Patient Comments: Angiomyolipoma - Experience

Question:

Please share your experience with angiomyolipomas. Submit Your Comment

Comment from: Dolfin , 55-64 Female (Patient) Published: November 15

My angiomyolipoma only had the smooth muscle component. Showed up as highly suspicious RBC. Due to its position the kidney is now gone.

Comment from: Festivus, 65-74 Male (Patient) Published: January 24

I was diagnosed with angiomyolipoma a year and a half ago when I had a CT scan for diverticulitis. From what I've read I'm fortunate as the growth in my right kidney is just over 11 mm. I am seeing a renal doctor in two weeks. I have had two ultrasounds to check on progress. Thankfully the internet provides ample data on conditions. I have a condition known as multiple familial lipoma which are fatty lumps just beneath the skin related to a chromosomal genetic inheritance (my brother has them too).

Comment from: MomtoMc, 13-18 Female (Caregiver) Published: November 28

My daughter was diagnosed with angiomyolipoma in the upper left quadrant of her kidney. The doctor doesn't seem to be too concerned. However, the part of her body over her left kidney swells regularly, she gets nauseous, vomits, has migraines and back pains. I wonder how to get a general physician to take it seriously.

Comment from: Jwc, 55-64 Female (Patient) Published: April 30

I have been diagnosed with angiomyolipoma on my kidney. I feel for you! I wonder if you have looked into plant based diet. I don't think it would hurt although I've seen nothing to indicate that this is a cure. I am currently eating no meat or dairy. I will keep you informed if it does help. I did read that a fatty diet may cause angiomyolipoma.

Comment from: MELSYC1, 45-54 Female (Patient) Published: February 20

In 2012 I was scanned and they found an angiomyolipoma of 5 cm. Nothing was done and in 2015 I went to the general physician (GP) and Accident and Emergency as I was getting severe pain in my right side. It took until 2016 to get another scan and I was told it had grown to 10 cm. I was booked for an embolization and it was not until then did they discover there were two angiomyolipomas, both over 10 cm, and infiltrating the right kidney so I lost my right kidney. January 2018 I had another scan for something else where they found four lesions on the left kidney, also angiomyolipomas. My problem is I cannot get a straight answer regarding prognosis or treatment as I only have the one kidney. To say I am worried is an understatement. No wonder people complain about the NHS. I work for them and am lucky I know what paths to go down but it is frightening when you phone your GP and you get told no further action is required. Had I not got a doctor at work to look at my scan I would be none the wiser; it is scary.

Comment from: Crc, 35-44 Female (Patient) Published: May 14

I am diagnosed with angiomyolipoma in my kidneys. I would like some information about what food I should eat.

Comment from: Barb, 75 or over Male (Patient) Published: February 26

I was just diagnosed with a 5 x 5 x 6 mm possible angiomyolipoma via ultrasound. I'm scheduled for an MRI and I don't want contrast as many have suffered medical issues because of it. I wonder if anyone has had a non-contrast MRI for this.

Comment from: Mesharae, 45-54 Female (Caregiver) Published: November 09

It is scary to have something told to you and then the doctor blowing it off like it's no big deal. If you have angiomyolipoma make the doctor do more testing. I have lots of questions; if it floats around or attached to the wall of the kidney, if it can block and stop me from being able to urinate. Are there blood vessels and how do they know for sure it's not cancer! Make the doctor do the test to clear all the above and if it has to be shrunk by radiation, then have it removed. God did not put it there.

Comment from: Caz, 35-44 Female (Patient) Published: July 10

I've read a lot here about people being diagnosed with angiomyolipoma, I'm just wondering how a doctor can diagnose you without a biopsy. I am only concerned because I've had an ultrasound and I got diagnosed with angiomyolipoma. I went for a scan on my liver and doctor found an angiomyolipoma on my right kidney. The doctor said I have a benign tumor. They told me to go back in 5 months and I am so worried.

Comment from: Ms Brown, 55-64 Female (Patient) Published: May 16

I have an angiomyolipoma too. I need to have it checked. I have pressure in my back. I most likely will have my kidney removed.

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