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A little of my experience so far

Hi everyone, I wanted to share my story. I haven't read anyone's symptoms which are my chief complaints. I'm new here and decided to share some of my story. I've been in chronic pain for 14 years. It started 30 years ago but I figured it was just the aches and pains of life at 20. I've been in many accidents broke my left collar bone twice. The first time I broke it was when I was 5 years old. Not sure what exactly happened except that it was a parachute trampoline when they thrusted me up I landed on the ground. Last time I broke it when I was 20 when it healed my shoulder and neck were in pain. The doctor said everything healed just fine. The pain eventually improved although never quite leaving all together. 7 years later I woke up one morning and could barely move my neck or shoulder. Eventually I gained movement. Went to another orthopedic surgeon to make sure it did heal correctly and they said it did. They prescribed me PT which made it worse. I tried a chiro which did nothing. I started getting migraines when I started to excersise on a regular basis. Careful not to do the things I knew would aggravate my shoulder. When I upped my weight lifting the migraines increased along with light sensitivity and sound sensitivite. Within 1 and a half years I was getting a migraine everyday plus my energy was changing. I'd work out and go home and sleep for a couple hours. I'd go hiking and be wiped out with in an hour. I kept feeling like I was getting the flu but it never came. We moved to a valley, a farming discusting smelling valley. With in a couple of weeks I was in agony. My light sensitivity, sound sensitivity was so severe that I had to put dark blankets on all the windows to make it as dark as possible. Any light was very painful. My migraines were coming 6 to 8 times a day. Any kind of light or sound was very painful. Plus, I was so sick to my stomach all I could do was eat tiny portions of ice cream and drink water. After 2 years I tested positive with Chronic Lyme disease. Before that I had MRI's, 3 neurologists, x amount of docotors, treated horribly by doctors and some family members. When I thought I I couldn't be in more pain a denist gave me a bite gaurd that he invented. Within the first nite my pain became worse. Head pain, facial pain, jaw pain, body pain. Light acutally stung my face. I went to a TMJ specialist who told me my left jaw joint had hardly any tissue in between. The muscles in my face were not able to hold my jaw in place and super, super sensitive. I wear a jaw devices, one during the day and one at night. 14 years later, after all the doctors, all the tests, I was at the end of trying to keep up anymore. I went to a NUCCA doc with a complete attitude in tow. He did x-rays and told me that I had some bone spurs, degenerative discs and that if my C-1 and C-2 was .5 a degree more he would have referred me to a neck surgeon. How was that missed all this time? So, I'm trying NUCCA. For years It hasn't been easy, it's very hard. I'm not able to chew very much, stand light, or sound for very long. My whole body hurts. I figure I'll give NUCCA a try for about a year. Many people on this site are very aware of their spine and what is going on. I'm just learning about it. Wish I would have known this was the problem 30 years ago, or at least a portion of my issues. Thanks for reading :).


  • Hi Kiki
    Welcome to SH. I am so sorry for what you are going through. I can only imagine how difficult this has been and is for you.
    Can I ask what NUCCA is? I have never heard of it.
  • Hello Kiki,

    I, too, am very sorry for everything you are enduring. I hope you continue to educate yourself on the spine and will be able to make life far more manageable! :-)

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  • Kiki48KKiki48 Posts: 196
    edited 05/07/2013 - 8:29 AM
    Thanks Sandi and Charlie. It's not that easy to share your story. After all this time I still think "this can't be happening". So NUCCA is a chiro technique. Now I really have not had much respect for chiro's in the past but like I said I was at the end of my rope. I was at a holistic fair when I met the chiro I'm going to now. He does no cracking of the neck. It's a light adjustment and very gentle. Other wise there is no way in H@! I would have tried it. My C-1 and C-2 are tilted and twisted in opposite directions. He said my C-2 is the worst which is rare. (that's me "rare"). He said the C-2 is the more symptomatic than the C1. After 4 months he started adjusting my C2. He couldn't get to it before. After the first c2 adjustment I felt a significant amount of improvement for about a week. I than got broncitis and the coughing screwed me all up. Increased pain in the neck, jaw, facial muscles, head, shoulders, etc. After about 3 weeks the flu is going away. He's also started to adjust my back, something about my t-4 and my sacrum. My posture hasn't been this good in years. But the pain pretty much sucks. I've been in treatment for 5 months and have only been able to hold my c-1 and c2 adjustment for a week. I feel muscles that I havent felt in years and it's not a good feeling. It was sharp pains for a while now its deep throbbing pains through out my body. My light and sound sensitivity has worsened again and chewing is become more of an issue. They call it retracing. I read on here that surgery takes a very long time to recover so I figure I'll wait it out with the NUCCA. Since for me its taking a long time. I don't have as much hope as I did with this treatment. My Chiro is my cheerleader and just asks me constantly to hang in there with him lol, Easy for him to say :). I have talked to several of his patients and it's quite remarkable their progress. Mine is not as fast as their than again I have other issues like the Lyme disease that affects muscles and nerves along with other things. I read on here so many of you folks have children. I have no idea how you do it. I never had kids and am so glad I didn't it would break my heart not to be able to do the things I want to do with them. Heck, it breaks my heart not to be able to do things with my nephews. They always come out of their rooms (22, 24) when I come around and sit with me. It makes me feel good and almost makes waking up each day worth it to feel the love that comes from them, my sister and bro-in-law. My sister and bro-in-law joke with me about being a vampire. I mostly come alive at dusk before the need of house lights. I'm so thank full for them. With everything they have going on in their active life they are very supportive of me. I didn't have that for the first 10 years. I lived far away from them and now I can't imagine my life with out them. I'm feeling a bit sentimental today. It's spring, a beautiful day outside and I'm waiting patiently for dusk so I can go out and sit by the lake for a bit. KiKi
  • I wanted to add that 3 months before I started NUCCA I slipped in the shower. Hurt my middle back and knocked my jaw even more out of whack. I knew I'd have to have a full re evaluation with the TMJ specialist which would have cost at least 5 thousand dollars again. After one month of my c1 being adjusted my middle back was better (still had my other back problems that I've had for 30 years) my jaw felt back to where it was before I fell. I figure it took a month for injuries that only happened 3 months prior. So for my other injuries that were 30 plus years ago. It's going to take awhile. Sometimes I wonder if surgery would be easier but I know my body doesn't heal as fast as it used to and I end up having complications that don't ever seem worth it. So many decisions to make that can affect your life forever........
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