considering interstim worried with elmiron

[gymcoach]

I told the doc to go ahead with talking to insurance about doing the interstim. Test first. Anyways, my concern is having surgery while taking elmiron. Elmiron is only a mild blood thinner, but I don't think surgery while on any blood thinner is a good idea. Also, if you stop elmiron for surgery and go back few weeks after surgery you lose all the time you had already taken it, don't you?
I mean elmiron has to be continuous to be effective. Also, anything near my spine makes me nervous. Does anyone know the risks of paralysis with this procedure? And is it worth all this? If the trial works is it going to be a huge difference?

[Melanie]

I take Elmiron and have had 3 Interstim trials and 3 Interstim staged trial surgeries. I asked my Dr about the Elmiron blood thinning effects. He said that is a very mild blood thinner, less than aspirin. He said that I didn't have to stop taking it, but if I wanted to do I could stop taking it a few days before surgery. I did this, not so much for blood thinning, but for bruising.
Also, you should know that there is very little blood loss in the Interstim procedures. In the trial, you will barely bleed at all. The surgeries you will loose a little blood, but not enough to warrant donating your own blood or anything like that. So honestly, I wouldn't worry too much about the Elmiron or the blood loss.
As for whether or not to go down the road of Interstim, it is considered a last resort treatment. Please carefully consider this treatment with your Dr and family.
take care,
Melanie

[Kara23]

I had the Interstim surgery March 9th and took Elmiron for 2 years right up to the very night before surgery. You don't have to stop taking it. I am happy to say I'm here and doing just fine....no blood loss. Have little fear for it's not as bad as you are thinking. I was really worried about the Elmiron too but my doc assured me that he wouldn't go through with the surgery if he was afraid of that happening. So I took the Elmiron as usual the night before surgery.

For me the surgery was well worth it. I can go 2.5 hours at work and before it was every hour or less on a bad day. On the weekends when I am relaxing I can go up to 5 hours with out having to pee. It also reduced some of my pain. I don't feel like I am going to throw up anymore right before I go. I can hardly tell that I have to go. The urge is very slight now where as before it was murder. My doc told me that within 6 months I should be feeling better and better and be able to hold it longer and longer.

For your information...He took me off of the Elmiron as soon as the surgery was over. He looked at my bladder and saw that the Elmiron did nothing good for me and didn't help at all. I have a VERY SEVERE case of IC.

It's important to talk about your concerns to your doctor and to read all of the information carefully. Only you can decide if it's worth it or not. I'm 24 and willing to try anything out there and I'm still willing if anything new comes around.

Good Luck

Kara

[This message has been edited by Kara23 (edited 05-09-2001).]

[Teri]

For what symptoms are you interested in having the implant done? Do you know that it's NOT FDA approved for IC? I have the implant and have had great luck with it but I only had the surgery done after every other available treatment had failed and I ended up housebound because of needing the bathroom every 15 minutes and pain.....
Sounds like you need to go back thru our boards and read some of the pros and cons to this surgery. How many times has your uro done the surgery? How much studying have you done in regard to the surgery? Did your uro offer you the info packet and video from medtronics? If not, you can call them. I believe the # is 800-664-5111 ext 3000. That is the latest # that I have.
This is major surgery and it's something that shouldn't be entered into lightly....I sure do wish that you would have shared a little more of your story with us.
If you decide that this is the best road for you to take, I wish you the very very best...feel free to ask anything you want regarding the trial and the surgery, there are alot of people willing to share their experiences.
hugs teri

[Ruth N]

Elmiron is a weak blood thinner and does not stay in your system long. I have had interstim surgery, shoulder surgery and hysterectomy while on elmiron. In all cases I stopped the elmiron for 24 hrs before surgery and resumed it immediately after surgery. You do not have to stop it weeks in advance like you need to with aspirin or non-steroidals. But obviously your doctor and surgeon should tell you what YOU should do.

You don't say much about what your symptoms are and what treatments you have exhausted. Whereas I don't necessarily think you hve to suffer for years and years before trying interstim you certainly should give numerous other treatments a fair try before considering interstim.

Interstim has made a dramatic difference in my life and I would do it again in a heart beat, but read the posts and archives and you will also here about people for whom interstim was not successful and have gone through so much. And one of our "interstim successes" just had to have the surgery done again after 2 years because the wire broke. This is new technology and there are risks and no guarantees. You need to understand that.Take your time to learn as much as you can, ask many questions before making a decision. I am not necessarily trying to discourage you- I would personally do it again in a heartbeat. But everyone who tries interstim needs to do so with their eyes wide open. Ruth

[gymcoach]

Sorry that I didn't give you more info before now. I never really know how much to include and I do tend to ramble. Ok here goes. I have had ic for 4 years but have had a more recent diagnosis. I have tried bladder spasm medications, ditropan and detrol. I can't take them, because they seriously alter my vision and doc says it will only worsen. I take 4 elmiron a day and he wants to continue with that, saying it can take years to help completely. I also take zyrtec with the theory that my ic is worse during allergy season and the possible connection. I did pelvic floor therapies and bladder washes with no success. I have severe bloating and swelling in the lower abdominal area. My pain is managable, I can take it and don't let it get me down too much. Although, this is taking away from my life, and I spend most of my evenings in bed while my life falls apart around me, because I can't do the things for my family that I used to be able to and there is noone else to do them. It is having a serious affect on my children. I have frequency, urgency and severe bladder spasms. My bladder does not empty completely due to the spasms and leads to numerous infections which lead to cipro which lead to yeast which lead to bacterial vaginal infections. Endless unbearable cycle. The urgency is so bad, I don't make it the bathroom at least once a day without some leakage. I have little or no feeling on when I need to use the restroom and when I do not. Doc says in light of this information, I am a classic candidate for interstim and we can do the 3 day test to see if it may help and if it does then we can DISCUSS having the actual surgery. So, I haven't really decided if the surgery is for me. I have decided that I am not happy living the way I am now. Thanks for the write backs, and please continue to write. I appreciate the input. I read a lot off of this site and do the research.

[Teri]

thankx for that added info gymcouch NOW I would say go for the trial. The interstim helped with all of my symptoms except the pain. I still have bladder spasms and I still have to self-cath at times (because my bladder will NOT empty when I am flaring) and my uro says that I may always have to do this. My trial went very smoothly and I knew immediately that it was working for me....

wishing you the VERY BEST teri

[Amanda]

The last three surgeries I have had, they had me stop Elmiron ten days prior to surgery.

Amanda
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