A large part of the reason I want to tell this part of my story is for others who may be struggling and suffering from Chiari but don't know it yet. The more MRI's that are done, the more that are found. It is a rare, underfunded, incurable disorder so the least I can do is my part. I know there are others who have that feeling that something is wrong with their body, but no one has been able to put a finger on it yet because the symptoms are so all over the place. Thank goodness for my chiropractors who spoke up and said my newest symptoms called for an MRI, and a new doctor who really listened to me, and agreed. I've always had that feeling that if anyone ever looked inside my head, they would find something wrong. What do you know, my gut feeling was right..
Anyone who has known me for a while knows that physical health is something I've often struggled with. My childhood through early adulthood was filled with everything from regular sprains and broken bones to migraines, asthma, Raynaud's disease, Mono, EB (chronic fatigue), inability to keep weight on, etc. Despite all of this, I still managed to excel in sports in middle school and stayed active with some outside of high school. On top of all that I was in two car accidents within 6 months of each other around age 11. The first one we were rear-ended, the other hit on the side where I was sitting. It wasn't but a couple years later that I started chiropractic care for my neck. During one of those sprains/breaks, I shattered the growth plate in my ankle, which meant that leg would not grow any more, but the other one did (Ei-leen!!). It fortunately only grew 9mm more since I was such an early bloomer, but that was enough. I ended up needing more chiropractic care for the strain on my hips from my uneven legs.
The next thing I remember after that, besides a few more rounds with the ankles (Skydiving, Tara ;), is a fall I took onto my tailbone while waitressing. It was quite traumatic to my lower back and required even more regular chiropractic care. My whole adult life I have struggled with back and neck issues, headaches, and migraines. Those of you who truly know what migraines are know why I listed them separately from headaches!
Pregnancy seemed to help my lower back with the joints becoming more fluid so they could spread and move as needed. Overall my pregnancy was a wonderfully smooth experience, until delivery! We knew all along that Logan would be a bigger baby. Not record breaking, but difficult for my size and frame to handle, even if healthy. My doctor was concerned that I wanted to give vaginal delivery a try, but never ever did I want to go through what I had to by the time it was over with. Needless to say Logan's birth was unusually traumatic to my body, because it wasn't healthy. I now know it was particularly traumatic to my spine, but at that time, we had no idea there was something bigger going on. Had we known about the Chiari, I would never have been allowed to have a vaginal birth, a c-section would have been required, and will be in the future should it be necessary ;)
I can't remember if it was within weeks or months, but not long after giving birth I started having these pains whenever there was any strain on the muscles in my midsection, in other words, the muscles used in childbirth. Often when I would sit down, get up, bend over, or anything else simulating childbirth (TMI), I would feel this pain and tightness start at the back/base of my head, then creep up over my head to my forehead, where it would pulse and pound for anywhere from 5-15 seconds or so, then stop. It is completely debilitating, all you can do is close your eyes, clench your teeth, and wait for it to stop. It's kind of like a brain freeze, times a million. Those 'pains' became more and more frequent, especially anytime my neck was out of place. I now know that those 'pains' are what is called a True Chiari Headache. Earlier this year a new symptom began. Anytime I would 'crack' my neck to relieve tension, normally a few times a day, or have my neck adjusted by a chiropractor, I would get tingling sensations and pains shooting through my shoulders, down my arms, darting out my fingers, and sometimes down the right side of my core. This is the symptom that prompted everyone to want an MRI.
Also during the time since giving birth, it was evident not only to me, but also to Kevin that I was no longer myself. I was often tired, fatigued, rarely had energy, sometimes I felt depressed because I had no energy or motivation to get up and do much of anything. I ran on adrenaline or nothing at all. Other times I was anxious for no reason. I know part of it was going from a full-time job I was passionate about to staying home, but I was passionate about that too and I couldn't imagine it being the sole reason for how I was feeling.
When I listed all of my symptoms to my new doctor at the end of July, not only the head pains, shooting tingles down my arms, but the fatigue, lack of motivation, anxiety, etc., we decided on blood work and a cervical MRI (Aug. 2). The blood work all came back normal, which was disappointing to me because I really expected that to be a factor, but of course the MRI did not come back normal. My doctor called me herself the day after the scan to give me the results. She never said Chiari, just that I had a malformation at the base of my brain, that it was brain tissue, not any kind of growth, and that she wanted a brain MRI to make sure nothing else was going on. She also said she would be sending me to a neuro-specialist, which ended up being a neurosurgeon. My brain MRI (Aug. 9) came back normal, a relief of course. I immediately began my own research (mostly Internet) and the only malformation I could find that occurred at the base of the brain is Chiari. Reading the information was like reading a journal of symptoms I had been keeping. They were all there, many I hadn't even imagined would be connected.
So that is how we got to where we are...I told you it was going to be long :( But if you wanted to know, now you do! Next time I'll cover a little bit about my experiences with neurosurgeons thus far...XO
No comments:
Post a Comment