INTERSTIM

[ebarrs]

HI, I HAVE A QUESTION ABOUT INTERSTIM. I DID THE 5 DAY TEST TRIAL AND IT HELPED WITH FREQUENTCY SOME ON ONE SIDE. BUT IT DID NOTHING FOR THE OTHER SIDE AND DIDN'T HELP WITH PAIN AND PRESSURE. I AGREED TO DO A FIRST STAGE TRIAL FOR 30 DAYS, BUT WHEN TALKING WITH THE DOCTER AT THE PRE-OP, HE SEEMED APALLED WHEN I MENTIONED HOW DOES IT COME OUT IF IT DOESN'T WORK. I AM VERY SCARED ABOUT THE WHOLE THING, MY MAIN PROBLEM IS PAIN.

[ICNJess]

I am appalled myself. Interstim is NOT for pain. I am so sorry that you went through all of this. I myself only have one side of the Interstim in--the other side didn't do anything for me. What do you mean a stage trial for 30 days??? Mine was only 2-3 weeks! I have never heard of 30 days...

Anyway, it shouldn't be too hard to take out since you are still in trial mode if I understand correctly. I am so sorry you went through all of this, and that your doctor told you it was for pain. It is by no means not for it.

[tigger_gal]

ebbars
Hi there please go to www.interstim.com and read up on the interstim, and, get your facts straight Please look at there side effects that are posted.
I have never heard of a 30 day trial. Is this your doctors idea? your leads that come out of your body with a staged trial can become infected with such a long period of time. They need to be kept clean and the dressing changed every day.. 30 days is impossible to believe..
The interstim is not for pain its for frequency and urgency your doctor should know this, and, told you this.
If the trial of 5 days worked why did he not do the implant? If the interstim dose not work.. but I am sure it will (but, not for pain) because you had a 5 day trial with success, the implant will be surgerally removed.. no need to be scared its easy to take out as it is easy to implant.
Brat

[ebarrs]

THE 30 DAY TRIAL IS IMPLANTED JUST LIKE THE INTERSTIM BUT WITHOUT PUTTING THE DEVICE IN. WHEN I ASKED IF IT DOESN'T WORK, HOW WILL THEY REMOVE THE LEADS, HE SAID" I GUESS WILL HAVE TO GO TO OUT PATIENT AND PUT SOME OFF THEM OUT, YOU MAY HAVE A WIRE THAT GOES TO THE DEVICE STAY IN YOUR BACK.

[dyno]

Hi Ebarrs,
I have not had the interstim, I do know some about it though. This sounds a little upsetting that you were not told that it does not help with pain. I continue to be upset with Dr.s who don't explain all this to the patient. Maybe talking with some of the gals on here who have had this will help you know if your Dr. should be doing anymore with this or whether you should find another Dr. in your area to work with.

You are dealing with your spine here so you have every right to be concerned and ask questions. If something your Dr. is telling you just doesn't seem right or you still question, find someone else to ask.

I just wanted to come in here and give you a "hug" and tell you to hang in there. Don't forget another good person to call if you need to is Jill, the founder of the ICN. If you can't find what you need maybe she can steer you in the right direction. The number is at the bottom of the page.
Good Luck and let us know how you are doing.

Jolene

[peiti]

Hi,

Just want to share what I know here. I know a lady who has been through 30 days of InterStim staged trial. Her frequency was not decreased a lot in the first week so her doctor and the Medtronic rep agreed to have her test for 30 days. Unfortunately, she wasn't helped a lot during the test. The doctor surgically removed the lead in an operation room. I don't think taking out the lead is difficult. The doctor who placed the lead into the lady's back for test didn't take it out himself. Instead, he asked other doctor to do it.
When we are discussing trials here on this board, we'd better make sure we are talking about the same trial. As I know, there are two different trials. What I had was a new trial or called staged trial. It requires a surgery to place the lead in and an over night stay at the hospital. If it doesn't work out, there must be another surgery to take it out in the operation room because the barb on the lead may already be hooked with the body tissue.
Hope you can understand what I try to explain here.

[Teri]

I'd be runnin' from that dr honey......
first off, he lied. It does not help with pain, was never intended to work for pain and IF someone does get the benefit of some type of pain relief, it's just a bonus.
I've had both the original and staged trial. A 30 day trial was out of the question because of the very high risk for infection.
Someone correct me if I am wrong, but Medtronic's is a corporation, not a surgical company.........
I had my original leads taken out after 2 years. It was more complicated than my dr thought it would be but it IS done. Then, after 2 years into my revision, when it was evident that the device was not going to work, I had the lead from the staged trial removed when he removed the unit. There is NO WAY that I'd let a foregin object stay in my body if it weren't helping.
You have many major decisions to make. I know exactly how hard this is for you right now and I will be saying some extra prayers that God will show you the way........

tons and tons of gentle hugs~

[Mimi-in-Chicagoland]

Do you have urgency/frequency? That is all that the FDA has approved the interstim for. You need to have the leads removed if the interstim doesn't work. You cannot have an MRI if you have that wire on your spine...it could heat up during the scan and burn you. There's no point having it there if its doing no good. What I personally would do at this point is find another doctor! There is no way I would let him unsuture that off my spine...its obvious he has no idea what he's doing.

[Mimi-in-Chicagoland]

What do you mean that it only worked on one side? Did they put in two wires...one on the left and one on the right?

[sunshineandhope]

Hi,
I don't come on this message board to often, because it seems that no one realizes that Medtronic's does make a device that does help I.C. pain. My pain Doctor for years has implanted the synergy neurostem for many intractable nerve problems. The last year he has been using it on I.C. patients as well. It is a bigger surgury, but is able to reach both sides of your pelvic floor and up into the bladder. It also helps with urgency and freguency as well as I.C. bladder pain. It is fantastic for me. I had so much bladder pain. He has a huge practice and I have never had problems with the medtronic rep either. They are avilable every Wed. I am sorry to hear of so many problems. I am glad my doctor found Dr. Charles E. Anderson for me. He is in Palm Springs Calif. 760 416-4655 and ask to talk with Allison the coordinator. She is great and so is Doctor Anderson. I wish you all well with your I.C. I know for myself I wanted my life back and now I have it. I still have I.C. and shutting off my device can tell me in a short time what a blessing it has been for me.

[rachelm]

ebars, I think some people may be misunderstanding the different kind of trials that are available. It sounds to me like you have what I have its the old trial thay is inserted by needles guiding the leads into place. The stage trial is when they surgically place the wires with the barbs in place. My dr., whom I trust with my life, as well as the medronic rep. have suggested doing a stage trial for a month if my symptoms return when these wires are pulled out in an office visit. The stage wires are from what I understand the actual wires that later connect to the internal box that's implanted. The reason it can last longer is because the barbs on the leads keep it in place. What I bet your refering to as sides is what I have done too. There is a wire coming out of the left and right side but the test device will only allow one to be plugged in at a time. My guess is that when you switched sides the lead may have moved out of place causing less improvement.

The trial, for me has had a benefit of pain relief but I know that it is not approved for pain nor is there any guarantee for pain relief. I still have pelvic and hip pain but its not as bad. The interstim is also aproved for retention which is what I had. I haven't had to self-cath since I got the device!

I'm sorry you haven't had results yet and it will require some deliberation as to whether or not you continue. I'm planning on leaving the trial (not stage) in for 2 weeks if it lasts that long in place. My rep explained that sometimes it takes 3-4 weeks for the nerves to start responding to stop the frequency/urgency or retention. This is probably why your dr. is suggesting a month trial. If you want more info. you can call medtronic or talk it over some more with you rep or dr.

I know that this isn't for everyone but it has certainly given me my life back and its going to be hard to give it up when my trial is over. From what dr. said I could still have my stage trial removed if I wanted it to be. In fact my dr. is considering that an option for me since I get better usually in the late spring. He is looking at the least invasive way possibe to get my syptoms under control.

Sunshine, I definitely am going to ask about the device you wrote about. I knew there was a device called an ANS that was for pain. I also learned that medtronic made a similar one too. I asked my dr. assistant about it but she said ANS wouldn't treat the bladder directly and that she reccomended the interstim first to get the cause of the retention and pain under control. I never brought it up with my dr. but I will when I see him next week. Thanks for the info sunshine!

I wish you luck as you make this difficult decision. I will be praying for you.

Rachel