New Member ( long introduction-sorry but please read)

[Guest guest]

Dear group,

This is my first post on this group . I have been reading a lot of

the posts for the past several months though. I have reason to

believe I have Chiari malformation,cervical stenosis and possibly

related problems .

I have had a lot of different problems over the years . Some of them

such as pain and fatigue were diagnosed as fibromyalgia . I read

about the fibromyalgia, chiari connection and began to read about

chiari and stenosis . It turned out I had many of the classic

symptoms of chiari as well as things I've read in the newer research

..

I got an appointment with a Dr. Flechas, here in North Carolina . I

had had a mri done to look for other things a year or so ago . He

looked at it and said I did have chiari . I also had a Cine MRI and

cervical MRI done when I saw him . I believe he said I had a small

chiari and cervical stenosis . He seemed to think I needed surgery .

He noticed I had abnormal reflexes,no gag reflex, and nystigmus .

The radiology report from the Cine and Cervical MRI read by someone

else seemed to confirm I had problems . It says I have a low lying

right cerebellar tonsil with some crowding of the foramen magnum . I

also supposedly have a congenitally narow spinal canal of about 12 mm

and I have disk protrusions from c3-c4 to c6-7 with stenosis

greatest at c6-7 . I think the AP canal is 10 mm in two places ,11

mm in two others and 13 and 12 mm.

It also says there is limited cerebrospinal fluid reversibility of

the cervical spine and at the foramen magnum . I'm not sure how

severe this is but I think I may finally have a clue as to what's

wrong . I'm on Dr. Rosner's waiting list and I will hopefully get an

appointment and find out more .

I was comparing a copy of the old regular MRI to normal pictures . It

does look like I could have chiari ,especially in an axial view where

the tonsils may go through the foramen magnum . Also some other parts

of the brain seem crowded or closer to the skull and the pituitary

gland looks different than normal . Parts of the back of the skull

may be steeper . I have a copy of the MRI and may put it on the

internet .

As for symptoms I do have some symptoms that sound like what i have

read about chiari . I get pain behind my eyes and in the back of my

head . I have had pressure in my ears,feeling heartbeat in my head .

I get gurgling noises in my head,ear ringing,feeling pulse in head

etc . I've had balance and swallowing problems,spots in my vision,leg

and hand numbness,occasional word slurring . As a kid i had earaches

,bad handwriting,irritability,social problems etc. I'm 31 years old

now.

Some of my worst problems are the fatigue,confusion and pains i get

all over . This got me lumped into the fibromyalgia category . This

alone has ruined my ability to function,study,workout etc . Has

anyone with chiari had these problems and recovered with surgery ?

I also have a lot of cognitive/psychological problems . This is

perhaps the most troubling thing about it all . I had a Spect scan

that showed mild to moderate global hypoperfusion and moderate

heterogeneity consistant with a diffuse encephalopathic pattern. I

havent found a doctor that really knows exactly what this means . I

ordered a copy but it looked of poor quality. It wasnt even in color

as the pictures I've seen.

I have poor concentration,short term memory problems,anxiety,

irritability,depression,past panic attacks etc . In general I just

have a spaced out feeling . One of the more specific problems I have

is OCD(obsessive compulsive disorder) . I wonder if this could have

to do with the chiari malformation,stenosis,csf flow or something

related. Their do seem to be a lot of people with " fibromyalgia " and

OCD . I did read about some people with ACM and OCD.

Does anyone else with chiari have symptoms of OCD ?

I would be happy to get rid of the fatigue and other problems but I

thought I'd ask about that too .

Does anyone with chiari have any of the symptoms I've mentioned ?

Did any of these improve or go away after surgery ?

Would it still improve after all these years (31) ?

I have been looking for answers for three years . I've checked out

and been tested for everything from lyme disease to sarcoidosis to MS

.. Most doctors just wanted to put my symptoms in a category and

wouldn't do any tests . It was a waste .They just read what the last

doctor wrote and looked down on me .

Is it possible I have finally found what is wrong ?

I feel somewhat hopeful but I am running out of energy . My family

doesnt quite believe me . They want me to stop trying or see local

jerk doctors who know nothing about this . I dont want to ruin this

if I found it. At the same time I would have to be sure to have any

risky surgery .

If anyone can relate to this or answer my questions I would

appreciate it . You can write the list or E-mail me personaly .

thanks,