My Journey With:

Hypermobile Ehlers-Danlos Syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission except for hoarding) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Tuesday, April 8, 2014

My MOM just got diagnosed with Chiari!

Chiari Malformation
Chiari Malformation
Yes, it's true.  My mom, who does not have Ehlers-Danlos Syndrome (EDS), just got diagnosed with Chiari Malformation type I.  (The previous link is directed at my EDS blog Please Tape Me Back Together.)  Her doctor said that her Chiari is genetic.  I told her that I at one time suspected Chiari in myself, but eventually came to the conclusion that it was my Postural Orthostatic Tachycardia Syndrome (POTS), once I got diagnosed with it, that was causing all of my strange symptoms, including my daily headaches.  I never got tested for it, because, well if I do have it frankly I don't want to know.  I don't think I do, though.  The MRA (Magnetic Resonance Angiogram) she had also shows that she's has had a lacunar stroke, and has some plaque build-up in her carotid artery.  Her neurologist said that often you can see brain damage from having diabetes (she has diabetes type II) but because she's so good at taking care of it, her brain doesn't have any diabetes damage.  Yay for that!

I had my A1C tested recently for diabetes, and it was really good.  DH just had his A1C tested, and it showed that he has elevated blood sugar and is at risk of diabetes.  The levels were out of the normal range, they were too high.  I'm at high risk of diabetes because I have Polycystic Ovarian Syndrome (PCOS), I'm overweight, and my mom and Grandma have diabetes.  My doctor told me once, that considering my high risk factor, I have "one hell of a pancreas."  I've also been told before I have "one hell of a liver," because once I had a chronic Tylenol overdose, and lived.  They expected me to die or need a liver transplant.  It was a chronic overdose because I read the bottle wrong and had been taking five extra strength Tylenol every four hours for 72 hours.  That's a lot of Tylenol.  I realized something was wrong when I started losing fine motor control.  I looked back at the bottle and realized my mistake.  I was taken by ambulance to the hospital because I couldn't drive, and I was in the ICU (Intensive Care Unit) for three days.  Somehow I ended up with no liver damage at all!  I was very happy.  At the time I only told two people I was in the hospital, and neither even called to see if I was alive, I had to call them when I got out.  That was back in September of 2008.  It was the scariest time in my life, because I was all alone and so, so very sick.
Location of Liver and Pancreas
Location of Liver and Pancreas

Well, I think I'm going to end here.  If you are familiar with Chiari, please leave in the comments anything I might be able to tell my mom to reassure her.  I've done research on my own, but appreciate any new information.

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