NCC/pain/eagles/fatigue/general/grrr

[Guest guest]

Dear everyone:

I would like to read and reply to each email; however, sitting is

painful for me.

I empathize and my heart goes out to all of you, as I feel like at

times I am reading my own thoughts in your words.

The kindness here has helped me a lot.

I am learning things (and writing a book for two years I thought I

was intelligent..LOLOL)

and wondering how any of us copes daily without just being so tired.

I've had the Halo, and tomorrow or so I'll answer those questions.

(CUT YOUR HAIR

I've had two fusions, then hardware removed, halo applied.

I've had TCS as has my youngest son when he was 8.

three of my four children all have different anatomical anomalies of

ACM. Two DEF have EDS.

EDS is excruciating.

My teeth are a wreck.

Emotionally, I am a wreck.

And darnit, I don't want another BAD hair cut

Oh, does anyone else have abetter than google explanation of what EAGLES

syndrome is? thanks,

I try to keep my spirits up. THIS board helps. THANK YOU TO EVERYONE.

I will try to read and reply as much as possible. Bless you

all....and whomever has the formula for sleep please give it to me

ALI

Ali,

ACM I,(10 & 12 mm), Spina Bifida Occulta, Tethered Cord, Ehlers Danlos,

Eagles Syndrome.

14 years undx'd, residual symptoms persist.

Decompression w/ lam 2004, Cranio-cervical fusion 2005. fusion revision

2006. Tethered cord surgery 2006,with laminotomies and laminectomy,

Fusion Hardware removal 2007, Bremer Halo applied 2007, Halo off 2007.

Four children, three dx'd with different variations of ACM and SB, TCS.

Ali,

ACM I,(10 & 12 mm), Spina Bifida Occulta, Tethered Cord, Ehlers Danlos, Eagles

Syndrome.

14 years undx'd, residual symptoms persist.

Decompression w/ lam 2004, Cranio-cervical fusion 2005. fusion revision 2006.

Tethered cord surgery 2006,with laminotomies and laminectomy, Fusion Hardware

removal 2007, Bremer Halo applied 2007, Halo off 2007.

Four children, three dx'd with different variations of ACM and SB, TCS.

---------------------------------

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Eagles Sydrome is hard to find info on. It is the

name for the problems caused by an abnormally

elongated styloid process, or is it called a

styohyloid process.

This process thing is a ligament at the back of the

jaw and is supposed to be very short, I guess about a

quarter inch, and is supposed to stay behind the jaw.

For some reason, in some of us, it elongates down from

the jaw and into the neck below the ear. In my case

it is about and inch and half long on both sides and

has calcified. For some people it never causes

problems in others it can push on the carotid, cause

weird face and neck pain, ear pain, etc.

Mine was first diagnosed by a TMJ specialist tring to

see why my jaw had locked up, when he did a radiograph

xray. We have since identified it on xrays, MRI's and

I have a great pciture of mine from 3D cat scan I got

at TCI.

I remember long before my Chiari was diagnosed and I

was going to Chiropractors for all the pain, one of

them commented that on one of my xrays it looked like

there was a chicken bone in my neck. Guess it was my

Eagles thing already there.

Mine has caused near faint like problems. Any

pressure on my neck on one side causes a weird tharn

like condition where I just stare off, I hear people

talking to me, but can't respond. Decompression took

some of the pressure off, but it is still a problem.

Very few doctors take it seriously and even fewer have

experience treating it or taking it out.

Several of us on the list have this elongated styloid

process and I have found two doctors who might be

willing to take it out for me ... maybe.

Hanna

--- Ali Ruffolo wrote:

> Dear everyone:

>

> I would like to read and reply to each email;

> however, sitting is

> painful for me.

>

> I empathize and my heart goes out to all of you,

> as I feel like at

> times I am reading my own thoughts in your words.

>

> The kindness here has helped me a lot.

> I am learning things (and writing a book for two

> years I thought I

> was intelligent..LOLOL)

> and wondering how any of us copes daily without

> just being so tired.

>

> I've had the Halo, and tomorrow or so I'll answer

> those questions.

> (CUT YOUR HAIR

> I've had two fusions, then hardware removed, halo

> applied.

> I've had TCS as has my youngest son when he was 8.

>

> three of my four children all have different

> anatomical anomalies of

> ACM. Two DEF have EDS.

> EDS is excruciating.

> My teeth are a wreck.

> Emotionally, I am a wreck.

> And darnit, I don't want another BAD hair cut

> Oh, does anyone else have abetter than google

> explanation of what EAGLES syndrome is? thanks,

>

> I try to keep my spirits up. THIS board helps.

> THANK YOU TO EVERYONE.

>

> I will try to read and reply as much as possible.

> Bless you

> all....and whomever has the formula for sleep

> please give it to me

>

> ALI

>

>

>

>

> Ali,

> ACM I,(10 & 12 mm), Spina Bifida Occulta, Tethered

> Cord, Ehlers Danlos,

> Eagles Syndrome.

> 14 years undx'd, residual symptoms persist.

>

> Decompression w/ lam 2004, Cranio-cervical fusion

> 2005. fusion revision

> 2006. Tethered cord surgery 2006,with laminotomies

> and laminectomy,

> Fusion Hardware removal 2007, Bremer Halo applied

> 2007, Halo off 2007.

>

> Four children, three dx'd with different variations

> of ACM and SB, TCS.

>

>

> Ali,

> ACM I,(10 & 12 mm), Spina Bifida Occulta, Tethered

> Cord, Ehlers Danlos, Eagles Syndrome.

> 14 years undx'd, residual symptoms persist.

>

> Decompression w/ lam 2004, Cranio-cervical fusion

> 2005. fusion revision 2006. Tethered cord surgery

> 2006,with laminotomies and laminectomy, Fusion

> Hardware removal 2007, Bremer Halo applied 2007,

> Halo off 2007.

>

> Four children, three dx'd with different variations

> of ACM and SB, TCS.

>

> ---------------------------------

> Never miss a thing. Make Yahoo your homepage.

>

> [Non-text portions of this message have been

> removed]

>

>

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