Insterstim is Wonderful!!!

[Kara23]

Hi fellow Interstimers,


I wanted to report some more good news with my Interstim. I ACTUALLY WENT DANCING!!!!!!
I can't even believe it! I went out on Saturday and danced my heart out! I have VERY SEVERE IC so this is truely AMAZING!!!! I was never able to do this before the Intetstim. I had to pee a lot b/c I was drinking but that is normal. The Interstim helps that horrible pain I had whenever I tried to move. I was able to dance for 2 hours. I still have yet to see a movie. I'm thinking of doing it this weekend! It's still a miracle. I'm going to hate going off of it, if and when I decide to have children. My life is so much easier to live now. I just hope the machine keeps on ticking and doesn't break or move or do something bad. But for now, I'm trying to be happy with each good day the Interstim brings me.

Kara

[SueP1]

Wow, you can drink, too? My husband was having pina coladas while I was having bottled water on our cruise!

[oneillii]

Kara that is so AWESOME! You go girl! I'm just delighted for you...

Susan

[DebbieB]

Hi Kara:
I know how you feel about the InterStim..
I am blessed each and every day of my life with it for sure !!!

I have my life back again and almost able to do anything now after my little problem breaking my lead wire...
I am back and running as good as new too..

Just so happy for you Kara !!! :) :)
You go girl and enjoy yourself too..

Hugs: Debbie

[lLinda]

I am reading lots of stuff about interstim, but it all is years old. My doctor is considering it for me, but I am leary after reading all the negatives here. Has anyone had any recent (2006) experiences with interstim? thanks, folks.

[marsi4]

Kara you say that it helpes you with the pqin when you have to move. Did you only have pain when you moved I don't understand. You say you have severe ic , did you also have severe constant pain which the Interstim has helped. From what I have read it doesn't help with pain only frequency. I'm glad though thayt you are doing better. I hqve a lot of pain and my doctor recommended it but I,m reluctant to have it done since frequency is not really a problem when I,m not in a flare.

Marsi4

[tigger_gal]

Marsi4
I think Kara is talking about that horrible urge pain. I had that it just stopped me in my tracks.. IT didn't help the reg bladder and flair pain tho..

If your doctor wants you to get the interstim for pain, put on your running shoes and get away from him.. It is only for frequency and urgency, and some rentention.

[Sarojini]

That is AWESOME. :) :woohoo:

I just got my trial stimulator put in yesterday, and already I too am seeing a difference. A big one. I SLEPT 9 HOURS STRAIGHT LAST NIGHT WITHOUT GETTING UP TO PEE!!!!!!!!!!!!!!!! :woohoo:

[GriffsMommy]

That is awesome Jen :woohoo: So happy for you!

[tigger_gal]

:woohoo: :woohoo: :woohoo: :woohoo:

[Bessie]

:woohoo: That is wonderful :woohoo:

[Kellygreen]

9 whole hours?!?!?!?!? WOW that would be like heaven!!!

[Bdelaune]

YOu asked if anyone had good stories to report about interstim. I have had one for almost 4 years, and it is wonderful. I can go to the mall and not plan my shopping around where the bathrooms are located. And, i only get up once a night now! I tried all the regular treatments (meds, Elmiron, DMSO) with no improvement. The interstim has helped significantly with frequency. In fact, i can now "hold it" sometimes like other people do! While it is not intended to help with pain, i do find that my "flare ups" are reduced. If i drink or eat bad things (tea, coffee, citris, red sauce, etc), i still have to go a lot more. I just monitor my food like i did before, but its not the end of the world now if i have something bad. Before, i could not have a glass of iced tea unless i planned to sit at home the rest of the night.

I had great results with the Interstim. My only problem was the battery life. It was supposed to last 5-7 years, but i had to have it replaced after two years. I think my new battery is supposed to last longer, and they changed the position of the lead. Fingers crossed it lasts longer!

Despite the battery problem, i am thrilled with my decision to try the stimulator. Even if i had to change the battery every 2 years, it would be worth it.

Good luck, and i wish you all the best.

[patricia1]

Bdelaune I see you live in Louisiana. I do to and I also have the Stim. In what city did you have yours done. I think the battery life depends on so much different things. Like if you have it set where the unit is on all day 24 hours, or if it is set to cycle, like so many minutes on then off for so long. And then again maybe you just had a bad battery. With all the problems with my units (i have had 2) I never had battery problems.

I am happy for you that yours is working so well

And to JEN all I can say is :woohoo: :woohoo: :smile tee I know you were hoping for such great results and I know the perm will go the same way

[Bdelaune]

Patricia1, i had my surgery done in New Orleans by Dr. McSherry at Memorial. In fact, my battery replacement was done about 3 months before the hurricane destroyed Memorial! What about you?

[donnes007]

Hey ladies I am in Louisiana too. I am in Lafayette and my interstim is going to be done by Dr. Marinkovic. Let me know if you guys have heard anything about him.

[Claredale]

Kara and Jen...I am so glad that you both are having great relief. I remember when I first got mine and felt that since of the freq/urg letting up! It is so wonderful to go to the movies now without needing to pee and waiting for a good moment that I wouldn't miss something important. For anyone that saw We Were Solders with Mel Gibson. I remember going to the bathroom every 15 minutes or so and I knew it was getting towards the end, so I had to pee very badly so at the part where they were waiting at night to make their final battle against the much more powerful Vietmam army, I decided it was a good time to go potty. I walked back into the theater and there were the credit going up. Missed the entire great ending.

Again...I am so glad that ya'll both have good news.

[Claredale]

My doctor made a point to make sure I understood it wasn't proven to help with pain, but she had a few patients that did have their pain greatly reduced. I talked to several of them before my surgery, so I knew the odds, etc. My doctor's thoughts as well as mine now is that since the implant helped with my freq/urg it kind of took me out of the pain cycle at times. Because alot of times, I would feel like I needed to go, but could either pee just a few drops or nothing at all which caused more pain. I too suffered with constant pain before the implant.

I still have flares at times and still take pain meds pretty much everyday since I still have pain at night. Sometimes bad ones that last for several days, but they usually come when I have gotten myself totally exhaused or stressed. Believe me, my life is absolutely different since the implant. I have to remind myself of that when I am in one of the flares. But before the implant, there was nothing about life that I enjoyed. Even staying in bed and taking strong pain meds wouldn't bring me any relief. I had to quit my job and really lost contact with much of the things I treasured in life.

I have had my implant since 2002.

[patricia1]

HI guys I live North of both you. I live an hour south of Shreveport, in Mansfield LA. I had mine done by a doc in Shreveport, but when I started having problems an lost my health insurance he did not want to help me. SO I had to wait 8 months for a new doctor with experience of the InterStim to come to LSU Charity hospital up here. I still see him and he is doing my removal on the 15th

[Georgia L]

Thank you for your positive and upbeat info on interstim. Do you mind letting me know the exact details of what to expect with the trial one and the implanting of the permanent one? I am scheduled to get the trial one done next week.
I suffer horribly from IC, fibromyalgia, IBS, and arthritis.
I am praying for a return to a "normal" life.
Thank you!

[Georgia L]

Where you able to return to work after the interstim implant? I am new to this site and really am in need of "talking" with others who can understand what I am going thru. I have recently had to take a medical leave from my job... teaching 2nd grade... and my life is so interrupted by the contanst pain, burning, and frequency. I am praying that the interstim will help me get back to my job... and well... my life.
Thank you!

[donnes007]

I just had the trial done and it is a god sent. I am pretty much pain free right now except for the feeling that my butt has been attacked my a cat. The trial sucks cause of these wires, but it's all worth it! I am so happy!!! So far I would tell everyone researching this possibility- just do it. I love it so far. Will keep ya posted.

[Claredale]

I was able to return back to work. I am working a different job since my doctor advised that I needed a less stressful job. Especially for the next few months after the surgery.

The trial was as other people put it "strange" mainly due to the wires sticking out, etc. Trying to get a shower, etc. I was lucky in that I got to stay off of work through the trial and 3 weeks after the permanent implant since my body is so prone to infection, my doctor was very clear on that. I don't remember much pain, but I was on meds. I remember getting home from my trial surgery and getting on my computer to answer a few work emails and some other things that I could do over the internet. My boss saw that I was working and called my house to tell my hubby to get me off the computer and rest!

I also have read that some people have had their interstim removed, but I haven't ever really understood why. I know that each treatment is different for all of us, but I still go for adjustments at times and I have had it for almost 5 years. And have been told that there are so many combinations still to try.

There are times that the implant gets on my nerves due to the pulsation and normally just turning it down works, but there are times that I just turn it off for a few days and I am fine. Sometimes when I am in a flare, which has been a while (knock on wood) my pelvic area is so sensitive that I can feel it and it's like on "my last nerve" so to speak. Otherwise, I turn it up or down depending on my pain level versus my ability to empty my bladder. I have also had to turn it off (very rarely) due to retention. Still haven't figured out why that happens, but it's another thing to be aware of.

Keep us posted!

Tracey

[topcop229]

I have had success just in the few days that I've had my trial in. Yes, it's irritating with the box and the wires, and my back is itching like CRAZY from all the tape and gauze and whatnot, but I have had a definite change in my symptoms, for the better.
I agree about kind of breaking the pain cycle, because before when I would void, I would ALWAYS suffer a huge spike in bladder spasms afterwards, and that has definitely improved.

[verdicries]

Hi there,
Does the interstim hurt after they put it in? How does it help w/frequency/urgency?
Thanks.
Tracy