InterStim Reprogramming

[KarenK]

I had my IPG implanted on May 4th this year and started having terrible toe curl after about 3 weeks. I went back for "fine tuning" and then it felt like all of the stimulation was at the rectum which subsequently caused straining and tearing when I tried to pass stool. I went back again on July 5th and my doc scrambled all 4 electrodes again and now there is a very uncomfortable pull at the urethra. I called my doc and told him about it and now he is ready to give up. Has anyone elso had to have multiple "reprogrammings" to obtain optimal (or at least not painful) results? The test stim was great and the first 3 weeks after implant were fine (reduced urgency and frequency, not pain) until the toe cramping. Guess I should have just lived with walking on a balled-up foot.

I think my doc is giving up too soon. Am I being too optimistic???

Thanks

[DebbieB]

Hi:Karen
I had the same problem when I had an adjustment,for my whole right leg going numb and my foot ,and he just moved it to a different place..
You say that all the electrodes were on ,as I just have one electrode on..

Could it be that the doctor has it to high for you..
We all have adjustment and it takes some time to get to where it is right..

Tell him to not give up and just tell to try others places when you see him ok..

Hugs: Debbie

[Maureen]

The reprogramming seems to be the most confusing issue with the interstim. I have never been able to understand and I am not sure the doctors do either.
At my last visit he moved the stimulation towards the vagina and said which stimulation do you prefer the original near the rectum or this beause it doesn't really mattter. I know that some ladies seem to get different results depending where it is felt. So I didn't understand why he would say that.
He has also played with it and I do not feel anything so he says "I guess it has to be back at the original spot."
If it hurts can you turn down your remote control until you just feel it.

[dedeash]

Hi
My opinion is that its too soon to give up. I have had two surgeries and each time gone in once a week for 5-6 months for adjusments to exhaust all possibilities. There are soooo many different settings and combinations to try....each lead can be on alone, the stim can run from the implant to the leads or just along the leads, and then one or more leads can be on together.....
Please insist that he try some other things. In addition to the lead changes, they can change the frequency, pulse rate, band with and other things to make it more comfortable for you. Its possible to keep the volume up and turn some of the other things down. Does your doc do the programming or a Medtronic rep? Maybe he could have someone come in who specializes in this and help out>
Just my opinion.
Dede

[Teri]

Interesting post Karen! I have had my implant for almost 2 years. Just had another adjustment yesterday. For almost 2 years, no matter what's been tried, they can not get the curling in my toes to go way. But, they are FAR from giving up. Yesterday we though we got it! After 3 hours it was back in my toes again. It's so funny cuz I will leave the office with the vaginal sensation and within hours it's back in my toes again.

Like DeDe said, there are tons of different setting plus ways to set them. I have my next appt on Aug 1 and I will meet with the nurse, the medtronics rep and my uro, with x-rays in hand. I will probably have to hang around the office for awhile this time to make sure that it doesn't move back into my foot but we have allowed for time for that to be done.

My nurse is fantastic (I think DeDe sees the same one and I know her medtronics rep is the same one as I have) and she told me yesterday that what she has learned in the 2 years since my implant is completely mind blowing. Where she 'thought' there were limits as to the programming, she is finding that there are many many more possibilities than they ever originally thought.

You need to demand, and yes, you can demand this, that you see a medtronics rep at your next adjustment. Your dr is giving up way toooooooooo soon. It was because of info here on the ICN that I found out I could do this and when I went for about my 5th adjustment I made sure that someone from medtronics was there.

I am so sorry that you are going thru this. And, I am also glad that you posted because this is a GREAT question for people who are considering having the implant done....ask your dr what kind of after support you are going to have. If he gives you a blank start, or tells you 'not to worry about it' find another dr!. We deserve the best treatment possible and we deserve complete answers to all of our questions.

If you can't get the help you need from your uro Karen, call medtronics and see if they can direct you in the right direction.

tons of hugs~

[Kara23]

I had just the initial programming that they did during the surgery. I didn't have to try anymore adjustments. It's been almost 5 months. But I did notice that if I turn mu unit up too ;high then my toes curl really bad. So I keep one notch below the toe curling stage and I do fine. I would want to try that initial setting but at a lower rate. It's too bad your doc is ready to give up. This is a complicated machine and he should know that it's going to take some time to find the adjustment for you. Maybe you could find another doc who would be willing to help you out? Maybe you could ask your doc who he would recommend since he's giving up so easily. Sounds like he doesn't really want to do his job.

Good Luck and I hope you find some help soon!!!!

Kara

[Ruth]

Golly, I'm really getting confused. I am considering the InterStim and really appreciate all your comments. I have a lot of questions for my doctor.

Dede, did you actually mean 5-6 months for readjustments for each surgery or did you mean 5-6 weeks? Also, I was under the impression there was only one lead.

Can anyone tell me why there are so many leads breaking? Is is a faulty design?

Ruth

[DebbieB]

Hi Ruth:
Welcome to the board,I am the moderator!!!
I know by you reading all the different posting it would be very confusing I must say !!
First of all if I were you go to www.interstim.com and www.Medtronic.com or call for a video on the procedure at 1-800-510-6735 ok
Read as much as you can and get as knowlegde full as you can on the InterStim ok...
Yes there is one lead wire with four elctrode on it..
Some adjustments on Implant can take only a couple of months or up to as many as five or six months..
As first you go every four months for visit , or when you have an adjustment and it not helping then you would go back to have it adjusted to where is good for you..
These adjustment are nothing at all, it takes less then five minutes to do,he hold a device up to your Implant(Pacemaker) and then he does his setting from a briefcase which the computer he uses sits in it ..

I had my InterStim Implant now over two years and I had only four adjustment within the two years..
I was one of the ones that had my lead wire broke in the middle, this is due to the lead wire having a defect in it..
My self have not heard of two many having the problem either...
As it is a Mechanical device, we are told this and we could have problems with it ..

I have so much wonderful results from it, that to tell you the truth , I would not hesitate to do it again in a minute, it well worth it all..

Ruth also having a well experiences doctor doing this procedure will be a great help too..
I would ask your doctor if you would be able to get in contact with any of his patients that have the procedure done by him would also be great for you to talk to !!

Don't be afraid to ask us more questions we are all here for you ok Ruth !!!

Hugs: Debbie