Re:Empty Sella

[Guest guest]

Hi all,

Yes, the Empty Sella video is still on the TCI website - I know, I've watched

every one of them!, it's the video about the " Principles of CMI & SM " called

" Hormonal problems in Chiari I patients " - hope this helps.

I'm new to the site and have been searching years for answers to my problems.

Why parts of my body go tingling then numb every night while going to sleep,

only to wake up 2-3 hours later in absolute total pain, the like of which I

couldn't imagine to be any worse if I was being tortured!!! Having to move

very slowly through the pain (indeed worsening the pain to do so - but it's the

only way to get out of it!) to get back to normality, only to have to go

through it all again (and again). Then improving through the day, only to have

to

go through it all each night. That's been happening to me for years now. Last

year they offered me opiods but what good is that, how can you take a tablet

half an hour before you wake up?! That's just the tip of the iceberg. I've lost

count of the number of symptoms I have suffered since my head and neck injury

5+ years ago. The only effective treatment they've given me so far has been

a Philadelphia collar and a body brace - which I've been in 24/7 for 7 months

now.

Thank goodness for the TCI videos, they're helping me to understand some of

my symptoms. What a wonderful thing these people have done, in order to help

those less fortunate. This website too will help many I'm sure, just to hear

that although you maybe restricted (or housebound like me), you're not alone in

this world, is a boost . . . but the advice and support you give each other

is priceless, thank you.

I absolutely empathise with all of you who have been 'put through the mill'

whilst trying to obtain recognition and treatment for your conditions and I

offer you my sincerest warm regards and a BIG HUG. So many of you, like myself,

have been treated inhumanely by many in the medical profession and it's immoral

that we should suffer in this way. This condition has introduced me to

emotional depths (and pain levels!) I didn't know existed. It seems to me that

the

'psychsomatic pile' is the one you get tossed onto when you don't fit into

one of the more common disease 'moulds'. I felt so incensed by the lack of

support and belief in my symptoms that I've taken to videoing them all! Deny

that, all you 'specialists'!

Additionally, I'd like to hear from anyone out there who gets fasciculations

.. . .

Regards

Barbara