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Moderator_Jen

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Reply with quote  #61 
Good luck with everything - hope all goes well and you get the answers you want xxx
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kat5010

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Reply with quote  #62 
hi,
i wonder if anyone could tell me how long it takes to perform the 'trial' stage of the sacral nerve stimulation. i am due to have this carried out next week to help with my urinary frequency. i have had interstitial cystitis for 20 years and my bladder is very scarred and ulcerated. i need to use the loo every 20 minutes,it is too painful to hold on longer and i am worried how long i have to keep still for the procedure to be carried out !! the hospital have said i can use a pad but emptying my bladder whilst lying on my front would be impossible. any advice would be much appreciated
Moderator_Jen

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Reply with quote  #63 
Hi Kat

If you have a read through this thread you can see how my trial was done and what my experience was like. I've had my full implant for just over a year niw.

Usually the SNS is fitted under a general anaesthetic - is your consultant suggesting doing it under a local anaesthetic? I know they do it this way in Anerica but I've never heard of it being done that way in the UK..

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Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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kat5010

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Reply with quote  #64 
hi,
thanks so much for replying..
The ' TRIAL ' Stage is due to be carried out under local anesthetic. At my pre-assessment it was explained that the procedure could take up to 2 hours and that i will have to keep still. if i could keep still for this long i would not need to have SNS as i am having it done to try and help with my extreme frequency.

can it be carried out under general anesthetic ? i am having it performed at York Hospital and am in a complete panic...
Moderator_Jen

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Reply with quote  #65 
I have to be honest I have never heard of it being done under a local before in the UK, but it is very common practice in the USA to have it done under a local.  There is a facebook page you could join that gives more info on having done under a local - just type Sacral nerve implant into facebook and ask to join - its a closed group and not open to general viewing (you can email me and i'll give you the exact name if that helps x)

I can only really give advice from my experience which was having both stages done under a general  - but having it done was the best thing I have ever done. I have now had it in place for a year and I haven't had any problems and only had it reprogrammed once, so i think its been a huge sucess story for me.  My frequency was so bad i was going over 40 times a day and at least  times at night, or worse goign into total retention and not being able to go and had to have a cathether fitted under the general anaesthetist as its the only way to get my body to relax to a cathether in - but thats the joys of having fowlers syndrome and IC - not exactly a marriage made in heaven!!!

Now I go about 5 times a day and maybe occassionally once through the night if I'm in a flare.   My rentention issues are also hugely reduced and are nowhere as serious or problematic as it was.

Sadly it did absoultely nothing for my pain levels but i live in hope!!!

In regards to having it done under a local, all I can suggest is you talk to your consultant/GP and express your concerns and see if there are any other options available for you.

If you ever want to talk then please email me or contact the COB Office for my number  - I am always very happy to offer any support at anytime, there are a few COB forum users that text/ring/email me for support and i'm always happy to help.  It is scary, but I hope you have the same success i have been fortunate enough to have and it all works out for you - please stay in touch and let us all know how it goes - we are all here to support you and wish you the best xxxx
 

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kat5010

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Reply with quote  #66 

Thanks so much again for taking the time to reply..
i will take your advice and speak to someone at the hospital on monday, as i know it will be impossible for me to have it carried out under local anaesthetic. Maybe different hospitals use different procedures, York hospital will only do it under local anaesthetic but i would be more than happy to travel anywhere to have it done under general..
i have read your threads and you really are an inspiration, i love your 'half glass full' attitude, i used to be the same but over the years i am afraid the glass is becoming empty (lol)...
i really do hope you can find relief for the pain of your IC and with your positive attitude i am sure you will...
Thanks again for your support  x

Moderator_Jen

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Reply with quote  #67 
How did you get on with the hospital?
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Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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kat5010

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Reply with quote  #68 
Hi,
So very sorry in not replying sooner but i decided to have a few days visiting family in London as my surgery was cancelled. 
It was decided on Monday that it was not in my best interest to have it performed if i was unable to stay still for the duration (up to 4 hours !!)  ... i now have an appointment in clinic on 24th May to review the situation. I am not sure where this leaves me as the consultant says the procedure does need to be carried out whilst i am awake so that i can tell him the sensations i am feeling during the operation.
Feeling very confused at the moment but I will keep you updated and i do hope you are doing well    
Moderator_Jen

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Reply with quote  #69 

I have to admit this is the first time I have ever heard of it being done this way in the UK, but doing under a local anaesthetic is very common practice in the USA.

Here is a link to the UK's leading expert on SNS as she was the one who was  originally responsible for researching and  introducing this treatment for bladder (primarily fowlers syndrome) conditions in the UK 
 
http://www.fowlersyndrome.co.uk/06-sacral-neuromodulation/

Usually the electrodes are connected to specific set of nerves - “the third sacral foramen” or “S3” as it is commonly known.  When mine was done they could tell what nerves where being stimulated when they turned the SNS on after the surgery and sorted out the programmes then.  

Good luck with your appointment and I hope you can work out a compromise with your consultant that you are happy with.

 


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Moderator_Jen

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Reply with quote  #70 
It's just under 2 years now since I started I had the SNS and things are still going very well. My frequency has continued to reduce to normal limits and I am able to hold a greater amount in my bladder without pain and urgency to void I felt before the SNS.

I have had the SNS reprogrammed a few times but I have been reassured that this normal as the SNS awakens the nerves and as they become used to the signal and the strength of the signal.

The only slight hiccup on the horizon is that since having the SNS fitted I have lost just on 4 stones of weight and the cushion if fat that was protecting the SNS implant and electrodes has disappeared which has means the SNS and electrodes are now very near the surface and can be felt under the skin and can be wobbled, you can so feel the electrode wires. The SNS shouldn't be so near the surface and there is concern that if I were to fall and land on my bottom there is a very big risk that I would damage the SNS. Because of this concern they are considering removing the SNS and placing it in a more cushioned place.

My London consultant is requesting a multi discplinary meeting (a meeting with representatives from the physio, pain clinic, urology, gynaecology and another couple of departments that I've forgotten the names of!) to look at my case, see what has happened and my options are for the future. Within the pain team at the London hospital there is a professor who uses SNS for pain relief and he has been invited to give his opinion on whether he could help my reduce my pain levels if the SNS were to be re-sited.

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Bladder Health U.K. Forum Message Board Moderator.
Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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Ladyshopper

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Reply with quote  #71 
Thank you for the update. I'm so pleased for you that it's worked and had a positive effect.

I was up at UCH London again this week. Like you have been the subject of MDT meetings. Unfortunately everything else has failed, so I have decided to go ahead with the clam cystoplasty and am booked in for April. Very scary as its such major surgery, just hope I've made the right decision.
Moderator_Jen

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Reply with quote  #72 
Good luck with your operation. I really hope things go well for you and that it's the best decision you have ever made xxx
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Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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Ladyshopper

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Reply with quote  #73 
Thank you. I will try and remember to update on here.

The hospital said they do a lot less of these ops now, as the Botox and sns work for the majority. Sadly not me.
Moderator_Jen

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Reply with quote  #74 
It's so hard when treatments don't work and slowly options and treatments are taken away until there is only one option left. I found it really scary when the only option left was SNS as I felt reassured to know I always had that option. It was very hard to make the decision to go ahead with SNS as I was scared what would happen if it didnt work. It took me a year to pluck up the courage to go ahead with it.

Sometimes a leap of faith needs to taken and trust in our decision. As they say - nothing ventured, nothing gained!! X

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Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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Moderator_Jen

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Reply with quote  #75 
As some of you know at the beginning of the year I'd been having problems with my SNS and after eventually after a lot of begging I managed to get an appointment with the specialist nurse in London who confirmed it was damaged and I needed surgery to repair it.

My SNS was the most amazing treatment for me, it really stabilised my condition and helped keep me on the right side of maning my condition and I assumed that after the repair my SNS would go back to the way it used to be before it broke.

Sadly this wasn't the case and although it is working, it's not functioning the way it used to and is causing a lot of weird sensations and pain.

I went back to London to see the specialist nurse who basically accused me of being a drama queen and attention seeker and called me stupid as she said the SNS couldn't do the things I say I am experiencing. She told me that if I complain any further about the SNS not being "right" then she is putting me on the list to have it removed. (Before you ask -yes a formal complaint has been made!)

Anyhow my local pain consultant suggested I see another SNS specialist - who is based within Basildon Hospitals.

I had an appointment with them a week ago and The actual specialist I wanted to see wasn't in clinic (just my luck!) however I saw his next in charge and one of the socialist nurses and they were amazing. Extremely sympathetic and really listened to what I was concerned about. Luckily I had requested all my notes from London so they were able to read through them and get an idea of what had been done and how things have progressed etc.

They did an X-ray and the lead placement is out wider than it was before, so they think this might be affecting the SNS but they are unsure. We talked about some suggestions on the way forward, but they really wanted to talk with The specialist and the Medtronic rep (I didn't even know they existed, but apparently they are on call for patients with SNS to assist with reprogramming and investigate and SNS related issues by doing more indepth signal tests etc. London have never offered this service as even though they are a centre of excellence they apparently have refused to accept this service offered by Medtronic)

The new hospital asked me to leave it with them and they would come up with a plan.

I've just had a call back and I have an appointment for next Tuesday (11 November) at 2.30. I'm meeting with the new hospital's specialist nurse and the Medtronic rep who will hook up to the implant who will send different signals etc to the SNS and see how it reacts and what response and strength of signal it gives out etc.

I'm then being squeezed in as an extra with the specialist inwanted to see and he will talk me through the results and let me know what the next step is.

The really good news is that they are confident they can help me. They have said that what I am experiencing from the SNS is abnormal and it shouldn't be doing what it is doing but they think once Medtronic have done all their tests etc they will be able to find a way forward and sort my SNS out and it will work as effectively as it used to.

This is such a relief and I'm now feeling positive about the future again.

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Bladder Health U.K. Forum Message Board Moderator.
Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

Please support Bladder Health UK by become a Bladder Health UK member  - click here for more details: http://bladderhealthuk.org/membership
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