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My Journey With Chiari Malformation

Symptoms
Home
About Me
Diagnosis and the Doctor Search
Consult with Dr Milhorat
Symptoms
The Chiari Institute
Posterior Fossa Decompression Surgery
Another hurdle
Surgery 2, and Life After!
Contact me

Symptoms prior to my surgery
(my personal list, not my doctor's)

Chiari symptoms come and go.  I was advised to keep a symptom log monthly.  I would write something down if it happened more than a couple of days.  Memory problems (another symptom of Chiari) made this a very wise practice.  A symptom log helps your doctor track the progression of your symptoms, which can help in the decision about surgery.

For a great site on Chiari symptoms and associated information, please go to the following link off the WACMA pages!!

http://www.pressenter.com/~wacma/survey.htm

 

January 2002
 
Bending over causes many issues, among them: feeling like my head is stuffed with cotton batting, dizziness/lightheaded, with head pain and thought fogs during bending.  Bend too much; I have to lay down with eyes shut. Dizzy, nauseous, sleepy, head feels full, groggy.  Sometimes just looking down causes the same type of thing.
 
Very tired, no energy or stamina. Flu like body pain.
 
Sometimes the back of my head feels like a basketball, ready to pop with the pressure.
 
Mild to moderate head pain daily, stronger around menses.
 
Arm weakness/pain when doing things above the head.
 
Tingling in feet/toes
 
Always tired, cold, in pain.
 
Trouble just getting words out, trouble with "S's" when tired.
 
Forgetful, brain fogs, groggy, hard to even compile this list.
 
Eyes jiggle/worse when I try to concentrate on something.
 
Neck and back feel like they want to go stiff, pain daily.
 
Limited sensation on skin of both calves, comes and goes
 
Raynaud's in hands and feet daily
 
Numb face, feels swollen, rubbery, comes and goes
 
Coughing when swallowing, worse with water, trouble swallowing things like mashed potatoes.
 
Throat "tickle", causing me to cough, difficulty talking.
 
Hand pain/ tingles, worse with use
 
Arms and hands and feet turn purple all the time.

This symptom list is while I was on the following meds:
 
Ibuprofen, 800mg up to 4 times daily
Neurontin, 300mg twice daily
Klor-Con EF, 25meq once daily
Diamox Seque, 500mg once daily
Corgard, 40mg once daily
 
 
These meds helped reduce the severity of my symptoms, we did a trial of stopping some of them, symptoms escalated almost immediately.

 

These symptoms had such an overwhelming effect on my life, and the life of my family, that choosing to have surgery (once I had found the right surgeons) became easy.  The risk was worth it to try and get my life back.