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Returned from the Mayo Clinic

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donald89437
donald89437

I have been struggling with pain in my body since 2011. I have had doctors tell me I was vitamin d deficient and that was causing my problems. They stopped there until last year when a new endocrinologist actually diagnosed me TIO. At first, he thought it Phosphatemia but then confirmed TIO with additional tests. I believe it is called FRF23 which confirmed a tumor from what I understood. My wife and I decided to go to the Mayo Clinic after she found out they had recently done research on TIO. We met with Dr. Tebben an endocrinologist. I brought with me all the MRI's and scans we have had done since 2012. He spent a good amount of time with us and felt confident the diagnosis of TIO was correct. He then spent time researching the film and found what he thought might be the tumor. He was able to compare it to an older film and it had gotten larger. 2 cm to 4 cm. He schedules a controlled biopsy which confirmed it was a tumor which appeared to be benign. It was hidden behind the knee cap in my left leg. We then spoke with an Orthopedic Oncologist Dr. Rock who said he could operate in two days on Friday. After 6 years it was easy to say yes. The surgery went very well and he confirmed it was totally surgically removed. They ran another blood test which confirmed there were no tumors in my body.

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2 Replies

  • rocky31676
    rocky31676 donald89437

    Posted

    Did they tell you if you can take recombinant FRF23 or increase Vitamin D intake. 
    • donald89437
      donald89437 rocky31676

      Posted

      I was not told to take the FRF23 after they checked to confirm there were no tumors unless I begin symptoms again. They took me off supplements until the next meeting with the Doc on May 3rd. They want to see my bodies natural levels.
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