ANGIOMYOLIPOMA

Don't think so Janet

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!

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

Carrie

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!

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.

Thanks.

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.

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!