Hi sorry to hear about your alm can I ask what anti acids this was please 

Hi, it was Gaviscon, but note I went from taking none to 6-8 a day every day for a month!! 

An update on my situation: a few months ago now I had a follow-up appointment with consultant to discuss the situation. He showed me the initial scan which showed what he called 'a significant bleed'. It was his opinion that the amount of scar tissue as a result of the rupture would likely a) prevent further growth b) prevent a further rupture and c) hamper embolization if this were at all a possibility.  The radiographer had said the latter was not possible but a further consultation would be sought from a specialist radiographer. Received this in due course - they suggested embolization would in fact be possible, I declined, my consultant said it was by no means certain that once in there it could be achieved! I would also need another angio scan prior to further discussion before the procedure.  I asked what the scenario would be if I started getting pain I couldn't live with, could the alm be removed as previously suggested - his opinion was that the scar tissue would make that very unlikely and as such I would probably lose the kidney.

He seemed to think my decision on leaving it alone was the right call, while I was having no issues at all.

I changed my diet radically to live medicine free with silent reflux and to prevent or heal the damage to my throat which I have achieved so far and I now dare to take the odd Gaviscon (as in 1 tablet twice a month, if that). It was a very scary episode and this site and everyone sharing has helped me heal and make necessary decisions.

Thank you all

Stay well everyone.....

I will have another scan next month

I have been diagnosed with this.i still haven't seen a urologist yet but have had a ct scan and and ultrasound that showed a few shadows. 

This is a reply to an old post but I will reply incase anyone is looking for answers.  I had a ruptured AML on my right kidney, 5.5 x 4.5 x 2.6 cm.  It was a complete shock both to me and my body.  The pain excruciating, I'm no weakling, I lost use of my right leg couldn't stand and was stretchered off to the ambulance.  It came out of no where. I spent 5 days in hospital due to internal bleeding and course upon course of antibiotics.  The reason I'm being so honest is not to scare you, I'm here, I survived but to advise you that you MUST take any flank, back pain seriously.   I was meant to have a 4 month follow up, CT scan. It never happened.  It is now one year and 2 months since that Op. After failure of my GP to follow up the op and failure to provide an appointment to discuss it I recently sought a private Dr and they requested my GP arrange me another scan. It came back abnormal, I have another AML, it's 4cm, the consultant is booking me in for its removal. I am with constant back pain it feels like a throbbing. I have been assured that the NHS won't forget about me this time. If you don't feel right, go seek advise and don't be fobbed off.  Push for follow ups!!!   I was told I was lucky, don't let that be you. 

Hi Lisagg,

A very warm welcome to our forum.

It sounds as if you have really been through the wars. I am so sorry to hear this. Sometimes we really have to push to get things done. I know that we shouldn't have to, but it is just as well that you pursued this. I know that another AML is not what you want, but you are as well to have it removed. Did your consultant give you any idea of how long you may have to wait? I hope that it doesn't take too long this time and that all goes well.

Please keep in touch and let us know how you get on. We are always here for you.

You are quite right. We all know our own bodies and, if something doesn't feel right, then we need to get it checked out.

Kind regards,

Jolamine xx

Hi all, 

I was wonering if you can give me some type of reassurance with this.. 

I am a 25 year old female. I had my right kidney removed when I was 7 years old due to it never growing.Just over a month agoI had an ultrasound on my left kidney this was just a routine thing and wile I was there the guy who did the scan said everything looked okay so I didn't worry. I then called the doctor  3 weeks later just to double check everything was okay and the doctor said they found a angiomyolipoma which was found totally by accident and that  I shouldn't worry. I asked a couple of questions but didn't ask everything due to being in a bit of shock. I then called her back a few days later to discuss further and she has sent the scan off to the urologist to see what the next step is. I have still currently not heard anything back. I'm now having panic attack after panic attack thinking i'm going to die becaue I stupidly read up on this and about hemoraging etc. And I got incredibly upset because i'm even more conerned because I only have one kidney. And it sounds silly but I was getting upset because I've never had kids and I was scared i'm going to die before I can even do that. 

I'm just in a massive state of panic right now and I just don't know what to do with myself and i'm just so upset. So any reaasurance or stories right now would be great. I just think my biggest concern is i'm going to get really ill and die basically. Sorry to put it so bluntly. I just want to add - I'm having no kind of pain or symptoms at all so I suppose that's a positive?

Part of me thinks maybe I should get private help? 

Thank you, 

Emily x

Hi am sorry to hear your news , not surprised it was a shock! I can't help much but I was also diagnosed 3 year  ago with same thing, found when having ultrasound for constant uti infections. I was told they are often very slow growing and not to worry about it, they said I would need a re scan every Couple of years. Will be reminding Dr of that this month. Discuss your worries with the doctor and get some answers. I wouldn't worry too much about it though. Good luck with everything x

Hi there! 

Thank you so much for replying I really appreciate it :) This has actually reassured my quite a bit! I was a bit silly and googled and of course, it's coming up nothing but the worst. So to know it is actually slow growing is good news for sure. And it's also reassuring that you have your scans every 2 years so yours doesn't seem concering at all. 

Thank you again, I really appreciate it x 

Hi Emilykate,

A very warm welcome to our forum.

I am so sorry to hear about your recent discovery and the obvious worry that this is causing you, especially when you only have the one kidney.

Firstly, I must say that I am not a doctor and what I am going to say comes from what i have read on this site over the past 12 years. This information comes from people's first hand experience and not from other possibly dubious sources. There are a number of people on this site who have abgiomyolipoma and all seem to cope with regular check ups.

Angiomyolipoma is a big name for a benign tumour consisting of vascular cells ("angio-") immature smooth muscle cells ("myo-") fat cells ("lipoma"). Speak to your doctor to see if there is anything you can do to help improve these functions. For instance, you could try to watch how much fat you eat by eating foods that are not processed, lean meats and fish, low-fat dairy products, fresh fruit and vegetables, whole grains, etc. 

If you want to discuss this with someone with a medical qualification, why not phone one of the nurses on this site? They are available Monday - Friday from 9.00am - 5 .00pm. The telephone number is 0808 800 4040.

I hope that this is of some help in  alleviating your stress levels.

Kind regards,

Jolamine xx