ARTICLES for PAIN STIM

[yvette]

I've posted this before and I'm posting it AGAIN!!! biggrin.gif

I have contacted Medtronic on 1/11/02 and their support techs were VERY INTERESTED in what I had to say. And Medtronic's tech support reinforced the fact that Interstim is not meant for pain. They are VERY displeased that there are REPS and UROS pushing this on patients and making claims that it will cure pain. So, they are investigating regarding my concerns. I would like to make clear I do not have a problem with Medtronic, they always been honest and up-front with me. I have a problem with their Reps and the Uros who spew false information.

Please read, don't just skim it please.

We should all know Interstim is not for pain . This issue makes me so mad. I hate that paitents are misled into thinking Interstim will cure their pain...ugh! mad.gif

HOWEVER, I found the proper links in regards to NEUROSTIMULATORS FOR PAIN they are both from the Medtronic site.

The device is called SYNERGY® SYNERGY ARTICLE (http://www.medtronic.com/news/articles/100198141622.html)

HOME PAGE FOR PAIN TREATMENTS (http://www.medtronic.com/neuro/paintherapies/pain_treatment_ladder/neurostimulation/stimulators_stim_sel/neuro_stim_stim_sel.html)

Hopefully this will help those seeking a Nerve Stimulation Device for PAIN.

Thank you for taking the time to read this!
y. smile.gif

[Amanda]

My rep in Michigan has always been up front with me--- sad that the others are not.

Good luck,

Amanda

[yvette]

Thank you Amanda. My rep and Uros were people I could count on for correct info. It is unfortunate for those who were told otherwise. I hope I can help.

y. smile.gif

[yvette]

~~~~*BUMP*~~~~

[KimS]

Hi Amanda, I'm curious to know who your rep was in Michigan. Have you had the Interstim implanted, and if so how are you doing? Kim

[Edited by ICNDonna to remove negative statement regarding a specific individual]

[yvette]

~.~.~REPOST~.~.~.~

[ICNJess]

I agree, I hate it when people are duped into thinking it is for pain!!! It makes me angry!

[tigger_gal]

Count me in on that too, I hate when drs say that its for pain.. I am so glad my dr explained it was not for pain...
hugs
brat

[Zipper]

deleted

[yvette]

Wow this is a really old thread that has been resurrected. eek

Decnie: It is possible for your pain to be relieved -- but that is only an additional perk if it does. Its not meant for pain, nor has been studied or approved for it by any stretch. Same goes for alleviated symptoms in IBS. I got a tremendous respite from IBS attacks -- but its just a nice side effect of the InterStim. I understand that that*perk* could just stop working.

I don't think your doctor is being deceptive -- it sounds like he's giving the best possible scenario, and he DID tell you what it specifically is meant for. He sounds to be approaching it with a positive outlook I think that's great.

Yes I think he being honest with you. :)

[ICNJess]

I had pain relief for a short while, went into a remission. Then all of a sudden it came back. :( I still love my stim though LOL

[Teri]

Thanks y~everyone wants to believe that there is a pot of gold at the end of the rainbow and when they find out there isn't, they just can't beleive it happened to them.

I am going to try to get the last name of the rep we use to have and make a complaint with medtronics because not only was he making these false promises, he was talking about other patients situations to other patients........NOT!!!!!

Tonight I saw on the news that Jerry Lewis does have the pain stimulator made by medtronics and he said it's given him his life back. Welp, you know how many times I've been messed with and there is NO way I am letting a dr get that close to me again but someday it should be a wonderful treatment for soooooooo many chronic pain conditions, not just IC.

love ya sweetie

[tigger_gal]

I recall asking my uro straight out if I would have any pain relief. He said to me "The Interstim is not for pain, just frequeny and urgeny Do not count on it if it dose its an added perk, but he doubted it seriously..... and believe me when I tell you its not for pain.
Hugs
Brat

[rachelm]

I feel very fortunate to have a urogyno that is very upfront with me too and always goes for the least invasive treatments possible. When things weren't getting better for me on meds. and rest after a month of being home bound my uro suggested a trial of about 2 weeks not for an end result of perm. implant but to get me through the worst of the flare. He informed me that it is not marketed for pain but most of his patients see some pain relief at some point with their stim. I knew after my research that it would just be an added perk but it has definitely helped me with pain. I just finished my 3rd week with the temp. trial stim and I'm completely off morphine. I was taking 30mg every 4 hours around the clock and it still didn't completely get rid of the pain. I also had complete retention but the urgency that never left even when I self-cathed and knew there was nothing left. I feel that a lot of people who have success with their interstim don't post on the boards because they are out living their lives.

I know that while it's sad to say I'm mostly on here when I'm in the midst of a flare and need support. I'm going to try to post more when I'm doing well this next year.

I'm lucky to have a urogyno that told me upfront he thinks that we can manage my seasonal flares with temp. interstim. He explained that many of the problems occur with the implant site and not just the leads as I have now. I asked if we should just put in a perm. one sometime this summer but he wants me to try just getting a temp. once a year if it works this time. I have found noone else who is doing this but it's working for me. I hope I won't need another one but if I do next year when I flare in the winter I won't hesitate.

We also discussed the neurostimulators for pain. While they really help a lot of people they are much more invasive than the interstim because they are attached to the spinal cord. I would try it though if I hadn't had such good results with my interstim. My dr. wants me to keep my temp. wires in until they move since I'm doing so well with it.

Rachel

[Dixiefireball]

Thank you for your post!
about a year ago i went to a pain clinic I DON"T NOW AND WILL NOT GO BACK. this doctor tried his best to talk me into getting it and he told me it was for pain etc etc, but thanks to this board and the very careing people i learned it WAS NOT FOR PAIN. i don't have much urg/freg. i have some but not alot so that would had been a waste of my time plus a waste of money to have this done. i still don't know much about it but i'm very pleased i had careing people here to tell me what was right and what was wrong.
I Do think this is a very important fact that everyone needs to know when thinking about this.
Everyone keep up the good work ya'll really saved me a pain in the butt so to speak.
hugs and prayers sent out to you all.
Rhonda

[Teri]

Rachel~I'm confused as to how you are hooked up with this temp for so many weeks. Where is the device itself? I understand how the wires are put thru a hole in the cheek of you fanny but where is the device and are you able to reprogram?

thankx~t

[rachelm]

Rhonda,

I too seem to have more pain than frequency/urgency. But when I flare I get urgency and retention and that feeling that I'm never empty. I rulled the interstim out as an option last year when I learned that it wasn't marketed for pain. The main difference between the stimulators for pain and the interstim are 2 things:

The pain stimulators (ANS and medtronics version) are multiple stimulators along the area that the leads attach, versus the interstim that is just one or two leads with 2 places of stimulation.

The other difference is that the ones for pain attach to the epidural space or the spinal cord and the interstim attaches to neurve endings from the sacral nerve not the spinal cord.

If my dr. had told me that he wanted to do a perm. implant I would have said absolutely no way! But he has watched my severe flares with remission in between. He specifically told me that he did not feel like I needed one permanently and that he was hopefull that the trial would pull me out of the flare. The great thing about the trial is that it's just a few wires inserted in my back and taped down on the outside. The leads are then attached to my outside box. If I had a problem with it, my dr. said he would pull the wires in his office and that would be the end of that. I wouldn't have to deal with the risks of the perm. implant but I would still get the benefit of the stimulation. He explained that many people don't need stimulation along a wide area and will respond with decreases in pain by the simpler stimulation of the interstim. Yet he still tells me that it's not for pain but most of his patients have some reduction in pain.

Teri,
I have the old trial because my dr. intended for this to be temporary. He inserted the wires through a needle in my back, placed a lead on both sides of the sacral area and then taped the wires on the outside to my back. They have slack that I can then plug into the trial stimulator one at a time. My left side has moved a bit so now I'm plugged into the right side. The trials that most people do now are intended to lead to a perm implant so the leads are placed through an incision and attach to surrounding tissue then to come out in the hip and attach to the trial stimulator. He told me that he has seen my kind of trial last a patient up to 6 weeks. The main concern is getting checked for signs of infection where the wires go in my back. Other than being sick of the tagaderm tape on my back it's been a breeze and definitely an answer to my prayers. I've heard some people here say that you can only leave the trial in for a few days but I've had no problems and am back to all my usual activities. I couldn't twist, bend etc. for the first 2 weeks but now my dr. said any additional time with the leads in place is just a bonus so I don't have to be so careful. At first I just wanted to give it the best possible chance of working and thank goodness it did!

I hope other uros begin to see this as an option for those like me.

Rachel

[Teri]

Thankx Rachel;)
Your procedure is the same way that I had my first trial done and I liked it ALOT better than the staged trial......you had me confused:confused:

I pray that this continues for you and think it is a wonderful idea. You dr is trying to get the message between the brain and the bladder jumpstarted and I think that's wonderful. WE may get lucky and they may find that something like this is useful for us ICer's.........

tons of hugs:blink:

[sunshineandhope]

thanks so much for telling others of the two devices made from Medtronis's. I have the synergy neurostem for my I.C. pain which also stopped my urgency and frequency. I love it and have had it for almost a year and a half now. I hope others check into this device if they are concedering a neurostem from medtronics.

[rachelm]

Sunshine,

Our plan is to see how I respond to the permanent interstim because I had a remarkable reduction in pain and retention with the trial. If the pain returns and is out of control again then I will be discussing the Synergy or other neurostimulators. I hope this less invasive InterStim does the trick but I'm not afraid to go further if I need it.

Rachel

[MakinIT]

Hi yvette

i saw your post and am excited because this must what my pain doc is talking about, rather than the interstim. I was so confused because pain is my major symptom and now I've printed that page off so I understand this one is specifically for pain.

Thannks much!