More Problems???

[patricia1]

Hi everyone. Hope this finds all well. Many of you more than like. know of my InterStim problems over the years. Well I had my revision done in May 2005. Been a year now. The new one is not working well and not controlling my symptoms. Only 2 leads out of the 4 work right. The deeper 2 are the working ones and the other 2 cause problems for me when they are on. I am now having a new worry with mine. If this was my right foot I would not be worried, but being that it is affecting my left I am concern. I am having plusating in my left foot at the top for some reason. Does not happen all the time and seems to be at night when I am in bed. So I am wondering if the bottom 2 leads are trying not to work. When the top 2 quit it was pulsating the mucsle in the upper and lower part of my left leg.

I have about dec. should this one not work I dont want to try another one. It is just to much crap to continue to go through for me. Thanks guys

[dancemomof2]

I hate to hear this, you sure have had your share with this thing.

[patricia1]

Thanks Leslie, I am hoping though that it is just a passing thing. But it does bother me that it has happened several times, same place, same thing and only happening to the left foot. Who knows, I will give it more time at least it is not shocking me to the point I cant move my leg :) . It is just little things this time.

[tigger_gal]

Patricia,
you have had you share of problems with the interstim.. Have you considered the bion? there are no wires..
The only thing is if you opted to have the bion you would have to have the stims ot.. I am so sorry that you are having problems again.

[ktrncl]

I have the interstim may I ask what the bion is?

[patricia1]

Tigger I am not sure I am in a area that is offering that. Believe it or not we do have a teaching hospital here and one of the best hospitals in the state, but when I had my revision done last year, I was the first on done there. I think I may look up and see where bion testing is going on. I do think I am gonna go and ask for this one to be removed. As I am sitting here typing, my foot nerve is twitching. This is why I think it is the Interstim again, b/c always in the same place and same nerve.

[Rmmzus]

=Can someone tell me something good about interstim?
What is Bion? I am scheduled for intersim surgery on May 18th, 2007. I am getting cold feet. I am that princess w/the pea they wrote the story about only not that old. I am sick to my stomach when I think about getting interstim surgery. I have Chronic IC w/bladder spasms when I hold my urine too long. I also have severe allergies and IBS w/chronic constipation. I am still taking zelnorm "shh". Don't tell my gastro. I've tried every drug for IC w/ allergic reactions to all. I done RMSO First time helped me, but didn't help w/frequent urination. Second time was from Bio niche company and I sware it was mostly water. It didn't work and didn't smell ask 7yrold. Ive had two bladder hydrations cyscoscopies.
Can someone give me some feedback on this?

[wolfaleena]

A lot of folks have had success with the Interstim and the only way you'll know if it works for you, is to try it! There is no way the docs can tell ahead of time. They don't have a crystal ball! I thought about having it done for YEARS and finally got up the nerve to have it done. Went through the testing surgery on April 16th. My doc does both sides. you have two boxes three days testing on one side , three days testing on the other side and then three days with both sides. Well, after all of this... it didn't work out for me.
the stimulation even at the lowest settings illicited this terrible pinching cramping internal pain. The medtronics rep, the doc and the nurse practitioner and i all got together and tried changing settings etc etc. but nothing worked. i did the diaries and now i have the stimulator boxes unplugged. i am having some weird burning in my left buttock upper leg area when i sit it gets worse.
well, anyway i am getting these wires taken out on thursday!
I am disappointed that it didn't work, but at least i tried.
I have severe IC and have tried EVERYTHING.
But i still have hope and i am glad i tried the Interstim, even though it didn't work out for me. It was a lot to go through with the added pain and on both sides. very uncomfortable. but if it works, it is a God send.
I accept that this didn't work for me and i will move on!
Some advice for folks that are getting the trial , since you can't get the area wet. i have been taking sponge baths and bought this stuff called NO Rinse Wash and these No Rinse Towellettes. they really refresh you pretty well.
On May 10th they are going to take these wires out.
It didn't work for me but i have not regrets... it just wasn't in the cards, so to speak. I feel it is not in God's plan for me. so I just put it back in HIS hands and i will go on from there.
I must say though, i cannot wait till Thursday when they take these wires out~

[akrose]

Beginning of April I had the sacral neurostimulator (interstim) for 16days of trial- and just like the above person stated, it felt like my pelvis was in a state of contraction- pinching- it was pretty horrible- when the doc turned up the energy level, it never stopped the pain or the urgency/frequency. I had the box removed, leads snipped and will have the sacral leads removed in August. I have now tried everything there is to try for IC. There is nothing left. So on August 17, 2007 i am having a cystectomy with urethrectomy with creation of a continent pouch, to tell you the truth I am counting the days, because I honestly think, even while I stay on the diet, take the Elmiron, the Elavil, my bladder is causing me more pain, and falling asleep at night and not getting up to pee a drop in the toilet about 10 times is almost driving me crazy. This is 2 years and 2 months for me- so I don't know how those of you who have had it for longer stayed sane and survived. I am so thankful to God that he gave the greatest urologist in this country to finally walk me out of this prison. You all know what prison I mean. Have a good w/e.