My Introduction

[Guest guest]

Hi Dori,

I can certainly confirm that quite a few of the symptoms

sound like those I've had (or still have). People with Ehlers

Danlos often have Chiari Malformation 1, or low-lying

cerebellar tonsils (sometimes referred to as Chiari 0).

As far as I know, I inherited my Chiari type condition from

my fathers side and my EDS from my mothers, who could

do the thumb thing. Having said that, I was mainly fit and

well throughout my life with loads of stamina and endure

capabilities. I'd a sharp brain too, I was a high achiever,

so it didn't hold me back.

As I child, I too was always going over on my ankles and

knees. My legs were always thin and I found I couldn't

keep up with the others at running (but I didn't care too

much because I could whack a rounders ball and really

hurl a javelin!!).

I did develop debilitating low back pain, when they took

out my 2nd ovary (and didn't put me on HRT - for almost

3 years!!). They took a scan and said I had the spine of

a 70 year old (when I was only 36!) and they picked up I

had a 'rogue' disk. After eventually getting on HRT, this

all soon diminished, thank goodness and within a few

years my spine was back to normal. I lost my first ovary

with a dermoid ovarian cyst (and several others) when I

was only 11 years old.

The trigger point for me was having a head and neck injury

- that started a cascade of weird and wonderful (NOT)

symptoms and I slowly lost my independence.

I've had velvety skin all my life, except my upper arms,

on which you could feel very small pimples. All my skin

was strong and so was the tissue underneath it. However,

this has not been the case since my accident. I now

cannot wear anything with a texture to it, as it leaves an

impression on my skin and the area soon becomes sore.

My legs even adopt the fine pattern from the smooth

support hose that I wear and when I wash them, it sounds

like I'm washing a plastic tablecloth!

When they tested me for 'Fibromyalgia' by prodding me

the discomfort was so similar to the general body pain I

seemed to have all over, that I didn't bother saying it hurt.

My blood pressure was low side of normal before but,

since my accident I now develop higher blood pressure

if I stay upright for any length of time. I haven't been

diagnosed with it but it sounds like Neurally Mediated

Hypertension to me.

Heat used to make me ratty before my accident but after

my accident I was always cold so needed the heat up

abnormally high. My temperature is nearly always low

too and sometimes I wake up almost Hyperthermic and

it takes me quite some time to build it up to a reasonable

level.

I have the purple feet (and legs) from time to time, I used

to get serious pain in my leg when this first started, so

bad it made me cry. I have both bleeding and clotting issues.

I'm often dizzy and lose my balance, especially on

uneven ground, or if I change direction. I have heard

someone else talk of the 'ch ch' sound when moving their

head - I think it was Dr Driscoll (at prettyill.com).

She has some wonderful videos on her website. I watched

the 2 videos where she describes her symptoms (each

one is about 10 minutes long) - she had so many

symptoms that were exactly the same as mine!

Regards

Barbara

(UK)

For your information my diagnoses (so far) are:

Postural Orthostatic Tachycardia Syndrome (POTS);

Peripheral Vestibular Dysfunction; Empty Sella;

Small Fibre Neuropathy; Mild Radiculopathy;

Craniocervical Instability (CCI); Retroflex Odontoid;

Low-Lying Cerebellum (Chiari 0); Diminished CSF flow;

Elongated Brainstem; Cranial Settling; Posterior Gliding;

Whiplash Associated Disorder (WAD); Ehlers Danlos (EDS);

and now Osteoarthritis!

After reading The Driscoll Theory (it's marvellous) and

checking my MRI's) I also think I have :

External Communicating Hydrocephalus;

Chronic Cerebro Spinal Venous Insufficiency (CCSVI);

and Mast Cell Activation (MCAD)

[Guest guest]

check here for symptoms

http://chiarione.org/symptoms.html <http://chiarione.org/symptoms.html>

[Guest guest]

Hello Everyone,

I was diagnosed in 07 as borderline Chiari ( 3mm) but have recently gotten worse

( my neurologist says that's not possible) getting referral for Neurosurgeon in

NC or VA. I've had severe hedaches, trouble swallowing, neck pain, numbness in

left arm, metal taste in mouth, dizziness to the point of falling down when

headache is severe. I was diagnosed last month with Basilar Migraines but was

told none of my symptons are Chiari related!

I have Complex Regional Pain syndrome from car wreck in 06 and had a Spinal Cord

Stimulator implanted in 08 so MRI's are out for me.

I will probably be a " luker " for awhile but just wanted to wish everyone a low

pain day and welcome any & all help with dealing with this crazy diagnosis.

Take Care,

Beth Radigan

[Guest guest]

There is no such thing as " borderline " Chiari. That's the same as saying

someone is a little bit pregnant. Either your brain fell out of your head

or it didn't.

Tell that drug dealer neurologist of yours to shove it and find a new

doctor.

From:

[mailto: ] On Behalf Of Beth

Sent: Sunday, June 03, 2012 4:56 PM

To:

Subject: My Introduction

Hello Everyone,

I was diagnosed in 07 as borderline Chiari ( 3mm) but have recently gotten

worse ( my neurologist says that's not possible) getting referral for

Neurosurgeon in NC or VA. I've had severe hedaches, trouble swallowing, neck

pain, numbness in left arm, metal taste in mouth, dizziness to the point of

falling down when headache is severe. I was diagnosed last month with

Basilar Migraines but was told none of my symptons are Chiari related!

I have Complex Regional Pain syndrome from car wreck in 06 and had a Spinal

Cord Stimulator implanted in 08 so MRI's are out for me.

I will probably be a " luker " for awhile but just wanted to wish everyone a

low pain day and welcome any & all help with dealing with this crazy

diagnosis.

Take Care,

Beth Radigan

[Guest guest]

Just for your own sake, check out all chiari related syndromes. One of

them could be causing more of these symptoms, and you may not need to have

to go through a decompression yet. This is what happened with my daughter,

and we now regret pushing at our NS for a decompression because so many

symptoms that could have been chiari related but are not where showing up.

[Guest guest]

Ummm....! That sounds very similar to my story except they wouldn't even

diagnose me as borderline chiari. They said there was no way my symptoms were

caused by something like Chiari. But low and behold, I'm 3.5 years post

decompression and 90-95% back to living a " normal " life! Definitely see a Chiari

expert if you want to get some real help. Welcome to the group! Cortney

[Guest guest]

Beth,hi..

Welcome to CCI ...I am sure that you will get a lot of good information and

help here.

Relying on a Neurologist for most chiari information is not the best plan.

Most have very limited experience with it. Another opinion for a

chiari-knowledgeable doctor is a " good thing " . But please be aware that even

with neuro-surgeons, not all have this knowledge either. You may well have

to travel to find one, but it is worth it.

This may be of some help in finding one:

http://www.chiariconnectioninternational.com/map.html

The term " borderline " is used differently by different medical professionals

in regard to chiari. Some base it merely on the length of the herniation,

which is pretty inaccurate. Someone can have a pretty small herniation and

some pretty horrific symptoms. Also others can have a herniation that would

" qualify " as chiari but few, if any symptoms. This makes the need for a

really experienced chiari doctor soooooooo important.

Many of the symptoms that you describe could well be chiari based. This may

be of interest.

http://www.conquerchiari.org/subs%20only/Volume%202/Issue%202(5)/Wide%20Range%20\

Symptoms%202(5).html

.... and again please don't rely on what you have just been told about

chiari/symptoms.

It could well have been the car accident that was the trauma which caused

your chiari to become symptomatic. This is the norm.

Please continue to ask questions that may be of help to you..... their are

many here willing to share information.

All best wishes,

Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling

pretty good on NO meds in Bethlehem,Pa

PS..My " story "

http://www.chiariconnectioninternational.com/goodstories2.html Scroll down

to SALLY

My Introduction

> Hello Everyone,

>

> I was diagnosed in 07 as borderline Chiari ( 3mm) but have recently gotten

> worse ( my neurologist says that's not possible) getting referral for

> Neurosurgeon in NC or VA. I've had severe hedaches, trouble swallowing,

> neck pain, numbness in left arm, metal taste in mouth, dizziness to the

> point of falling down when headache is severe. I was diagnosed last month

> with Basilar Migraines but was told none of my symptons are Chiari

> related!

>

> I have Complex Regional Pain syndrome from car wreck in 06 and had a

> Spinal Cord Stimulator implanted in 08 so MRI's are out for me.

>

> I will probably be a " luker " for awhile but just wanted to wish everyone a

> low pain day and welcome any & all help with dealing with this crazy

> diagnosis.

>

> Take Care,

> Beth Radigan

>

>

>

>

[Guest guest]

I like your style! I have done just that...

>

> There is no such thing as " borderline " Chiari. That's the same as saying

> someone is a little bit pregnant. Either your brain fell out of your head

> or it didn't.

>

>

>

> Tell that drug dealer neurologist of yours to shove it and find a new

> doctor.

>

>

>

> From:

> [mailto: ] On Behalf Of Beth

> Sent: Sunday, June 03, 2012 4:56 PM

> To:

> Subject: My Introduction

>

>

>

>

>

> Hello Everyone,

>

> I was diagnosed in 07 as borderline Chiari ( 3mm) but have recently gotten

> worse ( my neurologist says that's not possible) getting referral for

> Neurosurgeon in NC or VA. I've had severe hedaches, trouble swallowing, neck

> pain, numbness in left arm, metal taste in mouth, dizziness to the point of

> falling down when headache is severe. I was diagnosed last month with

> Basilar Migraines but was told none of my symptons are Chiari related!

>

> I have Complex Regional Pain syndrome from car wreck in 06 and had a Spinal

> Cord Stimulator implanted in 08 so MRI's are out for me.

>

> I will probably be a " luker " for awhile but just wanted to wish everyone a

> low pain day and welcome any & all help with dealing with this crazy

> diagnosis.

>

> Take Care,

> Beth Radigan

>

>

>

>

>

>

[Guest guest]

Sally,

Thanks for the warm welcome & wonderful links. I have been in touch with my

insurance company this morning to help find me a specialist. I have fired my

neurologist & I am " interviewing " specialists! lol

Hopefully, I will find the right one.

I look forward to learning as much as I can from all of you & maybe add a few

cents worth along the way.

Take Care,

Beth

>

> Beth,hi..

> Welcome to CCI ...I am sure that you will get a lot of good information and

> help here.

>

> Relying on a Neurologist for most chiari information is not the best plan.

> Most have very limited experience with it. Another opinion for a

> chiari-knowledgeable doctor is a " good thing " . But please be aware that even

> with neuro-surgeons, not all have this knowledge either. You may well have

> to travel to find one, but it is worth it.

>

> This may be of some help in finding one:

> http://www.chiariconnectioninternational.com/map.html

>

> The term " borderline " is used differently by different medical professionals

> in regard to chiari. Some base it merely on the length of the herniation,

> which is pretty inaccurate. Someone can have a pretty small herniation and

> some pretty horrific symptoms. Also others can have a herniation that would

> " qualify " as chiari but few, if any symptoms. This makes the need for a

> really experienced chiari doctor soooooooo important.

>

> Many of the symptoms that you describe could well be chiari based. This may

> be of interest.

>

http://www.conquerchiari.org/subs%20only/Volume%202/Issue%202(5)/Wide%20Range%20\

Symptoms%202(5).html

> ... and again please don't rely on what you have just been told about

> chiari/symptoms.

>

> It could well have been the car accident that was the trauma which caused

> your chiari to become symptomatic. This is the norm.

>

> Please continue to ask questions that may be of help to you..... their are

> many here willing to share information.

> All best wishes,

> Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling

> pretty good on NO meds in Bethlehem,Pa

> PS..My " story "

> http://www.chiariconnectioninternational.com/goodstories2.html Scroll down

> to SALLY

>

>

> My Introduction

>

>

> > Hello Everyone,

> >

> > I was diagnosed in 07 as borderline Chiari ( 3mm) but have recently gotten

> > worse ( my neurologist says that's not possible) getting referral for

> > Neurosurgeon in NC or VA. I've had severe hedaches, trouble swallowing,

> > neck pain, numbness in left arm, metal taste in mouth, dizziness to the

> > point of falling down when headache is severe. I was diagnosed last month

> > with Basilar Migraines but was told none of my symptons are Chiari

> > related!

> >

> > I have Complex Regional Pain syndrome from car wreck in 06 and had a

> > Spinal Cord Stimulator implanted in 08 so MRI's are out for me.

> >

> > I will probably be a " luker " for awhile but just wanted to wish everyone a

> > low pain day and welcome any & all help with dealing with this crazy

> > diagnosis.

> >

> > Take Care,

> > Beth Radigan

> >

> >

> >

> >

>

[Guest guest]

Thank you to everyone who replied to my intro (both here and by email). I'll

take a look at your suggestions. My apologies for taking so long to reply; my

energy is so low that it takes me a long time to do everything, including

responding to email.

dorij

>

> Hello,

> I found out about chiari on one of my endless Google searches trying to find a

reason for one of my many physical difficulties. This time I was trying to find

out why I keep getting hang-nails, my cuticles are always ragged, some are hard,

and some are encroaching on my nails. For years I've been (guiltily) using a

razor blade to trim them.

>