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  • Anonymous
      Post count: 93172

      I know there is a big conference in March where my Surgeon is going to speak about how early treatments of radiation to the eyes stops the progression of the eye disease by throwing off the antibodies attacking the muscles. She and the radiologist are both gathering data and doing research on their own. The problem is that informaton between doctors is not getting around.The radiologists are not talking to the Ophthals, who are not talking to the endos, who often don’t have the foggest idea how to deal with Graves eyes.My surgeon is an Orbital specialist.she is in the same building as my “first opinion” Ophthal.He has no idea about the success of early radiation treatments.He has never discussed his Graves patients with her. Nor she with him. If I had stayed with him, my eyes would be a bulging,double-visioned mess. That’s why the BB is so important. We can learn what other Docs are doing in other parts of the country. The information is not getting around to all the Docs involved. With Graves patients it usually starts with the Endo, who then sends his eye patients to a Ophthalmologist, who almost never sends his patients to specialists in Orbital diseases.My radiologist has complained many times about the problem of gettng the information “out there”.*** I could go on and on,but this is long enough. I will find out where this conference is being held. I wish all a good night….Gwen

      Anonymous
        Post count: 93172

        Hi Gwen, I guess I am one of the lucky ones. I go to a Thyroid Orbitopathy Clinic, Department of Ophthalmology through our University of British Columbia’s Health Sciences Centre. My Ophthalmologist, Endocrinologist and Radiation Oncologist all work together. Copies of all reports go to each of them and my GP. I know when I see any of my doctors they each have copies of all my reports and are right up to date. I have been in my Ophthalmologists office and he has called my Endo from across the hall to come in to discuss a treatment. I also know I am in excellent hands and don’t have to worry about the treatment side of my disease. I wish it could be like this for everybody.

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