How has Interstim improved your life?

[jjmowen]

I would like to hear success stories about Interstim. I have researched a lot, have heard many bad stories, now I'm looking for success stories.

My doctor thinks this may be my last option. We have tried everything else. My life is bearable only if I stick 100% to the diet, don't exercise, or clean my house, don't drive anywhere, I cannot even walk around the mall without problems. I am basically useless except at work, and the only reason I can still work is that I sit all day and work on a computer. My IC is getting progressively worse. Every new treatment helps for a while then I get worse than I was before. I know there are risks, but I'm willing to take them if my quality of life will be improved.

Please tell me How has Interstim improved your life?

What activies can you do now that IC prevented you from doing before?

Does it help with urgency/frequency that is food related? How about activity related? Can anyone stray from the diet? Can you resume normal activies? Can you travel?

I would love to hear your stories.

Thanks.
Jenel

[dancemomof2]

Jenel,
I was totally againsst Interstim, refused to talk about it with the URO for months. I had a baby last June and during and after pregnancy my IC was out of control. I tried every drug combo possible with no luck. The Dr told me I would know when I needed it and would ask him for it. I was voiding over 60 times a day and 10 times at night. I was getting no rest with a newborn and voiding that i was a miserable mess by November. I called the URO and started the paper work. After months and months of research, I had decided that I was at my worst and whatever happened happened. I had my trial done jan 4 2005 and and immediatley had relief. I made it 2 hours home without stopping and was amazed ususally this trip is at least was at least a 4-5 time potty stops. I had great success and Jan 18th 2005 the permanent impant was put it. My voiding has been dropped to about ever 60-90 minutes and twice at night. I still flare and have trouble with foods, but can endulge a little more then before. Sometimes I flare and other time I am fine. This is a life choice and you and only you can make.

I was scared from the horror stories at first and finally had to get over everything I had read and make this choice myself. I had my implant at WV university hospital and would highly recommed a consult there if you are close enough. I noticed you were from Ohio. Feel free to PM me if you have any questions as the Interstim is a very controversial issue with some. If I didn't answer any of your questions please feel free to ask. I will give you an honest opion. I will not sugar coat anything to convince you to do this.

[tigger_gal]

Please tell me How has Interstim improved your life?
my urgency was so bad I literly got sick and felt like I was going to pass out.. I take my husband to work 7 miles and had to pee 3 times on the total of 14 miles round trip, now I can make it with out stopping.. I have had thse days thu where I did have to stop
What activies can you do now that IC prevented you from doing before? to be frank I can live.. I can leave my house and not have to pee b4 I back out of the drive way. If I have to void I can actually hold it for a lil bit.
Does it help with urgency/frequency that is food related?[COLOR=DimGray] if I was told this device would only help my urgency I would be there to have it done.. I have a 3 ounce bladder.. but I went from 30 plus to 18 times aday, my frequency has gone up, but I need to go and get reprogrammed.
How about activity related?
other conditions keep me from being active..
Can anyone stray from the diet?
I am a bad diet person... I know which foods that bother me and try to eat them less often
Can you resume normal activies?
most diffently, your doctor will tell you how long before you can resume normal activites..
Can you travel?
When I went to my grandma's funreal 3 1/2 hours away, I only had to stop 2 times on the way there. I often wonder if it depends how many bumps are in the road, as to how far you can travel before you have to pee lol :hmm:

I have had great success with mine, remember you and only you can make a decision for this.. I too got a lil frenzied with the horror stories.. but I went ahead, and have no regrets.

Brat


Where do I begin. It took me a year to decide to have the interstim done. I took a lot of time to make a very large decision that would affect my life greatly. I did a lot of research on having a device put into my body. My uro (which by the way is my god) is the most wonderful man that walks the earth. He explained to me and my husband in detail of what would take place during stage 1 and stage 2 surgery. There were no questions that lingered in my mind after I had left. I was clear on all the details of everything before I left his office, including pre surgical insurance information. I had taken in a list of questions with me that were all answered.
On April 2nd 2003, I had the stage 1 surgery done. I met a rep from Medtronics. She explained everything to me in detail and was wonderful. That is where they put in the wires inside my body. My muscles and my nerves did not respond (even with the device turned up to the highest level) and, they had to end up putting the leads in by x-ray. My uro was upset by this and only had the hopes that I would respond to the interstim after surgery. The incisions were fairly small,one above my tail bone, one on my right butt cheek, and then ran the lead to the other side and out my right butt cheek (sorry didn't know any other way to explain this). I had a 3 foot lead out a hole there in my butt and was connected to the grey box. After surgery I was very, very numb.. When I voided I could not feel myself wipe, that lasted for about 3 hours after surgery....

April 3rd 2003, I turned myself on , and felt the pulsating of the interstim in my rectum. When I laid down, I felt it in my butt and lower back. At first it was not even on 1. As the days went on I got it far up as 2 - 2 1/2..tops as my body adjusted to the pulsating and the anesthesia wore off. My voiding went from 21 to 30 down to 7 to 10 times a day. Oh my god, what a difference and a relief. My stage trail lasted two weeks.

April 16th 2003, back to the hospital where I met with my rep again and again explained to me all about the interstim device and my remote, antenna and magnets... everything. She was very informative. They re-opened the incision on my right cheek and implanted the device. I went to the hospital at 6:30 am and returned home by 11:15 am. It went very well.

April 18th 2003, still sore as expected for what I have been through. But all is grand and I am doing well. If you are thinking of having interstim done don't hesitate to ask me any questions.. I had no problems and am recovering very well. Today Feb 2004, still having great success with my interstim and would do it all again with out a second thought.

Hugs to all
Cindy Travis

today July 16th 2005 still having success

[DebbieB]

Hi Jenel,

Well I would look into getting lots of information and read all you can about the InterStim also try to meet others that had the InterStim done by your doctor and talk to them about it..
One big thing we are all so different in the InterStim Implant it does not work the same on everyone..

I have had my InterStim Implant now over six years I am doing just wonderful with the InterStim...
I also live in Canada and we "only have five doctors" in all of Canada that only do this procedure and it is only done by these doctors also..

One more thing I was told right up front it was not for pain and I had passed out from the most awful pain with my IC before the InterStim ....

Please tell me How has Interstim improved your life?

It has improved my life almost back to normal and I am back working and I can do almost anything now..
I am not any medication since having the InterStim Implant...

What activies can you do now that IC prevented you from doing before?

I don't have to worry about finding a bathroom fast anymore..I was able to go
back to work after 18 years of being ill with IC and bladder problems..


Does it help with urgency/frequency that is food related?

I was going 63 time a day and up to every 10 minutes during the night , I never got any sleep at all.
As to food related I am able to eat almost any thing I really have not follow the IC diet at all..

How about activity related?

I am very active I am doing excises on a bowflex..
I am able to do almost anything.

Can anyone stray from the diet?

I have ...again that is different in everyone too...

Can you resume normal activies?

After the first three weeks I was out driving and going shopping...but again we all heal in different ways with any kind of procedure..


Can you travel?

Yes I travel all the time and it is my hubby that has to stop to go to bathroom now..


I would say my is a wonderful success story and I would do the surgery over in a minute if I had to do it again..

All the best in your decision and remember "only you" can make that decision in this procedure..

Hugs, Debbie

[SrMaggie]

I was seeing a uro in town. I thought we had exhausted every type of treatment. I had DMSO, Elmiron, diet...playing around with it for four years. I had Dr. Moldwin's book and saw InterStim therapy. I asked the uro about it. He told me it had not been approved for treatment of IC and that it was experimental. I didn't really believe him and went looking on line for physcians with InterStim experience. I found one. Got an appointment (it's about a 3 hour drive). Told him my story. He agreed. I have had intermittent success. But I am sleeping throught the night (with some help from other meds, also), I can make it to my appointment with only stopping once, instead of the 3 or 4 times. It has cut the number of voids in half or sometimes even less. I'm working on pushing the stimulation up little by little as the dr. said that the nerves get 'tired' and start to take the stimulation for granted, so to speak. So they need to continue to increase the stim in order to feel it. I'm glad I have it and am looking forward to the increased freedom it should give me as it is reprogrammed to fit my needs.

[tigger_gal]

My doctor has never told me to turn mine up.. I have hadmy interstim for two years and I have never turned it up and left it up to where I could feel it.. my doctors advice to me is "Rule of thumb, You do not have to feel it for it to be working".
Also it is not for pain if you get pain relief its an added bonus (I did not get that perk) nor is it fda approved for IC, but it is FDA approved for frequency and urgency.
Brat

[patricia1]

I agree with Cindy mine told me that also. You dont have to feel it for it to be working. And I also did not get the added perk of helping my pain either...

[dancemomof2]

I was also told you don't have to feel it for it to work, and I didn't get the eprk of pain control either. You would think the money they cost you would get a fringe benefit with it.

[ICNJess]

One word of warning:

If you plan to lose weight with this unit, be warned that weight loss can affect the unit. My unit has migrated twice and is a literal pain.

Just wanted to warn ya.

[tigger_gal]

Jess is correct.. I did lose a massive amount of weight and my unit stuck out and I could feel it.. but it didn't move out of pocket.. Discuss weightlose with your doctor before you get the interstim.. I did gain all my weight back and then some.. I picked up what jess didn't want lmao.... and it did not affect my interstim..
Brat

[patricia1]

I to had the weight loss issue also along with Jess and Cindy. So be aware. If you want to lose weight it might be a thought to do it before having the stim put in. I lost close to 40 pounds so a big weight loss could be a possible issue....

[jjmowen]

Thank you all for your imput. I have researched a lot. I'm not quite ready to say yes, but I am making an appointment with the doctor my urogyno recommended to do the implant. I want to see what he says and get some patient info, etc. One thing this website is so good about is letting you know what to ask. I would never have thought of some of these questions. All of your imput lets me know what else I have to do.

I had a Hydrodistention done on June 17th. This was for therapy reasons, not diagnosis. My first Hydro was years ago and I felt relief for a while. I was hoping this one would give relief too. But I only felt better for a week or so. That was very disappointing. I've been doing DMSO for about 2 years with some success. But the last 6 months or so it's not as effective. I'll feel crappy for a week after, feel better for about 2 weeks then start feeling bad for another week until time for treatment again. I take Elavil (there's my sugar craving) and Vesicare (don't think that helps at all). I've tried all of the other combinations of medicine with not much success. The Elavil is the only thing I really think works. If I go off the pain is awful. Plus my Migraine's are mostly gone, so that's a plus. I don't really know how many times I go per day, I do know that I limit my intake of water so that I'm not up every 10 min at work. I know that's not good, but what else do you do?

I do need to lose weight. I have been gaining steadily the last year or so. My IC has progressed so that exercise is totally out of the question. It sounds like I should lose before the implant. I know I can it's just so hard. I cannot eat fruit anymore, and all I crave is pineapple. So I sit and eat other sugar that doesn't bother my bladder and put on weight. I would say about 40 pounds would be good. I'll try to work on that now.

Thank you for giving me so much more to think about.

One more question, for people with Interstim, did your symptoms get progressively worse, or did the IC hit you all at once? My IC has gotten much worse over the years, I'm hoping that with Interstim that would not continue. Any experience with that?

Thanks so much.

Jenel

[dancemomof2]

Mine became progressively worse, that is what made me change my mind and go for this procedure.

[jazz]

Hi
I just had my Interstim put in May 25th. It has been the best thing I have ever done. I have had IC since I was 20, today I am 47. :birthday:


I had horrible urgency that I felt like I had to hold my self all the time. I would sit on the couch with my heel pressed against my urethra to help with the severe urgency. I peed 20-30 times a day and 6 at night. I had been on Elavil to help with the sleeping thru the night. but after years on it I had to keep increasing the dose and gained weight and I didn't like the long term side effects of it so I came off that 4 years ago. I have now lost the weight and went from 158 to 125. I am 5' 1 I have alot of pain, which the Interstim doesn't help, but I knew that. but I was just looking for any relief I could get. I now have to remind myself to go to the bathroom. The urgency is gone!!! :woohoo:
I pee 7 times a day, once at night. It has been wonderful. I can drive on long trips...not plan my day around the bathroom. I can deal with the pain as I am on meds that help that so it has been a great thing for me. I had to look at why I needed the Interstim. What were my worst symptoms..what made me miserable.. I researched it for a year...and finally made the decision to have it done. Since having it put in I have played with my settings turning it up and down and have found the settings that give me the best results. I wish I had done this earlier..but am greatful I had the opportunity to have a Dr around that specializes in IC and this procedure. I felt totall confident having it done. I was soo excited the day I had the temporary done. I was in the OR laughing and cutting up and everyone was like boy you are happy today?? I said yes. This is the first day of my new life!!! I told them about my symptoms and they couldn't believe what IC was.. When I went back in a week to have my permanant done I had the same OR people and they were excited to see me come back and so happy still! So it was a great day to have the permanant done. I have not had any problems with shocking or other things I had read about. I drive with it on. work with it.
So all I can say is so far it has totally changed my life!!

Jazz

[Texas Baby]

Jenel,
I am new to the forum. I just had to reply to your question about the interstim. I had mine for 2 years. I could not believe the differenc it made!! I felt like my life was better. I voided less and was virtually pain free 90 % of the time. I had a freak accident and contacted staph infection . I had to have mine temporarily removed. I cannot tell you how miserable I am without it!!!! I will be getting it put back in Sept. I can't wait. I am ready to be pain free again and to feel "normal". Even My sex life improved while I had tha implant. My husband was astounded at the differnce having that implant made. I wish you all tha best. Glean as much information as you can before you make the Decision. I can tell you however it worked for me.
God Bless!
Eva

[SrMaggie]

That's wonderful. I, too, have experienced the decrease in voiding and a lessening of the urgency. Now, when I have to go, I can wait another 15 minutes or even 1/2 hour.
Having been relieved of the pain, though, is a happy side effect, but not something that is 'promised' by InterStim. As has been said, InterStim is not meant to relieve pain. However, I think that by reducing the number of voids, it lessens the amount of 'usage' of the area - wiping etc. - so that the irritation is not so much - ergo for me less pain, also. I can work now, for at least an hour or more, where before InterStim, I only had about 20 minutes. The wonders of Science.

[Texas Baby]

I hadn't noticed the headaches until this last time. I have had 1 migraine and several severe tension headaches. Tha pain and voiding really suck too! But we have to plug along. I am grateful to have this chat room and people like you to talk to. I hope you have a good week!
Eva

[Texas Baby]

I forgot to say that next month they will be putting my implant back in ! I can't wait. I truly did not realize what a differenc it made! It really helped my pain about 95%. I was amazed!

[patricia1]

Eva I am really happy that you got pain relief from the Interstim...I did not get that with either of mine...

[DebbieB]

Hi Eva,

I am so sorry that you had an accident and had to have the InterStim removed...

I had a fall just before my second year check up and had to have the procedure done over again as they found out that my lead wire had crack in half at the middle of the spine..
So I had a new lead wire replaced and I am doing just wonderful..

I have had my InterStim now just over six years and everything is going just wonderful and yes I am another one that was help out with my pain, I have not had any pain since the InterStim and I was well aware of this before doing procedure..

I wish you all the best in Sept and that all will go well for you Eva...

Hugs, Debbie