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  • Anonymous
    Post count: 93172

    Some of you were asking about alternative treatments to Graves. I remembered seeing an article in the NGDF newsletter about a new study, so I dug and found it in the Volume V No. 1 (1995?) issue. I¹ll recount for you:
    Orbital Radiotherapy Study Needs Patients
    The purpose of this trial at the Mayo Clinic, headed by Dr. Colum Gorman, is to determine which patients with Graves¹ ophthalmopathy will benefit most from the treatment, which manifestations are most and least responsive, and what is the time course of those responses. Evaluation and treatment are provided at no cost to study participants. We particularly welcome participation by minority groups. Limited reimbursement of travel expenses is provided.
    The study involves treating one randomly selected eye and six months later the other eye is also treated. The untreated eye is used as a control. Participants in the study will be evaluated prior to treatment at 3, 6, 9, 12, and 36 months. Treatment requires a three-week stay in Rochester, Minnesota on two occasions. Interim evaluations require two days.
    Eligible patients are those who do not have optic neuropathy and who have not previously had orbital radiation therapy, orbital decompression, and who are not pregnant or diabetic. Steroid treatment is not a barrier to entering the study but must be discontinued before the study begins.
    Further information about the study can be obtained by calling the study coordinator, Ms. Merrilee Muenkel at (507) 284-4738.

    Does anyone know about this study and/or its findings? I personally can¹t participate because of my prior surgeries, maybe it¹s choice for you.
    Debby

    Anonymous
    Post count: 93172

    Would like to know of any similiar studies in the
    Los Angeles, CA. area. I am having a hard time
    finding doctors who can give me answers or even
    hope. I am in early stages of the eye condition
    with painful swelling and double vision. Any
    information is greatly appreciated.

    Anonymous
    Post count: 93172

    Write tot the NGDF and tell Dr. Nancy Patterson what you are looking for and she can
    probably help. We keep a list of doctors and newsletters that may answer your questions.
    If you are in the early stages it is much to early to worry about orbital decompression.
    There are numerous messages regarding decompression on the BB here. Give them a read
    and write Nance or call me at 407-254-9719 and I will return your call collect.
    Regards,
    Jake George

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