Help! I realize I have not gone through the time that most of you have, and I truly empathize and applaud you for being able to get through this for years. For me, I started having back pain in August. I attributed it to having just pulled something. But then months had gone by and it progressed and gotten worse to all points of my back and spine, feeling like I had been punch in both kidneys, vomited a few times because of the pain, etc. I saw my PCP who had an x-ray done, nothing showed up. The pain continued to intensify. Finally he sent me to an Ortho, who immediately sent me to Physical Therapy. I was highly doubting it but I went along with it. Halfway into the visit, I was explaining my symptoms, along with the pain I was also having night sweats and had lost about 15 lbs within a month (nope, don't have TB) she stopped the PT and said I need to have some diagnostic testing (Thankfully). Before I was able to go back to my Ortho, I work at a hospital, and had been standing outside the ER and collapsed and semi lost consciousness. So when I saw the Ortho, I told him he had to do some kind of imaging on me (I had a friend with similar symptoms and it turned out after months of going to ER's, one ER was bright enough to check the fact that he had a hx of testicular cancer, low and behold the cancer had returned and by this point had spread everywhere, including a tumor on his spinal cord and in his kidneys, etc. So anyways, the Ortho ordered an MRI of my thoracic region and they identified a cyst/mass in my spinal cord. Unfortunately, he was unable to treat me at that point because he is an ortho and not a neuro, the ortho had been treating me for the pain (at this point I was on oxycodone 5mg 1-2 4 times a day and . Went to see the neuro surgeon who ordered a MRI on my thoracic and cervical w/ contrast. After 4 weeks, I finally received approval. My neuro does not exactly have the best bedside manner and I wish I could actually change, but at this point it seems like it's too late. He also referred me to a pain management doctor and 3 weeks later I got the approval. This PM doctor wanted to treat the syringomyelia by doing surgery on the first initial visit. When I said that is what my neuro surgeon is doing, he told me he is a last resort doctor. So frustrating, called my insurance company, explained what happened, they said they need the REFERRING doctor to ask for a second opinion, called and spoke to him, he said fine, then 3 days later I get a call from his office saying he doesn't do that, he leaves that up to the PCP to do (apparently he can do referrals but it's below him to ask for 2nd opinions). Took this info back to my insurance group, they said well it should be him, but your PCP can call it in. I explained that I had gone weeks without medication and i'm on the verge of taking a medical leave of absence (with the place I work at and the people, that's a guarantee fire down the road) and I can't afford a medical leave. Well the insurance told me to call the PCP and ask if he can ask for a second opinion on a referral that my neuro surgeon requited... does this make sense to anyone? Being in the pain that I am in, I mean it has consumed my life, changed me as a person (i used to be happier even with all the other bad stuff going on in it at the moment) but I am no longer happy, nor can I laugh cause it hurts. I feel like I hit a brick wall with all these docs and insurance groups to the point I just want to quit and just let nature take its course. I am not sure why I am writing this post, mostly to vent I'm sure, but if anyone has any kind of info or hints/tips, i am more then welcome to hear them. I think these insurance/doctors don't realize what this feels like because they've never had it, so we're making it out to be more then it really is. It's nice to know there are other people who know what I'm going through and will listen (unfortunate the way all of us had to come together and meet though). I did speak to one pain management doctor who, before I said a word, explained that he treats the symptoms until your other doctor fixes the problem, i dont fix the problem. I expected most other ones to be like him. I really would like to see him because his health grades are A+ but he is also $400 a visit... pay for what you get I guess.
Hope to hear back from you all soon and thanks for reading my venting,
Jarrett