Continuing My Chiari Story

Wow!  It has been an amazing couple of weeks.  I really would like to thank the Simon Say Stamp Monday Challenge Design Team (especially Anna-Karin for her lovely comments ) for the Spotlight on my Chiari Canvas.  I would also like to say thanks to those who pinned the Chiari Canvas on Pinterest.  All of you have helped me get this message out and raise awareness about the sometimes hidden and often debilitating condition known as Chiari Malformation.

My tag today celebrates what I'm feeling.  For years, I battled an unnamed and virtually invisible illness. Often I felt very alone.  This month, my art has given me an avenue to reach out to others who have lived this Chiari life and to those who have never heard of such an illness.  I love this Tim Holtz stamp "in dreams we catch glimpses of life larger than our own".  That has been what the last couple of weeks have been for me.

If you take a look at the entire tag, you will see evidence of my Chiari life.  I was trying to use some of my alphabet stamps and my placement got a little wobbily.  I was pretty tired last night but I was determined to get this tag done.   I was too tired to redo it or find a fix, so I'm sort of stuck with the wonky words ;)  The tag's background was made with my favorite color of Distress Stain, Seedless Preserves, purple Perfect Pearls from the Jewels set, and some Dylusions Ink Spray in Crushed Grape.  I spritzed it with water and applied some heat.  Love this color!!  I added a couple of Tim's other stamps to frame out the background.

 My awareness ribbon actually started out as a beautiful cream satin edged with gold.  I used the Seedless Preserves Distress Stain and water to get that pale purple color  The base on which my ribbon lies is a Tim Holtz grungeboard square.  I stained it first with Seedless Preserves Distress Stain and dried it completely.  Then I used a Perfect Medium pen to outline the swirls.  I applied the same purple Perfect Pearls from the tags background to the swirls.  That was heat set.  Then using a small paint brush I applied Broken China Distress Stain over top of the Seedless Preserves to give it a darker, bluer tint. The ribbon was attached with Glossy Accents.  I outlined it with Picket Fence and Black Soot Distress Markers.

I embellished the tag with black trim ribbon and a ring duo charm that emphasizes the hope that I have for my own health and for others out there with Chiari.  It seems that each week physicians and researchers are making major advances in this area. 

For those of you who are interested, I'm going to share a little more my person story with Chiari.  If you would rather not listen to someone else's boring health problems, I'm not offended :)  I hope to see you the next time I share more of my art.

So My Chiari Story Continues ...

Actually, it's the beginning of the story and the background of why I am so passionate about raising awareness for Chiari Malformation and its related illnesses.

Flashback – Fall 1995:  I vividly remember that headache.  I was a somewhat ambitious doctoral student at the University of Georgia.  I already had plans for my dissertation and life was going well.  It was the beginning of the term and I was heading from my office on the first floor to my seminar class on the 6^th floor.  Other than adult-onset asthma that I had acquired a couple of years earlier, I was in fairly good shape at the time.  I was late so ended up running up the stairs (faster than our building's elevator).  By the time I reached the 6^th floor, I had a headache.  It was on the left side of my head and it pounded!  I was sure it would go away by the time I relaxed, so I went into class.  I was wrong; it got worse. 

I don’t remember much about that class except the pain and trying to keep up with the discussion.  (A couple of days later, I recall telling my advisor that I hoped that I didn’t make a fool of myself during that afternoon’s seminar.  His only reply was “Well … at least you didn’t dance on the table.”  Ugh!)  I definitely do remember getting back down to my office.  Lights were too bright.  Sounds were too loud.  And every step made my head feel like it was going to fall off.  Over the next couple of hours, I took four Advil and then a couple of Tylenol that I had bummed off of someone in our department.  Nothing helped.  I was not able to drive myself home that evening and I was scared. 

I still had a headache the next day and I went directly to the University’s student medical clinic.  I got my first diagnosis of migraines.  After that day, headaches became a way of life for me.   The rest of that year was okay.  I was getting use to the headaches.   I lived by Excedrin Migraine.  At the beginning of summer 1996, I had completed all but one of my comprehensive exams and was working out the details for the dissertation study I hoped to start in the fall.  In the meantime, I managed to work as a volunteer for the 1996 Atlanta Olympic Games.  It was an amazing time, but I remember the headaches intensified during those few weeks.  I thought it was just the pace I was living at during those days. 

When the Olympics ended, I went back to UGA and started working on my next comprehensive exam.  I felt exhausted.  I was sure that if I rested enough, I would get better.  Within a week, I started running a low-grade fever, sore throat, and had excruciating pain in several joints, especially my left shoulder.  Within a few more weeks, I could barely get out of bed.  We were very concerned that I may have caught some bug during the Olympics.

It took six months of testing and a trip to a rheumatologist to rule out everything from Lyme’s Disease to AIDS.  The student medical clinic ran so many tests on me that they began taking spare blood taps for future tests since my arms were beginning to look like a Heroin addict’s arms from all the needle marks.  The only thing that they could find beyond the symptoms I was exhibiting was anemia. 

By midterm, I returned to school.  Pain would go from one joint to another:  hips, knees, ankles, jaw, neck, ... no joint was discriminated against.  The worst pain was in my shoulders, vertebrae, wrists and fingers.   I couldn't even hold a pen to sign my own signaure some days. I also would have periods where I would functionally black out.  I would leave my office building to walk to my car in the graduate student parking lot; and the next thing I knew, I was on the other side of a four-lane street and I was half way to my car.  That was extremely scary.  By the end of the six months and all the testing, I had a diagnosis of Chronic Fatigue Syndrome. 

I managed to graduate with my doctorate and I started teaching at another university in Fall 1997. In 2000, I found a job closer to my family in North Carolina. I love teaching.  My students are the reason why I get up in the morning, especially when I'm fatigued and suffer with my symptoms.  Fatigue is something different from just being tired.  It’s like someone pulls a plug in the bottom of your feet and all of your energy leaks out onto the ground.  I would lie down to rest and then all of the sudden my heart would start racing.  Then there would be days when I would have vertigo and nausea.  My ribs would slip out of alignment causing a great deal of pain.  There were violent bouts of irritable bowel syndrome.  I couldn’t hear well out of my right ear.  I had cognitive issues like not being able to remember how to get to a friend’s house or a restaurant that I had been to just recently.  Symptoms would come and go.  I had a heart murmur and then I didn’t.  My eyes didn’t track together and then they did.  But the headaches … they were my constant companions.  And they got worse. One lasted for 21 days and another lasted almost a month. These marathon headaches only stopped after large doses of narcotics and muscle relaxers (sometimes multiple rounds) that would knock me out.

Through it all, I never missed a day of work.  I kept going.  The one comment that many Chiari sufferers get from those around them is "but you don't look sick".  Most of our symptoms leave no external signs.  Some of my family, friends and colleagues wondered if it was all in my head.  That hurts as much as the physical suffering.

 I did change my primary care physician about five years ago.  The new doctor believed me when I said that I felt like something else was wrong with me.  My joint pain, fatigue, and headaches were becoming almost unbearable. I wasn’t sure how much longer I could keep functioning at my current level.  After listening to my history, he was concerned that I might have Myesthenia Gravis.  So we sought out a neurologist.  The neurologist was pretty sure I did not have MG, but he did diagnose me again with classic migraines.  When I went back to my primary care physician, I asked him what was next to explore.  He said that was it.  I asked him about the mind-numbing fatigue and the myriad other nuisance symptoms I had.  He gave me a hug and said, “Some people just have chronic fatigue.” 

Then one spring morning in 2010, I woke up with a severe pain in my neck.  My next new primary care physician thought I had a ruptured disc and sent me for a neck MRI (CSPINE).  That’s when life got very interesting.  The radiologist confirmed the ruptured disc between C6 and C7 and … he also saw a Chiari I Malformation approximately 5 mm long. 

A summer of neck traction took care of the ruptured disc.  But it took a couple of years to take care of the Chiari.  First of all, my neurologist told me, “That’s not a Chiari.”  Evidently, according to his experiences, I just had slightly herniated cerebellar tonsils.  And, since I didn’t have a Chiari, it was highly unlikely that the herniation could be playing a role in my headaches.  He did tell me that I did not exhibit the classic Chiari headache pattern.  That was true.  I later found out that my Chiari was asymmetric (longer on the left side than the right) and that was why my headaches seemed more like left-sided migraines than Chiari headaches. Anyway, we didn't know that at the time so we forgot about the Chiari Malformation note on the radiology report and continued to try to find something that would help me reduce the frequency of my "migraines".  I was seeing my neurologist every three months to discuss the results of the latest prescription or strategy and then discussing what to do next.  Because I really did not have migraines, migraine medications would create bizarre side effects.  That was difficult to deal with as well.

By Fall 2010, I was suffering with headaches on a daily basis.  I developed new symptoms: reactive hypoglycemia, occipital nerve pain that burned the base of my skull, pins and needles in my hands, and something that I call a “brain zap” or “zing”.  This weird "zing" is like having an electric current running through my head.  It feels like sticking your finger in a live light socket.  Sometimes it runs just through my head.  Sometimes it runs through my head and then down to the tip of my fingers.   

Then came one of the most pivotal moments of my illness. I had a headache that was so painful, I honestly was aware of nothing else around me.  I was going to see my niece in an end-of-summer-drama-camp production. We were waiting outside the building for the doors to open on a Friday evening.  I felt nauseated and the pain in my head just continued to build.  I took multiple Excedrin Migraine, but it didn’t touch the pain.  I sat down on a bench while everyone else went to get my niece some flowers for her performance.  Anything could have happened to me that evening while I sat there and I would not have even registered it.  I could have been kidnapped, mugged, etc, and I would have been helpless to do anything about it.  All I was aware of was the pain.  I couldn't keep going like this.  I would lose my job and any quality of life that I had.

I called and made an emergency appointment with my neurologist as soon the office opened.  He said that we had done exhausted treatment options.  He recommended that I see a neurosurgeon to see if the escalating headaches had anything to do with the ruptured disc in my neck.  In August, I saw a neurosurgeon in the area.  After an hour of neurological testing (in which I was very surprised to find out that I had decreased sensation in my left arm and the left side of my face), the doctor asked me into his office.  He pointed to an image on my brain MRI and asked me if I had ever heard of a Chiari Malformation.  I just kind of laughed and said that I had.  The neurosurgeon went on to say that he was fairly sure that my headaches were being caused by the Chiari and that I would probably benefit from decompression surgery.  He went on to explain that he would remove some bone for the base of my skull and the top vertebrae to make room for the cerebellum tonsils to move back up into my skull and give room for cerebral spinal fluid to flow.  I was dumb-founded.  I told the surgeon that I wanted to think about it for a little while before I made any decisions.

After discussing the results of this visit with my neurologist, we decided to go for a second opinion.  An appointment was set up with a neurosurgeon at one of the best hospitals in our state.  Before I could go to that appointment, I started losing feeling in my right arm and hand.  I also had some bizarre involuntary movements in my left wrist.  I was given an emergency appointment with the hospital's neurosurgeon on call that day.  After giving me less than five minutes to discuss my symptoms and briefly looking at my MRI’s he told me that I most likely had carpal tunnel in my wrists.  I asked how the carpal tunnel could impact my headaches.  He then said, “Oh those are probably tension headaches.  You are stressed, aren’t you?”  I was furious.  I know what tension headaches are and there was no way that my horrible headaches were tension headaches.   I went out into my car and cried.

I returned to work that afternoon and told one of my colleagues, who incidentally does have carpal tunnel, that there was nothing wrong with me.  I was just going to shut up and be healthy … even if it killed me.  My family could find out what was actually wrong with me when they did the autopsy.  This colleague (and very good friend) told me that I had 24 hours to “be healthy” and not think about my health issues.  But after that, I either had to continue my search for a doctor who could help me find out what was wrong or she was going to kick me in the backside.  I will forever be grateful to her for that.

Twenty-four hours later, I realized that even if I went to every neurosurgeon in NC, I would probably end up with the dichotomy of opinions like before.  There seems to be very few doctors who really have a deep understanding of Chiari Malformations.  So, I decided to find someone who specialized in Chiari.  I spent a few days searching the Internet.  From what I have read, there are great surgeons out there, but it seemed that The Chiari Institute had an entire staff of professionals who could look at my case from a variety of viewpoints and Dr. Bolognese seemed to be one of the best Chiari specialists in the country.  I filled out all of the questionnaires and immediately faxed them to TCI.  When I received an email that my case would be look at by the interdisciplinary group at TCI, I felt like I had won the lottery.  It wasn’t long until I was invited to meet with Dr Bolognese.  I breathed again.

Sorry for the long story, but sixteen years is a long time to suffer and have people think you are an attention-seeking lunatic:)  I'll continue this story later in the month.  I tell it because I want to help people understand this odd illness and hopefully encourage others to keep looking for answers.  They are out there ... even when you really don't believe so yourself.  

Thanks for listening.  -- Mary Elizabeth