My Chiari story began during the summer of 2007. I began having ringing in my ears/head.
I thought it might be because of my CPAP (continuous positive airway pressure) machine, which I had just started using in April. I also thought it could be from stress (a very happy stress), as my daughter was getting married that month.
My primary care doctor said not to worry about it. Take some B vitamins.
I tried the B vitamins, but I was still concerned. Next, I consulted my pulmonologist. He checked me every six months because I had pulmonary emboli (PE), which is a blockage of the main artery of the lung or one of its branches by a substance that travelled from somewhere else in the body, in 2004.
That doctor tried a few things: re-checked the pressure of CPAP, took me off of CPAP temporarily, and sent me to an allergist. Nothing that he tried helped.
I went to the allergist and began getting allergy injections. I really needed these injections, but they did not offer relief of the tinnitus. Six months went by, and I saw my primary physician for something else. I was able to persuade him to give me a referral to an Ear Nose and Throat (ENT) doctor. By this time, I was also getting hyperacusis.
I was having trouble with staying in noisy environments. I had to stand outside the door at staff meetings. I got a decibel meter at Radio Shack and measured that the sound became unbearable between 80-85 db.
The ENT ran several tests, and found I didn’t have reflexes in my ears. He also found my hearing to be normal. He scheduled me for further testing and requested I give up caffeine and salt. I passed all of those tests and my ears were still ringing 24/7.
He was puzzled, so he told me to see a neurologist.
The neurologist checked me out and did an MRI. The MRI showed a Chiari malformation, type one. He decided this was the cause for my tinnitus. I was told that there is no cure for the tinnitus, and the Chiari symptoms weren’t bad enough for surgery. Anyway, the surgery would not fix any of the current neurological damage.
He suggested that I join support groups and get information from reliable websites as well as have annual check-ups to make sure I didn’t have any further symptoms. My health coach suggested that I be seen at the Mayo Clinic in Jacksonville.
In September 2009, I was thoroughly checked at Mayo. They said there was nothing they could do for the tinnitus and it would be another 10 years before there was a cure. Furthermore, the ringing was due to my brain and not my ears. Along with confirming I did have reflexes in my ears, I was also diagnosed with Fibromyalgia and began treating me for that. I have been fortunate to find a local doctor to treat the Fibromyalgia.
I do have other symptoms: headaches, dizziness/vertigo, clumsiness, pain and especially fatigue. I continue my job as a school teacher, but it is tough!
Since then, I have been volunteering for Conquer Chiari. I became a “Walk” Organizer for the Northeast Georgia Conquer Chiari Walk Across America in 2011. I worked on preparations for the most recent walk on September 22, 2012 in Decatur, Georgia.
The Conquer Chiari Walk Across America went great! We had approximately 121 walkers and almost $10,000 was donated to the charity. But the single most encouraging part of the event, was to see people who felt alone – finding others with similar diagnoses. To see the camaraderie and relief of knowing others was truly wonderful. My friends learned a ton and seemed to come away from the walk with a better understanding of the disease!
Although I hide it from most individuals, I still fight terrible fatigue and pain. I have been seeing a therapist that works with patients who deal with pain. She is helping me to get a 504 plan at work, as it is very difficult, stressful and never-ending. Unfortunately, I don’t think the other teachers understand my condition at all.
Yet, I feel that my symptoms are not as bad as many people with this disorder and; therefore, I should step up and do something for the future generations. I have learned it is the research and awareness which are most important for those that suffer now and in the future.