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.

5 thoughts on “After Learning She Had Chiari, Bonnie Steps Up For Future Generations”

  1. Lillian says:

    Wow, as I am reading your story it’s like if I am reading mine except that I haven’t been checked by a Chiari specialist. I have only seen a local neuroligist. I am also a school teacher and suffer from headaches mainly due to the elevation and mold in Arkansas compared to South Texas. I fell and hit the back of my head in 2010 and it’s been worse since then. Of course finally got an Mri last year and found out I am 7mm protruded but noticed that my worst headaches have gone away since I started on topamax & gabapentin and I gave up drinking

  2. Larry says:

    Hi Bonnie and Lillian,
    I just came across this post as I was looking for chiari charities in the North East. Bonnie, I think it’s wonderful what your are doing to help those of us suffering with Chiari everyday. I am 36, and I should say about this time last year I thought I was pretty healthy. Started getting some aches and pains, but I have been powerlifting since I was 18, also used to box and do martial arts, so i knew the the pains would be coming at some point. Last summer, I had a bit of a mishap with the lawnmower, let’s say a tree jumped in front of me. At the time I was happy that the tree threw me about 15 feet. I remeber waking up on the ground with a family member asking if I was ok. Took me about 20 mins, but I finally decided to go to the hospital and get checked out. On the ER release orders they put down Concussion, and in quotes put Brain trauma. I have had several concussions in my life, and this one to me didn’t feel any different.
    Fast forward to the past January, I started getting piercing headaches from the back of my head, into my eyes, and right above the eyes in the forehead. If I would go to bend over, it would feel like I had a sledgehammer hitting the inside of my skull, trying to get out. Light also really started bothering me, even at work it would not be uncommon for me to have all the lights off in my office, and the shades slightly opened while I worked. I went to an ENT at the behest of my GP, and he diagnosed me with a severe sinus infection. Hooray, problem solved I thought. So I was hospitalized for 5 days on heavy antibiotics. Upon being released, I still had the staggering headaches, but also started having numbness in parts of my body. I went back to my ENT, and mind you I am very thankful everyday for what he did for me, and he ordered another MRI to see how the soft tissue’s were in my sinus cavity.
    I remember him calling me on the phone the next day, telling me that the great news was there was no more infection, the sinus infection had completely cleared. Then, he threw in ” You should go see a neurologist right away”. Scared the hell out of me. I remember going in to see my GP, and asking who they would refer, and they recommended a neurologist/pain management specialist in Middletown, NY. I am thankful everyday that I met this man. I was diagnosed with a Chiari Malformation, and Dr. Napchin was very thorough. He did every test he could to rule out any alternatives causes to my issue’s, and as new symptoms have arosen, he has been there every step as well. He recommended me to place called the Chiari Institute in LI, NY. This was back in the end of May, and I am scheduled to have surgery the 23rd of next month.
    If you have any knowledge of any charities or fundraisers in the hudson valley, or NY city portions of NY, I would love to be able to do something for them. I know not everyone is lucky enough to have a dr that can point them in the right direction without telling them that everything is in their head. There have been times where I have felt like something was crawling through my brain, and Dr. Napchin explained it’s just the pressure from the chiari. My advice to anyone out there, you know when something is not right with your body, and when you feel something is wrong, especially something involving your head, please get it checked out.

  3. Predator56 says:

    I’m comparing my life to his. I have Chiari Malformation Type 1, I was diagnosed with it at the age of 7. Which was like, 5 years ago? Just knowing there are people out their with the same problem with this disease, it makes me feel im not the only one. I was lucky to have such a good doctor perform on me, yet, the effects of the surgery was a mystery. I was lucky to have not many bad defects, well not defects, I had to relearn balance in my walking. But that was nothing. I still remember laying in the hoital, taking meds, at home with my tutor. I remember it all.

  4. Vicky says:

    Hola, tengo 36 años y me diagnosticaron chiary malformation 1. Tenia fuertes dolores de cabeza y mucho dolor en el cuello el cual estaban confundiendo con un espasmo muscular pero no era eso. Hacen 4 meses me operaron de hidrocefalia, a causa del chiari. Me gustaria saber mas sobre la condicion y sobre todo conocer personas que esten pasando lo mismo. Gracias!!

  5. Tammy Miller Phillips says:

    Could you give me some information on starting or maybe being an off branch of your group here in Richlands /Jacksonville NC!

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