Got an answer back from Medtronics, the maker of Interstim

[ICLori]

I wrote a long letter to Medtronics, asking about how long the device tends to work in patients, what I could expect etc. I can't remember now all the questions I asked, but I had prefaced the questions with a brief introduction to my situation, saying I was an IC patient whose urologist was recommending Interstim because other treatments had been tried and failed.

They answered me back in a nice short letter, saying they could not answer my questions, had no data, because Interstim was not FDA-approved for use in IC patients.

:rolleyes:

How helpful.

Blessings, Lori

[tigger_gal]

Lori,
They are correct interstims are not fda approved for ic...... However they are fda approved for frequency and urgency. Medtronic's know's there is more to IC besides frequency and urgency... If it was advertised for IC then we'd all expect it to help our pain, and, it is not a device for pain.... so they cannot put there self in that postion. I know its all confusing and someone says one thing, and someone else says another.. My best advice to you is to do research on it. I researched over a year before I did this. I have had mine over a year now and don't regret it.... you and you alone have to decide if it will help you... you can ask you dr.. if I choose I don't want this once it is in will you remove it??? his answer should be yes, my doctor's answer was.
sending you lots of hugs and prayers. You will know for sure if you want it during the stage trial.. it will help or it won't..... It has to be a decesion only you can make, and believe me I had emails that said don't do it because of, but, I also got email that said the interstim was the best thing they ever done... I am one of those that have to say it was the best thing I have ever done......
hugs to you
Brat

[ICLori]

Thanks, Brat...it's a really tough decision to make. The only research I've done besides at the medtronics site, has been reading anecdotal accounts. I'm having a hard time getting hold of facts and figures related to this, and how it helps IC patients.

If I do end up doing this, it will be a leap of faith because really all I have to go on now is anecdotal reports of either success or failure. No good scientific studies done on IC patients.

First I want to see if I do okay just on pain meds. Then I want to see if TENS helps me (they gave me a referral but the local army hospital only does physical therapy and TENS on active duty, not on dependents so they won't see me, I do have a call in to the doctor both yesterday and today but have not been called back yet.), or percutaneous nerve stimulation which they are going to try too. The less invasive, the better in my book, if it helps.

I don't know at this point what decision I will make. I know that Interstim sounds better to me than bladder removal, but I still want to see if I can get by with pain meds, PNS, TENS, that sort of thing because those things have less likelihood of going wrong.

Blessings, Lori

[tigger_gal]

Lori,
I agree with you the less invasive the better,, they should have a type of insturment that you can use the tens vaginally... I hope this works and the meds help you.. you know you can email me any time for any thing..
hugs
Brat

[ICLori]

Thank you so much, Brat.

Right now, I am doing so well on the pain meds (except for the flare caused by my bad reaction to Neurontin) that I am reluctant to take the chance on Interstim.

I am getting the reduced frequency/increased capacity that Interstim patients get, from Percocet. So if I can get the benefits just by taking a pill...does it make sense to take the chance on surgery?

Blessings, Lori

[Pain]

If it was advertised for IC then we'd all expect it to help our pain, and, it is not a device for pain

This is key Lori. You are on PAIN meds...for PAIN I take it so it does not sound like the best choice, especially when you are able to take the pain meds and get some relief. Never hurts to do research..just be sure to do PLENTY of it before taking a major step...that would be my suggestion.

[Teri]

Lori~since your pain meds are doing the trick I think that's your best bet. I went thru 2 years of hell before I had my implant removed. My neuro said that she thought that my body was trying to reject the device in my body and as soon as I had it taken out I got relief.
There are so many pro's and con's to this subject but don't expect an honest reply from Medtronics or most dr's. There are too many dr's doing their own studies as to the results they are getting with the device BUT they are only using the numbers they want to use. They are not giving 100% honest results.
We are all looking for the magic treatment that will make this horrific disease go away but please remember, the device should only be used as a last course of treatment. And, like Brat said, make sure that should you ever have the surgery, you know ahead of time what your dr's beliefs are with regard to removing it. There have been too many girls who have needed it removed only to find their dr's not willing to do it......
wishing you the very best~

[BLOORE74]

I have an interstim & my doc told me we were trying it 4 the largest reason -pain! I don't know if I would reccomend it, it is quite a long process, research it thoroughly, be 4 you do it. With no thanks 2 medtronic!