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sphincter problem

User
Posted 19 Jul 2015 at 14:11
Has anyone had an artificial sphincter fitted
User
Posted 21 Jul 2015 at 18:45

Sorry ,can't help but boosting post for others to see. El.

User
Posted 21 Jul 2015 at 18:48
We really would like input.

Apparently it isn't done very often for post prostatectomy. 😟

User
Posted 21 Jul 2015 at 18:54

Hi All

Has anyone on this forum been involved or enrolled on the Master Trial? Details are available with the following link:

https://www.mastertrial.co.uk

If so what are your thoughts or conclusions.

I had a Dynamic Video Test of my urinary system on 24 March 2015, to check the reason for my incontinence following removal of my prostate gland on 12 December 2012. Followed by an endoscopic internal examination of my urethra and bladder to check for scar tissue or a stricture on 9 June 2015. I am now waiting a further consultation with the consultant urologist running the Master Trial to discuss the next stage including the possibility of my being involved in the trial.

abprops

User
Posted 21 Jul 2015 at 18:58

Hi Hilary,

I can't help you with your enquiry, but I believe ' tonypw '  is in the process of trying to arrange for this procedure to be carried out? Maybe a he will be able to answer some of your questions if you PM him?

Incontinence? Goodbye to the kids' inheritances. by tonypw

Luther

Edited by member 21 Jul 2015 at 19:03  | Reason: Not specified

User
Posted 21 Jul 2015 at 18:59
Yes Sean has been told about the trial(hadnt had tests yet as hospital is so slow)

The surgeon said that he couldnt see much point as the artificial sphincter was what NICE say is best.

The tape op can loosen off.

User
Posted 28 Mar 2016 at 12:12

The Consultant Urologist who completed the Dynamic Video Study of my urinary system advised that another appointment would be required to complete an internal examination of my urethra and bladder.  That procedure being required to check that the problem was not due to a STRICTURE within my urethra or EXCESS SCAR TISSUE where my urethra was reconnected to my bladder.  Following that internal examination the Consultant Urologist advised that there were no STRICTURE or EXCESS SCAR TISSUE so a further appointment would be required to discuss the options and the Master Trial. As Sean reported the hospital procedures were in my case slow with maths between each appointment.

During the last appointment I was shown a sample of the Artificial Sphincter, where the various parts would be located in my body and how the device functioned.  The conclusion was that I was a suitable candidate for the Master Trial as either a Male Sling r an Artificial Sphincter would be suitable for my condition.

The Consultant Urologist who surgically removed my prostate gland, left nerve bundle, 12 lymph nodes and a margin of tissue to hopefully prove the cancer had not spread further in December 2012 advised in January 2015 that the Male Sling would not in his opinion be suitable for me but he would refer me to a colleague who specialised in the male sling.  I was also given a leaflet produced by the American manufacturers of the Artificial Sphincter in which they said most men used only one incontinence pad per day after the device was operational. I wondered exactly what that meant as wearing on pad for 24 hours seemed very unlikely to me.

As part of my decision making I asked PCKUK for contact with previous patients who had undergone such surgery.  The one man who telephoned to discuss his experience was initially very upbeat.  However after some discussion he confirmed that he still used one pad per day and then that he used one pad every 8 hours.  I said I was keen club cyclist cycling regularly distances of between 35 and 100 miles on a Saturday, Sunday and often during the week.  That produced the response that the consultant who had fitted his artificial sphincter had advised him to dispose of or lock his bicycle away as due to the location of the inflatable-cuff which closes the urethra contact with a bicycle saddle could result in damage to the cuff and or the urethra resulting in further surgery to replace the device and possible infection.

I discussed the advice received with the consultant urologist during the third appointment.  He advised that one of the men he had previously fitted an artificial sphincter for was a cyclist and had brought his saddle and padded cycling shorts with him tom discuss the possibility of problems.  The consultant advised that providing I used a wide enough supportive saddle and wore padded cycling clothing there should be no problems.  I asked if it would be possible for that consultant to arrange for me to meet or discuss the experiences of one of his previous patients.  The consultant wrote to my GP (copy to me) on 14 August 2015, "Mr Butchart was keen to speak to one our patients and though we haven't had a formal set-up for this service I will try and identify a patient who is willing to discuss his experiences with Mr Butchart.  But there has been no word of a man willing to discuss his experiences to date.

I was pleased to have the VERBAL results of the dynamic video test and the INTERNAL EXAMINATION.  Both to confirm that I was incontinent and that there were no problems with my bladder and urethra.  I am reluctant to undergo further surgery at my age if there is any risk that the procedure will not cure my incontinence problem and interfere with my main sporting and social activity as a competitive club cyclist and athlete.

 

User
Posted 28 Mar 2016 at 13:12

I think the picture I am picking up is that you have had a lot of conflicting advice from just about everyone you have consulted....

Here is my input - I hope it will clarify things. Please note that this is my own experience and is not intended as advice for you - I am not medically qualified!

I have had both operations. I chose the sling first because I did seem to have some residual sphincter activity (I could hold on for about 1/2 hour before leaking and was dry sitting or lying down in bed). At first, the sling worked very well - no pads at all and at the time, I was working in London so was hopping on and off buses, dragging a case with a week's worth of dirty washing, carrying a heavy laptop and so on. However about six to eight months on, the leakage restarted and gradually worked up to three mid-capacity pads per day. I did start with an inguinal hernia at the same time, but I could not get a clear view from anyone whether there was a connection between this and the leakage.

When I could not stand the leakage any more, I opted for an artificial sphincter (AMS 800) - it was implanted last year and activated at the beginning of December. I did ask the consultant about riding a bicycle after the operation, and once we had got over the "well, could you ride a bicycle before?" joke, he said he did not think there would be a problem. I sent an email to Boston Scientific (used to be American Medical Systems) to ask if they had any advice, but they did not bother to answer.

The AUS has been very good, there is still a tiny bit of leakage that seems to coincide with sitting relatively upright on a hard chair, or when erect. I put this down to some distortion of the cuff (and maybe the presence of some erectile tissue under it in the latter case). The level of leakage per day just about stains a very light pad (Boots Staydry for Men, normal). So far I have not tried the bicycle and with the current saddle, I am a bit reluctant (it used to leave me feeling a bit numb after about an hour or so). I have looked at alternatives like gel-filled saddles but have been rather put off by the cost and the variable reviews. There is a pretty good independent bicycle shop close by and when I remember, I'll go an ask if they have any experience of saddles that exert low pressure.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 28 Mar 2016 at 14:49

Abprops, if Butchart is your real name it might be better to blank it out as this site is open to non members and we do very occasionally get trolled.

I don't know if that would be a problem but maybe better safe than sorry

We can't control the winds - but we can adjust our sails
 
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