Would I be a candidate?

[Alisha]

Hello everyone....I had my last Uro. appmt. on May 29th. He really couldn't do much more for me except he put me on Neurontin. I talked to him about the Interstim, but he doesn't perform them, nor does he know anyone personally that does. I wanted to know if you all think I would benefit from the Interstim and if you think they would approve me to try one based on my symptoms. I don't have frequency....I go the average 8-9 times a day. I do have severe pressure and I feel like I have to go all the time. The combination of these symptoms causes me great pain. I have read that the main purpose of the Interstim is for frequency, but I am praying that it also helps pressure and the constant feeling like I have to go. I have tried almost everything at this point and I am so scared that they will tell me I can't try the Interstim because I won't benefit from it. I would appreciate all comments so I know what to expect.

Love,
Alisha

[DebbieB]

Hi Alisha:

The only way you will tell if the InterStim Implant is for you is to do the InterStim trial.....base on your diary of your intake and out take of urine and if there is a 50% improvement of your out take then you would be a candidate for this procedure..

I had that problem with frequency and Urgency of going up to 63 time a day and then just overnight I had my urethral tube just went partly paralized and was unable to pee on my own for two and half years, I had to self-cath myself for that long..
I had the InterStim Implant done on April 20, 1999 and it has just been so great and has improved my life so much and I am back working again..

I have pelvic floor dysfunction..
Also the InterStim does not help with pain in some girls but it help my pain and I know of many girls it help as well...

Also I did biofeedback and urodynamic testing, these testing sure will help you to know what your problem is for sure !!

Also you could call the company Medtronic and see if they could locate a doctor in your area or near by at 1-800-664-5111 ext.300 or go to www.Medtronic.com , also you can read all about the InterStim at www.interstim.com

Good luck on what you decided and only you can decide if this procedure is for you to Alisha !!
If you have anymore questions just posted them ok , I will be happy to answer them for you ok!!!!

~~~Hugs~~~ Debbie

[Sandy]

Hi Alisha
I have the interstim and have had it for about a year now. I had similer problem to you that I felt tlike I had to go all the time but when I tried I could not but the feeling was there and I had bloat pain and pressure. The pressure felt like the bladder was full all the timeand when I self cathed(which was long after meds and other installations I was taught how to self cath)it would relieve the pressure for awhile. I was told I had IC by one uro and then by another I was told I did not. I was on Elmiron for a year and with that the pelvic burning I had calmed down and I quit it for qwhile and then it came back. I also have Pelvic Floor Dysfunction and from what I have read about them the symptoms are quite similer. Interstim is a big step but I was at my wits end after three years. so I heard about this urologist that I am now seeing after coming across this board(fluke by surfing one night and it has been the greatest source of information) I read about a women in Canada that had this interstim done(after I read some about it) and contacted her and I got her uro's name from her and contacted my family doctor and she forwarded me to him right away. I told him what my history was(can't remember if I had other uro reports sent) and we discussed the trial and I had it done. First one was painfaul as the wires or wire was too close to the nerve and it scared me as I never seen that kind of pain before, so the only thing I remember from the first one is that the bloat pain and feeling of having to pee all the time subsided.But when the freezing came out, it was very painful to the point I had them removed and agreed to try again. I am so glad he talked to me about it cause I was pretty scared to try again, but that is a chance in life to try again, so I did, and it was succesful. The thing you have to remember with the trial is that you cannot bend and do regular things, basically just rest. I didn't I bent over the second or third day(not thinking) and the wire moved so the stimulation subsided. But it did helped with being able to pee(as I could hardly pee, no pressure for pee stream and flet so bloated all the time and also had trouble with constipation) took the pressure away and increased my own voiding probably a little more than 50%. I still have some problems with being able to empty my bladder to the point of full relief and have to self cath at times and still get flares from the IC, but NOTHING like last year this time. I am also one who kind of over extends myself and for that I still get alot of back pain around the wire and tailbone area if I bend alot. I am sure that will subside again(drove to Florida from Toronto in March and all the sitting was very hard)And like I said I still have problems with fully voiding but I am still having adjustments done and if that does not help there is the option of having another wire put in to stimulate more( I ony have one wire) I can't tell you much about that as I have not talked to the uro about it yet. Some people require more adjustments than others and it seems I am one of those.
Hope this long windied note has helped you
There is a list of drs throughout canada and the US and I think you can find it in the patient hand book

Go to site map

Sandy

[Sherron]

Hi, Alisha

I also suffered from that constant feeling I needed to urinate and my bladder was full, even immediately after voiding. I also had frequency around 45 times a day, go only void very small amounts, had a weak stream, stopping & starting, etc. However, the always feeling like I needed to void was what drove me out of my mind!!

I had my first implant in 1989 and revisions in 1991 and 1992. Each time it required lots of adjustments as my body accomodated to the stimulation. I don't have a patient programmer, just the magnet, so I had to drive about 1-1/2 hours to a doctor at UCLA (you can imagine how bad that was).

Since my last surgery, all my symptoms have gone away and I am pretty much normal (some of my friends wouldn't agree, of course ).

I hope you are able to get the test stim and that it helps you! I had great response to the test stim and great response now. I can go kayaking & surfing without a worry.

Good luck! :cool:
Sherron

[Amanda]

I had simmialr symptoms as you--- I did have a little more frequency (about 15 times a day--- though I could be in the bathroom another 15 times or more trying to urinate, but unable), though my main symptom is the constant, painful urge to go.

I have had the permanent implant for about a month and it is helping me a lot. When I go to the bathroom now, I urinate almost all of the time and the painful urge is greatly reduced and I am in the process of stopping my narotic pain pills. I am not cured, though I am much better.

If you are interested in talking to me more, feel free to e-mail me.

Amanda
([email protected])

[Kara23]

Alisha,

I have had severe IC for 9 years now. I've tried everything out there with no help! I found this wonderful doctor whom suggested we try the interstim. I had severe urgency and frequency and pain to top it all off! I had to go every 60 minutes on a good day, sometimes every 5 minutes on a bad day! I owe the success of my wedding to Dr. Friedman, my urologist in MA. He put the interstim into my body in March. Everyday seems to get better and better. I can now drive to NY (6.5 hour drive) and only have to stop twice instead of every 30-60 minutes! I didn't have to go during my photography sessions at the wedding which were extremely tedious and stressful. I made it 6.5 hours with out going. I held it for pictures before the ceremony, the entire ceremony, the recieving line, (250 people) and for pictures after the ceremony. The photographer was on a time schedule, so it would have sucked for me to have to run to the bathroom every hour. I fully enjoyed my wedding and my honeymoon! The Interstim has truely saved my life! I feel like "normal" again. I still have flares but they are nothing compared to what they used to be. I have severe IC, we tried everything, the interstim was our last stop. I can't tell you all how incredibly happy I have been the last few months. I only hope that this will continue and that it will help others! I'm happy with the results so far. I can go up to 3 hours at work now and at home I can go up to 6.5 hours. This is an unbelievable miracle! If it stays this way, I'm perfectly happy, if it get's better that's just more of a miracle! I still have severe pain at night time but during the day, I'm pretty much pain free. I also talked with my gynecologist and he suggested that I be put on my birth control pill every day and never get a period again. My IC was it's worst during my period. I pretty much wanted to die!

It's all about finding a doctor who know's what he'she is doing with the Interstim surgery. It's not an easy thing to do and it doesn't work for everyone. I was just one of the lucky ones.

I hope you find a doctor who will be willing to let you try the Interstim trial!!!

Good Luck to you!


Kara

[Cathryn]

Howdy!

My urologist has talked with me about interstim. I have tried several medications (Levbid, Detrol, and Ditropan XL) for the frequency. My frequency is about 14-15 times a day. I don't really have a problem with urgency, but I do have pain. I was in a serious car accident 6 years ago and suffered a Traumatic Brain Injury. My biggest problem in trying to return to an active lifestyle is with the incontinence (leaking). I know this is not a common symptom with IC, but does anyone on this board deal with incontinence? It doesn't happen when sneezing or coughing, it just does it and I don't even know it is doing it. I have also had the hydrodistention last November. Is there any other way to treat a nerve problem like this without the interstim? What is "Neurontin"? I would appreciate any reply to my message. Thank you in advance!

[Teri]

Welcome to the ICN Cathryn
I have had the interstim for almost 2 years now and I leak just like I did before the surgery. And, it's just like yours is...I don't even know that I am doing it. It just happens.

When I had my surgery it was because I had been thru all the treatments and I was peeing every 15-20 minutes. I could easily live with 15 times a day...I have done that all of my life and thought it was normal.

The surgery has helped some of the girls with pain but I am not one of those lucky ones. Make sure and weigh all of your options...remember, this is surgery to put a foreign object in your body.

Yes, I would have the surgery again. It has improved my quality of life 100%. I was housebound before the surgery. Now I am 'just' a pain patient.

You need to 'qualify' for the surgery, there are certain standards that must be met...ask your uro for the info and he will be the best judge as to whether or not you would qualify.

again WELCOME

[Ruth]

Cathryn, there is a surgery available for leakage. I don't know a lot about it, but the surgeon makes a sling to hold up the neck of the bladder. I know my doctor does this type of surgery. Talk to your doctor about it and also question how long this procedure is effective. Good Luck

[Teri]

PLEASE~before having the 'bladder sling' surgery do some research. I know that I have had IC all of my life but it was kept manageable until I had the bladder suspension. From the day I got out of the hospital my life and my IC turned to total CRAP....I've always said that I'm not one to say that if I had my life to do over I would do it different, cuz I'm real sure that I wouldn't....EXCEPT for that surgery.

After the surgery, and learning more about IC, I did the research and abdominal surgeries and IC just don't mix...please do more research on this.

tons of hugs

[Ruth N]

Has your doctor done a full urodynamics testing and workup to determine the cause of your leaking. Knowing the cause is really important in choosing the proper treatment or surgery. Many urologists deal mostly with prostate or cancers. Be sure yours does alot with incontinence- and if he hasn't tried medications, biofeedback and e-stim before suggesting surgery find yourself another doctor. Often urogynecologists are much more experienced in diagnosing and treating leakage and incontinece problems. Don't rush into anything. By the way I am not the Ruth that suggested the sling surgery. Ruth N