Interstim

[Jee]

I have IC (for a long time and have had tried everything) and I am scheduled to have the interstim next month and I am very unsure of it but this pain and using the bathroom all night has got to stop. My doctor says that the interstim has taken people's IC pain away completely. I really want to quit taking pain medicine and get back to work. I would love any information anyone can give me on how Interstim has worked for them and especially for pain. And, is it hard to get used to? Thanks for any info anyone can give.

[ldwall]

I hate to tell you this, but the interstim is not proven to take care of pain. For a few lucky people it works that way, but for most it does not. It is for frequency/urgency only (retention in some people) it is not approved to be a treatment for pain because the chances of it working for that are very slim. There are many ladies here that were disappointed when it did not work for them. If it takes care of your frequency, and not your pain, is it still worth it to you? If you are not 100% sure of the answer, or if you feel that you are not getting good honest information from your doctor, don't get it done right away.........research it. The trial can be painful, it can be just plain difficult, and very dissapointing if you are looking for pain relief and you don't get any. I hope you find some information that helps. Lisa

[yvette]

Hi Jee, Welcome to ICN you should be able to find a lot of help and info here. [img]smile.gif[/img]

I have to admit I get really ticked when I hear of doctors telling their patients Interstim will take their pain away. It's not meant for that and even Medtronic's website for Interstim does not claim that anywhere and my Medtronic Rep made it VERY clear it would not help pain. You can read all about it at http://www.interstim.com

There have been some people who have had relief with their pain. If it does take pain away for someone that's an added bonus not a sure thing. I'm sure doctors mean well...or something. But dam* if it isn't a recipe for a big dissapointment.

OK I'm done with my rant [img]wink.gif[/img]
I've had the Interstim for almost a year and I would do it again. There are some nights I get a full 7-8 hours of deep, uninterrupted sleep. That is pure bliss..compared to getting up every hour on the hour...yuck! I can go shopping again with some normalcy and driving isn't such a hassle like it used to be.

I'm definetly for Interstim, but its I agree its not for everyone. I would also strongly advise to not think that Interstim will be the "be-all end-all" for IC. Be ready and open to use other treatments in conjunction with it. and as with any treatment: research it, research it and research it some more! Its your body and nobody will take care of like you will.

I wish you the best of luck in whatever you choose.
y. [img]smile.gif[/img]

[Teri]

I just had my 2nd surgery in October. First on in Sept 99. The original one just quit working, they aren't even sure why. This second one so far hasn't helped as much as the first one but I'm praying thru adjustment we can get me back on the right track. NEITHER surgeries helped with my pain, infact, with the 2nd surgery I ended up with having even worse back pain that I did before the surgery.
I don't know why dr's can't just say that a very few patients have been helped with pain. What they are telling people is medical BS. IF you do get help from pain with the interstim......it's luck, it has nothing to do with the science of the surgery.
If you are going to have it done for urgency and frequency, go for it!!!!! Dealing with the pain has been so much more tolerable now that I don't have to deal with living in the bathroom too.
Read thru the archives. There have been some pretty long debates on the subject.

wishing you the best....and if you have any more questions, please feel free to ask.

[DebbieB]

Hi Jee:

I will have my InterStim Implant for three years this coming April!!
I had wonderful results with the InterStim and would do it over again in a minute..
I for one had the most awful pain that would make me passed out...
I had NO PAIN since I had the InterStim done..
I know alot of girls on the boards had their pain go away as well..
Everyone is so different in this procedure...

I for one was told by my doctor that it would not help my pain when I went to do this procedure, I can not understand myself why many of the doctors in the US, are telling people that it will help with pain...
I would read all I could on the InterStim at www.interstim.com and I would ask how many procedures your doctor has done on the InterStim and for your benefit ask if you can talk to one of patients that had it done by him...

Everyone is so different in this procedure and we all handle it in very different ways, all we can do is give you some help and support , but you are the only one that can decide what is best for you Jee..

Good luck and keep us posted on how you make out ok..

Hugs: Debbie

[Jazzy Baby]

Jee,
Everyone one that has posted to this is right. Debbie is one of the lucky people that has gotton pain relief from the interstim. I am not. It has helped with my frequency, but not my urgency. Sometimes I have to turn in off in order to go to the bath room. Now that the implant is telling my bladder to hold more, it does, but it is painful for me. I am one of the ones that was told that this would be a cure pretty much. My doc told me that it would take my pain away 100%. So did the medtronics rep. It hasnt dome that for me yet, maybe it will. I had it done in Sept. though, and I am not happy with it. It also has messed up my mestrua; cycle really bad, and I was never told that it could happen. Actually, they keep telling me that it is not the interstim that is doing it, but on the medtronics web site, it states that it can mess up a woman's cycle. I was not givin any info on it before my surgery. I asked for it, but I never got it. I even asked if there was a web site that I could go to, and I was told no. I dont know why they didnt tell me about it, because it is there. I would definatly do a lot of research on it before you have it done. The trial and the perm surgery are both very painful, and it is a lot to go through if you are not going to get any results. Dont do this if pain is your biggest problem, because it is not made for pain. Medtronics does make something for pain I have heard. It is a pain pump. I think it is one there site too. Just go to http://www.medtronics.com/, and read everything you can before you make your decision. And please dont let the doctors make the decision for you like I did. [img]confused.gif[/img]

[Ruth N]

I have had the interstim for over 2 1/2 years. It has been wonderful in terms of reducing urgency and frequency and allowing me to sleep through the night. In general it does not help with pain. Debbie is my wonderful bionic twin. We both had our surgeries at the same time. But Debbie did not have IC as it turns out. Her pain was caused by severe retention. Interstim treats retention and once she no longer retained urine her pain ended. That does not mean it will take care of IC pain.

With regard to the procedures themselves I found the test trial quite painful but only for brief bursts when they probed for proper nerve placement. I did not find the pain from the implant surgery to be bad at all. I only used pain meds for 2 days. After that I was just sore and achy. But everyone is different,each surgery is different, and we also all react differently to pain. I would not let fear of surgical pain stop you from having the interstim BUT I would not try the interstim if your main goal is pain relief because it probably won't happen. Good luck with whatever you decide.

[kenny]

I have had the medtronic implant for about 3 years and it has done nothing but cuase me trouble and more pain. I was told that it would take away my pain and fix the ic. Not true ...
I am one of a few guys that have had this done. I am 53 and I am having my implant taken out this wednesday. Thank God
Good Luck to all of you

This is my first day with the network

Kenny

[Kara23]

For me,

The Interstim works for the pain associated with urgency. So I have less painful urges with the Interstim, but it does not help for the pain of IC associated with flares, general IC belly pain, and it does not help with Sexual Intercourse.
If you are going to try the Interstim, it's great for urgency and frequency but not for the sole purpose of pain.


I still get up 3-5 times at night to use the bathroom, mind you, I have severe IC and I am not taking any pain medication becuase my doctor will not prescribe it and I was turned away from a pain clinic.

I believe the Interstim works well along with other medications and procedures. For now it's still experimental. The Insterstim alone does not do very well. I suspect you will always have to be on some sort of medication even after you have your Insterstim.

Kara

Kara

[KimS]

Hi Everyone, I'm very concerned now after reading all of your messages in regards to the Interstim. I just went last night to an IC Support group meeting and they had a rep there giving us info on the Interstim devise. I have done research on there website, and I found out from there that it probably not take care of my pain with the IC. Well the rep Brian last night said that they have to list it on the internet as not helpful for pain because it was approved by the FDA four years ago for retention, and urgencey. He says now in the past four years it has proven to give relief for pain, and that it soon will be released as a help for pain in IC patients. My urologist has recommeded that I try this, and after hearing some of your stories I'm afraid too. Is the procedure very painful, and I'm starting to wonder if it will be helpful since I have more pain than anything else. I just don't know if going through all of this is worth it if pain is my most problem with IC. I have talked to a few, and they said that the pain was worse than giving birth to there children. I have no children so I don't know that feeling, but I can only imagine. I just don't know who I can trust I thought it would be my doctor, and the rep. It is sounding like it may not be the right thing for me. Has anyone heard or tried DMSO2? Please all posting would be appreciated.
Thank You Kim

[pwalker]

Kim I had the Interstim device perm. implanted in October of 2001. My pain problems with IC was the freq. and urgency and going to the bathroom all the time. I was going on average 43 times a day. The interstim has cut that down to around 13 times a day. I do not have alot of pain with mine. I do sometimes but it is not a major problem. I do know that they do not recommend it for pain alone. The procedure is uncomfortable for me. The testing was done first I was out of work about a week, while I had the leads in. For that they did not put you completly under. They have to know if you are getting stimulated or not. They gave me something to make me sleep and not really aware of what is going on, but your are still able to answer questions when asked. The permenant one was done on a outpatient basis. I was out of work around two weeks. Enough time for the cuts to heal. During both procdure's I was given pain medicine. I believe though that the testing was worse than the implanting due to limited things you can do in order to keep the wires from moving. I have not had any adverse effects with mine to date. Although you can still get flare up's even with the Interstim device. I am having one now. But they are not nearly as bad. You have to remember that this is still a temporary thing. You are not cured once you get the implant done. And until they find a cure for IC we will still all suffer in silence as we do now. It took 6 years for me to get a diagnose of IC I am now 30 years old and this is one crippling thing. I have my mind programmed now that I will not let IC take over my life and I have learned to deal with it the best way I can. I guess going so long with doctors telling me it was in my head had something to do with it. All I can say for myself the Interstim device was my last chance at some kind of normal bathroom life. And as of right now it is holding up to it's promise. But like you I have read alot of problems people have had with it and I made my mind up to do what I thought was best for me, because with this disease not every thing works for everyone. And also if you have the testing done first to see if you are a candiate that will let you know if it will really work for you. I wish you the best with you decision and I hope you find what you are looking for. Patricia [img]eek.gif[/img] [img]eek.gif[/img] [img]tongue.gif[/img] [img]wink.gif[/img] [img]biggrin.gif[/img]

[Teri]

KIM~~~~~~~PLEASE ask these questions BEFORE you do anything!!!!!!!!!!!!!!!!!!!!!!!!!
How much does your uro know about programming?
How often does Brian say that he will be available to you for adjustments AFTER the procedure is done, NOT just during the trial but AFTER SURGERY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I was told before my 1st surgery that it WOULD NOT help with my pain and it DID NOT. I had to have a revision in October and was told that they were having success with the pain of IC and all's I can say to that is bull $hit!!!!!!!!!!!!!!!!!! Let these uros and let these reps go thru this procedure. Then let them tell us how easy it is and how good it will be. I am still waiting for Brian to deliver [img]mad.gif[/img] [img]mad.gif[/img]

[KimS]

Patricia, and Teri, Thank you for your posts, and I will ask my urologist tommorrow about the questions. Did either of you have a lot of pain with your IC? I'm just not having a good feeling about this procedure anymore. I had my hopes up, and now I'm really scared to try the test. Was your testing painful, and would you try it all over again if it was almost a last resort? My urologist just isn't giving anymore options, but this Interstim. If you have suggestions please let me know. Have either of you heard of DMSO2? Someone referred the info to me, and I'm thinking that I may talk to my urologist about it. Again thank you for taking the time to talk. Kim

[dedeash]

Hi
I am not sure where to start here....I guess I will only say that the Interstim for me was a roller coaster. I had it done a year and a half ago and had a great trial and then after surgery it worked two weeks and quit.
Then I had another trial and revision surgery and again it worked one week and stopped...so I had a third surgery this last September with the staged method. It worked for me and was a success, I think that the staged method is a better way..at least it was for me.Things went on okay for about a month, not as good as the first surgery...but it helped (my frequency was about 50% improvement) and then my implant got infected. Dont know how or why but it did....so I spent two months sick in and out of hospital off and on and had to finally get it removed on Dec 20th.

For me it did not help with pain, it helped only frequency and urgency - when it worked. When it was working, it worked good, and was worth it...I also had Brian as my rep, and he was great in the beginning but the last months of my Implant and tuneups and surgeries, he was no where to be found. I felt very hurt and let down that he didnt return my calls or pages....when I really needed to ask some questions.....and I dont know to this day why he did not call. I am not sure if I became a "problem child" or if Medtronic was afraid that I was going to sue them? I had never said anything bad about the implant or Brian, always supported and promoted it DESPITE all the problems I have had. I still feel it is a good therapy and can be helpful. It just didnt work out for me......
I feel that there are two many Michigan doctors who perform this now and not enough Brians to go around for everyone....this affects the time he can spend with everyone and the time he has to do the tune-ups necessary after surgery. When I first went in I could get in once or twice per week....and slowly over time it had moved up to every 5 weeks he could only see patients. I personally dont think that is often enough, and think that the doctors either need to train their own personel to do the adjustments, or Medtronic should hire more representatives.Its not fair to the patients and not fair to the reps.

I dont mean to scare anyone, or rag on Brian, I just want you to know what is going on out there and to ask questions and know what your'e up against. Until the doctors and Medtronic reps have an implant put in their body, they cannot tell anyone what will happen and make promises....you really dont know what will happen and your trial may be better or worse than your actual surgery....and you may not have relief for pain or urgency.
I also want to stress that the implant should be a last resort for your IC.....try all the remedies, pills, treatments first, as this one is very serious, its a surgery after all,and painful and also very permanent.

Lastly, if I had to do it all over again, I probably would have, except for this last surgery to remove the implant....the infection was one of the hardest things I had to go through and I am still healing from it.

Take care
Dede