Patient Comments: Angiomyolipoma - Treatment

Question:

What treatment(s) did you receive for an angiomyolipoma? Submit Your Comment

Comment from: Lipomas , 45-54 Female (Patient) Published: August 06

I was in an auto accident and my whole body has been in pain. I have been diagnosed with fibromyalgia also. A knot appeared on my thigh, painful one. Surgeon did a biopsy and it came back as angiolipoma. Since then I have over 20 on my thighs and pain where they are. I also have lipoma in my groin, so they say; with no biopsy. I have other areas that hurt and no one is concerned! It's not fun nor funny. I ask to have an MRI or something, and note came back from doctor to get a hobby! When I figure it out I will post.

Comment from: Diane , 65-74 Female (Patient) Published: July 02

I had a left partial nephrectomy and tumor removal of a 9 cm angiomyolipoma a few weeks ago. This was a 4 hour surgery during which the tumor ruptured, and I lost 800 ml of blood. My spleen was slightly injured, and it almost had to be removed. I was in the hospital for a week, had 1 unit of blood, and am recovering slowly at home. I will have follow up CT scan in 6 months. I feel these are serious, potentially life-threatening tumors. I feel I was lucky to have a good urologist.

Comment from: gumby, 65-74 Male (Patient) Published: May 02

I had the embolization with an interventional radiologist for the angiomyolipoma on the left kidney in early December. He saved my life because it got so big that it bled and formed a very large hematoma which they have tried to drain 2 times. In the last scan the tumor has hardly shrunk and the pain is still bad in the flank and abdomen area. Now they are saying removing the tumor and hematoma is the only way out of this, with a major surgery. We are wondering why the embolization did not destroy the tumor.

Comment from: Christine, 35-44 Female (Patient) Published: April 27

I woke up with back pain one morning and went to the emergency room where I had a CAT scan and they found that it was because of burst vessels from bleeding in my right kidney from an angiomyolipoma. It took another 6 months of appointments before I underwent an embolization. It had grown to 6 cm and the embolization didn’t work so a few months after that I underwent laparoscopic surgery and they removed it. That was two years ago and I just went for a sonogram and they found more small ones one both kidneys. The surgery wasn’t a big deal but I wonder if over time they will be more of a problem for me.

Comment from: Lisa, 35-44 Female (Patient) Published: July 30

I have been told I have angiomyolipoma, and that it is 8 cm. There was an ultrasound done at the emergency room. Then my urogynecologist looked at it, and diagnosed it for me. My primary care doctor has not sent my referral through to urology after 4 attempts at trying to get him to. It's been over 5 months now, and I just want treatment because I do have pain, and I have had chronic urinary tract infections for over 5 years now. I went in for one of my chronic UTIs when I had the ultrasound of my kidneys done. Nobody will help.

Comment from: Kylie , 45-54 Female (Patient) Published: May 22

I recently had an ultrasound for gallstones and it was discovered I had a 6 mm size angiomyolipoma on my left kidney. I had a follow up MRI to confirm and now having 6 month ultrasound monitoring. I'm wondering if I should have a CT scan for a more detailed result.

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