REMINDER Chiari on HOUSE TV-

[selmaS]

TV "HOUSE" & Chiari Malformation
Date:
Monday, May 3, 2010
Time:
8:00pm - 10:00pm
Location:
FOX TV

[josiebaby66]

I watched that show days before my son had his surgery and many of the sypmptoms were spot on. the loss of speach and yes the instant black outs however the post surgical scene was so completely misrepresented.  But atleast the public is hearing about the disorder more and more.

[survivor08]

Take a look at my post about "Hypo-metabolism".  I think it will give you some info to help with inability to lose weight.

I talked with Dr. Heffez about that yesterday and he said it will be interesting to see what happens there after we are all done with treatment/surgery.

[survivor08]

I am late posting this because I left Tuesday for Milwaukee (Dr. Heffez).  Meaning after that sorry episode went off, I went to start packing.  What an embarrasement as I had people from my church watching and my family!  And who just "passes out" then sits right back up like "Hi!"  The ONLY thing I saw that even came close was putting pressure at the base of his skull helped with the headache.

I have never watched that show before and I won't ever watch it again.

[selmaS]

Hi Carrie....hugs to u and ur DD....I wonder about u from time to time and then u pop in : )

Sending prayers to u both

"selma"

[CarrieinAK]

Hi All,

What a disappointment!  I told all our family members and friends to watch so they would know what my DD goes through and even they didn't think it was very well done.  I didn't think the patient was a very good actor, and too much emphasis on the gay thing and not enough detail on chiari.  

My biggest beefs though are:

1) He didn't appear to be in very much pain!  If he was really having chiari pain, I think the last thing he'd be worrying about is his non-gayness.

2) It sure made decompression surgery look like a piece of cake!!!   Just some gauze slapped on the back of his neck and he's got all the mobility in the world in his head, neck and shoulders.  That is so far from real life.. not even close to what my DD and most, if not all, of you brave zipperheads went through.

Well, at least House said "Chiari Malformation" on TV.  And... I did like the karaoke scene.  

Hugs to all,
Carrie in AK

[selmaS]

Yes teh show may not have covered chiari like we all would have liked, but if u look at the link I added on the thread one  FOX news station did an interview with 2 chiarians and added a link to their website for more info on chiari...real info !!!

SO, some good is coming out of it : )

[Dmoore263]

Very disappointing.  The whole story was way out there and then right after surgery the guy is moving his head around like nothing happened.  What a joke.

[blondeballerina07]

I missed it but it sounds like I did not miss much!

[Terry500]

That is so disrespectful to real  CM patients

[soccero]

that sucked! And what happened to two hours? I'm dealt disappinted.
Molly

[jonifa]

Completely and utterly disappointed in the show!!! What a waste...

[selmaS]

Unfortunately they went a totally Hollywood way...and I am soooooooooo disappointed on teh direction this episode went...so sad : (

[chattyk36]

I have had pituitary problems with the chiari and high pressure for years.  I have tumors on the anterior and posterior.  I had a very high prolactin level with breast discharge at one point and put on bromicriptine.  Since surgery I have not had high prolactin but continue hormone issues.  Including being unable to lose weight though I eat very little.  I have nad no help from any endos and have written them off.  

[*Stormy*]

I have run across some mentions of pituitary problems with Chiari as well. So I'm pretty sure that is how they made the connection. I have to figure out when it's one here...so I don't miss it!!!! Can't wait!

Carolyn

[Terry500]

Cant wait...My wife had the surgery in 2007 in Miami by Dr Green...We need more education and exposure.  parent should talk with their children since this is hereditary...God Bless

[selmaS]

Thanks for the insight on the possibility he has multiple things going on that could result in the lactating on this episode....seems we and I mean me...was so excited this was about chiari I didn't even give a thought that they may add a few other issues( not on our symptoms list) in to muddy it up.

[blondeballerina07]

I am a little late in on this conversation, but I do have problems with my pituitary and doctors have found no explanation other than the pressure from chiari is causing it. I have also read studies on pubmed of patients have had pituitary problems coinciding with the chiari, and the pituitary problems subsided after surgery. Just a side note for everyone so it may very well be  possible.

[selmaS]

TONIGHT PEOPLE...remember to watch so we can have a thread on what we thought for Tuesday !!!!

[*Stormy*]

That's exactly what I thought too...as least ppl will be talking about it!!

[selmaS]

U have a good point of view on that ...such a good vantage point for us all regardless of how Hollywood this episode is...it can still get a convo started : D

[cyberpyxi]

I sent out an email to everyone that I am friendly with at work (large company), which ended up being about 20 people or so. Some of them were very aware of my condition, others, as it turns out, didn't even KNOW I had a "condition". Even if the episode of House isn't true to life (which I REALLY hope it is), it will be enough of a conversation starter and talking point. Already, just my mentioning the show and episode has gotten quite a few people to google Chiari, where just my having it was not enough motivation to do so. Like I said, I hope it's a good dipiction, and I REALLY hope they do the decompression surgery... but if it isn't and if they don't, I can say "oh they had it all wrong..." and go into the differences and what not. It will be enough to get us talking about it

[selmaS]

Sounds like a good idea...I have been on the fence over that too : )

[redkim]

I wanted to tell people at work to watch the show, but now I am not sure.  I am hoping the show will be a way to educate people on Chiari and what it like.  But looking at the previews I am concerned they might get the wrong picture...  So I think I will watch it myself and if it's good recommend it to people to watch...

[selmaS]

U and me both Carolyn....lol....and deff more convo's after the show : )