Anyone have experience with having a Sacral nerve stimulator?

Posted by januaryjane @januaryjane, Apr 8, 2020

Hi- i have an appointment to get a sacral nerve stimulator. Has anyone ever had this or know about it?? I'm just trying to get first hand info. and experience, thanks.

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It is something to try before considering a Colectomy.

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@januaryjane

It is something to try before considering a Colectomy.

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Why are your doctors considering a colectomy? I like your name “januaryjane”. My name is Jane and I was born in January.

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@januaryjane

It is something to try before considering a Colectomy.

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I had a colectomy because of severe diverticular disease. The surgeon was able to make an a anastomoses so I don’t have to wear a bag. It was very successful.

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@darlingtondoll

I had a colectomy because of severe diverticular disease. The surgeon was able to make an a anastomoses so I don’t have to wear a bag. It was very successful.

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My name starts with a J and i was born in january. Wow, would you mind telling me a little more about your anastomosis?

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The surgeon had to remove about 12 inches of my large intestine starting at a part of the descending colon, the sigmoid colon and going to the very lower part near the rectum. He was able to make the anastomoses at the time of the surgery. I healed very quickly.

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@darlingtondoll

I had a colectomy because of severe diverticular disease. The surgeon was able to make an a anastomoses so I don’t have to wear a bag. It was very successful.

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Hi, I’m having my entire colon removed the end of September and I’m terrified. The doc is 85% sure no bag. I have severe motility in my colon and I haven’t passed stool in 14 months. I’ve tried everything. No medication worked and I’ve been trying PT for 4 months. Laxatives make me severely sick but I have to take them. I wish someone could help me understand recovery. I’m allergic to pain meds so I will get nothing. Please reply if you can help me prepare.
Thank you…Joanne

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Medtronic Interstim SNS devices implanted 2008 - 2015 for faecal incontinence. I had lead failure, lead migration, intermittent shocks and right sided gluteal spasm. After 2 failed lead changes and a complete device change, I had the device completely removed in 2015. These stimulators caused me a lot of problems.
This year I've started to get shock like pain that radiates from the sacrum into my right buttock, coincidentally where I've old battery incision scars. This pain causes my glute to spasm and if my glute is relaxed, I've centralised lower back ache similar to when the devices were in. I've tried physio, fascia release. I've had an MRI that shows some nerve scarring around S3 which is where the 1st device leads connected into. However, I have no idea how to remedy this issue which potentially I'm stuck with. Driving and sleeping is affected too. I've tried medications like Amitriptyline but they leave me feeling too spaced out.
Has anyone else experienced issues after the devices have been removed?
I'm after some advice as to how I move forward. I know these devices have caused other people issues and I cannot find any information about problems after the devices are out.

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@mermaiden

Medtronic Interstim SNS devices implanted 2008 - 2015 for faecal incontinence. I had lead failure, lead migration, intermittent shocks and right sided gluteal spasm. After 2 failed lead changes and a complete device change, I had the device completely removed in 2015. These stimulators caused me a lot of problems.
This year I've started to get shock like pain that radiates from the sacrum into my right buttock, coincidentally where I've old battery incision scars. This pain causes my glute to spasm and if my glute is relaxed, I've centralised lower back ache similar to when the devices were in. I've tried physio, fascia release. I've had an MRI that shows some nerve scarring around S3 which is where the 1st device leads connected into. However, I have no idea how to remedy this issue which potentially I'm stuck with. Driving and sleeping is affected too. I've tried medications like Amitriptyline but they leave me feeling too spaced out.
Has anyone else experienced issues after the devices have been removed?
I'm after some advice as to how I move forward. I know these devices have caused other people issues and I cannot find any information about problems after the devices are out.

Jump to this post

Pain originating S3 + right glute pain - advice?
Medtronic Interstim SNS devices implanted 2008 – 2015 for faecal incontinence. I had lead failure, lead migration, intermittent shocks and right sided gluteal spasm. After 2 failed lead changes and a complete device change, I had the device completely removed in 2015. These stimulators caused me a lot of problems.
This year I've started to get shock like pain that radiates from the sacrum into my right buttock, coincidentally where I've old battery incision scars. This pain causes my glute to spasm and if my glute is relaxed, I've centralised lower back ache similar to when the devices were in. I've tried physio, fascia release. I've had an MRI that shows some nerve scarring around S3 which is where the 1st device leads connected into. However, I have no idea how to remedy this issue which potentially I'm stuck with. Driving and sleeping is affected too. I've tried medications like Amitriptyline but they leave me feeling too spaced out.
Has anyone else experienced issues after the devices have been removed?

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@januaryjane

Sorry to hear. I first had a colonoscopy, which as normal. Then I took a sitz marker test. You swallow a pill pull of radioactive rings and they take xrays to follow the rings through your digestion process. There are different ways to do it. I took an xray, then took one pill, came back 3-4 days later and had the last xray. All of my markers were still in my body. So, they consider this slow transit constipation. I also had an upper scope which was normal. And finally a Defecography, which was normal, and Anorectal Manometry, which indicated i had some Dyssynergic Defecation. I did pelvic floor therapy, including biofeedback, for a year or so with little result. Im considered Chronic Idiopathic Constipation, which is unknown cause. Ive been on Amitiza, Trulance, Linzess now Motegrity.

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Condition you describe is very similar to mine. I even have a colostomy bag now as diversion for the pelvic floor dysfunction. But I still have slow transit constipation which is not relieved by OTC laxatives e.g. Miralax, MOM, senokot. Amitiza or Linzess didn't work for me. Have you had any results with Trulance or Motegrity?
Any insights you can share will be greatly appreciated.

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@mahmudhasan

Condition you describe is very similar to mine. I even have a colostomy bag now as diversion for the pelvic floor dysfunction. But I still have slow transit constipation which is not relieved by OTC laxatives e.g. Miralax, MOM, senokot. Amitiza or Linzess didn't work for me. Have you had any results with Trulance or Motegrity?
Any insights you can share will be greatly appreciated.

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Have you tried lightening up on what you eat? Beef, pork, and poultry may take a while to digest, which may translate to slow transit. Fin fish may digest (and transit) quickly.

Also, cooking your produce to make it easier to digest, which could help speed transit. Think soup and well-cooked stir-fries as examples.

Also, have you tried avoiding processed foods, like cookies and crackers? Processed foods and even gluten could be a problem.

Have you looked at your meds and supplements to see if any could slow transit? I know fiber can slow transit. Miralax doesn't work for everyone. Senokat can be harsh.

Soluable fiber supplements slow transit time, especially if they say they help people lose weight (by slowing transit time).

And though it is counter-intuitive, have you tried minimal in-soluable fiber? One study showed huge improvement if patients stopped loading up on fiber, the thought being that in-soluable fiber just puts more "stuff" to transit into your colon.

Lastly, have you thought of a lubricant laxative like mineral oil? A bit of "slip" may do wonders.

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