Gravity Always Gets You In the End

Looking back, chiari and insufficient CSF flow symptoms have persisted all of my life. I just didn’t know what was truly going on. In childhood, it was clumsiness, eye floaters, ears ringing, etc. Honestly, I and probably everyone else just thought I was a wimp. Each year church softball season would come along. At the beginning the coach would try me out at pitching. Could lob the ball over the plate pretty decently for a few throws until my head would ache and a pain in the back of the neck would bring on nausea and I’d be shuttled off into the outfield. As the years passed, I shied away from sports and too much sun.  My eyesight started doing something I like to call “Picasso vision” (maybe this attributes to some of my judgment in men). Glasses never seemed to do the trick. Due to the constant ringing in my ears, I always slept with an old hood hair dryer running on cold. Excuses for every ailment/symptom kept piling up.

2011-2012 was when everything finally came out in the open. My balance was so bad that I couldn’t hide it any more. Jeff moved to Switzerland for work and on my first visit to help get him settled in, I lost physical control. The secret was out. Had no choice but to start delving deeper into my own research. Have a wonderful GP, but he had never dealt with any of this before. He sent me to multiple specialists to rule everything out from eyes, ears, innards, eegs, ekgs, pet scans, you name it they stuck me with it, shocked my muscles, strapped me in contraptions, and pretty much made me feel like a magnet from all the MRIs I had. Finally was sent to a neurologist who dealt with people like me with chiaris, tingling appendages, etc. Everything also seemed to sound like MS. I thought this was the beginning of truly sorting the mess out. WRONG. Little did I know specialists aren’t so special when they do not read the scan results. I could have been fully diagnosed right then! Instead, this ass decided since I’m a female and my significant other is in another country, this whole thing must just be a case of nerves and all in my head even though he acknowledged I had a chiari. He just thought it wasn’t big enough to matter. One important rule on chiari malformations is size does not matter. His solution was to just drug me up, but luckily the meds made me walk into a closed door and I stopped them immediately. Stress may have made my symptoms worse but were not the cause. Little did this man know, I eat stress for breakfast. Mr. Specialist sent me all over again to another round of doctors and other neurologists. NO ONE READ THE TEST RESULTS! I spent over a year being shuttled around and told it is still all in my head. There are so few doctors that actually know about (or are well informed about) chiari malformations or dorsally angulated odontoid processes and those that do, do not always know how to deal with them. 

Hurricane Sandy hit and closed NYU Hospital, and I used that as a way to just stop. I gave up. Months passed and I grew worse. Jeff finally put his foot down and made me go back to my GP and my pain management specialist and that was when I finally truly found help. Dr. Jesse Weinberger at Mt. Sinai was my savior. He listened. He didn’t dismiss me because I’m a woman. HE READ THE TEST RESULTS! By this point the files were as thick as the Gutenberg Bible and it did not even make him hesitate. He also looked at all my scans and pointed immediately to the bone poking into my brain, platybasia, and the chiari (which did turn out to be pretty big). Then with further tests, he found more. Finally the truth is revealed! It was all in my head all along… and my spine, and my skull, and my brain. Oh, he also pointed out that gravity is a big key in all this too. Jowls and boobs aren’t the only things that sag as we age. My brain is and will continue (until I give in to surgery) to slide further back into my spinal column and keep impaling itself on that lovely bone.

I will always be indebted to Dr. Jesse Weinberger, Dr. Lawrence Adler, and Dr. Vinoo Thomas. They care, they listen, they never gave up on me, and they are the embodiment of what you want from a doctor. They are the best of men.

A really good read

http://www.amazon.com/Women-Asylum-Voices-Behind-1840-1945/dp/0385474237

Picked this up eons ago, but it stuck with me. In some of the case studies, women were institutionalized based purely on a man’s word. Some were told, it’s all in their head. Sound familiar?

#chiari #invisibleillness