I have a possibly crazy idea that might help

[Guest guest]

Well here goes. I had an idea and wondered if it might help if we all

list all the name tags that have been put on our medical conditions if

this could be a good study to turn over to doctors that refuse to

listen and learn.

Such as, how many people here had been diagnosed with any of the

following prior to getting a Chiari 1 Malfomation diagnosis. Also if

surgery has been done, is needed or planned. Then list what your

herniation was and possibly the cause of your herniation if known. Such

as Tethered spinal cord or too small of skull, or Cranial instability,

etc.

Telling how many years since you first noticed your symptoms would be

good too.

This is a list I thought of. As many of you know, many of the syndromes

cover a lot of the symptoms that we complain about, so we wouldn't have

to be specific on many of the symptoms.

(1) Fibromyalgia (2) Chronic Fatigue Syndrome (3) Thoracic Outlet

syndrome (4) Reflex Sympothetic Dystrophy (5)Ehlers Danlos Syndrome (6)

Any other pain syndromes with listing those as well (7)Suspicions of

multiple sclerosis (6) All in your head

If you had a failed surgery, possibly explain if you know why it failed.

Is there any reason why we can't create our own study group? We have

more information about this condition than most Dr's do because we have

lived it. I've read many post that speak of educating the doctors. What

better way than to give them personal testimonials showing proof of

where the medical system has gone wrong as well as educating them on

how to do it right.

The Information would need to be brief and to the point.

I'm just not sure how to do it on the site. It would be great to have a

continuous list going. Possibly the moderators would know how to do

this. Any ideas moderators?

Thanks everyone,

Dee

CM1 5mm/9mm, Diagnosed 11/07 as skull too small for brain. MRI with CSF

flow study done to verify flow abnormalities.

Prior diagnoses from 1987 to 2007 TOS, FM, RSD, CFS, Endometriosis,

Asthma,Malalignment from hips down and a short leg, Suspicions of MS

and ALL IN MY HEAD!

Various symptoms started long before 1987 and worsened with age.

Especially in last 3 years and more so in last 4 months. My age is 44.

No one including my mother could even hold me as a baby. I was a sickly

child.

As of yet, No hydo, no tethered cord, no significant cervical

abnormalities found.

Setting up Decompression surgery at VCU in Virginia by Pediatric neuro

surgeon Dr Ward.