cases.  The ANA could certainly offer a host of possible subjects to study.  Maybe, some day?

Jim    

[wcrimi]

My mom saw that show and told me about it. 

[ppearl214]

Jan is correct and wasn't that long ago. It's a shame that the show hasn't followed up on it (to my knowledge, as of now.....).  It's great that they did on the schwannoma and hoping they continue to pursue this avenue of AN's.....

Phyl

I don't want to give away any trade secrets here, but it is my understanding that the ANA was approached about a possible episode of Mystery Diagnosis not too long ago.

From what I recall, although the ANA came up with several case studies, the producers ultimately decided not to feature an episode about ANs.  I think it had something to do with not having enough time in their schedule.

We can only hope that they will create an episode about ANs sometime in the near future.  It would certainly be helpful since many AN patients are misdiagnosed for years before they are sent for a diagnostic MRI.

Jan

[jerseygirl]

Jim, you are so right. I never watch this program and tuned into it strictly by chance, simply because I watched previously What not to Wear and TV stayed on that channel overnight. What made me listen is that the lady had increasing, incapacitating headaches, just like mine were. The difference, of course, is that mine were after the surgery, not before it. I immediately thought about an MRI with and without contrast as a diagnostic tool, which was eventually done on her and led to this diagnosis. The rest, I feel, is very sensationalized, meaning there are more surgeons than mentioned that can remove the tumor and the fact that schwannoma does not spread.  The word "spread" is used to describe malignancies, not benign tumors which by their very definition do not spread and stay localized. They can grow, however, and can kill if they press on vital organs.Yes, the surgery is very delicate but an overwhelming majority of people don't die and eventually recover.

I also realized that this program wants the "Happy End" and I would not be a good case because I would be  an example of "constant struggle"!

Phyl, regardless of my struggles, that would be great if the program featured AN because that would increase the public's and (maybe) doctor's awareness of it and will lead to a quicker and simpler diagnosis for some people. Just don't give my e-mail to producers, I don't think they want it!

          Eve

[28Lisa]

I saw the episode, it came on yesterday around 300pm Estern time, it was very interesting.....she was one of the lucky ones who had no post opt probs, I was like oh I should have my surgery there lol

[leapyrtwins]

Jim -

I rarely watch TV, but when I do Mystery Diagnosis is one of my favorites - along with Trauma in the ER and another show on Discovery Health about autoposies with a woman named Dr. G (the name of the show escapes me).

Actually the glossing over and misdiagnosis of ANs by doctors, as well as the ignoring of symptoms by patients (been there myself  ) are valuable parts of the show.  It's what adds to the "mystery" in the diagnosis.

And if I recall correctly, when talking about an AN episode the producers were actually looking for someone with an "interesting" story - complete with a lengthy diagnosis period and with post op "issues".  They don't just go with "best case" scenarios.

Jan

[Kaybo]

what a great parent yu are Cheri - to let HER decide and not exploit her like that...I agree that people need to be educated about things, but at what expense?
hats off to you!
K

[leapyrtwins]

FYI -

I got to the symposium late, but someone from the Forum mentioned that they announced that there will be a mystery diagnois episode made afterall.  I think it will be about a female patient from San Antonio.

Someone please correct me if I'm wrong - and, please give more details if you have them.

Thanks,

Jan