Has anyone had renal cyst decortication on the NHS?

I have chronic pain due to ADPKD. One of my cysts is 16cm long. My local healthcare team have told me there isn't a surgical option but researching on the internet there seem to be a few options. I've read articles which show renal cyst decortication can significantly improve pain in patients with ADPKD. Sclerosing cysts and ablation have also been tried but I just wondered if anyone here has tried them, were they successful and where was treatment received. I'm only 33 and don't want to live with this pain forever!

2 Replies

  • Hi piclemum, It is my experience that every consultant has a slightly different view on most subjects, when I discussed these issues with a consultant, his view was that these procedures are not worth doing, his first concern was the risk of infection, next he says that the cyst will just grow back. Another doctor however might think the temporary relief is worth it.

    My mother has a cyst, in another part of her body which she has drained, it always refills over time bigger than it was, and every attempt to drain it become harder.

  • I am very annoyed with the NHS. The information they have given me is outdated and wrong. They have done nothing to help me out of this disease - and my NHS is suppose to be the best in the country...

    Surgery has a 98% success rate for this condition. Except the surgery done in the UK for cysts seem to be from the dark ages and is done wrong, and does nothing to resolve the problems. I am saving money to go abroad for surgery.

    I've been really, really sick from this condition and have now managed to find a method to reduce the worse effects from it and go back to functioning somewhat well:

    I highly recommend you being very careful with high acidity foods. You can find a lot of information on the internet on high acid versus alkaline food. Acidity is an absolute enemy to those of us with this condition. When things get really bad (I should do it daily before sleep actually), I drink a glass of water with 2 spoons of sodium bicarbonate. It brings down acidity levels real fast and has been a life savior for me with both kidney and liver cysts.

    I've tried medicines but I now stay away from them. All they do is conceal the problems and symptoms, making it worse, and add further burdens on the kidneys and liver. You will have a better affect with dietary changes and sodium bicarbonate.

    A low acid diet (vegan is necessary) is a must or it gets very uncomfortable, painful, the swelling gets out of control and the bp gets really high. Low acid (alkaline) diets will help to keep the swelling down and reduce the production of more cysts.

    I'd also recommend you to stay away from consuming too many nuts or protein. I noticed that protein does really bad on me. I went on a nut-binge before Christmas, and believe me, my crap turned white (!) in color and I really thought it would be the last day for me. I past out several times and felt like I was dying. I was sooo sick for two weeks until I observed a super strict and mild diet! My kidney's and liver just couldn't process all the protein from the nuts.

    I highly recommend Dr Robert Young's recommendations on low acid diets. There are several good videos on this you can view on YouTube, but he's the best! Researcher on the subject for many years.

    If you change your dietary habits things will become much easier and you will win some time before you (may) decide on surgery.

    I hope this information is of help for you. :)

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