Sacral nerve modulator

[Pongoandperdi15]

So Ive a decision to make In a few days time on what my long term treatment options are, I've a few questions for my urologist but out of the options he's given me I've ruled out urinary diversion, I'm not sure about suprapubic catheter but it's not 100% out I am however leaning towards sacral nerve modulation.
Just wondering if anyone on here has had an implant and if it made your life better and what the recovery was like, that's what worries me the most I've read I won't be able to work for 6 months I do a physical job so I'm told it's a lot longer (I was going to ask the urologist this question to see if that was accurate) I mean the information I've read was a pretty much detailed schedule of what will happen during your procedure from trial to implant to recovery.
I've also read that even after recovery you have to be careful as there is a risk you can pull the wires out which would be no good for me I spend my day lifting and shifting things.

Thoughts would be appreciated

 

[BigAl2]

That is a lot to think about. Do you have to take anti-rejection drugs with it? If you do. Then you have to be concerned with weight gain. I have decided diapers are best for me. I leaned how to diaper for the amount of time all be out. And always carry a spare and pants or shorts if i leak.

 

[Pongoandperdi15]

That is a lot to think about. Do you have to take anti-rejection drugs with it? If you do. Then you have to be concerned with weight gain. I have decided diapers are best for me. I leaned how to diaper for the amount of time all be out. And always carry a spare and pants or shorts if i leak.

Unfortunately I don't know that's a question I'd have to ask next week, I mean it's a huge sacrifice 6 months recovery but if it brings back normality then it's probably worth it that being said the battery only lasts 5 years so you have to get the procedure repeated however I'd speculate that it's not as big of a procedure as the wires are already in place they just have to change the modulator but again I'm guessing, however they might have updated the technology by then so you need a rewire

 

[Pongoandperdi15]

I wouldn't be surprised if they make you sign a contract as well absolving responsibility with them messing around in your epidural cavity, it bet there's a risk for paralysis or other similar complications.

 

[BigAl2]

A lot to think about. Research is important. Keep digging for all the info you can get. Post your question over here too. https://forum.nafc.org/

 

[cm90210]

I have had one for four years. It has been life changing. Very simple and pain free. I would not recommend the rechargeable one, folks seem to have more trouble. There’s a good Facebook group with people who have the interstim. I have the one that’s mri safe and has to have the battery switched out after 5 years.
I don’t notice it’s there most of the time.
I’m so glad I was able to have it.

 

[Pino]

Thoughts would be appreciated

Hi, it is on my "options list" as well, until now i can handle well with the Botox, ISC and diapers. Good enough to not to do it right now.
My main problem would be to have to stop my sports, this is not possible with a SNM.

I my German forum there are some people who did it and most are very happy with it, i now at least six that worked well and only one to have it removed again for nor success. It seems to be tricky in the beginning until you find the right program.

It is definitely worth a try, you get it to test for some days and can decide for the real thing.

 

[Pongoandperdi15]

Hi, it is on my "options list" as well, until now i can handle well with the Botox, ISC and diapers. Good enough to not to do it right now.
My main problem would be to have to stop my sports, this is not possible with a SNM.

I my German forum there are some people who did it and most are very happy with it, i now at least six that worked well and only one to have it removed again for nor success. It seems to be tricky in the beginning until you find the right program.

It is definitely worth a try, you get it to test for some days and can decide for the real thing.

So did they tell you that you have to stop sports forever or just while you recover?

They have only given me a little bit of information to go on so im reliant on Google.

 

[carrielg]

So did they tell you that you have to stop sports forever or just while you recover?

They have only given me a little bit of information to go on so im reliant on Google.

hi i tried this a few years ago, i live in the uk , they put in trial unit in, this was 2 very fine wires pushed into the nerve through the skin on my back just above the top of my buttocks. this was done under while i was knocked out. i stayed in hospital over night and the next day they plugged in the control unit, this was adjusted till i felt a tingling the adjusted back until i could no longer feel it. this is to see how effective the system will be before they implant the permanent device under the skin a very small device that can be programmed and charged wirelessly like a pace maker ,one implanted its quit well protected so a physical job is not an issue, no anti rejection medication is needed just as if you had a hip or knee replacement, unfortunately for me during the trial one of the small wires broke as these were stuck to the skin on the surface with clear surgical dressings so the device could no longer send the pulse to the nerve . the consultant sad they could not test it so the option to have the premiant one was not able as part of the wire was still in the nerve and they were not prepared/able to repeat the process , i was not too pleased as this is one of the less invasive surgical options i was offered
hope this is of use, please free to ask any questions

 

[Pongoandperdi15]

hi i tried this a few years ago, i live in the uk , they put in trial unit in, this was 2 very fine wires pushed into the nerve through the skin on my back just above the top of my buttocks. this was done under while i was knocked out. i stayed in hospital over night and the next day they plugged in the control unit, this was adjusted till i felt a tingling the adjusted back until i could no longer feel it. this is to see how effective the system will be before they implant the permanent device under the skin a very small device that can be programmed and charged wirelessly like a pace maker ,one implanted its quit well protected so a physical job is not an issue, no anti rejection medication is needed just as if you had a hip or knee replacement, unfortunately for me during the trial one of the small wires broke as these were stuck to the skin on the surface with clear surgical dressings so the device could no longer send the pulse to the nerve . the consultant sad they could not test it so the option to have the premiant one was not able as part of the wire was still in the nerve and they were not prepared/able to repeat the process , i was not too pleased as this is one of the less invasive surgical options i was offered
hope this is of use, please free to ask any questions

Very helpful thank you, it's what attracts me to it as well I've been given four options 1) continue ISC and conti pad use 2) suprapubic catheter 3) urinary diversion surgery 4) sacral nerve modulator. Out of the four options my order probably is this 1) sacral nerve - less invasive has the most capability to bring some normality to my life 2) continue ISC and conti pad use not much change but would like to try and stop the UTIs if possible or at least reduce frequency of them 3) suprapubic not sure about this one unsure of risks of infection 4) urinary diversion don't think I like the idea but would free me from UTIs I suppose.
What a shame they didn't go ahead with yours I feel like that's some what unfair to just give you one shot at what is the most minimally invasive procedure that could change your life for the better.

 

[carrielg]

Very helpful thank you, it's what attracts me to it as well I've been given four options 1) continue ISC and conti pad use 2) suprapubic catheter 3) urinary diversion surgery 4) sacral nerve modulator. Out of the four options my order probably is this 1) sacral nerve - less invasive has the most capability to bring some normality to my life 2) continue ISC and conti pad use not much change but would like to try and stop the UTIs if possible or at least reduce frequency of them 3) suprapubic not sure about this one unsure of risks of infection 4) urinary diversion don't think I like the idea but would free me from UTIs I suppose.
What a shame they didn't go ahead with yours I feel like that's some what unfair to just give you one shot at what is the most minimally invasive procedure that could change your life for the better.

i finally had a clamcistoplasti which has not helped me much i now have to do bladder flushes 2 times a week, ics 2-3 times a day and still have to use pads i had complications from a blood clot after surgery and get frequent utis

 

[mickdl]

So did they tell you that you have to stop sports forever or just while you recover?

I think it depends a bit on the sport you do. I wouldn't necessarily do martial arts with it, but many other things are possible (after the test phase when everything has healed).

How ever - what makes me a bit suspicious are the other "options" you mention. If you write "urinary diversion" and SPK, then I would first suspect a massive problem with the urethra and/or bladder. Giving a tip here without knowing the details would really just be guessing.
If you give us a little more detail, we might be able to help you better. Otherwise, my recommendation would always be to get at least a second opinion for something like this.

As far as the pacemaker is concerned, how well it works depends massively on the cause of the problem. Basically, I would say that the chances of success are better with an overactive bladder than with a flaccid bladder. In the latter case, it always depends on the cause.
If the urologist thinks it is an option, then in principle there is little harm in trying. If it gets a little better in the test phase, the chances of it getting better later are pretty good.

If nothing happens during the test phase, the electrodes will come out again and you will have to look for another solution. It is also often the case that a multi-stage approach is taken - but I would need to know a bit more about the background to be able to say more about this

 

[carrielg]

P/S i have had x rays and scans since the wire was implanted ad the broken part causes interest as it shows up on them

 

[mickdl]

P/S i have had x rays and scans since the wire was implanted ad the broken part causes interest as it shows up on them

Oh yes... That's another important point... make sure that they implant an MRI save pacemaker and make sure that not only the pacemaker itself but also the combination with the electrodes are enrolled for MRI scanning.

 

[Pino]

So did they tell you that you have to stop sports forever or just while you recover?

They have only given me a little bit of information to go on so im reliant on Google.

I got information, that i can't do six weeks any sports, but my main problem is, that all sports with "shocking" moments are not possible any longer, so for example bike racing, yes, downhill, no. Or, in my personal view, Judo is out of question with this definition.
Jogging maybe O.K., but is not recommended, everything you need to jump is a problem, and i think getting smashed down onto the earth counts as a shocking moment either.

 

[Pongoandperdi15]

I got information, that i can't do six weeks any sports, but my main problem is, that all sports with "shocking" moments are not possible any longer, so for example bike racing, yes, downhill, no. Or, in my personal view, Judo is out of question with this definition.
Jogging maybe O.K., but is not recommended, everything you need to jump is a problem, and i think getting smashed down onto the earth counts as a shocking moment either.

So while it has the technicalities to free you from one condition it has the ability to create another, your effectively not allowed to do anything with impact. You move from one disability to another it would seem.

 

[Pino]

So while it has the technicalities to free you from one condition it has the ability to create another, your effectively not allowed to do anything with impact. You move from one disability to another it would seem.

It is not that hard, but at the moment i not willing to gave this sport up. When the day comes, the operation is on the wish list.

 

[carrielg]

So while it has the technicalities to free you from one condition it has the ability to create another, your effectively not allowed to do anything with impact. You move from one disability to another it would seem.

its all seems to be compromises with any treatment , to which do you find less difficult to live with ,pads, isc, side effects from medication or side effects from surgery

 

[EcoIncon]

My own experience here... I had the interstim trial and it worked really well for me. I did not get the implant for the similar reasons that others have cited here. However, I asked specifically about the sports I could/couldn't do (after about 3 months to allow the are to heal fully) and these were the answers I got:

Go for it:

• Aerobic activity (walking, running, cycling, swimming)
• Weightlifting
• Yoga/stretching/etc.
• Non impact sports (tennis, racquetball, pickleball)

Probably ok:

• Downhill skiing (if I wore padding over the neurostimulator transmitter itself)
• Mountain biking
• Moderate impact sports (soccer, basketball, volleyball, etc)

Not OK

• Martial arts, boxing, etc.

I don't know if this helps you at all @Pongoandperdi15 but I really had to ask about each activity. You could go through the trial and at least see if it's going to help you and then decide whether or not to proceed???

 

[cm90210]

I’m normally active, and don’t like extreme sports or martial arts. I have had no limitations, and doctors haven’t made me swear off any particular activities. I live a normal life with the implant. It’s wise to do due diligence prior, but I really doubt there will be any significant negative impacts on your life once you heal.