So since my last post was many months ago, I want to bring you all up to speed. That cineMRI that I had done was "inconclusive" and the NS told me he couldn't tell me one way or another if the Chiari was causing any problems but he did not believe so because the "size was minimal." Now settle down fellow Chiarians, I know this frustrates us all and when we here the size mentioned it makes us nauseous. But the good news here is that he made a referral for me to see the neurologist that has completely turned things around for me. Dr. C, my new neuro, spent two hours examining me and asking me every question imaginable. I was so relieved to be getting the attention I felt my suffering deserved. Whether or not he came to any conclusions was irrelevant to me at the time. Just having an informed and supportive ear was enough. Luckily, he did come across some things in his examination. Within the first 15 minutes he had thoroughly examined all of the muscles in my back, shoulders, and those in the neck that support the skull. He said after the first few seconds of touching them that he could already see that my body had been enduring a great deal of pain and had been storing it in crucial muscles. He explained that, what I thought were knots in my back, shoulders, and neck, were actually large nodules of scar tissue that have formed throughout my muscle fibers. This happened because years of prolonged and untreated pain caused my upper body's muscles to be constantly activated and the fibers to rip repeatedly. The tearing was never given the time to heal, so scar tissue formed between the muscle fibers. When the muscles constantly try to repair without any rest, they become inflamed as they try to heal around the scar tissue. This constant over activation of muscles causes high levels of lactic acid. While the direct link between lactic acid and muscle soreness is being questioned, there is no question that a constant overproduction of lactic acid inevitably causes nerve pain and sensations. This explains some of the pain and various electric burning sensations that I've had in my upper body for years. But this begs the question... what caused the initial pain? For now, that question is still unanswered but the muscle relaxers Dr. C prescribed has absolutely taken a huge edge off of the chronic pain. Even this relief has changed my life. I can now sit up at my computer!! YAY!! I am also going to school again and doing well. Those hard desks no longer look like torture chambers to me and, while still unemployed, I am thrilled to be out of bed and living some kind of life again! Dr.C is still investigating, he believes my pain is real, and is determined to work with me to help me get my life back! I am so thankful! While the headaches are still vicious, vertigo is still a familiar friend, and my head is still pretty darn foggy, the relief of a lot of the pain in my upper body is something I feel truly blessed to finally have. It has been such a long time since I have felt comfortable sitting, standing, or even lying down in any one position for more than 20 minutes. To just be able to sit up and type and game at my computer, sit through a 3 1/2 hour college class tear-free, and to drive my car locally without the constant burning in my shoulders, neck, and arms are gifts that I will never take for granted. I just cannot express how much it has changed my life and how much hope it has given me that I won't always have to live like this.
Hang in there guys! I've gotten a taste of the amazing results that can come from persevering and never losing faith; never losing faith in people, never losing faith in medicine, but most importantly, never losing faith in yourself!