interstim problems

[codyryonwoodward]

I need to all ask some questions about interstim problems. I want to know if anyone that has had a interstim ever been involved in a accident (car) after having their device and then started to encounter problems. Also if after awhile your interstim just didn't seem to work as well as it did in the beginning. i had my unit put in perm. in sept 2001. Also if you need to have a bowel movement has any of you ever been shocked before getting to the bathroom. To the point you can not move your leg? thanks for any help

[ICNJess]

Hi there,

Well I haven't had mine as long as you, but is it possible that a lead moved? I haven't had those problems, but I would definitely call the uro.

Good luck,
Jess

[tigger_gal]

Did you get xray of the wires and the ipg, after the accident? you may have damaged the unit.. I would call my uro and talk to him.
Brat

[Zipper]

I haven't had my interstim that long, but have never had that problem. You should definately call your uro.

[Teri]

You really need to see your dr. I'm sure he will want to take an x-ray.

I had the device and mine quit working after 18months and even after a revision, we couldn't get it working again.

Having shocks before a bowel movement IS NOT NORMAL. You really do need to see your dr

Wishing you the very very best blink

[codyryonwoodward]

Thanks everyone for the response. I just hate to complain because in the beg. it worked so well. Then in maybe the last year or less it just doesnt work liked it did. And of course in Nove. I lost my insurance so going to the Uro is coming out of my pocket. I am trying to get disability with SS and i just can not work.. But I am going thurs to get a reprog that by itself is $50.00 I will tell my interstim all thats been going on when i go in then. grouphug

[littlebear]

Best of luck with your reprogramming! Sending you my best wishes, little bear

[tigger_gal]

cody, for oyu program, sit, stand, lay down then sit up and get up and stand and sit again lol I know it sounds silly but make sure the stimulation dont move on you, while you are there. also you can try cycling 30 sec on and 10 off and have the magbets shut off,
hugs good luck let us know
Brat

[Teri]

Since you have no insurance, once you have your adjustment, hang around in the dr's waiting room for as long as you can. Sometimes after an hour the stimulation will move to where you don't want it to be and that would force another adjustment. So, take a book and park it in his office for awhile so that you won't have to go back and drop another $50

sending tons and tons of prayers
and great big fluffy hugs~

[icnmgrjill]

Teri,

Excellent suggestion about staying at the office for an hour afterwards.

Having a shock with a bowel movement is NOT NORMAL. Between that and your other concerns, I really hope that you will file an adverse event report with the FDA so that they can log this type of event. Your doctor may not do this... and it's so important that we have an database of adverse event reports.

You can find more info on that at: http://www.fda.gov. These reports are VERY IMPORTANT to do because it gives other patients the chance to learn from your experience.

Jill

[tigger_gal]

Teri
Thats a great idea too to stick around... I always sit stand bla bla bla lmao to make sure I am comfortable with my reprogram.

Cody
No getting a shock is not normal with a bowel movement but this all occured after your car accident if I am reading your post correctly. I think the wires may have moved or damaged the device.
Jill
WHY would he need to file a report with the fda??? there was not any problem with the interstim until the car accident.
I agree that "Failed" devices need to be reported to the fda for bettering the product, however, in this case it has failed do to an accident, no different if you fell on your butt on ice, it may damage it... It would "not" be a device failure. It would be an accident that caused the device to be moved, or damaged. I totally disagree.

Sometimes the interstim dose not work and I wish it did for everyone.. I send out lots of hugs to those of you have had failures.... and hugs to those (like me and jess, and many others) who have had a successful implant. In my heart of hearts most failures are dr errors. I also want to add that the interstim is an option like botox, elmiron, hydros its a treatment that may help and may not.. There are many of us that Elmiron was a failure and hydros and botox, but no one is posting call or write the fda.. is that any different?
Brat

[jen75]

Cody,

I've been shocked like that from Interstim, while urinating. (Makes you not want to do that again toilet ) My leg (left) tends to double up underneath me though. I haven't been in an accident of any kind. For some of us it just starts doing crazy things.

If you report to the FDA there are plenty of spaces to write in the fact that your device started malfunctioning after a car accident, and that may or may not have contributed to your problem with the device.

I reported problems with my Interstim unit to the FDA in November. I received confirmation from the FDA, of my "complaint" last week. I am really glad that I did it. When I had Interstim done four years ago- I couldn't find anything negative about it. I was poorly educated about Interstim partly because of the lack of information out there. It's nice to know that reports that are made can help educate people considering Interstim. They need to know that some really strange stuff can happen-to a small percentage of people. It might influence their decision and it might not, but at least they have the opportunity to make an educated decision.

BTW- Wishing you luck with reprogramming!

Jen

[icnmgrjill]

Filing a report with the FDA is not just about failures, but also about adverse events, weird experiences and potential failures. If a patient is having shocking of any type, I think that it should be reported to the FDA. After all, how can they adequately assess the device complications if patients don't tell them. Yes, doctors can also file with the FDA and the company too. But, it seems that some just don't bother with it. As a result, important, valuable information is lost. A report with the FDA isn't about blame. It's just saying "this happened."

Jill