Interstim....HELP????

[lisa35]

Hello all,

I have had the Interstim recommended to me by my Uro/Gyn and Pain Management Clinic. Both doctors concurred that the Interstim is for frequency. This is my problem, my frequency is because any urine in my bladder causes pain and extreme pressure. I am not incontinent, in fact, I could hold it for hours if it did not cause so much pain. I do suffer from urinary retention and I know that is another reason for my frequency, my bladder does not completely empty. My Uro/Gyn stated that I would still need to take my pain medication. I am desperately trying to make sense of their recommendation to have this device. If the Interstim takes away the frequency then it seems to me that I am going to need more pain medication. Currently, the frequency gives me a little relief from the pain and pressure that I feel as my bladder begins to fill. Any Interstim-er's out there that can give me their two cents worth. Has anyone had the Interstim with similar symptoms to mine. I take Oxycontin and Oxycodone for breakthrough. One other thing, I had a hysterectomy and woke up with a pinched nerve from the positioning on the table during the surgery. It did go away but, it took about 4 months. Last year my sciatic nerve was damaged from a demerol injection in my butt and that damage will never go away. It seems that I am a bit prone to nerve problems and the thought of the Interstim really gives my anxiety. Please, I welcome all comments both positive and negative. It would be nice not to be in the restroom every 45 minutes. I just returned from vacation and had to use the restroom 5 times during a 4 hour flight. I looked at my daughter as she slept on the plane and did not get up even one time during the flight and I was jealous. I guess like anyone else, I don't want any more problems than I already have. If I have to live with the frequency, so beit. I can't make this decision on my own and I really need your help. :hmm:

Thanks in advance.

Wishing you all good days,

Lisa

[dyno]

LIsa,
I can help you with what I know about Interstim. I have never had it and all any of us can do is give you information and you have to make this decision for yourself.

Interstim was approved by the FDA for frequency and urgency. It is not for pain relief. Some patients do get the added benefit of pain relief, but that in itself should not be the reason to do Interstim. It is suppose to be a last resort treatment after other more conservative treatments have been tried and failed. Like the oral medications, instills etc. Many treatments will take months to see if they will work for you.

The other thing to consider is that there are bad results just like with any treatment. Interstim is surgery and no one should have surgery without knowing both good and bad possibilities. For those who have had less than favorable results, this has changed there lives even more with pain etc. There are others who have had great results and it is definately helping them.

Interstim is not for everyone, but it is a viable treatment for some people. The main thing is you have to decide for yourself and your family if this is the right treatment for you. You have to know that you can live with more problems if you were to be one that had problems with the procedure.

Do your research on this one. Go through all the Interstim threads on here, expand out the days and read, read, read. Go to the Internet and do searchs. Here is a link to Medwatch. Go in and search on there about Interstim.
http://www.fda.gov/medwatch/

Here is the Medtronics page also.http://www.medtronic.com/neuro/interstim/

I wish you luck in whatever you decide, just remember that Interstim should be a last resort treatment. This is a big decision.

[alabama]

I know you posted your question a while ago, but if you're still thinking about the interstim, I'll give you my take. The interstim did not help we my pain at all! It is a tough surgery to recover from, and if I had to do it over again , I probably would not have done it. I also wanted to try everything I possibly could to overcome IC, so I decided to go through with it, knowing that it may not give me all the relief I needed. Good luck!

[Nina 23]

Hey Its Nina. I was diagnosed with ic about a year ago. Took elmiron and atarax and saw a very good urogyno. He said I was a candidate for the interstim and I tried the temporary one. It helped me with the pain and the frequency but you are awake for the whole thing and you are given a bunch of locals that trust me do not work. The only thing I can tell you is that all the tightness in my back was gone and so was the pain. The pain from the wires was extremely apparent. It also helped my frequency. Medtronic.com has the surgery on line. Take a look its a huge operation. When I went for a second opinion and third opinion they said, Why did I not try the instillations and Why did my doctor did not do a cysto before we did the temp. Please keep in mind it did help my pain and frequency but for some it doesn't help for either or. Try everything else first and if your doctor says you don't need them then go to someone else. Trust me only try the interstim if you tried everything else first. It's so painful. Some have suffered from infections too.
:dogrun: Nina

[Peggy Anne]

Wow, how do you make such a decision when there are so many different results? My doctor keeps telling me how easy it is, how its helped so many of her patients, etc. And then I read about the pain, recovery, etc.
I have had IC for 4 years, I've had several cystos, a hysterectomy, tried BCG, Elmiron, Heperin - and nothing has helped. This is my last recourse. My doctor wont try Botox. I have frequency and urgency - no pain. Now I am afraid it will give me pain.... ugh! :yikes:

[Nina 23]

Today after my new doctor finally :bonk:explained to me what an atypical ic patient was (Thanks to people on the board who told me this existed :bow: ) he told me the instillations will now be nonDMSO because my bladder doesn't show physical evidence.(Atypical is no physical evidence but all symptoms -a rarity of ic ooh lucky me). So I would be getting six weeks of instillations then a booster once a month and then we can discuss the interstim :yikes: again. The interstim again -that painful thing I thought. Is this my only hope to be pain free for the rest of my life. I just thought that there were more options for me. I know I will go see Dr Moldwin on Oct 25. I am so tired of this disease :rolleyes: : :confused: :( Just need to vent guys. :grouphug: :kiss:
Hugs, NIna

[dyno]

I was reading through this thread again and wanted to share that my symptoms have always been frequency and urgency. Sometimes frequency as much as 40-50 times a day.

For years, I have had this for 29 years, I didn't get any treatment. Two years ago I tried Hydroxyzine and it really helped to reduce my frequency. That medication with diet and Prelief are my treatment. I have a few other things to use when I have a flare but for the most part this is it.

The reason I mention this is that for anyone who has not tried this medication it might be worth trying. It won't work for everyone but I can say that it has turned my life around for me. I had severe frequency most days. When I left the house I had to know where those bathrooms were all the time.

There is reason to keep working to try everything out there. I never dreamed something this simple could help me. It can take time but it might be worth a try for you. I hope it might be helpful to some of you. Good luck everyone.

[rachelm]

Lisa,

As you're hearing from others, the decision to get an interstim is a very personal one and should be researched WELL before considering it. I was an ICer who following my diagnosis had an initial improvement and then 5 months later began to spiral downward quickly. I was an active 30 year old with a busy career but during the progression of my disease my frequency increased along with pain and then just like you I started retaining huge ammounts which caused the pain to become unbearable. I learned how to self-cath and I kept adding new drugs to see what might help. I have tried everything from large doses of Elmiron, attarax, elavil, zanaflax (muscle relaxer), zoloft, neurontin, gabitrel, urel, pyridium, Lortab,morphine and several others. I also went for daily heparin/marcaine/bisodium carbonate bladder instilations. Nothing seemed to be helping me and the pain was the worst of it for me. My dr. discribed the reason the pain had gotten so out of control was that my muscles surrounding and including the bladder were spasming very badly which caused tremendous back, leg and abdomen pain. If I tried to work it would reach my ankles so I had to stop for over a month. I also began retaining 100% because my bladder quit working. The dr. said there were so many nerves sending it messages that it finally decided not to respond to anything so it shut down.

It was at this point that we decided to try a temporary interstim. Our hope was that it would correct the problem and I wouldn't need a permanent one. Sometimes just interrupting the nerve messages is enough to shock the system back into working again. I was desperate so I tried it. I very quickly had results within 30 min. I was going on my own and emptying my bladder for the first time in a month. Then within a few days I was able to start cutting down my pain meds. I went back to work the next week and other that some minor discomfort from the tape and wires I was great. We left the temp. stim in for 3 1/2 weeks but when the wires came out my symptoms started returning within 3 days when I had to go back on my pain meds. and self-cath again. I decided at that point I would do the permanent implant. The actual surgery is done in 2 parts both about a half hour long. You can get more info by going to the medtronic site and asking your dr. if you coud talk to his rep.

Needless to say, I have done quite well over the last 5 months with my devise. In fact I've gone off all my daily pain meds. I'm also very busy with a new position with many time demands on me. It remains to be seen how well I'll do for the full course of this year but I'm very positive. Last weekend my frequency/ urgency/ pain and retention came back and I was a bit fearful of what would be next. I went in for an adjustment and within 2 hours the presure started lifting and I've been back to normal for the rest of the week.

I still watch my diet and take several maintenance drugs but my life is much much better with my interstim. My story is not the only experience with the device. There are many who have not had good results and you have to look at that when you decide what your options are. For me I had lost my life already so the benefits far outweighed the possible side effects. I never would have done it though without full confidence in my dr. who had performed hundreds of the procedure and had also taken many out. He promised me that if it caused problems for me and I wanted it out he would do it. My suggestion is that you ask many questions of your dr., his experience, other patients, medtronic and get your family involved in making the decision. This is a personal decision and you are the only one who can decide if it's right for you.

I hope my story has been helpful. I used to be on the boards a lot but I'm very busy with my new husband and career and I don't get to say hi often.

Please take care!

Rachel

[tigger_gal]

Hello..... as a fellow inteerstimer, it is not for pain relief by any means.. it may help the urgency pain some what.. but not the bladder spasms pain or pelvic pain.. and it is really hard to learn the difference in those 3 pains.. I know that sounds very stupid... I was voiding every 5 to 15 mins.... I still go at least ounce an hour, sometimes I make it 2 hours with out going. I still get up 2 times at night to go, somtimes I am lucky and sleep all the way thru.... So I most likely need reprogrammed (which is as simple as pie to get done, not another surgery) My "biggest" problem was the urgencey and the pain that came with it.. I got cold sweats, brain freeze, couldn't think, got sick to my stomach and felt like I was going to pass out.. If I had to go it was now or I'd experience a living hell.... The interstim took away that awful urgency.. I could deal with the frequency, I had all my life...
Here is an artical by my dr, he was rated one of the top doctors in America for 2004.. you can read his profile under a post on Share your story Topic: This Made my Day...
ok artical on the interstim my Dr. wrote.
http://www.medreviews.com/pdfs/articles/RIU_4suppl1_s36.pdf
wishing you luck in you descision.. please remember its a last restort treatment, use any and all meds possible first... My trial and surgey is on my patient story attached below..
Hugs
Cindy

[Amanda]

Before InterStim I was having a problem with the urge to urinate, although their was little or no urine in my bladder. This happened mostly at night, and could last four, six, even eight hours until I was able to urinate. All the while I may be in the bathroom every ten minutes and crying in pain because I wanted to urinate so badly. When I did finally urinate, I would run into bed and try to go to sleep really fast so I did not have to start the process all over again. Needless to say, there were nights when I did not get to sleep until my parents were getting up for work (if my mom wasn't up all night with me). This was something that I dealt with every night, and although not all nights were as severe as I just talked about, many, many, were.

I had InterStim surgery in May of 2001 when I was 17. At that time, I had had interstitial cystitis for a little over two years and was diagnosed a little over one. I tried many of the conventional treatments, but did not find any relief. Since then, the horrible nights I talked about are nowhere near as severe and are not part of my daily life.

I still have interstitial cystitis, though. For instance, right now I am menstruating and therefore flaring. My bladder hurts and I have been urinating about every fifteen to twenty minutes. I still take medications to control my pain because I still have daily pain. My bladder still aches all the time, and many times hurts, but at least I did find some relief.

If you asked me if I would do it all again, I would definitely say yes. For me, the worst part of the whole surgery was the catheter. Other than that, I had very little additional pain in comparison to my daily pain (I also have severe fibromyalgia).

I wish you the best of luck.

Amanda

[Peggy Anne]

ok, What catheter during the surgery?? The temp surgery or the real one OR both?? I'm getting more nervous by the minute!