The forever struggle

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Hi, I am Lisa. I have has several ct scans and mri's through the years which showed terms such as perinueral cysts, and Tarlov Cysts for many years. When I would ask what they were and if they posed any problem, I would be quickly brushed off and told they were nothing. Or absolutely nothing to worry about. Then in 2008 I started having serious problems with many things and finally got labled with fibromyalgia, then a growing list of real health problems along with being called a fruit cake with the fibro. You know,the painful sacrum, painfil legs, anklea, feet, feeling wierd nueral sensations from ice water dripping all over my legs, to certain places lower in my leg and left foot feeling like someone poured gas on it and lit it on fire. Not fun while you are trying to drive might I add. I have these cysts higher up in my spine. Cevical region too. MRI notes that quite a few are sizeable. Did my doctors feel it was worth enough to mention to me? Oh, no. Not at all. But the Dr. Reviewing the MRI thought it was worthy a mention. So, I talked to my doctor about it and I get this speech about asymptomatic and blah, blah, blah.... 

 

But I do have some medical training, worked in a few hospitals and occupational health and I wasn't buying it. My gut feeling told me to check it out thinking this must be one of those things docs have no real training about and are out of their league on. I contacted the tarlov cyst institute and that is exactly what I have found out. Then I went to my primary and told her to keep an open mind and seek to educate herself more about it and to contact the nurse at the Tarlov cyst disease institute and gave her the nurse's number. She did watch the youtube vid of the 16 y/o girl that Dr. F operated on and she fully recovered. But still my doctor strongly cautioned me on getting surgery on my spinal cord warning me that one little mistake could put me in a wheel chair the rest of my life. Clearly, since this disease is real, but my doc doesn't believe, I am going to wind up in a bed shaking uncontrolably, and unable to walk and in a whole lot of pain if I don't take the chance. Haven't done it yet, may not be able to afford it anyway. The surgery at last glance was $50,000.00 Don't know how insurance works out or Medicare, since I assume this will be considered an experimental surgery, but I am still hurting alot, going through other unrelated health issues, nothing nice really, a lot of pain and barely getting through it, but doing everything I can to get through it. Dong know how much docs are gonna help or how fast to end it, so far, it hasn't been so great or so fast. Trying to be patient and as understanding as I can be. But, I am about to hit a breaking point because I am getting super miserable and there is almost nothing I can do home remedy wise that gives me much help anymore. Hanging on by a very thin thread here. That's my story. New in Florida starting over and not copong well....