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Thread: partial nephrectomy vs embolism for angiomyolipoma

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    Default partial nephrectomy vs embolism for angiomyolipoma

    I don't know what part of the forum to post this question - it's actually not GPA related but I thought that some of you might have info about these procedures.

    When looking for renal granulomas on a CT scan they found a benign angiomyolipoma (blood, muscle, fat) on my kidney (measures 5cm x 4.7cm X 7 cm) and its larger 'than allowed'. It is not GPA related. It displaces my kidney a bit and has potential for bleeding into my kidney. So they want me to see a urologist in the next 2 weeks and have further tests. It will need to either be surgically removed or have a coil put in it to cut off its blood supply (embolism is the term I think) and shrink it. But they don't want to do that while I'm so immune suppressed. Just got GPA diagnosis 8/1/16 and am on 60 mg prednisone and have had 2 ritux infusions now. So it'll be at least a few months or more I believe before this is treated. I'll know more when I see the urologist. It has not affected my kidney function thankfully and I do not have granulomas or GPA involvement in my kidneys.

    I realize I'm jumping the gun a bit, but I read that an angiomyolipoma over 4 cm in size presents a risk for bleeding which could be very sudden and very dangerous. I don't know what the doc is going to recommend regarding these two procedures for getting rid of this mass but I wondered if any of you had either procedure or knew much about risks/ outcomes.

    thanks
    Gab
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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    Wow, I have never heard of that before. Are you seeing specialists at major facility? I am wishing you all the best for a good solution to this really rare condition. Take care of yourself!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Thank you Jaha, yes I'm seeing many specialist in Boston - mostly MGH (mass genl) doctors: rheumatology, nephrology, pulmonary, allergy, urology, (wondering if am I forgetting anyone?)
    And my eye dr and ear dr are from MEEI. (Mass Eye and Ear) also in Boston.

    Mass genl treats many GPA patients. Yesterday at my infusion I met a lady who came up from Maryland to see her ANCA vasculitis MGH specialist! I'm blessed to live an hour from Boston.
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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    Gab122,I had a partial nephrectomy in 2005 via a large incision,and was in the hospital a week.No fun.It was needed because of cancer.My girlfriend tells me the surgery is done now laparoscopically,and depending on the surgeon's skill,takes about three hours at the hospital she works at.It's no fun,but I would not worry about it.Good luck.

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    Thank you Titus!

    I Didn't know if vasculitis affects the ability for an embolisation to even be performed (since they have to get to site of mass via arteries) it might not be an option? I guess I'll find out.

    Thx again!
    Gab
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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