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Buttons

Sacral Nerve Simulation Surgery

36 posts in this topic

Sweet I don't think you're are whimp, we are just all different and things affect us in lots of ways.

 

I've slept an awful lot this last week, constantly feeling very tired and not able to concentrate, I've assumed it's the anaesthetic but a nurse friend said that it's out of your system after a couple of days. Added to that I'm in quite a bit of pain again today and I think it might be that I've simply done too much! I did all my ironing this morning including 12 shirts for my hubby! He's got a lot of work on at the moment so it didn't seem fair to ask him to do it all.

 

Tomorrow I go for a wound check, I think it's okay but I am very sore and sitting is not easy!

 

Buttons

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Well I've been back today and have been switched on! It does feel different to the temporary one but that is largely due to the fact they program the device and they program the hand control unit so that I can switch it on & off or turn up the amplitude of the pulse (at bit like a tens machine). He did say that it may take a few weeks or so to get exactly the right program that will do the job for me with as little side effects as possible. The ones which worked the best affected my leg so he had to switch the amplitude down, I will just have to see. I can't over stretch or bend too much in case the electrode or stimulator get displaced because if that happens they have to operate again to repair or replace the parts apart from that I can do everything else.

 

I'm keeping my fingers crossed still that it works for me.

 

Buttons

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Hello Buttons

 

Glad you're now all switched on! It's amazing what they can do these days, man that makes me sound real old! I hope you get the setting right quickly and that you and the implant have many happy years together.

 

Take care.


Amanda Thorpe

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Hi Buttons

I had the same operation about eight years ago.I have found it very successful although don't expect a complete cure. In my case it took a couple of months to work at it`s best. i can`t remember exactly, but I think my first battery lasted about five years I did not realize what good it was doing until the battery went flat. Hope all is well with your recovery. :)

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Hello Prof Plumb

 

Welcome to the forum! It's encouraging to hear that your surgery is still successful today.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Professor Plumb

 

It has been 3 weeks since they switched it on and have had some problems but they have changed the programming of it which seems to help. They did warn me that it would not necessarily cure all the issues I have but it is helping some of them. Do you get any side effects from it? I'm getting issues with my toes curling up so this is why I'm trying different programs.

 

I'm so glad to hear that yours has been so beneficial. I have been told that I should switch it off at night but the people who make it say to leave it switched on all the time. I was told to turn it off to help conserve the battery but my hubby thinks that by turning it on and off could actually use more power. What have you been told to do?

 

Buttons

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Hi Buttons

 

I had mine fitted by St Marks hospital in Harrow, my operation was paid for by the manufacterers of the appliance. I haven`t had problems with my toes curling but as I was working as a plumber the electrodes would move on the nerves and throw my leg up in the air, they cured this by turning off two of the four electrodes. I keep my stimulator turned on all the time as most of my stomach problems are in the morning. I have not set any alarms off recently in shops but this was a problem occasionally and took some explaining! I had mine fitted as part of research so things may have changed since then. I now teach plumbing so do not put so much strain on the wires. If you have any other things you think I might have come across please contact me.

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Thanks for that Info Professor Plumb, it's good to know I'm not the only person who has one of these fitted. I was given a special card to carry at all times so that I can show it if need be to stores or the airport etc. So far I haven't been anywhere that has set it off.

 

I'm now using a different program and that seems to be helping but still causes my calf muscle to twitch in one leg. Still I'd rather put up with that rather than the alternative. It's not solved my issues completely but it is substantially better and means it's easier getting out and about.

 

Like you I've been told not to put strain on the wires so some of my Tai Chi moves I can't do to the full extent.

 

Do you carry your controller with you all the time or leave it at home?

 

Buttons

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Hi Buttons

 

I don`t carry the remote control with me unless I`m going on holiday but I suppose I should. I know what you mean about the calf muscle but you do not notice it after a while, unless you switch it off then back on again.

 

Do not go through the x-ray machine at customs, they will give you a body search instead. My battery pack is fitted under the skin on my stomach and I found things like electric drills used to switch it off accompanied by a nano second of a power surge up my backside! Quite amusing really. I hope you are starting to get used to it then you will forget it is there. ;)

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