nerve stimulation

[sheryl]

I`m having problems with not finding the right setting for my stimulator.It work great for some of the time,but it stopped helping the pain.I`ve been so frustrated trying to get it to work again.Anyone with this problem? Sheryl

[akc]

Hi,
I can definitely understand! I've had four surgeries, several programming adjustments, and nothing!! Mine has never helped my pain. Not even a little bit. So, I'm having my interstim removed next week.

I really hope the doctor can find a good setting for you that will help!! It seems like this Interstim is just not worth it!! [img]frown.gif[/img]

I wish you the best of luck!! Hang in there!!

[Jazzy Baby]

Well, everyone know's by now that I had mine removed. It never once helped my pain, and I told the doc that when I was going through the trial. He told me to give it time, and it would work. Well, it didnt, and then it started malfuntioning and shocking me. If I could go back, I would have never had that stupid thing put in me. I have way more problems now then I ever had. Hope you get yours figured out. Just know that on the medtronics site, it doesnt state anywhere that it will help with pain. I didnt know that before I had it put in, and I am guessing that a lot of other people arent told that either. Good luck, and dont let those doc's push you around. Its your body, you know how you feel, they dont!!!!!

[Lanana]

Hi
My doctor wants me to decide if I want to do this procedure. I think Iam going to wait it out awhile. It seems to me that maybe I should see what happens for a year or two. I do have constant pain every DAY, but I don't want to add to it. This is bad enough. THere was some thing about the stimulation on the outside of the body, its called a 4-lead neuromodulator. Has anyone heard of that? Please let me know if any of you has had any experience with this. I guess I should keep my pain medication. What works best for any of you? I heard there are some that are time released. Iam getting tired of popping one every 4 hrs. Lanana

[codyryonwoodward]

Hello all..I am a little concerned with all the negative remarks about the interstim product. I received my Interstim in September 2001...right before the terrible attacks that happened on the US..anyways I have never had alot of problems with pain. I have had lower back pain but that is about it. I have had IC for about 7 years now and it took over 5 to get a diagnose's of it. My pain problems were with frequency and urgency I was going to the bathroom every 15 to 30 minutes during the day and 2 to 3 times after I went to sleep. I tried the diet elmrion antidepressant's and many other things before I made the decision to get the Interstim. I was very leary when my doctor first suggested it and really scared when he told me that he had only done 2 implants before mine. I did lots of research on the interstim before I had it done. And I weighed the many pro's and con's...I also read the many messages that are left on this web site. I then decided to let myself try the test to see if it worked. I wanted to feel somewhat normal agian and I know that this was my last chance.

I am not trying to put down the problems people have had with this product...But for me it has saved my sanity....I am down to the potty maybe 1 time every 1 to 2 hours. I want people to also understand that there has been good outcomes with this product. I never once read or was said to me by any doctor or the rep who makes the product that the interstim will treat pain. They state it is for URGENCY AND FREQUENCY...and if you get it for pain only you should not get it. Also I had alot thinking about something foreign near my spine..but I do not think it is on your spine. I would like some postive things said about this for the person who is looking to get one. When I was looking all I remember seeing was the negative about it. Not a whole lot of postive things were being said. I am sure the interstime is not for everyone. As with medicines I am sure things work diff. for everyone. And maybe the interstim has negative effects for some. That is why the testing is done. To see if the interstim is the right thing for someone to do.

Just please remember that for some people the Interstim has restored some form of normalcy. I still have flares. And that is because the stim does not cure my bladder only lessen the problems that come along with it. I still have to watch what I eat and do...But I am very thankful I have gotten this product.

I hope I do not offend anyone I just want another point of view added.

[ICNDonna]

It's good to see open discussions about IC treatments. We were seeing posts from people who are having success with interstim, but also some who were having disastrous results --- and that's the reason the board for "challenges" was opened. There are actually two boards for interstim discussions.

Sending encouraging hugs,
Donna

[Teri]

I think that alot of the problems concerning the interstim are that dr's are jumping the gun and using them too soon in treatment.....alot of the other problems are uninformed patients. The ones who come here to this board and ask if they should have this procedure done when their main symptom is pain. Unfortunatly, we sometimes only hear what we want to hear because we think that we will be the odd one and it WILL work for 'my' pain. Those girls have been hurt and hurt badly, both physically and emotionally.

I got very lucky with my first surgery in Oct 99. My uro told me right up front that this procedure was NOT for pain and IF I got any relief from the pain it would be a bonus. My device worked immediately (not for the pain tho) and I was on cloud 9 cuz I could finally go to a hockey game. It stopped working after 1 1/2 years and last October I had it redone using the other side. This one did NOT work immediately. Alot of adjustment, ALOT of tears, ALOT of emotional meltdowns PLUS ALOT of new symptoms. (still no relief from pain, infact, more pain)

From day one, in October of 99 I figured that "WE" are the people that they (the dr's and reps) are learning from. Is that right or wrong?????? If there were no "We's" then how would the procedure become right???? Should we sign a form before surgery stating that we a genie pigs????? Maybe. I do know that the form I signed did state all or 99% of the things that could go wrong with the procedure but I was so desperate to get off the potty that I didn't care.

I have never been sicker in my life than what I've been since the second surgery in October. Would I do it again? I don't know. The device is working, it's doing it's job but I think that in the process of taking out the old lead there was damage done that I will have to live with for the rest of my life.

I made the decision to have this surgery. Knowing that there hadn't been too many of them done. I made the decision to have this surgery after years and years of treatments that failed.
Yes, I do get angry because of the added physical problems that I have, BUT I am the one who signed that consent form. It's very easy to get on the computer and get the literature from medtronics if your uro doesn't have it.....with the computer at our finger tips now we have to start carrying more of the responsibility of our medical care.

There are girls who have been badly damaged bacause they have been comletely lied to and those girls should go to any length they need to in order to be compensated for what they have been thru BUT if there is some attorney out there hunting down patients who this device has failed trying to find patients in order to file a class action suit remember that that attorney is going to make a ton of money because of your pain and suffering.

tons of hugs to all~

[deborah b.]

Hi Everbody!!
I was told upfront that the device was not for pain!!! And I talked with people that had the interstim in before I did it. I got mine in April of 2001 and revision done in Aug. of 2001. Mine is working 50% and is getting lower back pain on my left side where the lead is implanted. I've had mine reprogram probably 10 times between Sept 2001 to June 2002. Was told that there was no more reprograming that they can do. Back in May I had X-rayed done on my lower back and found out that i had arthurtis in my lower back. I'm been getting pain in my legs and my feet. I'm still figuring if I want made taken out or not. If any one have any comment to me you can E-mail me at de[email protected] [img]confused.gif[/img]

[Carolyn B]

Hi, This is a very interesting exchange of information. I had my interstim surgery in April 2000 after a successful trial. I did not go into this uninformed. I talked to more than one doctor, Medtronics corporate headquarters, other patients and did a lot of research before I ever selected a doctor. My doctor was trained by the best and has had successes and failures and told me about both. He also advised me of the risk involved and told me that if it didn't work and I wanted it removed that it was much more difficult to remove than it was to put it in. Understandably everything is healed in place and risky to remove. I made my decision and went for it. It was like going to cedar point and jumping on a roller coaster. I had my ups and downs and now I have mine turned off. It works for some things and not for others and I turn it on when I need it. I'm glad I made the decision to have it done. I have times when I go several hours without urgency or frequency and I watch my diet very close. Nobody said this was a cure but it should help with some of the symptoms. My problem has been the Medtronics rep telling me there's hundreds of ways to program it and I just need to keep coming back for adjustments. I did that for two years and then gave up on him. He did a test in the office and said the stimulations in the right place. I guess my question to him is, how does he know, he can't feel it and didn't take the time to listen when I told him it wasn't. When it works I get way to much pain in my leg and foot. I just need to see my doctor again and also get a rep that knows what he or she is talking about instead of just trying to sell the interstim. Probably the lead is in the wrong place but I'm not in any hurry to go through this again. Life is a crap shoot and you make decisions and go on to the next one. I'm sure at some point I will do something else but I think I will wait for the technology and medicine to advance just a little more. I think I did my part in helping medicine and techonlgy by being in on the ground floor and taking the chance. Now let them take what they have learned and do something more for me when they get it right. I'm really sorry for everyone who is experiencing the pain and suffering of surgeries gone wrong and I'm really happy for everyone who was fortunate enough to benefit the way we all wished for. Right now I'm doing two different instillations at home, one daily and one weekly, and drugs. It's not what I wanted but sometimes life sucks. I'm hoping for that cure and praying for all of us in this situation. Carolyn B

[Carolyn B]

Sorry, P.S. My doctor and the rep told me up front that the interstim was for urgency and frequency only and even if you have a great trial there is a chnce that it wouldn't work and some patients needed revisions. So I don't think I was misinformed. Carolyn B

[Teri]

Carolyn, I'm sooooooo glad you brought this up......."He also advised me of the risk involved and told me that if it didn't work and I wanted it removed that it was much more difficult to remove than it was to put it in."

When I had my second surgery, and it was a surgery because I had the staged trial done on the opposite side and the old lead taken out of the original side. My uro thought it would only take a few minutes because it had only been in there for 2 years. Well, my surgery took twice as long as he thought it would. I was the first one he had removed the wires from.

Also, this is a bit off topic BUT......my father had a brand new procedure done on his heart, his dr is one of the best in the country and my Dad was only the 2nd one this dr has done....that dr has given my Dad the gift of the last 10 years of his life and he's still alive and kicking so we NEVER know.

My prayers are that the dr's are able to learn from us so that someday they will have this procedure down to a science and EVERYONE who needs it will be helped by it.....sometimes ya gotta kiss alot of toads before you get the prince <img src="graemlins/angel.gif" border="0" alt="[angel]" />

[deborah b.]

Carloyn, I was told to there was so many ways to reprogram but she told me that last time there was no more reprogram she could do for me and probably had it reprogramed 5 times after my revision in Aug. Then I went to Fl in Jan with my Mom and had it reprogram 5 times. Then came back home in april and had it reprogram 1 more time when the rap told me no more she could do for me. [img]confused.gif[/img]

[Carolyn B]

Chady, I'm really sorry you went from diagnosis to implant in such a short time. Someone in the medical field should have been able and willing to discuss all of the other options first. most of us have been through many different treatments and the interstim was the last resort. At lot of people with IC do quite well with other treatments and different things work for different people. My first uro did not want to do anything but DMSO instillations for fifteen years and it wasn't helping any longer so I found another uro who was willing to try other things. Even after the interstim he is trying other treatments that are helping. The interstim only helps with the symptoms not the disease. I hope you get some resolution to your situation and find some relief to your pain. Prayers,
Carolyn B

[Teri]

(((((Chady))))) I had been miss-dx'd all of my life, treated for 10 years by a jerk would didn't dx me until after I found an article myself and ask if this is what I had. Well, it was too late for me because I had let him do a bladder suspension and that is when the nightmare of living in pain started for me....then I went on a mission. I did soooooooooooo much foot work jumping from uro to uro. For Christmas in 1998 my hubby got me my first computer just praying that I could find a place that would help me and bingo! on my first hit I found the ICN [img]biggrin.gif[/img] What a relief it was for me! I sure do wish that you could have found us sooner so that maybe we could have been some help to you before you had the surgery done BUT, we are still here and we can still support you thru the emotional suffering you are going thru now. NO, we can not make it go away, but we can listen and we can keep you on our prayer list.

We NEED people like you and stories like yours on the ICN because what happened to you can NOT be wasted and if you don't share it, it will be a waste. If you save just one person from having to go thru what you have been thru than you have helped another soul and some good will come of something so horribly bad. Same thing with Jazzy, she has such a story to share.....I pray that people who don't feel free to talk about all that they have gone thru are at least PMing each other. I'm not real crazy about the pm's but thru them, you can exchange e-mail addresses and you can share your feelings with another who is going thru exactly what you are.....

tons and tons of gentle <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[codyryonwoodward]

Chady-- I am really sorry for all that you are going through with your interstim. I did not want to sound like I did not understand or hurt for you...I am so sorry that no one gave you any kind of information before you got the stim. Your doctor and your rep were WRONG for that.

I know many things can go wrong with the stim, I was just trying to let people know that with all the bad that it has caused some people, for other's it has helped. I got my interstim 6 months after diagnose but during that time I tried other things. My doctor also suggested the stim the first time but I refused. I wanted to make sure nothing else would work first. But after years and years of people and Uro's telling me nothing was wrong with me I felt I had no other choice. I did alot of research on it to. I also went against my husband choice. But only you and other's that are in the boat can know what it feel's like.

I wish you the best for the future. And I hope that one day you can get over the damage that it has done.

I keep praying everyday that one day they will find a cure for this awful dis. and each of us can feel normal agian.