Hello there! My name is Cindy. I live near Cincinnati OH. I worked as a licensed physical therapist for 16 years before I became too ill to work. I just found out last week that I have EDS & Chiari I malformation. I have been dealing with Chiari symptoms for the past 3 years. I am 44 years old and one of my many doctors just now figured it out?! Crazy! It's quite a lot to soak in to this screwed up brain of mine. I've got crazy things going on inside (and outside lol) this head. WAY more than I even knew! I have known for years that I am a zebra in the medical community and after learning this, I must be an albino zebra! :)
In 2007, I was diagnosed with a pituitary tumor & Cushing's disease. I had sublabial transsphenoidal pituitary surgery at MD Anderson. It was unsuccessful unfortunately due to extensive hyperplasia. In 2008, I had both of my adrenals removed, so now I have Secondary Addison's. The pituitary surgery was quite invasive, so I am on multiple medications to replace all these hormones and then some. I still have ACTH producing tumor cells, so I have yearly MRI's to keep an eye on it to make sure it doesn't grow.
For the past 3 years I have had progressive worsening of Chiari symptoms...I knew that they weren't endocrine related, but I just couldn't find a doctor that could figure it out. So I finally went to Dallas to see a dysautonomia specialist who did a week long of testing. My initial evaluation was odd to me. lol He was pinching my skin and asking me to bend over and touch the floor with my palms. I thought "Oh me, is this doctor for real?!" Little did I know that he suspected EDS. I thought I was going to walk away with a dx of POTS and go on my merry way with an exercise plan and a prescription in hand. lol He suspected EDS, but told me he would know more after the week of testing.
It was a grueling week of testing, but he left no stone unturned. One particular test that alarmed me was the videonystamography test. I had severe nystagmus and being a PT, I knew that was not good. But I did not know how that related to EDS. I soon learned how...
At the end of the week, the doctor confirmed EDS and referred me to a geneticist for classification evaluation, among many other "things to do" until I go back in April. He said that my videonystagmography showed that I have lesions of the cerebellum, specifically at the dorsal vermis & superior colliculus. My doctor said it appears that I have Chiari and referred me for an MRI to assess the cerebellopontine angle. I walked away from that appt, happy that I found answers, but I did not anticipate all that I was told.
Now, I have MRI's once a year and I have every disk. So once I got back home, I started reviewing them. Holy frijoles! How have all my doctors missed this?! The herniation is clear as day! I'm not an expert at MRI readings, but I used to read them when I was a PT. I can clearly see the tonsillar herniation. Ugh. In addition, things that I always noticed about myself, but thought it was just my weird issues, I have found to be related to Chiari. I have a flattened occiput. I have major asymmetry of the skull. It's clear as day on the films. I had always noticed that my right ear is way higher than my left. My facial features are not even. Now I understand so many things that I have noticed over the years, but shrugged off.
-My entire life, I couldn't wear a headband. It would always slip off....because of my flat head! lol
-My sunglasses are always crooked because my ears aren't level.
But that's the silly, no big deal stuff that I noticed. The debilitating symptoms have been the real issues. Besides the headaches, pain, vertigo, & POTS.... I have severe problems with my BP/HR jumping up and down for no reason...just totally out of control and not in sync with my level of physical exertion, my respiration is difficult at times....as if I have to "think" to breath....and that's during the day, I have major temperature dysregulation, I have recurring vertical diplopia & right ptosis in addition to Horner's syndrome, I have tremors on my right side...but only above the waist. (arm, neck face) that come and go, but can be elicited with hyperventilation. (Found this out by accident.)
There's probably more, but I can't think of them at this very moment. (You guys total understand the memory issue!) So, since last week, I have Googled my computer to death trying to learn as much as I can and try to connect as many dots as I can. The more I read....the more I'm connecting. And I am thankful for a group like this to learn, share, and most of all....be a support system for each other. I'm looking forward to getting to know all of you!
The chiari headaches have gone also. I now have a normal headache and I can live with that. The BP and HR issues have left me which is a relief. i was passing out and “forgetting” to breathe on a regular basis. I was sick of Dr’s telling me it was a panic attack or dehydration. I wasn’t panicked and I was full if fluids Lol I’m having complications due to an infection (still awaiting test results) but on the whole the surgery has changed my life. My hearing and vision are still off but the Dr’s explanation is it takes time for my body to adapt to the “new brain”. I can wait… Ten years of this disorder, what’s another few months! I hope you can get help and feel the relief so many of us do after surgical intervention. The first time I heard my DX and felt true sympathy and understanding from my NS was the day I got my life back. It was most defiantly a high five moment.