Questions about Life with Interstim

[DanaG]

I had an Interstim a few years back which I had had removed for various reasons....(rep turned unit on way too high first time and my body went into shock which traumatized me, first sacral nerve didn't work, so had revision surgery, lead moved and they wanted another revision surgery and we could never get it work...I hated that I could feel the unit by hand or when I leaned up against a counter and had to live my life with this thing....so I had it removed out of overall frustration). I have continued to get up every hour of the night to go to the bathroom and have no quality of life and I have decided that I just cannot live life like this anymore. All I do is sleep and think about wanting kids one day and not having the ability to care for them never being able to get out of bed. I have tried all of the conventional methods of treatment which is why I did the Interstim in the first place and the test trial of the Interstim is the only thing in 10 years that worked even though the implant did not. So in considering doing this again, I am thinking about having this thing for the rest of my life and I had some questions for anyone who has the Interstim implant:

- I know I got used to the pulse feeling, but does it go away that you truly don't even know it is there?
- Are there ever times you need to turn the unit off? ie: sex? childbirth?
- If your unit is functioning properly and you have no problems, have you ever randomly had any problems with it just shocking you out of nowhere or something like that? Do you feel you need to carry your remote with you everywhere you go just in case something happens out of the blue?
- I know we cannot have MRIs with this device. Does this concern anyone? What if you needed an MRI? What are the alternatives? From my best memory, we do not wear ID bracelets, so what if we were in a car accident or something and were put through an MRI without our knowledge?

I am very fearful of having a working device inside of me forever that potentially has a mind of its own.

Any feedback and the offer of any other information is very appreciated!

Thanks so much!

Dana

[patricia1]

First so sorry for the problems. I have had my first InterStim since Sept 2001, had bad car accident and leads moved, revision was done in May 2005. I am not happy still with my revision and it is not working properly for me. Here are my answers to your questions:

- I know I got used to the pulse feeling, but does it go away that you truly don't even know it is there?

At times I do not even know mine is pulseing, unless I turn or sit a certain way. The doctor's and reps have said you dont have to feel it for it to work...Wonder about that since neither of mine have worked well.

- Are there ever times you need to turn the unit off? ie: sex? childbirth?

I only turn mine off if I want a break to see if when I turn it back on if it will work better. I keep it off for 8 months when the leads moved. I never turn off during sex

- If your unit is functioning properly and you have no problems, have you ever randomly had any problems with it just shocking you out of nowhere or something like that? Do you feel you need to carry your remote with you everywhere you go just in case something happens out of the blue?

First question no, my problems were caused because of lead migration. Yes I do because you never know if it will shock you or turn off because of some store alarms.

- I know we cannot have MRIs with this device. Does this concern anyone? What if you needed an MRI? What are the alternatives? From my best memory, we do not wear ID bracelets, so what if we were in a car accident or something and were put through an MRI without our knowledge?

This is what concern's me the most. You still do not get ID bracelet, but you do get a card that I carry everywhere with me. I hope if I am uncon. someone will look through it or talk to my family before doing this on me. Dont know what alternatives to an MRI would be other than an x-ray or cat scan and I dont know about that even.

[emilyrose197377]

I have the interstim. I never turn it off.as far u need the unit off for child birth I never shut it off during sex. I never carry my remote with me unless I am going to the dr.'s for a reprogramming.I never have got shocks i just get a burning pain at the lead sites at times not constant.I wear a medical alert bracelet that says I can't have mri's. what is equavailnet is a ct scans to a mri.

[melissacahill20]

I have had my interstim since Dec.05 and I would not recamend it to anyone.I have had more pain with this device then I did with out it I have had my IC for 9 years and I know it sounds crazy but for me I felt more normal going pee every 20 mins. Then I do now.I have had my device turned off since Friday and I have had hardley any pain at all.I still go pee just as much I still get up 8-9 times a night to go pee.I have had pain aound the incision site and pain in my bladder and uretha and then the pain goes done my leg in my foot and toes and I can not move them until the pain is gone.If you had this done before and it did not feel right to you then why put your self through it agin.The temp. inplant worked great for me but it changed once they put it in perm.I do carry my remote every where because you never know what will happen my pain got so bad I could barley walk.I would tell you if you do not feel comfortable with the idea of have a object inside you try everything else under the sun and do not get the interstim.I have tried everything and still am I am seeing the surgeon today and I am telling him I want it out with no if's and's or but's.Please take your time on making your decision do not jump on to .I know it sounds wonderful but it is not that great when it causes other serouis problems.

[Imustpee]

I did alot of research on interstim because I was at a crossroads of either interstim or bladder removal.....I had a bad feeling about interstim..I read all the booklets with the fake happy smiley actors that said interstim is a "Miracle"..I watched the DVD with all the fake happy smiley actors that said interstim is a "Miracle"..I called Medtronics and talked with them...because one of my 7 uros said "Lesa, you are the PERFECT canidate for interstim because you have pain"....Hummmmmmm....didn't I read/hear that it does NOT control pain? Why yes I did! Did I read an article here on the ICN that some dr's were getting "Kickbacks" from medtronics to put in the interstim? Why yes I did...hummmmm Did I read/ hear that interstim is not FDA approved for I.C.? Why yes I did! Did I also read postings from several members here that are living a nightmare because of interstim? Why yes I did.......so...I read/ heard nothing that would EVER convince me that interstim would help me at all and I just found the best Dr on the west coast to removed a worthless bladder from my body and now I am living the good life...

[emilyrose197377]

Lesa,They are some sucess stories out there also. I agree with you the interstim does not treat Ic or the pain of ic. I agree it is not for ic it is fda approved for urgency and frequency , also urinary retention. I also agre the interstim is not for everyone I would do research on it and only have the interstim if you tried every othe treatments out there and if they failed consider it.

[DebbieB]

Hi Dana,

It been a long time not hearing from you, I often wonder how everything was with you !!
I don't know if you remember me but I am one of old one with the InterStim Implant now over seven years..

I know I got used to the pulse feeling, but does it go away that you truly don't even know it is there?

Well I still feel it at time but it has been so long I don't even think about it..

Are there ever times you need to turn the unit off? ie: sex? childbirth?

The unit is suppost to be shut off for childbirth but I never shut it off for sex at all in all the years..

If your unit is functioning properly and you have no problems, have you ever randomly had any problems with it just shocking you out of nowhere or something like that?

I had some shocking in the early part of having it but it was due to needing to have an adjustment that is all for me any how !!

Do you feel you need to carry your remote with you everywhere you go just in case something happens out of the blue?

I just take my remote with me to the doctor's office and if I am going far away on trip ..

I know we cannot have MRIs with this device. Does this concern anyone? What if you needed an MRI? What are the alternatives?

That has never bother me as they are other ways as other have said x-ray or cat scan ...

From my best memory, we do not wear ID bracelets, so what if we were in a car accident or something and were put through an MRI without our knowledge?

We have our ID card but I also have an ID bracelet not to have a MRI on it...

Also Dana I have heard the procedure is much different then it was when I had it done over seven years, now I am watching my battery life span now..

I wish you well on what decision you make on it all I know that many of us have lot of success with it ...

Cheers, Debbie

[Big Red]

I have had my unit for 6 yrs. I don't turn it off unless I am having surgery. I notice the bump in my rearend cheeks more than I did at first but part of that is from weight loss. I have nevered been shocked. My doc. hasn't checked the leads since surgery. Some days I feel the pulsating more than others. I also wear an ID braclet with no MRI"s. Since I do water aerobics I thouht that would be smart, also for all activites.The only other time I turned it off was I wanted to do a void diary with it on and with it off. Did have some difference but not much.

[ICNJess]

It has to be turned off for pregnancy. I've had mine turned off for a long time, though, other than for pregnancy. Mine's a nightmare.

[Marcie920]

I had sucess with the interstim.I agree the interstim is not for everyone. I would do your research on it to see if it is right for you. The interstim is not for ic pain. It is fda for urgency and frequency also it helps with urinary retention. it should be used if you have failed to respond with the many prescriptions that is used for urgency and frequency and also urinary retention meds. In the end you make the right decision that is right for you. In the end you have to live with the decision you make. I feel opinions are nice but what happenned to others using the interstim might not what happens to you.Good luck with the decision you make .

[dancemomof2]

This is a choice that you need to make, try by asking your ? to Medtronics your Dr even other Dr who do Interstim to get the answes your looking for. Good luck

[green_the_fish]

Hi Dana! I would like to stat off by saying that I have absolutely no experience with Interstim, and honestly don't know that much about it.

I'm replying specifically to your inquiry about medical alert bracelets. Your doctor isn't going to assign you a bracelet, but you always have the option of getting one. Personally, I wear two medical alert bracelets, one on each wrist. One of them says that I have interstitial cystitis, so I may be taking Elmiron. This is important to me because Elmiron has blood-thinning properties, a property that could prove to be significant should I have to undergo emergency surgery.Most people who are on Elmiron don't wear medical alert bracelets, but wearing one makes me feel safer.

The other says that I have bipolar disorder and may be taking Lamictal. Lamictal is known for its potential to interact strongly with other meds, including some that may be used in an ER setting, so I feel better wearing it. Again, most people taking Lamictal don't wear medical alert bracelets, but it makes me feel better.

There are now hundreds of different options for medical indentification. It is definetely worth Googling. Not all of them are expensive, either. I got mine off the internet for five bucks each, including personalized engraving.

Getting the interstim is a personal decision that you have to make, but I urge you not to let concerns about medical indentification scare you away from it. You always have the option of taking the initiative and purchasing medical identification for yourself.

Good luck with your decision :grouphug:

[Georgia L]

Hi,
I have been reading many messages about the interstim on this site. I have been doing research since last July. I have found research online that says some patients do have relief from pain with the interstim. Your messages seem very positive and that is what I need so much right now. I have had to take medical leave from my job. My entire life has been impacted by the pain from IC and the sluggishness from the meds. I am speaking in faith in God that the interstim will be the answer I need to get my life back. I really need to hear positive results about interstim and I need to know more about the actual process of getting it put in. I am having the trial one done next week... what should I expect next week? ... the week after... what if I get it permanently... what is the surgery actually like?
I have a good doctor. I know that he has performed these procedures many times and he did not push it on me.
I know that the postings are to be of help... but right now I am a bit scared and I need to talk with someone that can alleviate my fears and inform me.
Can you do that? please?
Thank you so much! GL