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.

[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