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View Full Version : Before you say I DO............


tigger_gal
06-02-2006, 03:24 PM
Hello Fellow IC'ers
Most of you know me, I am an interstim success story, However, I am not here to brag about my success.. There are a few of us here that has posted post afer post about the negitave and the postive.. But, thats not even what this post is about.. This post is about YOU.. It is your body and it is your decision to decide if you want a device in your body...
this is what you need to know:
1) You do have a choice. There are other options before the interstim.
2) Make sure you have tried every oral med possible and instills if you can handle them.
3) do you hget relief with hydro's? if yes do not do the stim.
4) Ask your doctor, Why are you pushing the interstim?
5) Ask what is your success and failure rate? can I talk to them?
6) have you gone to www.interstim.com ?
7) have you read success and failure stories here, or any where else on line?
8) Interstim leads are not attached to your nerves, but, it is possible forthem to get moved and hit them.
9) Do you want the responsibilty of having to guard you butt like it is fort knox.
10) there is a considerable amount of pain during the healing process after a device has been put into your body.
11) you must consider that weight gain and weight loss can possibly cause probles where the device is implanted.
12) you mayhave to have many reprograms if you go thru a lot of security devices. (I had to have the magnet shut off, and put on cycling because I got reprogramed and shut off and on everytime I went into a store)
13) Take your time researching.. I did over a year.
14) Interstim IS NOT the only treatment for IC
15) Ask your doctor what he knows about sacral nerves, if he says that the leads are attached to them, run.. do not walk,, out of his office.
16) Ask your Doctor how much training he received, to be able to do the interstims
17) if you are told that the interstim is for pain, or will most likely help you pain... he is dead wrong. (I know of 1 person that got pain relief)
18) Ask your doctor what the risks are
19) what are the bennifits
20) get all the free info you can on the interstim.
21) Discuss the interstim with your family and friends
22) don't get bullied, guilted or talked into or out of what you want to do.
23) know the ins, the outs, the facts and the fiction of the interstim.
24) Interstim is not for you if you do not have frequency or urgency.
25) check the fda and maude.

I hope this helps any one considering the interstim..
This is a very hot topic, and it is only black and white. there is no inbetween. you either love it or you hate it.. The ones with success love it and the ones that had nothing but problems hate it, and with good reason to. You have to have a doctor that knows what he is doing to be able to do this, so please do all your homework and research.

ChrissySunshine
06-02-2006, 03:41 PM
Thanx Tigger.....That goes along with my "new attitude" I'm getting....This is MY BODY....We have to remember that!!! I'm just learning it...part of this "new attitude" I speak of.

I just keep getting sicker and sicker all the time. Two bouts of instills now that ended up in severe urethritis, all this crap (meds, instills, procedures) we're putting in our bodies!!! I told my new doc (who I DO like) I was afraid of instills (because of my past experience), and he still recommended the Elmiron Instills. I really didn't want to do it, but as he's my doc, I really didn't even consider saying "no" after he told me of the "benefits". I really did honestly agree with him...I WANT TO GET BETTER!!

So...I went against what my body had actually already "TOLD" me the last time I has a series of instills (actually it "SCREAMED AT ME"-and it was my urethra doing the screaming)!! Well, it happened again...ended up in severe urethritis...with a foley at home for 4 days!

I've recently had that :idea: just go off in my head....Thanx for bringing this up....It's really important to us!! Whether it's Interstim, instills, hydro's, whatever "treatment" is being recommended (all the invasive procedures and meds we put into us)...I'm finding it's my BODY that's doing the talking!!! GOT TO LISTEN TO IT!! :)

icjen
06-03-2006, 02:11 AM
Thanks Tigger gal for the tips on this subject. I am one who is in the researching stage of interstim. I've been asking questions about it with my Uro each office visit and doing whatever I can to find out more info. I still have to try home instills and cystoprek, before this.

From what I understand, you can't have a cardiac pacer and the interstim. So, what happens if you go into some kind of arrythmia that requires a pacer? What if it's an emergency? I am nervous about this because though I do not need a pacer...I have already had it brought up to me for my cardiac problems.

emilyrose197377
06-03-2006, 02:39 AM
Tigger is not only for urgency and frequency it is also used for urinary retention. I agree with most of the things Tigger said. I am a success story also before I had the interstim and had severe urinary retention and had to cath every 3 to 4 hrs. With the interstim I can urinate on my own and had less uti's also. The only reason I have a uti now because they cathed me for 24 hrs after my surgery. My dr. didn't bully me into getting the interstim and It was all my decision. But I agree don't like the dr. bully if you don't want the surgery.

tigger_gal
06-03-2006, 03:11 AM
Jen,
To be honest with you I never even thought of having a pace maker and an interstim at the sametime.. I am glad you are really doing your research. You can go to www.interstim.com for free info. They will send you a dvd/vcr tape, and booklets. I did a search thru msn and google.. The bion is supposed to be simular to the interstim they insert it in the preinal area, and you would have to sit on a recharger pad 10 to 30 mins a day, the benifit of that it no wires:) When my interstim battery gives up I may consider that..
I have taped my medtronics card to my driver license, it indicates I have a device in my body and my uro's number to call in case of an emergency. This great tip came from dancemomof2.
Do a search on interstim and pace makers and see what you come up with.. I also would speak to your cardiologist and see what he thinks, and see if he can find out further info on it.

Chrissy,
It's really important to us!! Whether it's Interstim, instills, hydro's, whatever "treatment" is being recommended (all the invasive procedures and meds we put into us)...
You are very right it is important for any type of treatment that dose not involve taking a pill.. treatment is all touch and go with us, and not all of us get the same results.

Emilyrose
it is also used for urinary retention yes it is I forgot to throw that in my post last night... guess thats what happens when you posting and watching a game on tv...
My dr. didn't bully me into getting the interstim and It was all my decision. I do hope you did not take this personally! There are many patients, that the doctors are telling them, that the interstim is there only hope or the only treatment. This is not true. They also like to say it is for pain.. Any doctor that in consistantly talking about how it will help you with pain is only doing this for the whopping 70 grand they will be getting.