Medtronic interstim

Hi, I'm Tutu. That's what my grandkids call me. It's Hawaiian for gramma. I'm pretty new to this great support group, but have had MS since 1991. I'm now SPMS, but am still doing well. One of my MS 'symptoms' is a neurogenic bladder and bowels. Last Aug, I had the interstim device implanted. Does anyone else here have one? I've experienced a few problems lately and have some questions for someone who also has it. Thanks!

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  • Hi Tutu, I love the name. I am looking for a new name for our new expected grandchild in January, I may borrow Tutu, if the future mum and dad like it. I am Nanna to my daughters 2 grandsons, but I fancy a change, and Tutu has a ring to it. I cannot help you with your question, I have read up on it and I am really sorry for how you may be suffering. I feel as though I have got to know you alittle over the last few weeks and you seem to have a good knowledge and belief, so I pray that you are getting the answers you are looking for. God bless, Jimeka

  • Thank you, Jimeka, I appreciate your prayers. I'm also happy to have 'met' you. Your uplifting spirit and encouragement are a true blessing. As for Tutu, I think you would love being called that. I do! Just be forewarned: you may have to explain that you DON'T wear a pink tutu when others overhear your name. I've had a few laughs over that! Congratulations on the new grandbaby on the way. I love my kids, but those grandbabies are extra special.

  • I often say to my daughter, jokingly, that if I had known the grand children would be such a blessing, I would not have bothered with her, I would have gone straight to them, they keep me going, as I am sure yours do.

  • Absolutely!

  • Love the name Tutu😊 I am Nana to 8. Nan was easier for them to learn to say than Grandma. I don't have the interstim device but sure am interested in hearing about it. By backside has been feeling frozen since I went numb at the end of June.

  • Eight grandkids! Wow! How very fortunate you are! I've heard of Nana before, but not the shortened version. Nan is cute! Four months is a long time to have a numb backside. What does your neuro say about that? Probably can't predict if it will get better or not. MS never plays by the rules. But I'm sorry. That has to be both annoying and frightening. I hope it is 'just' a sensory problem (not making light of sensory issues at all!) and diesn't affect function. With MS, we always have hope-hope that things might get better! As for the interstim, I'm not sure how it would work, or even if it would, for your problem (if it is sensory in nature). Basically, it's similar to a pacemaker. What a pacemaker does for the heart, the interstim does for the bladder or bowels. It is surgically implanted below the skin. The lead wires stimulate the sacral nerve. It's often used for overactive bladders. But in my case, it makes my bladder 'work.' Neither my bladder nor bowels get the signal from the brain to do their thing anymore. The interstim is to give me a little more time before I have to go to full-on self catheterization. It cut down on the number of UTIs I've had this past year because I haven't retained urine as I have in the past. For me, that is miraculous! Nan, I hope you regain feeling in your bottom soon!

  • Thank you so much for responding.. I did a little research and my problem is the opposite of yours. There is so much to learn. From the research and what you've said, I'm going to self diagnosis that the sphincter nerve and bowel is not getting the signal to make a bowel movement. I don't go unless I use softeners and or laxatives. Its very uncomfortable and controlling me. Doc didn't say anything yet, wants to wait for all the test results.. in the meantime I eat lots of fiber, fresh fruit, fluids. Yes, I'm blessed with 8 aged 3-23, 4 girls, 4 boys. We're a blended family with 5 kids between the two of us. Unfortunately, kids are spread all over the country. Thank goodness for cellphones and the pc's. Have good evening . Lynn

  • Lynn, I'm on amitiza (24mcg twice a day) and miralax for my bowels. No problem with the sphincter, but my body doesn't push things through. Major motility issue. I recommend you see a gastroenterologist. My neuro recommended the amitiza, but wanted my gastro to confirm my issues were MS related and not caused by anything else (blockage, etc.). I hope you get some answers-and relief-soon.

  • I have patients wit the interstim (they don't have MS). Some have improvement, none total resolution symptoms. Wondering what your side effects are if you are ok sharing?

  • Hi, Erash, I don't mind sharing at all. In the beginning, the humming vibration in my bladder and pelvic floor area was more intense than normal. I have that anyway. It's one of my sensory issues with MS, but this was constant. Gabapentin helped relieve the worst of it. But after three UTIs in the past two months, I realized my device wasn't doing its job. So I turned it up until I couldn't stand the discomfort anymore. Long story short, my bowels totally shut down (not related to device) and I question whether they somehow caused the interstim to shift or move. I now have constant discomfort in one area of my pelvic floor, and when I stand or walk much, it intensifies. (I've actually checked to make sure nothing is poking through the vaginal wall.) Sometimes it is downright painful. Really painful. I have an appt to see my urologist who implanted it next week. Have any of your patients had anything similar like this? Is it possible for the device or leads to move? Thank you.

  • The vibrations yes. The other issues I've not heard complaints of from my patients. Glad you have a follow up appt. with your urologist.

  • Thank you. Just wondering what's up with it since I've had only favorable experience with the device until now.

  • Tutu,

    I wish I had an answer for you, but I will welcome you here. I'm new here but have been made to feel so welcome. I hope you feel the same way.

    Aren't grandchildren the most marvelous creation? I'm brokenhearted that nearly all of them live in Illinois, but even with the distance, they are marvelous!

  • Thank you for the warm welcome, greaterexp. This is a wonderful place, filled with many new friends. It reminds me of an online MS support group I 'attended' while still seeking a diagnosis YEARS ago. I am still very close with a few friends I met there. We've met in person a few times over the years. We hope to do so again, soon. And yes, grandchildren are wonderful. I'm sorry yours don't live closer to you. Half of ours live an hour away, but the other 3 don't. We just visited our youngest granddaughter a few weeks ago. It had been 2 years since we last saw her.

  • I have one & it worked really well for awhile, but then I started having problems & so now it's shut off, I probably will have it removed & since I alternate between incontinence & severe bladder spasms, when I can't pee, I'm considering a catheter. I'm on Mybetrig, Toviaz & DDAVP & have Botox twice (no success)& my urologist, who is phenomenal, said there is nothing left to try.

  • Thanks for the reply, letselia. How long did your device work before shutting it off? More than a year? And did it just stop helping the incontinence? I assume that's why you got it? I was on myrbetriq after a number of other drugs failed over the years. Myrbetriq complicated my problem. Got to where I couldn't 'go' at all while on it. Have had to self-cath in the past, and my urologist has already prepared me for that being my next option. I hope you're able to hold off as long as possible too. An MS friend has self-cathed for years and says it's no big deal. Maybe I'll view it that way sometime in the future.