Having second thoughts about Interstim?

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I did some reading up on Interstim before when it was talked about by my PT and urologist before it was ruled out back then.

Now that I have moved forward with starting the process to get the temporary one I have a lot more questions. (Luckily I see my PT on the 27th)

I really do not think this is going to work for me. I do not think there is a nerve issue with my bowels. I think it is muscles that are not working as they should which is what my PT has been saying all along so...

Also, I looked up the side effects of this Interstim and I am like (YEAH, About that)

I am all for the trial one and see if it works but I am like they should be able to do some testing first before even doing the temporary one to see if I will respond to the stimulation.

I do not think that I am overthinking this as even my Colon doctor thinks that this is another maybe thing to try.

I just don't know if this will work because it would have to be able to fix quite a few things to be worth it.

 

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yes Doctors can be full of maybes

 

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Glad your PT is a sounding board

 

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I am currently doing PTNS treatment. It is similar to the interstim. However the use an acupuncture needle to and electrodes to stimulate the nerve that goes to the same area. You could try that plus get a home tens unit and do that daily. It is not working for me but as we know. Everyone handles things differently.

 

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I hope this adds to this conversation.

Last Friday I talked to my OAB urologist about doing PTNS vs. Interstim. She told me I would need to make 12 two-hour trips (That's what a round trip would take me.) to do the PTNS and then repeat the procedure every 6 to 8 weeks thereafter. In 2016 I had an Interstim implant that worked for a few months. After I fell and landed on my butt, the device didn't work so well. I was disappointed and decided to turn it off after I was told the leads were only working at a 40% reading by the Interstim rep.

Back in March, 2021, I had a new (second) urologist remove 65% of my prostate using Green Light Laser Surgery. Since then I have had no UTIs. However, I have been diagnosed with OAB. I have decided the best option for me is to replace the broken Interstim device, which is not MRI-compatible with one that will be MRI-compatible.

I have learned through research and from the OAB doc that this Interstim will reduce my urgency issues by about 50%, maybe more. After reading about the situations many folks deal with in this forum, I know my situation is comparatively minor compared to some of you. Nevertheless, I'm hoping this new device will improve my quality of life.

My surgery will be on January 12 and I will share results as I learn more.

 

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@fleemoore

My doctor gave me a heads up that the company that makes the unit they want to do considers a 50% improvement with the trial device to be grounds to do the full implant.

It only has a 10 year life span, will not fix all of my issues, and I still will need the medication I am on because it is not made to fix what I have from what I have read. So, I just do not know about it. Going to talk to my PT about why they want me to try it when just two a short time ago it was not considered an option at all. Also going to me messaging my PCP about it.

 

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Well you are wise to get the full story on this as it seems like you have some doubts. It is better to proceed with caution than to rush ahead into something you're not sure of.
If it were me, I'd want to have every question answered so there isn't a shadow of doubt. Get as many opinions as you can. By all means do talk your PT about this and ask her point-blank why if just a short time ago it wasn't even considered an option and now it could be. And do message your PCP as well. As my old editor would say, get the full story!!!

 

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My Interstim hasn't been a magic bullet, but it's been a dramatic improvement to my quality of life. I continue to need Botox and hydrodistention, but it got me a wonderful eleven month stint of not having to wear diapers, and I think that once we get things calmed back down and possibly the Interstim adjusted a bit I'll get back there. It doesn't mean that I won't ever need to wear a diaper - but not having to wear them most of the time, and not having my whole life seem to revolve around my bladder, makes it worthwhile for me.

At the end of the day, it's up to YOU to decide whether to get the Interstim, not Medtronic's guidelines. Your response to the unit, and your priorities of what you want, may be completely different from mine, so the fact that I find mine worthwhile may not be all that relevant to you, but it's at least a bit of data that you can hopefully use to form a more complete picture of what your options look like.

As far as the ten year battery life, I decided that that wasn't a big deal. The surgery to change the battery is relatively minor (for me, the hard part of the Interstim surgery was placing the leads, not implanting the unit itself) and ten years is a long time. They do make a rechargeable version, but I decided that technology moves fast enough that the units they have in ten years will likely be significantly better than the units they have now so I'll want the thing changed anyway, and I don't have to sit on a charger every few days with the non-rechargeable one.

You are wise to think about what you really want, and I'm not trying to pressure you one way or the other. On the other hand, I know how much mine has helped me, and I'd love to see you get as much improvement in your symptoms as I've had from mine.

 

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@billliveshere

The person that I talked to from the company that makes the device gave me the number of the rep so I can get more questions answered.

The person that I talked to already was an RN that worked for the company but could not answer some of the questions that I had and also did not think that this will fix the major issues that I have so I am like WTH with if this is a good idea.

Again the test one is still a good thing to try but I am not going to hold my breath that this is right for me.

 

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ThatFLGuy:

Hey man - while I'm no doctor and can't give medical advice; I would still say to go through with the trial. My urologist even told me that the companies want to see a 50% improvement but from what I remember, if it is denied and you see improvement - then your doctor can write in to fight for you to get the device because you've seen improvement on the device.

Any improvement with bowel and bladder issues is an improvement to your overall quality of life. While I don't suffer from bowel incontinence; I did see improvement with the interstim device with my bladder issues. I unfortunately was unable to fully go through with the permanent device - the test while uncomfortable and inconvenient for the week you have it; is worth it when you factor in the fact that it could improve your overall quality of life.

I hope it really works out for you - being in this boat sucks and I wouldn't wish it on anybody in the world.

HC

 

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@Honeeecombs

The thing is that if this does nothing for the pain that I am in all the time and does not have better than a 50% improvement in the bowel issues then I don't want the dang thing.

I am 37 and it only has an 8-10 year life so I will need a few of them in my life if I live long enough.

And even the RN for the company said it will not fix most of what is wrong with me so.

I just don't know.

 

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What is it that's causing your pain? I'm sure you've said it, but at the moment I can't remember what your diagnosis is.

 

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@ltapilot

They still have not gotten to the bottom of that. I cannot take really anything for it.

They feel like it is due to the shrinking of my bowel due to where I had surgery though but it is almost impossible to figure out if that is the case because it does not show during a colonoscopy or ct so.

But essentially I have chronic constipation with incomplete bowel voids that lead to bowel and bladder incontinence and chronic stomach pain that never goes away.

 

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@ThatFLGuy I totally agree with you.

 

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@Kevin82 TENS has only ever helped a wee bit in my back time, and definitely only when it’s turned on. A few years ago I did it religiously for a few months before giving up. At least my insurance paid 100% for the device.

 

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Interesting stuff-keep up the fight-the medical community has really gone down here dur to the panidemic and the culture crap we are going through. I am fightint myself on so many different fronts and with my injuries hard to keep everything up. Good Luck all , Merry Christmas and Happy New year. Blessings-prayers are still the best. This is my life also, going to the doctor's or therapy everyday.

 

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I just got off the phone with my Mom. Again, I am not against trying this but the timing and what it does for me has to be right.

My mom is worried because they are talking like it I will have to wait till the summer for even the temporary one. "Yea I am in too much pain to wait that long, And I am not having BMs like I was before/during botox." So, yea I need to get this done ASAP but not be in pain until then.

I have talked about the pain to PCP, Colon doctor, GI doctor, and everyone who will listen and still do not have a solution, and this device is not going to do anything for that "according to the company."


This is what needs to be fixed with me. Number one Get the pain figured out in my guts, Stop craping my pants even at home, Be able to eat before I leave my house to go shopping (I will crap my pants if I eat before), Stop the spasms that are very painful and last hours after having gas/BMs and last but not least do something about the fatigue that I get every day.

So, no, I do not want the big ostomy surgery but if I will still need it in a year then why the heck wait when everything is pointing to needing it. I get trying different things but if it is not going to fix the big issues then "WHY."