"House"

Chiari will be the featured subject of the TV show "House" on May 3. The producers are working with a real live Chiarian to tell parts of her story. This girl:

http://www.seattlearch.org/FormationAndEducation/Progress/052007/TeenGraduationProject5-17-07.htm

What she has gone through (even since the above story was written) is unbelievable. I have the greatest admiration and respect for her!

A big event for Chiari families to have such a big audience learning more about Chiari and the terrible head pain that goes along with it. To be told by doctor after doctor that you have "migraine disease" and then to find out (maybe years later) that it is Chiari. How utterly complicated Chiari can be. And to what great lengths Chiarians go to to TRY and get better...

Cheryl

The episode will be called "The Choice."

Cheryl

How long did it take Anna to get diagnosed?

Thanks, Cheryl. We love House and will be watching. Zoe is reading a book called "House and Philosophy: Everybody Lies". I hope this isnt an omen, but that is the same day we finally go see the Ped. Neuro about Zoes MRI results. I intend to ask him about Chiari. She is having some head pain most days right now, and the Fioricet isnt working as well as it did. I read the article about the girl. Is she doing worse again? I hope not.
Hugs,
Cindy

I don't know how she is doing now. She hasn't posted on her CaringBridge site in recent months.

Anna went five years before being diagnosed. In 2005 Mayo went back and looked at her four previous MRI's and said it had been missed each time. Anna was with Diamond during those five years, and they missed it. She was even a patient at CINN-- The Chicago Institute of Neurosurgery and Neuroresearch for a time, and they missed it! Anna had facet blocks at CINN, and they were clueless that she had Chiari...

Cheryl

Anna, wow, thanks for that, I'll be sure to watch!
I like House, but don't watch it regularly. Hugh Laurie has been a favorite of mine since his days on "Black Adder" in the 80s.
A composer friend of mine worked on the music for "House" back when it was first being developed, he was nominated for an Emmy for it many years ago. Just a fun little aside.

My son, David, got me into watching House. He knows what I like to watch.

I'm giving myself a reminder to watch on May 3. Thanks, Cheryl.

I can't believe it took 5 years for the docs to dx Anna's chiari. It makes me wonder what is being missed for the rest of us.

Becky

It is a rare condition--really, it is. Some people have it and do not suffer much. But then again, it can cause you to totally lose your life. It all depends.

Thanks, guys!

Cheryl

Thanks Cheryl.

I think House is one of the best shows on TV right now so I will definitely be watching.

Cindy

Here is a letter to the Chiari community from Laura Slyman:

"Three weeks until our big Chiari "HOUSE" episode! It airs on Monday, May 3, 2010 at 8pm Pacific on FOX and this episode is called "The Choice".

I've been so blessed to be able to use my voice, on the behalf of all Chiarians, to help with this episode. I will never forget the excitement, butterflies, and giddiness that I got when I received the call from writer/producer David Hoselton and when I walked onto the HOUSE set and met some of the cast and crew (in Feb).

It's been an incredible, life changing experience for me, but it also came with a lot of nervousness. I wanted for it to be perfect and for Chiari to be portrayed in a realistic manner as possible that truly demonstrates the pain we live with on a daily basis and how we are treated by those in the medical field and how it can affect our everyday lives.

So, I encourage you to watch the show and tell everyone you know as well! That way, we can get the word about Chiari to everyone with a TV. No matter what happens, even if people just hear the word (and how to pronounce it) Chiari and get a glimpse of what we live with, well I'll consider it a success.

I'm so grateful to have been a part of the episode and thankful to the HOUSE team. The cast and crew are all amazing, down to earth and caring people who want to use the power of TV to not just entertain, but shine light on these diseases.

I had a great time in LA at Fox Studios with my best friend. We were given a personal tour of the lot, the HOUSE offices and then David took us on set where we met some of the cast, hung out with the crew, watched filming of some of the scenes for the episode and were shown around the "hospital."

Standing in House's office was surreal! That's about all I can say for now.

Yes, I'm a true "Chiarian" and have had 12+ surgeries related to CM in the past 5 years, so if you have questions, feel free to email me! Thanks for your support and make sure to catch the Chiari episode on Monday, May 3!

Peace to you all,
Laura Slyman"

Laura's CaringBridge Site:

http://www.caringbridge.com/visit/lauraslyman

A great article in a Washington newspaper today about Laura and "House":

http://www.bellinghamherald.com/2010/05/02/1411067/bellingham-woman-shares-her-rare.html

Hope some of you can watch it tomorrow, May 3, on FOX TV.

The article is compelling, how doctors can miss Chiari and people can go on for years without being properly diagnosed (Anna went five years).

Cheryl

Cheryl,

Great article. I was especially touched by this statement:

"I'm happy to see an important factor played out in the promo, of Dr. House accusing the patient of faking an illness," Slyman said. "That was a huge concept I wanted to make sure the writer understood."

Read more: http://www.bellinghamherald.com/2010/05/02/1411067/bellingham-woman-shares-her-rare.html#ixzz0moCexZND

I think we've all heard this at least once and it's so demeaning. It's so good to see these things brought to the attention of everyone through a popular series. Hopefully it will help in getting more ______*** (sorry, migrainity--can't think of the correct word) and attention for Chiari and chronic migraine. Hopefully this will result in more research and funding for research.

Thanks, Cheryl.

Awareness?

I wonder if neuros are going to get questioned by their HA patients after Monday?

By the way, according to the previews for House:

The Chiarian is a guy.

He starts lactating.

He is accused of making up his symptoms!

All true scenerios for Chiarians!

Cheryl

I really want to see this. I am in Canada. I am hoping 8PM on Fox is here?? Would you please let me know.

I don't know about Canada.

Here's the House website:

http://www.fox.com/house/

If you can't watch it on TV, you can watch it on-line eight days after tomorrow.

Cheryl

Ooh I'm gonna skip my normal broadcasting and watch. Hoping for not a happy ending - we don't often get one, they shouldn't.

Cheryl, Tomorrow is Zoe's appt with the Neuro. I might bring up Chiari if the timing is right. Her HA's have been quite bad again lately. Zoe does not like me to make "suggestions " to a Dr., though. I want to do it before he gets all the other parents coming to talk about it after the show!

This could be interesting getting her to her appt. since I am starting my bad head time. I cant wait to see this episode. I have been watching House since it first came on. I am sorry Anna has not had any good news lately. She is always in my prayers.
Hugs,
Cindy

I am thrilled that Laura and her friend got to visit the set and meet some of the actors and writers.

I am so impressed that the writers cared so much about making this episode true to life.

Thank you so much for sharing this article and I promise I will be watching tomorrow night.

I always have my DVR set to record House on Monday nights just in case I either forget it's on or am gone for some reason.

Thanks!

Cindy

Instead of criminals, the enemy is germs, diseases and other vulnerabilities of the human body, tracked down like criminals. But House isn't just derived from Holmes. The character may also have influences from other mythic characters.

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photographers perth

Seems like it is Chiari Day today. A Nebraska girl in the news also:

http://www.yorknewstimes.com/articles/2010/05/03/news/doc4bdeb2291b885560609772.txt

Cheryl

And another was shared today on a Chiari forum:

http://www.lenconnect.com/news/x359583421/Mother-daughter-live-with-rare-illness

It gets to be like a broken record.

Well, what did everyone think? Was it acurate? Over-dramatized? Let me know.

Good that they talked about Chiari, POTS, LP, and CSF leak.

MRI imaging is very important--didn't even see that.

Pulling up on the head, wearing a soft collar. Not done nor even thought of by majority of Chiari neurosurgeons. Way too simplistic. If it is done at all, it is to evaluate for craniocervical instability. A tricky diagnosis.

You don't find and fix a Chiari nightmare in a few days time.

After Chiari surgery, you are in extreme pain. You aren't sitting up in bed like that, moving your head and neck as you talk. Anna was in ICU for three days. She could barely talk at all. She wasn't allowed to move her head and neck an inch for the first 24 hours. Sitting up was very, very painful. She elevated up ten degrees at a time. On a pain pump.

A lot of distractions in the show.

But happy they pronounced it correctly and that they devoted the show to Chiari Malformation.

Just my thoughts...

Cheryl

Well they don't always get everything right. But at least it didn't have a happy ending. Not in the way I expected but I'm satisfied.