Interstim device

I would like to hear from people who have had a good experience with the interstim device. Seems like most posts are negative. I just had Stage 1 done a week ago and so far so good. A little nervous reading the comments and wanted to hear some good things. :)

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I was approved via the test procedure because of my bladder being so small and having bladder cancer. You can follow my days with Inter stem Day 4 etc and follow how I have gone through with this. I really need this inter stem and once I was approved I will make this work no matter what. It takes time to understand the process of the icon settings and the feelings you are receiving.
Before I got the inter stem (medtronic) i was using as many as 8 to 10 pads a day. Depending on how much I drank. It became a horrible experience for me. Afraid of leakage, soiled clothes. I am an active person but my quality of life was down, it began by realizing I did not want to be around friends and grandchildren. My way of life became not good and I had gone through so much meds that didn't work. Only a few souls are selected for this process, so if you have it then you are in a special program set for you.
I have to admit, Medtronic's did not explain what to expect of my icon through this web site and talking with others and being a nag to Medtronic's I finally found a lady on their company that could explain what each button was on the icon controller. It took a while. But I understand it. BUT then you have to understand the stimulation that you are getting. Some programs are so strong it can be painful, so be careful what you set them on
I found that sitting in my car, can cause extreme stimulation. Maybe I need to turn it off when I sit down in the car seat. I am learning. First I am going to get some foam to sit on and see if that helps.
If you have any questions don't hesitate to ask.
we are in this for the long haul. annamarie

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By the way, I am down to 2 pads a day, feel feminine again and glad that I have it. I hope I didn't sound negative about it. It is just a lot to understand, especially when you have to go through surgery to have the type of pacemaker placed in your body.
I am so glad it was done, maybe now my quality of life will get better. I am on day 25 now. with no regrets. Hope this helps you.

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I am having a great experience with the Interstim. I have the Interstim because I started having retention. It started little by little till I realized I had gone more than a day without peeing. I went to the hospital and they had to cath me (it hurt so bad I was crying, the nurse was really mean too she told me that I shouldnt be hurting that bad because a cath is just uncomfortable not painful)

I went to a urologist and we did several tests. At the same time I was dealing with endometriosis and waiting for my laparascopic surgery to be approved. My urologist thought maybe I had a blockage but didnt want to do anything until I had my laparascopic surgery.

By end of October I was not able to pee on my own. My bladder was getting distended each day because of the amt of pee and by the end of the day I would look about 9 months pregnant. I was having bladder spasms, and couldn't feel that my bladder was full. I was taking flomax every day. Having to cath myself everyday so that I could drain my bladder. It was horrible.

In December I had my surgery for endometriosis and they found endo on my bladder, large, and small intestines. In January, my urologist did a cystoscopy to check for blockage or anything else. He didnt see anything. He dilated my urethra (pee hole) because it said it was the smallest he had ever seen for an adult, it was the size of a child's (which would explain why it hurt so bad when the nurse cathed me at the hospital) I would have to special order size 12 fr to cath myself and even that was painful and 12 fr is normally used for children.

He told me I have all the symptoms of IC except I dont have holes in my bladder. Also, I had all the symptoms of IBS.

He told me about the Interstim and in February we did the test. It worked like a charm! In March I started having small leakage problems (sneazing, overflow, etc).

In April when I went to get my surgery for the Interstim, I hadnt cathed since the day before, they cathed me and I had more than 1700mL of fluid in my bladder. The dr was shocked! Me too! (Normally when your bladder hits about 300 or 400mL you go to the bathroom)

I got the real one and its been working ever since! I can tell that my bladder is full. If I wait too long and try too hold it then my bladder will start spasming and if I dont get to a bathroom soon I will leak.

You do have to understand how it works. it works well for some and not for others. The main lead (which is what sits on the sacral nerves) has 4 tiny leads (the programs on your control tell the tiny leads what to do). Program #1 controls the 1st tiny lead and so on (I hope this makes since).

The sacral nerve is in the middle of a lot of other nerves and they are all bundled/mixed together. So it can be very easy for the lead to touch more than one nerve at a time. You may notice it you may not. The program that works best for me is program 1, but it hits a nerve that makes my left leg spasm. If I change positions (stand up) it doesnt anymore. So things like that could happen.

Hopefully you have an awesome Med rep that you can bug to death with a million questions. If it is bothersome they have a special device that touches your lead and can make it move so that it isnt causing the lead to touch the other nerve. I have had to do this 3 times now. But other than that I am very satisfied with it!

I have flown several times, been to the beach, and back with the stim. I hope you find this to work for you and you can always post on here!

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Thanks so much for the information. It was very helpful and I appreciate the time you have taken to fill me in. I just had the trial one put in a week ago and so far so good. The only thing I dont like is having my left leg feel tingling and kind of numb sometimes. I only have it set on 2 sometimes 3. My question is how do I know what is the right setting and how much should I feel. My problem is overactive bladder. I was going 10 or 11 times a day, getting up in the night and totally staying away from any activity that doesnt have fast access to a bathroom.
Changes so far are good, I dont go as much as I did but occasionally I still have the sudden urge to go and I have to get there or I will start to leak. That is the part that I hate the most.
But anyway, I am thankful for this opportunity and I really want it to work out for me. thanks again

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You should be able to feel it, but not to the point where it is uncomfortable. If you are feeling it and it is uncomfortable then you should lower it till you feel it at a comfortable setting.
Eventually you will get used to it too. I know mine is on. If I think about it I feel it, but going through my day I dont even realize its there and its because I am used to it.

To know if it is working for you or not, how many times are you going to the bathroom now? If it is helping and has decreased the amt then I would say yes. But it would also depend on how much it has helped.

When my bladder tells me to go, and I ignore it (because I am lazy to get up or decide to wait until the commercial or whatever), then my bladder will start spasming and if I dont go then, then my bladder will take care of it for me and I will have an accident. So, I am learning not to ignore the signals that its time to use the restroom.

It may take a while to get used to and to find a program that works for you. If the program you have it set on doesnt help very much try another.

I hope this helps, good luck and let us know how it goes.

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My concern right now is the leg tingling and occasional numbness. My rep told me to shut it off and see if that takes care of it. So far it hasnt.

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Well if it causing your leg to tingle, then the lead is touching more than one nerve and they need to meet with you to move the lead. The just touch a special control to where your implan is and press a few buttons and the lead is back in place. But this is how it works when you have the permenant one, so I am not sure on the one that you have.

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thanks.....you have been more helpful than my rep...lol....do you think the leads or lead migrated? Why do they move or did it get attached to another one accidently?

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Normally they stay in the right place on the sacral nerve, but the sacral nerve is in the middle of a lot of other nerves and its all bundled together, so if you move one way, or the lead moves it can touch the sacral nerve and another nerve at the same time which could be what is causing the tingling and numbness.

For my trial, I had numbness on programs 3 & 4 which are the right tiny leads. But I did see improvement in my problem.

I get spasms in my left leg when the lead touches the nerve for that (dont know what its called) and normally if I change positions it goes away. When it gets too bothersome and I cant make it go away by changing positions then I call my rep. if your rep is not helpful, then call your dr or someone above your rep. That rep is making money off of you so they should be jumping when to help you.

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I am going to call the doc tomorrow, hopefully they can figure it out...I will let you know...thanks again

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Talked to my rep and he switched around some of the settings...its working great now, no tingling and I dont even feel like I have it on....

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angela is right. she has helped me a lot to understand this inter-stem. I have to change settings if things get "strong" feelings. Like when I drive the seat hurts so i got so 2 inch foam that really helped .
As for the settings, that is something that you have to try and leave it a day at least or so. I used to get up at least 4 or 5 times each night. I cut back on my water and anything else I drank. I would still get up and pee only a little. Not worth loosing sleep over. Glad I got the surgery it has given me a new chapter in my ife and new decisions I didn't think I could ever make again after the BC.
Once you get it adjusted you should be ok with it, just keep on them until it is right. Hugs to you.

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Woo-Hoo! Glad you got it fixed! It may go back, but just call him again. That's what they are their for. Good luck! <3

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Thanks alot ladies for you help and support. It means alot to me to be able to talk to someone about it. I go and have the permanent one put in July 19. I cant wait! I can't get over how this really works. It has totally changed my life. I do understand your comment about not getting up soon enough to get to the bathroom because of waiting too long, that has happened to me a couple times but it was my own fault. I hope the permament one works just as well. I have done well with sleeping also, I haven't totally slept through the nite yet but it has helped so much. All and all, I love it and am very lucky that my doctor has given me the gift of having it. TTY soon ladies, have a great 4th of July weekend. hugs to you too...

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tomorrow is MY day and I was reading over your journaling, I just thought maybe you could find some time for me to help me out. I have taken to my bed for the entire day and my daughter's baby was due yesterday and when she called, I sais" your fine right, your not going anywhere"lol as I do not or can not move from my room, I'm overcome with nerves and I'm down right scared of every thing... I got on another journal site and was having trouble navigating it so I called and got a woman, who started PREACHING to me all about the negative statistics and death rate and failure and so on and so forth now I'm really either pissed off at HER or more nervous,lol. Any ways what I'm looking for is, during the initial operation does it get real painful and will they medicnally help you through that pain? next,lol I'm assumming this is not going to b the best part by far of this whole procedure as tomorrow stage1? Afterwards I have about a half hour ride home, bring a pillow, so to try and lean sideways rather than put my back flat to the seat? I've been concerned about medication as I take oxycodone 30 mg for this disease I have that causes relentless leg and feet pain and I'm concerned since I'm on medeication my surgeon can't give me anything so he told me to take tylenol..Now the meds I take do help my leg pain and I'm NO NURSE so I don't know more pain more meds? Or will since I'm on meds will they work for both? you probally wont know that answer, say they don't will tylenol be enough for my pain? Or is it really a painful post op recovery? I'll be having my every other w/e with my 14 yr old son and want him not to worry that I look like I'm hurting as he's a worrier,lol sweet kid, and my daughter being due to deliver could I stand in a delivery room following surgery how long after a day 2 or are we talking 4or 5?I'm so sorry you'll probally never be able totouch all these random questions but realize how scared I am and concerned for my children and how worried you were going in on this NOT TO MENTION IT MAY NOT WORK!I can not thank you enough if your willing to help me thu so thank u head of time for at least trying all my pryers yours continues to work shelly

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