Re: dural ectasia

[Guest guest]

I can certainly relate to the pain everyone here is talking about.  Although I

have not been formally diagnosed with Chiari.  Everyone here is describing my

pain to a T.  

 

There are some mornings, I can barely walk without groaning in pain.  God forbid

that I take my pain meds late.  I hated so much having to take the pain meds,

but then if I don't I am isolated in the house unable to do anything. 

 

I do want some kind of life back, I want to work out and rebuild myself.  But

the pain takes over.  Right now I'm on 18mg of Hrdromorphone every twelve hours.

With 1-2 , 4mg Hydromorphone as a PRN (only when needed.  I am on Amitrptoline

50mg and 100mg of topamax at night, and i'm on Diamox. all for pain.  Yet I

still getting into pain.  The more I do the more pain i'm in. 

 

All this from falling directly onto the back of my head a year ago last

december.  So far I've been diagnosed with Intrcainal Hypertension, papilla

edema, nerve damage to C5-C6, Herniated disks in the cervicle spine along with a

cyst at T1/T2 and a cyst in the peanal gland,and another syst in the

max something. MRI showed all the above along with a partially empty sella.  I

have also been diagnosed with fibromyalgia.

 

I have audio/visual and neurological symptoms as well.  I see auras of light

around everything, I have sensitivity to light and noises.  Which makes going

shopping or doing anything most days very very difficult, yet I am still hoping

and still trying someway.

 

I was just checking the chiari support, because that is what was written under

" clinical findings: Aquired Chiari " on my MRI.  The Mri had difficulty seeing

the base of the brain, apparently due to my porcelin veneer teeth preventing the

view.

 

I would be really interested in your thoughts of the above mentioned.  Any

suggestions or advise or coping mechanisms you could supply me would be deeply

appreciated. 

 

I hope you are all having a " good day "

 

Take Care,

 

Suzanne