what is wrong?

[lucia]

Hi everyone!, well, I had my 2nd. adjustment 2 weeks ago. But when I lied down my leg moved so much that it looked as if I was going to kick someone!, I had a new adjustment two days later. They left me in the same electrode as my first setting, they just changed my on/off intervals (I was 5 on and 5 off) now I'm 10 on and 10 off. (I posted a few days ago telling that my on/oo was 8 on and 8 off). My uro told me that he was really happy for the placement of the electrode, it was in a perfect position, no leg movement (in one of the electrodes) and a perfect rectal "movement" (in my adjustments my doc puts me in the same position as in the trial procedure to see your private areas movements, if you have a leg or toe movement).
Well, I told him that I didn't found an improvement with my urgency and incontinence with this setting, he told me that I have to "help" this therapy, (I have this urgency for all my life), he told me that I have to "educate" my bladder to hold more urine, I have to go to the bathroom every 3 hrs. even if I have extreme urgency ( I don't have IC, I have urgency and urge incontinence),it is extremely difficult for me to hold for 3 hrs!, I thought that this was the interstim that would do the "work". I told this to him, but the said me that my bladder needed to be re-educated and that it was as any muscle that had to be streched out.
He has helped me so much, and I know he is right with all this, but I think that my interstim should help me more with the urgency ...
After reading different stories, I know that sometimes it is necessary 4 or more adjustments, and I need to be patient, that it may take 1 yr. to find the right adjustment for me. But I'm so scared that all this surgery was for nothing! For me it is extremely difficult to have the adjustments, I have to fly to the States (I live in Mexico!), is at least 4 days out of work!
At this point I'm so dissapointed with the therapy (not with my doc), I know that it takes time, the bladder reeducation, etc... He gave me his cel phone to call him, and tell him how I'm doing.
I don't know what to think, it is just a few days in this re-training but, I don't find help with the interstim!!!! Maybe I need another adjustment, but he thinks that the electrode that is on, is the rigt one to give the stimulation.
Sorry for my long story... But I have to post this, I know that all of you have IC, and for you it is IMPOSSIBLE to hold because of pain, but, do you think that I'm on the right track?

[DebbieB]

Hi Lucia:

Well it sound as if your setting is a bit high now and this is causing your leg to do this..
I had numbness in my leg one time and I did an adjustment and I made sure I stay until that numbness went away..
I have to travel two hours away not as far as you but did your doctor not explain to you that you would have to have adjustments from time to
time ??

As for training your bladder , I was told not to drink to much after six at night when I first got the InterStim Implant..

How long have you had the InterStim for???

Yes, it does take sometime to see a differents in your adjustments!!
I think is sound as if you are on the right path and patients is a big part right now...

Also you do have four electrodes , I have one working for me, but that is a option you can talk to your doctor about the next time visiting him Lucia ok!!!
Have you also try putting the remote control down a bit and see if it makes a differents, also try turning off your remote control for awhile and see if that feeling goes away in the leg, if so, then you need another adjustment..

Hang in there, I been throught it too Lucia!!!

Hugs: Debbie

[Ruth N]

Two ideas which helped me.
We found that I needed to have 3 of my 4 electrodes on for maximum benefit. The 4th electrode was very uncomfortable for me so we keep it off. You would probably want to avoid turning on the electrode that made your leg go crazy.

The other thing that we found helped me (but we are all different) is to only cycle off for a few seconds. I cycle 8 seconds on and 3 seconds off. I needed more on time. Theoretically my battery will wear out a few months sooner than if I could cycle off longer but the trade off is worth it for me-my battery should still last about 8 or nine years.

Try to hang in there. There are lots of combos to try. I realize though it is hard with your doctor so far away. I just got mail from Interstim saying their website lists more doctors. You might want to see if you can find one near you. Good luck. Ruth

[lucia]

thank you for your answers!!!
I had my surgery in september 2001, my doc told me that he has a patient that had a lot of adjustments to find the right one for her. I know that I'm going to be one of them!!!!, But you guys can schedule the adjustments appointments any time, I have to arrange for airplane, hotel, etc...
And I'm very scared not to find the right adjustment soon!
Ruth, I know that there are a lot of doctors in the interstim web page, but not in Mexico. And by the way, I don't want to change doctor and start with one that does not have any experience with Interstim...

[Kara23]

I had 3 adjustemnts and I have to turn my Interstim off at night because it bothers me so much. I have the kicking thing happeneing too.


Kara

[dedeash]

Lucia
that must be very frustrating for you to have to go so far to get an adjustment. In the first year of my surgery I had to go weekly for tuneups and I complained about the 45 miles I had to drive each way...now I think I was lucky compared to your situation.

Good luck on this
Dede

[lucia]

I know, but I will fight until this therapy works for me!, I had call him twice a week to tell him how I'm doing, he has been really nice. He wants me to train a little bit my bladder before making any new adjustment.
I hope it works!!!!

[Shining_Starr2002]

I do not have Ic. But I am being considered for interstim. I am only 15. so my parents think I should wait. But I don't want to cath my whole life. How old was everyone when they got interstim? I have uretha dialation, biofeedabck , and medication but they didn't work. Did interstim work for you? I have been cathing since November now. But I have had bladder problems must of my life. I am also on a medicine that left me immune suppresed, so my doctor said I am not a surgical candiate until I am off this medicine (for kidney disease)

[ICman]

Ultimately it something for you, your parents and a Dr. to decide but I think your age makes interstim and even better option if it can get you off all the med you might be taking..I'm sure your folks are just being cautious but I bet they come around eventually.

[ICNDonna]

Larissa: The best suggestion I can think of for you is to talk to your parents about getting a second opinion from a physician who is not in practice with the one who is recommending the interstim. There may be other options available to you --- and if there aren't any, then the second opinion might be the thing that is most convincing to your parents.

I do think all other alternatives should be considered before taking such a major step.

Sending warm hugs,
Donna

[DebbieB]

Hi;Larissa

Just a suggestion to you Larissa!!
I would have your parents get all the information and read all you can on the InterStim Implant..
The web site are www.interstim.com and www.medtrontic.com
I would ask this doctor about how many he has done in these procedures and a great benefit to you is to be able to meet some of his patients with the InterStim Implant!!!

I did all kinds of medications and treatments over the eighteen years that I had the most problems with my bladder, this one the very last resort of all and I was told it would not help me with my IC pain at all!!!!
Alot of doctors doing this procedure are giving alot of misleading information that this procedure is for "pain"...

I had my InterStim Implant done almost three years ago and only about the first year did I see any results ..
The InterStim Implant is not a over night success in any means Larissa, you have to do lots of adjustments and if you not willing to do those adjustments then the InterStim will not give you any results at all...

Everyone that had the InterStim are all ages on this board, I am in my forty when having this, yes I wish I could had this some ten year ago , but I did not know about it at the time and sure wish I did to!!!

As in any procedures , we are all different and it may help some and others don't get any results with it!!
Also when this procedure it takes lots of "patients" and "adjustments" to get the results
you are looking for and a very well educated and well experiences doctor doing this procedure!!

I wish you all the best in what you decide and only you Larissa and your parents can make that decision in this matter.

All the best: ~~~Debbie~~~

[Shining_Starr2002]

Thank you for your replys. I did talk to a doctor (3 actually) who did not do interstim. It was the last urologist who suggested we go to this other urologist because he did interstim. WE went to him, and after testing, he said to do interstim after I am off meds that make me immune suppresed (for an unrelated condition) But my parents (I'm 15) were worried it was too invasive. But the doctor couldn't think of anything else to help me retention (I'm cathing 4-6 times a day) So I was wondering if anybody heard of a clinic specializing in neurogenic bladder or interstim.
I have been on the tronic and interstim website. (Thank u for giving me those links)

Also was the surgery painful?
How long did it take to recover?
Are there any restrictions?

Did anybody get an infection?

My parents are worried because I had a surgery once where I got a staph infectio nafterwards it is not a fu nexperience so we don't want to go through that agin

thank u for your help

[DebbieB]

Hi: Larissa

I was in the hosptil for two nights and out the third week driving and doing light housework..
It is not that bad of a surgery at all..
I did not have much pain at all, I found it to be more sore and stiff then anything on my lower back where they placed the lead wire..

When I went for my second year check up , I found out that the InterStim had not been working and had to have surgery and they found that the lead wire had crack in half and it was cause my a faulty lead wire..
I was back to work with in two weeks after doing the surgery all over again..

The only restrictions, that you can't lift anything for a while after the surgery!!!

Sure ,there are some people that have had an infections and had to have the InterStim removed..
Some have it reject the body to!!
Also you can get a staph infections with any kind of surgery as well!!!
This can happen with any kind of procedure!!!

I hope this has help you a bit with your questions!!!

Larissa, did you do the InterStim trial to see if the InterStim would work for you at all????


~~~Debbie~~~