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I was diagnosed with an Angiomyolipoma on the lower pole of my left kidney in 2009 and it is monitored for growth until it reaches 4 cm when some treatment should be offered.

Then, in 2014 at the routine ultrasound I was told that I now have another Angiomyolipoma on my right kidney, although only about 0.5 cm at present.

I am wondering if there have been any  advances in the way these things are treated, other than embolisation.

Can anyone  advise me please.

0 likes, 11 replies

11 Replies

  • Posted

    Don't think so Janet sad

    I'm scheduled for a partial nephews tony in 2 weeks as I have a 6cm AML on the upper pile of my left kidney. Had no idea anything was wrong, was picked up by ultrasound when checking for gallstones!

    My surgeon is going to use a DaVinci robotic technique for the surgery so should be quicker recovery as its keyhole surgery. Apparently my kidney function should return to normal after I've recovered and it's unlikely the tumour will reoccur.

    Embolisation wasn't recommended for me as I'm fit and healthy and 33 years old. This is a better choice for an older person or for someone who could have difficulties with a general anaesthetic. The reason being is that they cut the blood supply to the tumour and the dead tissue could then become infected. If that happened you could lose the whole kidney.

    Hope this is of some help to you!

    • Posted

      Lovely to hear from you.   I do hope everything goes well for you when you undergo the partial nephrectomy.  Which hospital do you attend?

      My angiomyolipomas were also detected by ultrasound and confirmed with a CT scan.   They do become more unpredictable once they reach 4cms apparently and can bleed spontaneously.

      Please do keep in touch and let me know how you are and I send you my best wishes for a speedy recovery. 


    • Posted

      Well done to you for figuring out what a nephews tony was, stupid auto correct!!

      I will be having the surgery at Southmead hospital in Bristol, they have a specialist urology centre there so I'm lucky to live nearby. My AML is already bleeding although thankfully only little amounts.

      Thank you for your get well wishes, will keep you updated once it's all behind me!

  • Posted

    Hi I was diagnosed last October with the same mine was 6cm unfortunately I found out when I hemorrhaged. After my 6 day hospital stay I decided to go to mayo clinic in Az. In November they did an embolization. I must say very painful the first 24hrs after procedure but within a week began to feel much better. I went for my first follow-up in Feb. It is now 4.5cm still at risk of hemorrhaging but it's progress. I am scheduled for my next follow up in 6 months if it has not shrunk under 3cm the dr wants to do a partial nephrectomy. My kidney still functions at 100% which is great due to the dye they use for ct scans and the embolization is not good. I'm 45 and only have 1 kidney. I still feel discomfort but it's tolerable. I do have my pcp run labs and ultrasound in between my visits to mayo just for additional monitoring. Hope everything works out for you


    • Posted

      Hi wondering how was your 6 months follow up went...I'm scheduled for embolization in couple of weeks since partial nepherectomy wasn't possible as my tumour is very close to blood vassals so they want to try the embolization before removing the whole kidney. Did your tumour shrink after? How long was your recovery time after embolization and how long did you need to take time off from work?

      Thanks in advance for your reply and I would really appreciate that.

    • Posted

      Hi Carrie,

      I saw your post about the embolization 4 years ago and was wondering how are you doing after this procedure. My angiomyolipoma is 2.6 cm, no symptoms, but my Dr thinks to do embolization may be better.



  • Posted

    Hi Janet,

    Just a quick update for you. I'm well on the way to recovery now after the partial nephrectomy, as well as an embolisation which wasn't in the original plan!

    The partial nephrectomy itself has been fairly easy, not too much pain and healing nicely. Unfortunately the day after surgery I was still passing a lot of blood so went for another CT scan which showed I had an arterial bleed. Quick pop down to the radiologists who performed the embolisation under local anaesthetic and all is now well.

    I was in hospital for 4days total and the worst part is horrible shoulder pain from the gas used to inflate your tummy during the operation!

  • Posted

    hello Janet,

    I have an Angiomyolipoma in my right kidney (2.4 cm) and I hope to know the best way to treat it beside embolization.

    Hope you or someone else knows it.


  • Posted

    Hi Janet. This is my first attempt to reach out to others dealing with renal angiomyolipoma's. I have already undergone an embolization last November when it was 7.4cm, but scan shows it is still over 5cm after 6 months. I wouldn't care much about it other than monitoring the size, but I am experiencing a great deal of pain on left side and have been for the duration. My docs here in AK always seem puzzled when I say I have pain, like they don't understand why. Is pain experienced by others? I was hoping maybe you would have some suggestions or ideas that I have not thought of yet. I appreciate your time and thoughts.

    Best regards to you and hope you are in good health.

  • Posted

    Hi Ak66 & Everyone Else.

    I was diagnosed with what they suspect is a 5mm ANGIOMYOLIPOMA in my right kidney 10 months ago. During a routine ultrasound this week they discovered it has tripled in size increasing to 1.5cm in less than a year. They have requested an urgent CT scan to get better images and ensure it is that and not cancer - regardless they are concerned.

    My question is - where do people experience back pain if they have it from this? I have had back pain on my right side in the middle (between neck and tailbone) of my back just to the right of my spine for the past 4 years that has become worse as time goes on. I wonder if it is my kidney as no amount of chiropractor, physiotherapist, massage, opiates or cannabis can make it go away. It's always there as this dull pain but also feels like stabbing pain. It seems to be right where my kidney would be based on pictures I have viewed online. This has been destroying my life as my quality of life is dramatically reduced, any insights would be appreciated.

    I've been trying to tell my doctor something isn't right for 4 years and she continually dismisses me. I'm 30y/o male - shouldn't be in so much pain and just want to know what i should expect from this tumour/what they might do and if anyone else has had pain in the same area.

    Thanks so much!

    • Posted

      bro i am also diagnosed with 0.5 cm and have similar pain from last one year. what’s the update from your end

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