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The ICN has never accepted money (kickbacks) from Medtronic

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    patricia1
    ICN Member

  • patricia1
    replied
    Thanks ISOnormal. I think that is what we all want. To successfully treat and cure IC and in order to that we have to be able to try and experiment with new things. That is why I went ahead and tried it and why I elected to do the revision when I had a problem with it. Not so much that the unit failed me, but because of the car accident my wires moved and cause great problems. Still not having the luck I did the first 6 mths with mine who know what the future holds. Maybe the Bion will be our shining star as the InterStim has been for those it was intened for...

    Leave a comment:

  • ISONormal
    Registered User

  • ISONormal
    replied
    Good comments, Patricia1 and icsonja. I think both the ICN and the ICA are doing a great job, in their respective areas. They each have different strengths, I think. I understand it's a bit competitive, and it behooves all of us to keep aggressively doing our own research as much as possible about various types of treatments. We do better when we work together because we all have the same ultimate goal: to successfully treat and cure IC!

    Leave a comment:

  • patricia1
    ICN Member

  • patricia1
    replied
    I feel like Sonja about being " guinea pig" . That is exactly what I felt like in 2001. Then the Interstim was even newer then than now. I did not jump right on that band wagon and I researched and waited several months before trying. But unless someone tries something to help with their disease's we will never know if it truely works for us. I do believe that the interstim does help greatly with the folks that the FDA has approved it for. And this is why it is still not approved for IC. I do think it reacts differently. And although I am on my 2nd one, I am still not a happy camper with it. But I totally stand behind those that it has helped greatly, like Kim (EmilyRose197377) she has been greatly helped by it, with her cathing, and I am sure she is enjoying not having a UTI. But I am also disappointed in the same breath for her for some problems she is encountering with infection problems with it. And this is a possible hampering when electing the Interstim.

    But as far as money issue's go, like Dusty, Jill helped me greatly with trying to get ahold of someone at Medtronics. Although they were not of much help. Because the 2 doctors in my area who did the interstim, one had moved and the other was the org doc who was now telling me my problems were normal. It was all up to me to find someone else and that person came along 8 months later. That is one problem with this device, the lack of phys qualified in doing the Interstim. And I personally feel that over half, maybe be certified from Medtronics, but I dont feel they are complet. qualified. For the fact that the doctor that did my first one, could not even tell my problems where major problems with it and not normal. Seems to me that they should not only teach them how to put it in, but what can come along afterwards with problems with the device and to be able to reconized these. My doctor now came from Tennessee and being associated with a teaching hospital he could leave at anytime and then I am left alone again.

    Okay I am now off my morning soap box. But remember for every success there are more non-success with a treatment. But in order to forage ahead with our disease we will encouter these. And we must be there for each and everyone of us.

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  • emilyrose197377
    Guest

  • emilyrose197377
    replied
    For me the interstim has been a life saver . I can urinate on my own and I don't have to self cath . Interstim has given me back my life.

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  • icsonja
    ICN Member

  • icsonja
    replied
    It is too true that medtronics is NOT looking out for the best intrests of IC patients, their interest is in their bottom line, plain and simple. Jill I have no doubts you did not recieve money from medtronics, you are as wary as most of the effecacy of interstim in IC patients.
    Most know of my experience with interstim I was so excited by it prior to the implant and so crushed by its dismal failure and the pain it caused me.
    I belive to get better treatments we will have to play " guinea pig" who are they going to try IC treatments on if not us? Interstim is a great example of a device that works well for the people it was approved for, we are not in that group, they should not of assumed "if it works for Over active bladder it will work for IC". We don't work the same, our nerves react differently to the interstim.
    But as I said, nothing is learned by sitting still and I am going to have BION implanted soon, it may not work, it might, but I will never know until I try and you all will have the benifit of my experience to help you make future choices. I have used others who have BION to help me with this descion.
    But when a product is causing permenant damge and pain something must be done or people will die, we owe it to ourselves and all who follow in our footsteps to report all negative outcomes to the proper people. And to be honest here, so that others have all sides and can be as informed as possible.
    We don't have to fight, or resort to taking sides, we are ALL in this together, we must work as ONE or all will lost.
    Wishing you all a painless day,
    Sonja

    Leave a comment:

  • patricia1
    ICN Member

  • patricia1
    replied
    We may come to find out that the InterStim just does not help as well with IC symptoms. Even with my Revision done this past May, my symptoms are still as bad and the unit is not working like the first 6 mths I had mine in 2001. It is prescirbed for other urinary problems and we might find that this is what is helps with more. Like wetting and people who have to cath all the time. Only time will tell with this treatment.

    Leave a comment:

  • Katherine
    ICN Member

  • Katherine
    replied
    My interstim has never help with IC but it has helped with wetting on my self .
    I still have IC just as bad as I did the day I first had it put in some times worse when in a flare.
    Katherine

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  • janetm
    Registered User

  • janetm
    replied
    speaking up about bad implant reactions

    I have not posted here in a while. I agree with dgrumble that no one is looking out for those of us who have serious negative consequences from the Interstim. There is a one page FDA form that can be used to report our experiences. I am including the URL here below. There is a box you can check to say you don't want the manufacturer to know your name. The form does ask for the model number of the device. I called my doctors office and they told me what it was. There are other boxes that ask for serial numbers and other technical info about the device. I have assumed they can get the rest of that from the doctor themselves.
    I agree an actual IC implant study should be done. I also feel that bad reactions should not be ignored. Maybe they could figure out why some pople should not receive the implant or how to help people who have reacted badly to it.

    This form is at the following website. The report can be made online or mailed in.
    http://www.fda.gov/medwatch/getforms.htm

    Leave a comment:

  • tigger_gal
    ICN Member

  • tigger_gal
    replied
    Thats true I was looking at it as a different point of view.... seeing that it was a device, not a medication..
    Elmiron did not help me either....
    Brat

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  • dancemomof2
    No longer active

  • dancemomof2
    replied
    Donna I agree i have been back on Elmiron since june of 2004 and have had no luck with it this time. Before getting pregnant it worked well. I wonder if hormones could have something to do with the fact it doesn't work the second time around.

    Leave a comment:

  • ICNDonna
    ICN Staff

  • ICNDonna
    replied
    Approval by the FDA does not require that a medication or treatment/device will help all IC symptoms. What it does require is that studies be done and comparisons made between pastients without the medication/treatment/device, including any potential for side effects and the percentage of patients suffering side effects.

    Elmiron does not help all IC patients --- and it was approved for IC. DMSO does not help all IC patients --- and it is approved for IC.

    It does take time and money to get FDA approval, however.

    Donna

    Leave a comment:

  • tigger_gal
    ICN Member

  • tigger_gal
    replied
    Wonder why someone thought that you were recieving funds from Medtronics, to promote the interstim? we have lots of boards on here for different treatments and medications. That don't mean you take there money. ggggrrrr
    The kick back that is under investgation wasn't for the interstim was it? I thoguht it was for another type of device... I recall reading it and now I can't remember.

    Medtronics cannot tell people that the device is used for or on IC patients because it is not FDA approved for IC.. It is IC approved for frequency and urgency, overactive bladder so forth and so on... If the interstim was fda approved for IC, it would have to help all the IC symptoms.. They (doctor's, IC specialist, IC researchers) don't even know why or how come IC came about, until then they will never come up with a solid treatment, like they have for other illinesses.
    It's really sad that IC has been around for numerous years, and we all have different symptoms and they cannot come up with a medication thats suits all IC patients...
    They can transplant hearts, livers, lungs, and kidney's.. yet they have never sucessfully been able to do a bladde transplant. When I die... please remind people that my bladder goes to IC research and my organs go to people on transplant lists.... I watched my best friend die, she had cryptaginic scerosis of the liver.... she got her liver, and it had hep c, she died 6 months later. This is why I choose to issue out my organs, so I can save someones life when I die....
    Brat
    tigger_gal
    ICN Member
    Last edited by tigger_gal; 06-17-2005, 11:57 AM.

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  • patricia1
    ICN Member

  • patricia1
    replied
    Hi drgumble, dont feel alone. I to have the interstim have had major problems and have had a revision done this past may. Some of my stories are in the failure section on here. Best of luck to you...

    Leave a comment:

  • drgumble
    Registered User

  • drgumble
    replied
    ICA/ Medtronics

    I had a failed Interstim trial- I held off from the procedure as a last resort.
    Medtronics name is al over any ICA published patient information and thats why I decided to try the device, My IC was out of control,, being a male, unable to work, I felt that if the ICA was supporting this device maybe it was for me. The placement in the sacral area can cause severe damage to the sacral root nervious system, it not only control the baldder but many many other systems as well. IC patients are left in the dark about the whole picture of this device and the related problems that the procedure can cause.
    Look,,, the ICA can"t for the sake of money disrespect Medronics or publish bad patient results or it could lose the companies support. So its win win for the ICA and Medtronics and lose lose for the IC patient.
    I contacted Medtronics about the failure rate as related to IC. And to my surprise, there are no clinical trials nor does the company realize that it's device is used in IC patients, (I have emails to verify this) So again, IC patients.... there is nothing wrong with you... its just in your head,,,,,,,,
    I'm sure you heard that before..........

    [email protected]

    Leave a comment:

  • icnmgrjill
    ICN Founder

  • The ICN has never accepted money (kickbacks) from Medtronic

    Someone asked me this morning if the ICN took money from Medtronic to promote their device. While Medtronic is currently the largest sponsor for IC activities in the USA & abroad, giving hundreds of thousands of dollars to the other IC groups, I want to assure you that we have NEVER accepted any money from them nor has it been offered to us.

    On the otherhand, the Medtronic Foundation donated an impressive $126,000 dollars to the ICA in just one year. You can see this at: http://www.medtronic.com/foundation/...ts_health.html.

    My only communication with the company is to request better patient care and support, especially for patients with complications.

    FYI.. A "kickback" is defined as someone who is being paid off for doing a procedure. Since neither the ICN or the ICA perform medical procedures, we are not in a position to accept kickbacks as is alleged in the lawsuit

    Yes, Medtronic is under investigation by the Department of Justice for allegedly paying kickbacks to doctors for doing spinal implants in its Sofamor Danek division. In early 2006, this case was finally released to the public and provided shocking information provided by a former employee. The complaint alleges that Medtronic embarked upon a campaign of bribery to encourage physicians to use their devices.
    icnmgrjill
    ICN Founder
    Last edited by icnmgrjill; 05-28-2016, 05:07 PM.
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