Sacral Nerve Stimulation

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I have been suffering from bowel problems for well over 20 years since being diagnosed with a horseshoe fistula in ano. Over the years I have had many operations to lay open the fistulas, a temporary colostomy, defunctioning colitis, prednisolone enemas and now have IBS, Pudendal Nerve Entrapment and next to no sphincter left.

The last few years have been terrible due to consistently loose stools and numerous toilet visits each day and the pain from the PNE and scarring. My original consultant has since retired and I have been transferred to his colleague who specialises in reconstructive surgery and following an EUA last month she has suggested Sacral Nerve Stimulation might help with my control along with the pain.

Has anybody had this procedure for similar problems and did it help?

I have read about the procedure online but have probably got many more questions now than when I started.

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  • Posted

    I have a Sacral Nerve Stimulator impanted just six years ago this week which sadly has had no effect at all and now the battery is running low. But please take heart they work more for some than others. Part of my problem was having it done at a Specialist centre in Bristol , it was done privetely as my hubby was still working and this was a priviedge of his job having Bupa. Five weeks later he retired as he had only hung on for my benefit. We retired here to Torquay and i was refered to Exeter who were supposedly starting up  a new clinic for such bowel problems. They have been useless and did not install the sets of programmes for me. Basically the gadget sits in your upper buttock area and 4 leads are going through your lower back and attached to the sacral nerve near the other upper buttock. A simple procedure which took half an hour and i had no problems at all with the stimulator itself. They programme in the first set of four programmes which you yourself can increase the intensity with a small remote like gadget you are given and shown how to use. I kept asking Exeter to install the next four programmes but they did not seem to get it at all. Once or twice a year they have to take out the four programmes and reprogramme the next set of four but Exter said i had misunderstood. They were supposed to have a specialist person trained only to deal with these gadgets but no one ever appeared so i assume there was no budget for this person. After five years i left Exeter and was referred to the Specialist Bowel Unit at Southampton who understood exactly what they were doing. Jan their Nurse Specialist has been trained only to deal with these gadgets for the last 12 years, we actually found that mine was not even switched on. Anyway it was set up correctly but the battery is low. They last about six years but we do not know how long mine was switched off for. Southampton get over 1000 referals a year for bowel problems and they tell me that they have over 250 very happy patients with these Stimulators. I have a very weak sphinter but have no idea why. I have been told it may be adhesions from the various surgeries i have had, had C sections, an ectopic pregnancy and ovarian cyst removal and hysterectomy or they say it is just age. I have frequest loose stools since having my Gall Bladder removed 20 years ago. I just started having accidents out of the blue and was told that i have lost my squeeze and uplift in my anal sphincter. Not had a day out or holiday since it started as i cannot cope with the humialtion of an accident. Not sure where you live but please make sure you are referred to a specialist bowel centre and they know what they are doing. Good luck with it all.
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    • Posted

      Thanks so much for a quick reply Susan. It appears you have been through the mill and I understand the constant fear of having an accident. A lot of planning goes into daily life and lots of trips, and appointments are missed due to urgency. When someone comes to visit or even when on the phone, the need to excuse yourself can be embarrassing.

      The problem I also have is that due to the consistency and all the scarring it is impossible to wipe clean after going to the toilet so instead I use the shower head. This obviously presents problems if I have to ‘go’ when out and about and because there is nowhere to get clean (moist wipes, pads, foam, creams etc all don’t help) the pain around my anus and perineum can only be described as walking with broken glass in my underwear and leaves the area red raw.

      My problems are due to the invasive surgery over the years and on reading about SNS is says that it benefits those that have their sphincters intact. With only about a 10th of my sphincter remaining, I wonder if this will work although my consultant seems to think it will have a good chance.

      I have been under the care of a very good consultant in Edinburgh over the years and he could have taken the easy option and give me a permanent colostomy but because I was only about 30 when I had the defunctioning problems he suggested we use steroids to treat the bleeding and carry on treating the fistula with a view to a reversal in a few months which worked out well.

      When he retired I was transferred to another good consultant and she again is looking to try different options rather than opt for a colostomy. I feel I have had good care overall bar a couple of hiccups.

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    • Posted

      I am on the list for SNS and have been told it is a years waiting list but in the meantime I will have an appointment with someone who will have a chat about the procedure, I will get a trial first I believe, do you need a GA to have the procedure done?
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    • Posted

      You do not need anaesthetic for the trial one, not sure how that works as it is only for three weeks. The GA for the Stimulator is about 30 mins as not a difficult procedure. I was back home in a couple of hours. Just a 2 inch scar thats all. I just simply developed lack of feeeling in my sphincter whilst on holiday a few years ago, no one has any idea why the sacral nerve has stopped working. Had several surgeries in the past, had 2 C sections, my latest was a hysterectomy and it seemed to start about 2 years after that. Has ruined my life as the fear has taken over and i am more housebound than ever after  my last accident. Went on a coach trip soon after we retired here to Torquay and i checked there was a loo on board. No problems all day, i worry when at shows because there are always queues. When we returned home it was a different coach much older and the inevitable happened, then i realised the coach had no loo at the back. Several people were really nasty and called me horrible names for two hours. The stench was dreadful as the more upset i got the worse the situation. I have never travelled on public transport since then. My son lives in London and i have never had the courage to visit in 7 years. I have an active life near my home. I just got back from my aquafit class for the over sixtys which is three times a week. I work voluntarily for the local Hospice and have done up my house and garden overlooking Meadfoot Beach. I just want to have a holiday, my hubby has been going on his own for ten years, just got back from Switzerland last weekend. He is area secretary for the Devon Ramblers so goes three or four times a year with them on walking holidays which i cannot do but i want him to enjoy his retirement. I would be happy to enjoy the odd day out and have several friend who ask me regularly as they are now on their own. A colostomy has been mentioned to give me more freedom but i am terrified of more surgery. Had my stimulator done after waiting three days, such is the power of private health care, i do miss it a lot now that my hubby has retired.

      Wishing you all the best with whatever you decide.

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