My (Chiari) Story

... the short version

When I was 17 I started seeing a neurologist due to some of my symptoms. I believe it was a year after I began seeing him that he ordered an MRI of my head and neck after I had severe neck pain. It was then that he discovered that I had Chiari Malformation. He explained that it is a birth defect of the brain stem and that it could explain several of my symptoms. Baffled as I was to have yet another diagnoses added to my list I was somewhat relieved to have perhaps another answer to my problems. More answers more options to fix them, right? My mother and I were both however pissed off (to say the least) that no doctor before had discovered this in one of the previous 12 or more MRI’s I had had. My neurologist told us to seek out the help of a specialist, so we did. 

Back to New York, this time for a duo doctor visit, LLMD and Chiari Specialist. Previous to the Chiari appointment I had rigorous MRI’s and CT scans and one kind of scan that I have forgotten the name of but it took very realistic pictures of my skull and spine. It was very cool; I still wish I was able to have kept those pictures. We saw two specialists; the brain surgeon and the neurologist guy. The surgeon told me that Chiari was causing 90% of my symptoms and that surgery could fix them all. 30 minutes later the neurologist came in and said that the Chiari could be causing some of my symptoms but that he couldn’t be sure. He said that surgery could be somewhat beneficial or make the symptoms worse. So that visit was completely contradictory. I was more confused when I left than before I went in! So I basically put the Chiari thing on the back burner until a year later. Then I found a new Chiari specialist that I heard great things about, so I gave him a chance. Plus he was in Colorado, and even though I was going to spend my entire life savings on this doctor’s trip I was completely stoked that it was in Colorado! And this doctor was awesome, I loved him! He said that a large portion of my symptoms could be from the Chiari and that he felt that surgery would be beneficial. He correctly identified that I had syrinxes in my spine and that I also had spina-bifida and could possibly have tethered cord syndrome. However during his visit I also saw a nutritionist and with all of my digestion/ stomach issues the doctor said that I would have to be able to consume a certain amount of calories per day and keep them down before he would ok the surgery.

So I am still trying to fix my gut issues first. Even though I am now experiencing new Chiari symptoms and am leaning more towards having the surgery I have to get my gut in working order first. So just like my Lyme journey, the Chiari journey continues on as well. Just another adventurous chapter to add to my life book, that will hopefully one day in with a ‘happily ever after’ ending.... and not a huge cliff hanger. Dun dun dun!!!