Re: dural ectasia

[Guest guest]

" Dural ectasia " and " extremely thin dura " are noted on my Jan. 2008

TCI tethered cord surgery.

I'm wondering if this is something noted on all TC surgeries, on most

of them or just a few. Google searches turn up almost no information

on dural ectasia. No doctors in my state have dealt with it before.

Does dural ectasia mean edlers danlos?

My leg pain was horrific before tethered cord surgery. It was even

worse post-op. But my leg pain totally went away 7 months after

tethered cord surgery.

Have your been checked for Rheumatoid Arthritis? Your joint pain and

redness might might be RA. I have RA. Eliminating artificial

colors, flavors, preservatives and sweeteners prevents my flareups.

One bite of that stuff sets off a horrible flareup.

I understand your being " discouraged, so tired, wanting help, and

relief. " I wish I didn't understand. You are not alone. There are

lots of fellow sufferers on this board. You came to the right place

for support.

I've followed these Chiari message boards since 1996. Back then I

couldn't relate to folks who had trouble getting their teeth cleaned

or going shopping. I had pain but it hadn't taken over my life.

I'm sorry you are struggling and can't find answers or help. Don't

you give up! Keep posting on this board. Keep searching for

answers. Keep trying to distract yourself.

Take advantage of your crockpot to make healthy meals. Eating right

helps me so much. If nothing else, at the end of the day I have a

nice nutritios meal to look forward to. I'm just not up cooking a

regular meal, but I can plop frozen meat and raw vegies into a

crockpt.

On days like today when I hurt too much to get dressed or do

anything, I really appreciate the house smelling nice and being able

to feed the family a hot dinner.

Thanks for posting on Dural ectasia. I search the message boards

each month, looking for others who might know something about it.

in Alaska

[Guest guest]

Hi,

 

I was just wondering the same thing about thin dura and ehlers danlos.  When I

had my tethered cord surgery in 2007 I was also told I had very thin dura.  I am

concerned if this is related to Ehlers because I am scheduled to have an

endoscopy and colonoscopy and I'm wondering if this could cause harm.  Does

anyone know?

 

Thanks,

 

BG

[Guest guest]

Now please take this with a grain of salt because I have very very

severe EDS...ie.all my wounds open, I already have colon issues etc..

but I was told that with a regular colonoscopy that they could

perforate the bowel...BUT this would be extremely very very rare thing

to happen...BUT since I am also fused they could not immediately stop

and do normal surgery they would have to have fiberoptic intubation

ready etc...so it was decided to go with a virtual colonoscopy.

(Of course with this they cannot take any biopsies or immediately

correct any minor issues)

As for the endoscopy...if you cannot have your neck bent...have been

fused, have cranial cervical instability unless you definitely trust

the doctor I would say no..

I cannot believe how many doctors I have tried to explain " no you

cannot bend my neck " and then they proceed to do so...I do not know why

they do not understand that this is harmful.

I have asked instead of this to have the camera test to look at the

stomach and the upper colon. (again with this test they cannot biopsy

or immediately correct anything minor they may find)

Just like with the dentist and not hyperextending our neck...we have to

obviously take care of ourselves and what happens to us.

So I think if there is another safer test that could get them the same

results we should try to elect the safer test.

Now just because you have dural ectasia I do not " think " this means

that you would have more or less severe EDS. (someone else may know

much more than me about this)

Kathy

trifecta -all surgeries

multiple conditions

>

> Hi,

>  

> I was just wondering the same thing about thin dura and ehlers

danlos.  When I had my tethered cord surgery in 2007 I was also told I

had very thin dura.  I am concerned if this is related to Ehlers

because I am scheduled to have an endoscopy and colonoscopy and I'm

wondering if this could cause harm.  Does anyone know?

>  

> Thanks,

>  

> BG

>

>