Can the cysts of a PKD patient be removed by an operation

[Zhiwei]

Can the cysts of a PKD patient be removed by an operation? I saw no discussion on this.

[poppydolly]

Before they were removed I had PKD kidneys weighing over 10 kilos. I was told that the cysts could be a speared I. E. the fluid sucked out but there was a great risk of infection and they would only grow back again. After having seen photos of my kidneys once removed I could see that because of the massive number of cysts this would be impossible. If your kidneys become difficult to live with and preclude transplant due to lack of space your Team will advise removal. Good luck

[poppydolly in reply to poppydolly]

Sorry asperated -autotext 😈

[dusty51]

Hi I am waiting to have a cyst on my left kidney aspirated as after a routine scan it was found to be strangulating the tube from my kidney to my bladder blocking the flow of urine. My consultant seems confident that he can remove it successfully

[poppydolly]

Asperating  is not removing. It is suckling out the liquid inside it, that is why it returns because the cyst itself never went anywhere. Unless of course your doctor is going to cut it out of the kidney and I am not sure whether they do that because of bleeding and infection. It would not have been possible with mine because the cysts had totally covered and taken over the kidneys. Perhaps you have only got a few cysts so  far.

[dusty51 in reply to poppydolly]

Yes he is going to drain it first if that allows the urine to start draining OK he is then going to fully remove the cyst with key hole surgery. It would appear that I am lucky that my readings are still OK I am 59 and my father was 84 before he started dialysis

[Zhiwei in reply to dusty51]

Did you do it in the UK? What if it is due to genetic disorder? Will the operation still work?

[dusty51 in reply to Zhiwei]

Yes I am in the UK. On examining the nuclear scan I had my consultant is 95% sure that the cyst is causing the blockage he could not see any other problem unless the cyst is hiding it. As soon as he has drained the cyst I am going to have another scan

[PKDUK]

Yes, PKD cysts can be removed with 98% success rate without returning. But apparently not in the UK where I am being told by the NHS all the time that surgery "doesn't work" and for me to continue to suffer with excrutiating backpain and aches. Of course it works. It works where they know how to do it, which is clearly not in England.

In the US they remove PKD cysts successfully. What they do is to first drain them of all liquid, then fill them with a bit of 99% ethanol to stop the cysts from refilling. They call it Cyst aspiration sclerotherapy or ultrasound-guided cyst aspiration-ethanol injection sclerotherapy. It's a simplified, cheaper and more effective method than the older deroofing.

The older method is called laparoscopic deroofing and is more invasive and with somewhat lesser success rate. It's described as following:

"Symptomatic renal cysts can be managed with analgesic medication, percutaneous ultrasound guided needle aspiration, with or without sclerotherapy, and laparoscopic or open surgical cyst deroofing. 95% ethanol, 1–3% sodium tetradecyl sulphate, 50% acetic acid, 10% ethanolamine oleate and bismuth phosphate are the sclerosants usually used. Laparoscopic deroofing of simple renal cysts may be performed using a retroperitoneal or a transperitoneal approach."

(I don't know why all the menu text on this site comes up in Spanish?) 

[Zhiwei in reply to PKDUK]

That is great news. Nhs will be able to do it in the future.

[PKDUK in reply to Zhiwei]

Well, we are in 2016 and the method has been around for over ten years. So there is really no excuse why they cannot implement a cheaper and more effective method for removing these awful cysts that keep causing such debilitating health problems. I can only function about 3 hours per day due to pain. I am at my wits end with this and I am tempted to simply take the NHS to court for failing to provide the care I need to function normally.

[Zhiwei in reply to PKDUK]

Is it very expensive to do in the us? If not, you can try there.

[cmcginily in reply to PKDUK]

I have had this procedure on the NHS in England on three occasions. It is carried out regularly but it is only a temporary measure. Due to the nature of ADPKD the kidneys are constantly making new cysts to replace the sclerosed ones. So in essence yes the treated cysts do not come back but new ones are made by the kidney!

It is a very uncomfortable procedure and you have to be certain of which area the pain is coming from to ensure pain relief is attained. I have had cysts from the liver and kidneys drained and ethanol injected and to be honest the pain relief was very short lives maybe weeks certainly not longer than that. I would have to be in abject agony to put myself through that again. It was done under local anaesthetic but you can feel the tube inside. When the cyst is collapsing the pain is toe curling to say the least.

This is not a cure it is at best a temporary relief from ongoing pain, not sure it is worth the bother. Have you tried Lyrica it has controlled my pain well. There are side effects but to have less pain is wonderful

Best wishes Christine

[PKDUK in reply to PKDUK]

As I understand it, the 99% ethanol eventually dry out and shrink the cysts into more or less nothing.

[cmcginily in reply to PKDUK]

I have had this procedure on the NHS in England on three occasions. It is carried out regularly but it is only a temporary measure. Due to the nature of ADPKD the kidneys are constantly making new cysts to replace the sclerosed ones. So in essence yes the treated cysts do not come back but new ones are made by the kidney!

It is a very uncomfortable procedure and you have to be certain of which area the pain is coming from to ensure pain relief is attained. I have had cysts from the liver and kidneys drained and ethanol injected and to be honest the pain relief was very short lives maybe weeks certainly not longer than that. I would have to be in abject agony to put myself through that again. It was done under local anaesthetic but you can feel the tube inside. When the cyst is collapsing the pain is toe curling to say the least.

This is not a cure it is at best a temporary relief from ongoing pain, not sure it is worth the bother.

Best wishes Christine 

[Zhiwei in reply to cmcginily]

I see it. Many thanks for your reply. May I know how old you were when you tried the first operation?

[Venu4584 in reply to PKDUK]

May I have your contact details

[cmcginily]

Hi Zhiwei

I was 27 when I had the first aspiration. Subsequent ones at age 30 and 45. The results were not brilliant. Pain eased for a very short time. Due to the nature of the genetic disease I have Autosomal Dominant Polycystic Kidney Disease the cysts just continue to grow and multiply. I have them in both kidneys and my liver too. \There is a new medication called Tolvaptan that can  help to slow growth of the cysts and it can be used in up to stage 3 renal failure. Hope this helps.

[Zhiwei in reply to cmcginily]

Thanks for your information. Did the doctor tell you how many cysts you have?

My daughter also got PKD but not cysts everywhere,just at the bottom of one kidney. We will meet the doctor to see if it is because of genetic disorder.

She is just five. I need to get prepared.

[cmcginily in reply to Zhiwei]

Sorry to hear about your daughter. There are many reasons for children to have cysts. It doesn't always mean it is a genetic thing. I can understand your worry. The doctors are the best people to tell you what they have found. Stay positive. xx

[Zhiwei in reply to cmcginily]

Thanks. We all need to stay positive. Best wishes.

[Hidden]

Hi there, Greetings from New England,

I was diagnosed with APKD1 after an appointment with a Geneticist in Boston several years ago.

I had known my father had it, so I knew there was a chance I might too, unfortunately I didn't know much about it.

By the time I was diagnosed My right kidney was completely filled with so many cysts it was impossible to count.

I had a lot of pain and some huge ones.

The Drs suggested aspiration for the largest ones. Some had just liquid, some a mixture of liquid and blood.

All grew back within a year larger than before they were aspirated. We tried again this time injecting the alcohol.

Again within 9 months they returned.

Eventually I lost that kidney.

Sorry to tell u when it doesn't work.

GIOVANNIA

[Narceine]

On April 4th 2017 my daughter underwent laparoscopic deroofing of 3 to 4 large cysts, top left kidney, by Mr Banga at The Royal Free, UK. Her kidneys are very large and that area was causing her a lot of discomfort. She also has a pancreas condition which was being aggravated and her spleen was pushed away behind her kidney. We were told that it was a low risk procedure and she'd be home in a couple of days. The consultant treated more cysts than he initially advised us he was going to, being 3 or 4. He drained 2 litres of fluid from 6 or 7 cysts. She came round screaming in agony at him to 'do something', who told her to 'calm down'. She was in hospital for over a week and the pain and sickness did not go, regardless of medications. She at one point actually said to me "Kill me"! She said she would never had done this had she known what the pain would be like. She did have an ultrasound of the area but was told all looked OK and people didn't usually react as she had. Her creatinine was crazy high and her kidney function dropped below it's 17%. She was able to come home to my house for Easter. On the Monday she had a shower for the first time and washed her hair. She didn't sleep that night through pain and sickness and was calling me at around 6 am to say how something was really very wrong. We had the paramedics here at around 7 am. Her blood pressure was dangerously low and she kept almost losing consciousness. By late afternoon when they had finally found that her spleen was ruptured she was rushed into theatre to have a splenectomy to save her life. From there she was on life support in ICU, dialysis running and had had 5 units of blood transfusion. The surgeon admitted that the trauma to the spleen was caused due to the surgery but cannot tell us how. Since she had had to have blood transfusions she now has a high risk of rejection come transplant time. No-one will know how much until it happens. As a family we are devastated beyond words. She has been in pain since, regularly sick and on to of everything, just 3 months on, the biggest cyst that was treated has just merged with another large cyst with many new ones also developing. Basically back as she was. The whole thing was for nothing! So my daughter now faces renal failure along with the complications of not having a spleen and the risk of rejection, all due to a supposed 'low risk' procedure' . We can't sue due the waiver she signed. She was only in hospital last night due to her pancreatitis. She had 20 prescriptions last week to take the chemist, and that didn't include her pain meds. She is only 27 with a 5 year old daughter. I really can't describe the hell I feel I am some days!

[LADscape]

Does anyone know what is this liquid inside cysts? Are those cysts like nodules of Hashimoto?

[Jaxon619]

They can be drained. I actually was looking to see the different types of procedures they do. I know there's a lot of different ones they can do. I'm actually very nervous. I just got a call from my kidney specialist and they gave me the number to make an appointment to get my cyst drained. I called to make the appointment and they asked me if I wanted to come in next week to have it done. I asked her if it was for a consultation she said no it's for the procedure. So I asked which one I was getting and she said that a nurse is going to call me back. I don't think I'm ready yet. I ran away from this when I was 19 cuz I was scared. And now I'm 25 and I'm still nervous to have it done. My kidneys cause me so much pain and agony I'm just scared something bad is going to happen. Anybody has any advice for me it would be greatly appreciated.