September is Chiari Awareness month.  Each day, I am going to share one person’s journey…in their own words.  Chiari malformation is a condition where your brain herniates below the base of your skull, compressing the brain stem and spine.  The symptoms are unbearable, at best, and there is no cure…

Meet Lisa...

I am affected by syringomyelia and Chiari malformation.

My symptoms started as a child. Debilitating headaches left me bedridden for days, I was told they were "migraines". As I got older my pain increased. I had sprains and broken bones. I was "Clumsy" and would drop things. I was getting worse and the tests showed nothing. I was told it was "psychosomatic", that it was all in my head.

After many years of frustration with my situation, in late 2012 I consulted with a doctor who put me on the path to specialist. It did not go well. I took it upon myself to go through some old medical records and came across an old MRI report. One word stood out, "SYRINX". I consulted with my primary care physician and he notified the neurologist. I then had another MRI was off to a neurosurgeon. I walked in and he said "You're on the operating table NOW because you are a sneeze and or cough away from being paralyzed". The MRI report that triggered all this was dated 2006, years earlier. It struck me that much of the pain and suffering that I endured had much to do with the lack of awareness within the medical community.

I had a Decompression Surgery (CM1) which involves removing a portion of the back of the skull to allow enough room for the tonsils to ascend into their natural position and resolve the Syrinx. I wish I had the education I do now, I was misdiagnosed, I actually have Complex Chiari and the decompression surgery actually failed, it made my cranial cervical instability worse & a portion of C2 was also removed.. C2 is crucial for stability.

My symptoms continue to this day and I realize that this is much larger than just me. Hundreds of thousands of others suffer through this journey. It is one of pain and frustration with both the symptoms of the disorders and lack of awareness by medical professionals. I knew I had to do something to help others and maybe make their experiences less exasperating and painful than my own. I started a support group through the American Syringomyelia & Chiari Alliance Project Inc. We bring together people who understand the frustration of others, and share experiences and knowledge. It is safe haven where what's said in group, stays in group.

Bottom line I feel is, with the medical technology we have today there is little reason we have to suffer when the education is literally at our fingertips. A lot of these conditions are hereditary, for myself that's 3 generations not including my parents.
 I had the opportunity to attend this year 29th Annual Medical Conference in New York. There were 70 speakers from 4 continents & 20 states. I was overwhelmed by all the information that was presented about the changes that are taking place. I found that the medical education here is 3-22 year BEHIND. A few other states are this way as well.

A few things were stressed. One big one was The "thinking" of some in the medical field, believe this is a physiological conditions  instead of what it truly is, a medical condition.
* The lack of education among the medical field to identify which Chiari one has including radiology, this results in the wrong surgeries performed and actually can make the patient worse.
The word "Malformation" is going to be eliminated, instead "anomaly" may be used and for Chiari 1 will be broken down to Chiari 1 - A,B or C due to the congenital/hereditary subcategories.
* In connective tissue disorders, (also hereditary) there are new diagnosing criteria, right down to the way a child holds a pencil as a way of identification.
This education is a double edged sword.. Great for us with these conditions but scary as a lot of doctors & radiology here are not educated enough.
This is a huge financial burden for the state. We can change this here.
* For most of us, we have to go to Boston etc for a correct diagnosis and treatment, including a simple MRI.. WHY?
*Most of us are disabled due to the prolonged diagnosis and treatment. If a patient is on Maine Care.. the cost to the state having Lynx Transportation take us out of state to see an educated doctor, another trip for an MRI and more trips for treatment and continued evaluations and care.
*These costs are astronomical to Maine and us as patients as we and our children are the ones who pay the ultimate price. We want to change this.
The Chiari Institute in New York turn away hundreds of patients a year (they accept New York Care, like our Maine Care & private insurance). Why can't Maine develop and implement the same. It would create jobs, the money will stay in Maine, people from other states would come here, patients wouldn't move to another state for treatment, our children could be close to home. It would be a win, win for both sides... Again there is little reason we have to suffer due to lack of education when it is literally at our finger tips.
I also have spoke with patients from other states that have a recognized treating hospital and where early detection is crucial, it is not uncommon for a teacher, PE teacher or a coach help identify children. This saves them a life time of agony so they can live a healthy, productive life.
This year's ASAP Medical Conference was offering CME's, if travel was an issue, the same offer extended to participating/viewing on line. NO ONE from Maine in the medical community took this opportunity.
In short so to speak, welcome to the family, have faith if a doctor tells you "it's all in your head" they could be right, have them check. Become as educated as you can on your condition & the other Chiari's just in case. BE YOUR OWN ADVOCATE, you know your body & I've met no one who wants these conditions. It is okay to ask for a second opinion, in fact there is a Neurosurgeon in Boston who is willing to speak/work with any physician here. For those on Maine Care, this Neurosurgeon is already approved for "Out of State Services" Chiari is not a "rare condition". Call your Senators, Representative's etc to stress education with the medical community including radiology.

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