Family, as you know I had two brain surgeries in 2009 for a Chiari Malformation, a very little known about neurological condition. On Monday, May 3rd, 2010 the TV show, House, MD is going to address the topic. This is an amazing advancement in the public's understanding of our disorder. If you can, please tune in. One of the girls who is in my online support group (there aren't enough of us to have a real face to face support group) was on the set of House giving insight into making the disorder look "REAL". Said the entire cast was friendly, amazing, and absorbed the information like sponges. First CM on CSI, now House, next we will take on the world! :)
Daily Kitten Chat Forum » General Chat
Chiari Malformation on House MD, May 3rd (MC)
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Posted 2 years ago by mollycat71 #
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I always watch House, so you can know this house will be tuning in!!
Posted 2 years ago by cricketsmama #
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Great MC, I will make sure that I watch this one. Is the title of this episode, The Choice?
Posted 2 years ago by AZDEBRA 5/27 & crew #
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Oh thanks everyone! I should know AZ, but being that my memory is soooo bad, I will have to check my email from the girl that consulted on the episode. I know what you mean Kilroy, people poke fun at us neuro peeps. I am sorry it happened but I hope that by Bret Micheals from Poison having the subarachnoid hemorrhage there is a little more understanding of brain disorders/accidents. We really need people to understand us better!
Posted 2 years ago by mollycat71 #
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Yes AZ, it is called "Choice"!
Posted 2 years ago by mollycat71 #
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MC, what is so frustrating is when most medical personnel have never heard of a particular neurological disorder and because they are ignorant about it get all "high priest" with the patient and patient's family and refuse to believe that the patient and family just might know something, even a whole lot, about a condition the medco doesn't!
My mother suffered for 41 years from an agonizingly painful form of severe, non-convulsive seizures due to brain damage from a brain aneurysm. Time and again medical professionals treated her and us as stupid even though she had been a teaching patient for hundreds of doctors while receiving treatment at a Veterans Administration hospital connected with the Meninger Clinic.
Her diagnosis was: "Non-psychotic, organic brain syndrome. Severe, non-convulsive, full-spectrum sensory seizures." Try finding anyone, including most neurologists who have a clue about that one!
So every time I read of your experiences with CM and the ordeal you've been through, my heart goes out to you and I just cringe thinking about the challenges you face trying to get the care you need and for people to understand your needs and limitations.
God bless you and hang in there lady!!!
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Marnet, how sad for your mother, she knew more about her seizures that the doctors I am sure. She had to be a saint to be a teaching patient for the doctors going thru the VA Hospital system.
Posted 2 years ago by AZDEBRA 5/27 & crew #
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Thanks Azdebra. Mom never minded that most people didn't know about her condition and she was always, always glad to take the time and patience to educate anyone, especially those in the medical field so that somewhere, sometime, someone else might benefit from the shared knowledge. She did, however, have little patience with closed minds and willful ignorance.
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I agree with your mother, its fine to teach those who really don't know any better but dealing with willful ignorance and closed minds is not tolerated well.
Posted 2 years ago by AZDEBRA 5/27 & crew #
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I especially hate it when I hear "It's all in your head!" Actually they are 100% right, it IS IN MY HEAD! Dummies!
Posted 2 years ago by mollycat71 #
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It must add a lot of extra pain to have actual severe pain and people who don't believe or understand it. Kudos to your mom for her patience, Marnet.
MC, we always watch House. I'm looking forward to this episode!
Posted 2 years ago by Kitten Whisperer #
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MC, I love the comeback my mom gave one doctor. When she was at the V.A. hospital, she would be part of a teaching seminar for several hundred doctors at a time, some neurologists and some psychiatrists. The head doctor doing the teaching would expound on her case, then have Mom explain quite a bit about it from her point of view, including how it affected the rest of the family, etc. Then the doctors and student doctors attending the seminar would ask questions. One sarcastic, disbelieving psychiatrist snootily asked Mom if she didn't think all these symptoms were just in her head. Mom tartly replied, "Of course it's in my head, Doctor; just where do you think the brain is located?"
KW, thanks. For anyone suffering any type of chronic pain or disability or physical limitation, it is always infuriating when ignorant people make ignorant comments and assume a person shouldn't or couldn't possibly have such limitations. Mom's disability wasn't readily apparent. But she had significant brain damage. She had to learn to walk, talk, read and write all over again and do it all by herself because in 1959 there simply wasn't the organized support system of physical and occupational therapy of today. She admitted to me when I was grown that the pain and misery were so great that many times she would have turned her face to the wall and died to escape the agony except for us kids. She said who was going to raise her babies? So she endured.
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bump
Posted 2 years ago by mollycat71 #
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Marnet because of the effort your Mom went through, many patients have been given better care--I wish I could thank her myself.
Education is key to helping advance medicine--patients that are enduring what doctors do not know are the key teachers. Congratulations each and every time they are listened to, especially when repeating what they have said a million times to get someone to actually hear them!
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Hello everyone! I have been having an awful time with my password. I did do a post or two and I don't think they showed up. Now I am in, so I hope its ok.
I am pretty new here. I am writing myself notes, trying to remember who's who and what they are writing about etc.
First Chicketsmom I am sorry about your sister. You had a few very good replies esp Soxsmom and AV. I would say almost the same thing. Hugs to you and prayers too.
Mollycat71 You sound like a brave person, and I will watch House tomorrow night. I think I wrote something yesterday, but couldn't find it. I was sorry to hear of your problems with the MRI. I hope they did get enough info.
I too have had many tests in the past almost 2 yrs. Mri cat scan pet scan a few biopsies you name it. And of course lots of blood work. I have t-cell lymphoma and haven't had any meds yet. I have no symptoms. Hey at least I am travelling. I go to U of P in Philly every three months. LOL
Well I am soooooooo happy to be here and chat with all of you great cat people. I will be going to Doylestown w/Debster on Sat. Hope to meet lots of you. I love pictures I am sure everyone will have one or two with them. LOL
And Soxsmom where can we see pics of the Prom? Love ya all. JJBPosted 2 years ago by jeanjellibean20 #
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:)
Posted 2 years ago by mollycat71 #
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Here is the story behind the show!
Posted 2 years ago by mollycat71 #
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random trivia: I live in a town right next to Bellingham, WA :)
Posted 2 years ago by furryfriends50 #
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ba dum bump!!!
Posted 2 years ago by mollycat71 #
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almost time, here goes nothing! Hope CM is portrayed well!
Posted 2 years ago by mollycat71 #
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Kinda embarrassed that I asked y'all to watch House tonight. It was a very poor representation of what we Chiarians go thru. Man, now they are really gonna think we are nuts (and its all in "our heads").
Posted 2 years ago by mollycat71 #
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I don't know why you would think that. They knew there was a problem. What was disappointing is the fact they said a simple surgery and you are fixed. Very rarely is a surgery on the brain that easy. His symptoms were bad--I just felt sad they tied in other issues. There was more of a focus on his sexual orientation than on his real symptoms.
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Yeah, I guess they didn't really represent how bad the headaches are and the balance issues and the YEARS of frustration one goes thru trying to find a diagnosis. I realize they only have an hour but rarely does one just "immediately" develop chiari. Oh well, at least the name is out.
Posted 2 years ago by mollycat71 #
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Hi, just found this thread, don't have a tv so didn't see house, but I certainly understand little understood neurological conditions and getting the name out there is good. Even if they don't get the disease/conditon quite right.
I have "the most common inherited peripheral neuropathy" but it is still so rare that most regular doctors haven't heard of it. My mom didn't get diagnosed until she was 60 and she has a very classic presentation. It was amazing to learn that there was a REASON I was so clumsy and tired. Luckily it's not so dramatic as your CM. MC,I'm glad you are doing so well even with the setbacks.
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