Meet Chiari Warrior – Mindy

I have always been very open about my journey with Chiari Malformation.  Over 2 years ago, I didn’t even have the word chiari in my vocabulary.  But, today, it is there and it is a word I think of on a daily basis.  I don’t think a day goes by where I don’t utter the word…chiari.

I was diagnosed with migraines in middle school (1997-ish).  Following that diagnosis, I have been diagnosed with just about everything under the sun from carpel tunnel to thoracic outlet syndrome to TMJ and a whole host of others.

In the Spring of 2012 I found myself making an extremely hard decision.  I made the decision to quit my job as a bank teller because I couldn't handle the headaches anymore.  Shortly after, I was diagnosed with Chiari malformation.  I had no idea what it was and my doctor didn't seem concerned so I wasn't either.  Later that year, I went back to work but only part time.  It seemed to be going alright but the headaches were something from a nightmare.  An it only got worse from there.  When they came, I was curled up in bed with a pillow over my head.  I didn't want anyone to talk or move around me.  I didn't want to be touched or consoled.  At that point in my life, I think death would have been easier!

My headaches went from the back of my head all the way down my back.  I couldn't move, cough, stretch, or laugh without causing pain.  By the time 2016 came around my life had changed so much.  I couldn't do the things that I once could.  Everything caused pain.  Even walking was a task.  I would lie in bed and listen to my husband and kids play baseball in the front yard and I couldn't join.  I couldn't hike or kayak.  I couldn't even take my dog for a walk.

I started to hear Sarah Dyer's stories about her symptoms and her diagnosis and a light bulb went off.  I said to my husband, "Do you think that has been my problem?"  I went to a few doctors in Maine and was, essentially, told that it was all in my head and that my chiari was barely classifiable as chiari.  "It can't be causing your symptoms."  "Let's try you on anti-depressants."  "You need to be more active."  How are you supposed to be active when it hurts to breath?  I wasn't just depressed; I was pissed off!  I wanted MY life back.

I was in a dark place and not very hopeful when I decided to see the specialist in New York.

My husband and I met with Dr. Paolo Bolognese.  He told me he understood.  He told me that chiari was absolutely causing my symptoms.  He told me that he could help me.  Finally, a doctor that isn't trying to tell me that I am crazy.  Finally, a doctor that is willing to help me.  Finally, answers!  I not only had chiari but I also had craniocervical instability.  We met with him on a Friday and during that initial meeting he told me that surgery was my best option to start feeling better.  He made it very clear that surgery would not cure me but it would definitely alleviate some of my symptoms.  Dr. Bolognese told us to go home and talk about and get back to him.  Before we were even out of NY we had decided that surgery was going to happen.  I called his office the following Monday and scheduled surgery for August of 2016.

Wow!  I had just decided to have brain surgery.  Who does that?  I had my surgery in August 30th.  During that surgery, my top vertibrate was shaved down to about half the height it would normally be to create more space and the cerebral tonsils were actually cut out.  Yes, you read that correctly; a peice of my brain was actually taken out.  It was also discovered that I still had a vellum that shouldn't be there.  We learned afterwards that removing that was more dangerous than the rest of the surgery but if it hadn't been done then I would still have the same symptoms.  After all of that, I was back at work full time by December 1st!

Since surgery, my life isn't "back to normal."  I have different doctor's appointments all the time.  I still deal with pain every day and I haven't been able to hike a mountain yet.  I am still looking at another surgery for the instability.  I have random symptoms like pain, numbness and tingling in my arms and legs.  Pain and tingling in my back and neck.  My skin crawls due to nerve damage and I never know how I will feel from one day to the next but I don't have headaches everyday.  For that, I owe Dr. Bolognese everything.  I am alive and able to function.  My life isn't perfect and I know that this will never go away but I do what I can when I can.

I am strong.  I am chiari strong!  I am a warrior.  I am a chiari warrior!