The Choice Episode of HOUSE ~

[selmaS]

Discussion thread.

Ok lets talk about the episode we all have been waiting for : )
Add comments like always but also cast ur vote for  how u liked the way the chiari info was handled.

[sarah357]

I am very excited about the Chiari walk. I live in Ohio and it will be very close to my town. I will be telling everyone I know, however, I still even have family members and friends that are not very understanding and have no idea what I go through every day.

I think that the article you all mentioned is a great idea! I wish I had more time to help..I am a mommy and a grad.student so I am always busy : (   I still have so much to learn about Chiari; I was just diagnosed 7 mths ago.

[selmaS]

Hi...I bumped up the thread with the links to info on the walk.....and I am including the link as well...this is only the 3rd yr for the walk, so, it does not get the attention that many other causes like breast cancer or MS or MD....but, I am sure if we continue to push forward  and hope that one day the walks for ne of these issues will be needed.

"selma"

[bbisweary]

Since we are discussing getting the correct and factual word out about Chiari, I was wondering about the Walk for Chiari in September.  I have read the walk in my state (Kentucky) is in Louisville.  How well are these walks attended in regards to nationwide?  Do any of you have any additonal info on them?

[*Stormy*]

I'm happy to do it, if you like :) I need a new project..lol...

[selmaS]

indeed...I think that is y we started it : )

[*Stormy*]

We do have that "Unofficial Symptoms thread" that we had going a while ago...maybe we should type that one up? That would be another good one to add to the health pages.

[selmaS]

We also have a list of symptoms here on MedHelp in the Health Pages...our list is one that most drs even true chiari specialists will recognize...we do need to have a lists of symptoms that many of us share that r not recognized.

http://www.medhelp.org/health_pages/list?cid=186

[ChiariWolf]

MEMORY LOSS.... Aw come'on nobody has that problem do they?

Even post-op there are times when during conversation my words are lost
and I just can't get them back all gone vanished from my mind. grrrrrrrrrr I
personally hate that one as it is the one symptom that I can't hide from
others around me. Even the ha I'm learning to hide from most, not me wife though.


Wolf

[drusso001]

I think the article is a great idea. Please let me know how I can contribute!!

Here are most symptoms....I have just about all of them :( as many of you all do.  I have the url if someone wants it. Chiarione.org

Headache (esp. if daily or at lower back of head)
Painful tension in neck
Fatigue
Migraines
Dizziness
Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
Tingling / numbness in the extremeties
General imbalance / clumsiness
Memory loss
Restricted movement
Intolerance to bright light / difficulty adjusting to light change
Vertigo from position change or sudden standing
Difficulty walking on uneven ground / feeling ground under feet
Poor / degraded motor skills
Difficulty driving
Difficulty negotiating steps
Pressure / pain in the neck
Pressure / pain behind the eyes (soreness in the eyeballs)
Back pain
Neck spasms
Insomnia
Ringing in ears (like the tone heard in a hearing test)
Swaying
Pain when changing position
Tingling / crawling feeling on scalp
Intolerance to loud / confusing sounds
Decreased sensation to touch in extremeties
Decreased sensitivity to temperature
Pain & tension along ear / eye / jawline
Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
Drooling
Spontaneous vertigo
Hand tremors
Poor blood circulation / cold hands & feet
Sinus / mucous problems
Sleep apnea
Decreased muscle tone
Pressure in ears / ears feel stopped up
Nausea
Difficulty reading / focusing on text
Depth perception problems
Burning sensation in extremeties / shoulder blades
Menstrual problems / severe cramping during period
Fluid-like sound in ears (like water running)
Loss of sexual interest / lack of sensation in pelvic area
Pulling sensation while sitting / standing
Intense itchiness w/profuse sweating
Slurred speech
Gag reflex problems / lack of gag reflex
Pressure / tightness in chest
Loss of bladder control
Frequent urination
Dehydration / excessive thirst
Electric like burning sensations
Unequal pupil size
Loss of taste
Popping / cracking sounds in neck or upper back when stretching
Dizziness
Loss of smell / problems with sense of smell
Dry skin and lips
Sudden / abrupt changes in blood pressure due to awkward position of head
Hiccups associated with drinking carbonated beverages
Skin problems

Other: migraines, oscillopsia, lump in throat, colour blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, "strangling" feeling, "floating" sensation, thickening of finger joints.

[survivor08]

The show was a ridiculous fairytale episode about a condition the writers cared little enough about to really reseach it.  It was offensive and disappointing and frankly, IMHO, made very light of a potentially serious deformitiy.  If I was a regular watcher, and if I didn't have Chiari, I would have thought NOTHING of it afterwards.  In fact I doubt I would even remember the name "Chiari".

I felt like it made it nothing more than a silly little problem that reqiured a simple little "procedure" with minimal recovery to be "all new" again.

What a JOKE.

I was embarrased as I had told about 200+ people from my church to watch it!  My husband said I owed them all an apology!

I have never watched "House" before but they prob think I watch that kind of TV all the time now.  One thing for sure I WON'T be watching it again!

[ChiariWolf]

I think this is a good idea Carolyn. Perhaps still include a cover letter similar to what was discussed but then reference this sort of fact vs. fiction.

Selma, is there a way that you can bump these last few posts up to start a new thread about this? If not we could just start a thread, just thought I'd ask. This would be a most helpful way of making sure that the letter, article or whatever 'truly encompasses the experience of the greatest majority.

Wolf

[*Stormy*]

K, so I popped on quickly b/c I had a brainstorm (I knew it would come to me sooner or later lol) Wolf..you seem to be on the same track as me!

What I was thinking is how bout writing sort of more than an article than a letter...

Something with a heading like:

HOUSE EPISODE ON CHIARI: Fact VS Fiction
"A true overview of what it is like to live with Chiari, compiled by Chiari sufferers"

FICTION: Chiari is diagnosed by a doctor pulling up on your head.

FACT:     Many Chiarians go through several different tests before their malformation is recognized. The most definitive test is an MRI because it accurately views the cerebellum and surrounding structures thereby showing the tonsillar herniation. These images help determine how far the herniation has progressed and what form it has taken. Other diagnostic tests such as a CINE MRI which images CSF flow can also be helpful in determining the effects of the herniation.


That one above was just an example of what we could do. I thought that we could start a thread so that everyone could add one, each person could pick a part from the episode that was a "stretched truth" and then come up with the "real facts". After the thread is done, we could compile it into one article and send to anyone we can think of!!

What do you guys think? Don't worry if you don't like it...I tend to get overexcited about my ideas and I realize that not everyone else does!!

Carolyn

[ChiariWolf]

Personally, I would need to watch the episode again. Something I swore would never happen. :-\ But I see it's posted on Amazon already so perhaps this weekend we'll watch a little more carefully with a view to writing that letter.

Because we all do see/feel things a bit differently perhaps it would be good if anyone who is reading here and hasn't posted as to how the show differed from their reality would post a comment. Even something simple such as "yeah, right I've not been able to turn my neck like that since I was a young teenager" or "Wow, I only 'wish' a chiari headache was over that fast!"

Wolf

[*Stormy*]

I posted a comment as well at the link where Selma posted earlier in this thread..

Wolf.. I would vote for you as well b/c you are so good at your written expression...however, I would be willing to help...I need a few days to think about it too..

Carolyn

[selmaS]

k....I can give u all the time u need....it has to be just right and I feel u would be a good one to do it...u have all our thoughts here.....so , if u need neone to give u a comment or what ever let us know : )

I also sent an e-mail via the link......

"selma"

[ChiariWolf]

Well... let me think ponder this for a day. I want to say yes. Need to get rid of this HA and see if we can structure something respectful, but to the point. I would probably have to wait until next tues when the show will post on Hulu so I could watch it again.

I 'did' post to the fox news site a short comment. Sent Fox a rather lengthy email detailing what I felt to be a great injustice to the chiari community. In conclusion let them know if they cared to discuss what Chiari really is that I'd be more than happy to communicate with them. And encouraged that if it's me or someone else they really should speak with several chiarians and redo the House episode unless of course they are just trying to can the show.

Wolf

[selmaS]

so...does that mean u r going to start it??

[ChiariWolf]

That is an awesome idea. Where to start would be the problem though. It seems as if even though we all have chiari perhaps at different stages, again it also seems we perceive these symptoms differently. Well and in some other aspects of the show such as the gauze he had on his neck and lack of shaved hair. Well frankly I left the hospital with very small patch in comparison to what he had in the show but it sounds as though many others here had a much larger bandage.

Some biggie's that perahps we'd all agree with would be things like the poorly portrayed drop attacks, the lack of treating him as an idiot because of the symptoms he was having, the ease with which he snapped out of the symptoms, the retarded simplistic way that he 'attempted' to describe ACM, perhaps the most absurb would be the ease at which he dx and treated or should we say cured him, the freedom of movement in his neck... maybe even the lack of symptoms. I know we are all perhaps a bit different for instance there is one young man I met whose only symptom was the horrid Chiari HAs [too bad they don't subside as quickly as they did in house] yet by the time I wen't into surgery I'd asked my wife to quit counting symptoms as she was at 43+ she had documented at that time. The there is the other side of the coin, we have here on this list some who have suffered a lifetime without dx and others who are still young and have the bloom of youth killing them emotionally because they just want to be a "normal" teenager.

Very good idea.... I don't know that I'd personally know where to start and really include a good overall view for each of us. Perahps... with comments from all who care to be specific we could have someone piece together that letter. Or each send letters to the email that was given earlier telling our own experience and how the show affected or effected us personally along with the letter you mention from the group as a whole???

Wolf

[selmaS]

Neone interested in writing an article on how chiari was portrayed and the real symptoms of chiari missed?......I would love to see it in black and white and then be able to submit it somewhere for review : D

[*Stormy*]

Wolf you're right and I really should start with my own ex-NL who was a totally jerk and refused to see the effects of Chiari for what they were. I had thought about it for a long time that I should write him a letter and a lot of ppl are amazed that I haven't yet but I guess I am just focusing on my recovery first. That could be the positive thing out of all this, it could set some us into action b/c it has made me realize that the only way that ppl are going to understand is if we MAKE them!!

Otherwise, honestly, I knew what House was like....but I was still expecting more than what we got....

But it has got some ppl interested in learning, I'll give it that!
Carolyn

[ChiariWolf]

My thoughts as well. After this we've agreed to be done with that show unless they write back let us know the redo is in the make and will be accurate. Frankly I was wondering when what I heard was a 2 hour show came down to 1 hour. Really, how could one denote the reality of a Chiarian in one hour... for that matter in two would be a push.

Time to pull up our pants and do something about it ourselves. Difficult when you have chiari but that is the only way it's going to happen. I tried taking in printouts to local hospitals and radiology departments around here they just simply were not interested. Perhaps some of you in larger cities could do something like this??? The same printouts where sent to several of the quacks that misdx me or simply dismissed me as making it all up. Will they read it??? I don't know, but at least I know that I did something.

Wolf

[not_all_tonsils_are_in_your_throat]

It makes me wonder about every other episode of House!  Are all of the episodes fake, minimal as far as realistic symptoms, results?  We know the facts for this one, and are mostly upset by the depiction, could this be true for everyone "seeing themselves and their illness" portrayed by this show?  How sad!

There was an opportunity for the world to hear about this disorder and learn about how it negatively impacts life, instead we heard about the sexuality conflict of a young man... and I hope no one gets THAT as a "common" symptom?!!!

Really really disappointed!

[selmaS]

Hi ...I know what u mean....I feel bad for Laura as well......I am sure she expected much more than we did...and the let down was harder for her.
But, it did get people talking if nething else...and we just have to correct all the inconsistencies...

We have to focus on the positives and move forward.....I know we all have a story to tell that is a far cry from what we witnessed on HOUSE....and I am sure Laura has already tried to find a way to get this behind her so that she can get awareness for chiari out there while people r still talking about this : )

[mjanoski]

Do you know how embarassed I was when I came into work today and a co-worker asked if I lactated?! I sent a mass email out yesterday and posted on my facebook for everyone to watch so they could understand what my life is like...was I wrong! I just came back to work two weeks ago from my surgery in January ( i had so many complications) and this was a joke.
I feel awful for Laura, I even read her blog on how excited she was about her trip to Hollywood and how real to life this was going to be. I just think  Iwas the most upset that his symptoms only seem to appear when he was in the hospital and they brushed the surgery off as a cure and that was it. I was in ICU when I came out of surgery and spent a total of 17 days in the hospital over the following month. I guess I was hoping that they would have explained the condition and details of the surgery more to the audience.
Typically House never gets the diagnosis till the very end but the descriptions and treatment are better explained....and realistically if a doctor picked my head up and dropped it I'd go crazy, it hurt just watching it!!