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  • goodd0327
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    Hello, I am a 40 year old female who has suffered from neck pain that has progressively worsened over the past 15 years. I have also suffered from various types of headaches since I was about 14 years old including migraines with auras, tension headaches, and hemiplegic migraines. I have been treated for these with many different types of treatments. About 15 years ago I began to have widespread body soreness and pain. I constantly had what I felt was a tension headache because it seemed to begin in my neck area, but I also had some soreness and pain in my large joints, and continuously felt as if I had flu like symptoms, or body aches. I was first diagnosed with fibromyalgia, but then was sent to a rheumatologist where she diagnosed me with undifferentiated spondyloarthropathy,or ankylosing spondylitis, I never really understood clearly which one. A short time prior to this I had neck X-Rays done where I was told I had a few cervical vertebrae, more specifically C2 and C3. The clinicians or specialist I was seeing at the time kept insisting I had fusion surgery and continuously ask me the date of my surgery. I kept insisting I would have remembered neck surgery and I had not had any surgery performed on my neck at any time. I tried to gather past Imaging from when I was a teenager to prove that I had never been told that I had any type of fusion of my cervical vertebrae and that I had had multiple Imaging performed because of my headaches between x-rays, CT scans, and MRIs, and was not told one time that I had fused cervical vertebrae. When I was about 15, I had an MRI performed after passing out at school while having a headache, they informed us at the time they saw a tumor on my spine around C2 and C3. I was brought in one week later for a CT scan where I was told that it was just a glitch in the MRI and there was no tumor there. I continue to have headaches almost daily, migraines at least 15 times a month. I recently had to switch rheumatologist due to insurance where I was then told he felt I was misdiagnosed and that I did not have any type of autoimmune or Rheumatic disease. He performed x-rays again of my cervical vertebrae and the radiologist reported A congenital Fusion like with Klippel Feil syndrome. After performing my own research extensively, I do not exhibit any other physical sign or feature of this syndrome including the short neck or low hairline, and am wondering or curious why the cervical fusion did not present or show up in any of the multiple Imaging I had throughout my young adulthood. Most recently in the past 6 months to a year, my neck pain and headaches related to my neck pain have increased in frequency and intensity. They have gotten to the point where I can’t move for extended periods of time sometimes days, the throbbing pain surrounds my whole head, my neck, both shoulders down into my bicep area, and now it has been progressively extending further down my back almost to my lower back. When I have these headache or pain episodes they can last up to three or four days, many times preventing me from falling asleep, and sometimes when I am able to fall asleep I wake up with the pain worse and more intense especially in my head area. The throbbing that I experience is more in my head area and somewhat in my neck but the burning sensation that I have is all over my head and face in my neck, down my shoulders and arms, and down my back. And when I say it feels like it’s on fire, that’s an understatement, and if I try to stretch the muscles at all during this burning sensation it makes it worse. It has severely interfered with my everyday functionality, and I cannot get any of my providers or Physicians that I have been seeing to take me serious. The only provider that has been willing to treat my everyday pain, unfortunately is in pain management, and has been doing so through monitored opioid pain medication. I follow his prescribed regimen very carefully, I meet with him monthly, and he is diligent on not keeping the dosage and type the same for an extended period of time as to not allow any type of Tolerance build up to avoid having my body become addicted. It has been the only relief that I have had, and although I would prefer an alternative, i am a single mother of two, one of which is disabled, so I don’t have the luxury of being down with severe pain for a long period of time, so pain management has been my own way relief. None of the clinicians were providers that I’ve seen have much experience with klippel feil syndrome, and during my own research I found a small amount of information about single level spontaneous cervical vertebral Fusion, but hardly any information on the symptoms. My question after this long explanation that I apologize for, because I don’t have the normal features of someone with klippel feil syndrome, and because it was never reported to me that I had any cervical vertebral Fusion in any of the many Imaging test I had throughout my childhood and young adulthood, could this Fusion have been something that developed over time, and if so could that have just progressively caused my neck pain to get worse? Is there a specific diagnosis for something like that? Treatment? Prognosis? What can I do to get the doctors to help me? Just to add also, I have had for motor vehicle accidents in my lifetime, each one being where I was rear-ended, three of those have been within the past 7 years but the cervical fusion was first found prior to any of those three, but about 15 to 20 years after the first accident when I was a teenager. I’m just looking for some guidance or at least reassurance that I’m not crazy. Thank you for your time I apologize for the lengthy message and all the information

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