10 top stupid things said to Chiarian's

[Guest guest]

Thanks to all that sent in their comments. We had plenty of great laughs. We

stuck to the 10, however there were more we could have added to the list. We

left out the " you look so good " , " you would have had to have symptoms as a

child to have Chiari " , or " Chiari doesn't cause headaches " . Have fun

reading, don't laugh hard, you might pee your pants

Oh, it is joke day, go for it. Happy 2010

10) " It would be so incredibly rare for you, too, mom, to have Chiari, and

even rarer for you and your daughter to have connective tissue disorder -

stop reading what's on the internet. "

9) All of my Chiari doctors knew I had Chiari, at an appointment I was told

my constant headaches were from wearing large earrings and if I would stop

wearing them I would get better!

8) Diagnosis from a Neurology Chief of Staff when I started having

seizures. His diagnosis based on CT-scan was " massive brain

7) Prior to my diagnosis by TCI, the head of the neurology department at a

leading hospital told me " you need to go home and look for hidden stress in

your marriage. I almost strangled him on the spot, which would probably have

convinced him that he had the right diagnosis.

6) A mom wrote us with this tragic reply from a neurosurgeon: " I think your

daughter is a drama queen like mine, and I think her symptoms are

behavioral. "

5) Another sufferer was told by a NSG at a large university hospital:

" You're lucky to be alive. Get off the internet and get on with your life. "

It was later found that her neck was still broken.

4) One patient paid for a consult that resulted in this gem: " When I went

for a second opinion and mentioned that another NSG would do the surgery (an

Asian), he went on a rant saying that the NSG was just trying to make money

off me and starting running down the Asian race. My kids are half Filipino. "

3) One woman went to a major neurological institute (but not a CM

specialist) and was told, " Go home and dye your hair, you'll feel better. "

She was later diagnosed and had several surgeries for not only CM,

instability, cyst in her brain etc, but also a syrinx on her brainstem!

2) A patient traveled to see an expert, had a few tests, and was told to

call their state representatives and senators to discuss getting quality

health care in their state. They were urged to support Pres. Obama's health

care proposals.

AND THE NUMBER ONE STUPID COMMENT IS:

1) " He said that he didn't know what was wrong, but definitely it was not

Chiari. He had no suggestions. Being desperate as we all are at times when

you know that another doctor is not going to be help you and your hopes are

shattered once again...I stressed to him again how I was declining

physically and that I could not walk even the length of the mall...He looked

at my husband and stated, " I guess you are saving a lot of money " .