Interstim Reprogramming Experiences

[Puppy]

:confused: In November, 2003 I had the Interstim permanent implant done. Since then I have had 4 adjustments. All the adjustments seem to be basically the same. I have IC and retention. Some adjustments help the IC better than others, but the retention seems to be the same. The Medtronics rep told me that during the implant - they test different adjustments and activated the best one for me at that time. He said I should go back to the first adjustment that I had after the implant and leave it there, as the lead is only so long and any adjustment would basically not make a difference in my retention, etc. I have read that it took other patients several -(7 or 8) adjustments before they found the best one for their problems. Should I just give up and be happy with the first adjustment as the rep is telling me or should I insist on trying more adjustments?? I am confused on this and don't know what to do. Has anyone had experience with this?? I feel like I was mislead as to what the permanent implant was capable of doing. He told me before the operation that there were SEVERAL combinations of adjustments that could be tried with the permanent implant and the temporary implant only had 3 or 4 adjustments. My retention has improved by about 20% since the implant. Thank you :confused:

[peiti]

Puppy,

I had the permanent implant about the time your had your done. I already have had 15 adjustments. The best one till now working for me caused constipation so I decided to try other settings. I am in a clinical trial and no charge for me to have reprogrammings. My rep told me there are a lot of combinations. You can read my reply to Littlebear about the bi-polar and uni-polar at http://www.ic-network.com/forum/showthread.php?s=&threadid=5348.

Does it cost you to have reprogramming? I think it is up to you if you want to try other setting.

Good luck.

[tigger_gal]

Hi Puppy,
I had lots and lots of reprograms and found out that with the magnets on any thing can re program you after they shut them off and put me on cycling I have not had any problems.. well except pt... i had to shut it off for a biofeeback test and turning it off and on can reprogram you.... You can go in and get reprogrammed as many times as it takes for you to feel comfort.
I do not pay for any reprogrammings.
you said "as the lead is only so long and any adjustment would basically not make a difference in my retention " What on earth did he mean the length of a lead has no bearing on a setting or reprogramming.. thats pretty confusing.. as I bet it made no since to you either....
hugs
Brat

ps I too still have some rention, and I think its stress related.

[Snuph]

I have had my interstim for four years. The doctor has reprogrammed it many times and by the time that I get to the bus stop to go home, the stimulation is back to where it was before. At the beginning the doctor looked at me like he didn't believe me. Last time I was there he said that he has had a few patients with that problem.

[Puppy]

Brat,
How would I know if the magnets are on (on my implant)? Also what do you mean by cycling? My reprogramming is done by a nurse at the doctors office, but I understand that Medtronics reps also do this? I have lots of questions, because I was never really informed on all the details of this device. My doctor is very poor on explaining things. And the rep, as I said kept repeating to me during a recent phone conversation that the lead is not 6 feet long and there are only so many combinations to try and I should stick to the first one!!! I still don't know what he was talking about. I am not happy with this guy. Thanks for any info you can give me. Puppy

[Puppy]

Snuph
Do you think any of the reprograms have helped you? It's strange that you keep loosing the programs so often. Would they have to implant you with a new device to correct this? Thanks for you input. I am totally exhausted with the research that I have done on all of this Interstim stuff. I have had retention for a year now with no known explaination. I have lost weight and it really has aged me - but I will contine to fight to find a cure or an answer for this. Thanks,
Puppy

[littlebear]

Hi Puppy,

I don't know anything about reprogramming for retention specifically. But I'm in the middle of the process, which can be a very long and process (the interstim web page says up to six months and some folks who post here have taken as long as eight months . . . ). Yes, the Dr. does find the electrode that has the best response during the impant procedure itself. But, as in my case, that doesn't always mean that the patient has results with it. My reps (I've worked with two and both of them agree about this) want to work with that electrode as much as possible, but they're willing to move to other electrodes if they don't see results. Also, my Dr.'s goal is to program the implant so that I have even better results than I did with the trial--and my trial results were very good (so cross your fingers for me!)

Here's what my rep told me yesterday: There are a minimum of 64 combinations of settings when it comes to setting each of the four switches in either an on or off position and combining them in different ways--and as Peiti said, using only one lead switched on and running the stimulation through the interstim case/box itself. Plus, your rep can change the pulse width too and that can impact your results too. Also, because of the way the body heals your interstim can work at one setting for a while and then stop working (either for the reasons Brat mentioned or, early on, just because of the way your body heals and forms new scar tissue--in which case you need to be reprogrammed). Also, again because of the way your body heals and forms new scar tissue, a setting that didn't work for you when you first start regprogramming can work for you later down the road.

Overall, from what my rep told me, it sounded like it isn't unheard of for the "reprogramming phase" (that's what he called it) to be a long one and like both of my reps are prepared to keep reprogramming until my body responds. Again, I wasn't talking to my rep about retention issues specifically--but, from what I can remember, the web page doesn't say that it can sometimes take up to 6 months to program and reprogram the interstim for frequency and urgency only . . . Also, and I don't want to scare you here, I should probably let you know that I have seen some posts where people feel that they just never were able to find a setting that worked . . . I hope, hope, hope this isn't the case with either of us (so cross your other set of fingers as well because all of mine sure are)! I also hope that you can talk to your Dr. about this, find another rep who is more supportive, or something (but, again, I don't know all the specifics about your situation) . . .

Well, I hope that this helps a little. Best of luck with all this. Sending you all my best wishes, little bear

PS I don't pay for my reprogramming. Also, I did read one post on the boards, though, that sounded like it took eight months for one setting to kick in and start working . . . But, my rep seems to feel that, if a setting doesn't work after about 3 weeks or so, it's probably time to go and get reprogrammed . . .

[Teri]

Puppy~there are literally hundreds of combinations they can use to program you. I would go over you rep's head and call medtronics and ask THEM, and if they tell you YES, there are many many differents things we can try, than complain about your rep......just when I was about to complain about mine, he was transfered. My dr is still in contact with him and I asked my dr to give his a message from me the next time he talks to him.......the message went something like kiss my :toosh:

[Puppy]

Teri
I agree with you. I think I will go over my rep's head and see if I can get better communication with another rep maybe. I noticed on this message board that almost everyone has reprogramming done by the reps. My is done by the nurse in the doctors office. How would I have the rep do it? My doctors office is an hour and a half to two hours away, and I have to take time off of work to go. Thanks. Puppy

[Puppy]

littlebear
I' crossing my fingers for you. Thanks for all the info on combinations of settings. I still am not sure what running the stimulation through the casing means? An not running it through the casing? I did notice that every few days or so I have to increase the stimulation as I become use to it and need to go higher. It sounds like you have a rep that is very helpful and willing to work with you. I need to find one that will do the same. My doctor says it may take up to six months or longer to see good results as far as retention. Do you think that is so? I wonder why a couple of weeks of one setting would not tell you if that setting will work for you or not.? Best wishes to you and I will keep on doing my research on all of this, because I am not about to give up. :pray: Puppy

[littlebear]

Hi Puppy,
Thanks so much! My fingers are crossed for you too! I'm happy to tell you all that I know--although I'm certainly no expert . . . I've only been reprogrammed three times and, like you, I'm looking for any feedback I can get about this phase and am determined to stay positive during this phase.

About the casing, you're right it is always sending signals out to whatever leads are turned on at any given time. With that in mind, here is what Peiti and my rep have told me . . . . Usually, several leads are turned on at either positive or negative settings (lets say lead #1 is positive and lead #3 is negative) and a circuit is formed between whatever leads are positive and whatever leads are negative (with the stimuation flowing from the postive lead to the negative lead, back to the postive lead then to the negative lead, etc.). But, sometimes they will turn all the leads off except for one, which they set at a negative setting. Then, the box becomes the "postive" pole and the stimulation runs between it and the negative lead that has been turned on.

I'm like you as far as getting used to the stimulation goes--and, because it's not working yet, I keep turning it higher (but not so high that it's uncomforable).

Also, I've been told that it's sometimes hard to tell what setting will work in the short term (or that a setting can work at first and then stop working all of a sudden) because of the way the body heals around the the leads. Apparently, in some cases, there's no predicting how that will happen. Also, because the body continues to heal as they reprogram, they like to give each setting some time. But, I've heard that some folks go back every week if their programming doesn't work. I've also heard that some wait for two or three weeks (and I think someone said they did wait for a couple of months) . . ..

Best of luck with all this, Puppy, and best wishes to you too, little bear

PS Keep us posted and let me know what you find as you continue to do research (and I will do the same). Also, if anyone else can confirm any of the things I've been writing about--or if they've heard something different--or if they have anything they want to add about this stage of the game--I'd love to hear from them.

[peiti]

Littlebear,

Thanks for sharing the information. I wanted to jump in to expain it, but didn't know how to make it clear.

My rep told me the same things about leads that you learned from your rep. I guess using the IPG case as a positive pole can get the stimulation working on a wider area.

I think the whole reprogramming is a guessing game. I am so tired of it and decided to use a more effective method. I don't know if my dr will agree with me, but I will list all the possible combinations and try one after one and each one for two weeks, instead of guessing which setting will work for me.

I have some questions here. Wish someone can give me feedback. My dr kept telling me and other patients that nerve modulation doesn't need a strong stimulation. Sometimes it only requires very little stim to work. When my rep tried to find the combination for me, she picked the least voltage too. I don't know why they are reluctant to use a bigger voltage. For me, as long as the stimulation doesn't bother me and works well, I don't care how strong it is. Does your dr do the same thing when they tried to find the setting for you?

BTW, which sacral nerve of yours is stimulated? S2, S3 or s4?

Thanks, Peiti.:pray:

[peiti]

Littlebear,

Thanks for sharing the information. I wanted to jump in to expain it, but didn't know how to make it clear.

My rep told me the same things about leads that you learned from your rep. I guess using the IPG case as a positive pole can get the stimulation working on a wider area.

I think the whole reprogramming is a guessing game. I am so tired of it and decided to use a more effective method. I don't know if my dr will agree with me, but I will list all the possible combinations and try one after one and each one for two weeks, instead of guessing which setting will work for me.

I have some questions here. Wish someone can give me feedback. My dr kept telling me and other patients that nerve modulation doesn't need a strong stimulation. Sometimes it only requires very little stim to work. When my rep tried to find the combination for me, she picked the least voltage too. I don't know why they are reluctant to use a bigger voltage. For me, as long as the stimulation doesn't bother me and works well, I don't care how strong it is. Does your dr do the same thing when they tried to find the setting for you?

BTW, which sacral nerve of yours is stimulated? S2, S3 or s4?

Thanks, Peiti.:pray:

[rjyoon]

I also don't understand the thing about trying to keep the stimulation level low. At a low setting, I had only a very small improvement. At a higher setting (still not the top), I had a dramatic improvement. I suppose it has to do with battery life, or something.

[littlebear]

Hi Peiti, My reps go for the highest setting they can before I feel discomfort. Once I do, they'll back it up the setting just below that. I feel like ryjoon does about this, during my trial my symptoms improved as I turned the stimulation up (even though none of the other settings changed). Also, although I'm still reprogramming, depending on the setting, my symptoms sometimes improve when I turn the stimulation up. Sending you good thoughts and my very best wishes, little bear

PS I really like your plan for reprogramming! It sounds like it will give some structure to the process for you, which really sounds important for you right now.

[rachelm]

O.K. I think I know why they like to start with the lower frequency. The first trial I had the dr. upped my frequecny when my pain came back and I had a dramatic reduction in pain again. This time he's trying to get good results with lower frequencies because he's got more options with the stage 1 leads than with the old trial. By starting with the lower frequency it leaves opportunity to up it as our bodies adjust and quit listening to it. It they go to the highest frequency first then they may not be able to get our bodies to listen to the stimulation later when it must be upped to get the same results. I think though that if you're not getting a good result with the lower frequency than it's time to increase it. As far as the patient controler for the stimulation level I try to turn it up as high as I can without being uncomfortable. I notice with the trials that the stimulation changes when I sit, stand or lay down so I adjust it acordingly. Littlebear thanks for the info about the positive and negative points. That makes a lot of sence.

Hang in there everyone! We'll find the right combo's before too long I hope.

Rachel

[Puppy]

rachelm
As I have been conversing with everyone on this message board, I noticed that everyone seems to have the same problem - trying to find the right setting or adjustment to work good for the symptoms that pertain to each individual. Has anyone out there found the right setting yet? I am curious. I'm beginning to wonder if there is a "right setting". Do you suppose that the Interstim is so new that they still have work to do on it?
As you can tell, I'm getting a bit depressed with trying to find the right setting - each one so far works good in the beginning and goes down hill after about 2 weeks. Feedback from everyone would be great. Thanks, Puppy:( :(

[DebbieB]

Hi Puppy;

YES , YES you will find the right adjustment in time, it took me up to almost a year to get a good one..
It is called having patence and I know it is very hard to have that at times..

I will have my InterStim Implant for five years tomorrow and I just came back from my six month check up and I am doing just great everything is going good and the battery is still going strong..
It must be the Energizer Max inside of me as I am still going and going!!! :D :woohoo:

So hang in there Puppy :thumbsup:

Debbie :kiss:

[Puppy]

Debbie
Thanks for the encouragement! If I may ask, is your Interstim for IC or another reason? Mine is for IC and Retention. I have a double wammy and trying to find the right adjustment to handle both will surely be a challange. I am very discouraged at this point, but when I hear from people like you, it gives me a reason to continue to move forward and have hope. Thanks,
Puppy:)

[DebbieB]

Hi Puppy;

I have IC , pelvic floor dysfunction and as well as my urethra tube going partly paralyzed to where I had to self-cath myself every four hours in a two year span as I could not pee on my own.
So my case is very different from many of the girls on the message board..
So with having the InterStim Implant I was able to pee on my own which was a wonderful blessing of all..
So today is my five year anniversary with the InterStim Implant and what a blessing is has been with it to..

Puppy with lots of patience and time you will find that right adjustment that will make all the different in the world to you :thumbsup: :thumbsup:

Hugs, Debbie