Why is Interstim a "last resort" option?

[Shelka]

Hi all,

I was just wondering if anyone could tell me why the interstim implant is close to being a "last resort" option? I've noticed that even for those who've had really positive epxeriences with interstim, some still always mention things like "keep in mind, this is a very serious choice, etc" in their posts. I was just curious as to why this is?

What are the possible dangers associated with it?

Sorry, I really don't know that much about it (isn't that obvious!!) and I thought it would be best to ask those who know a lot about it.

Thanks in advance,
Shelley

-----inserted by icnmgrjill on March 12, 2004 ------

Interstim is considered a last resort because that's how the FDA has set it up. If you look at the FDA approval for Interstim, it clearly says that it should not be considered until patients have tried and failed the other more conservative therapies (i.e. oral medications, etc.)

So, let's remember that Interstim is NOT a first line option for IC. It is surgery that can have major complications and/or major benefits. Just a simple review of the Medwatch database will show you the complication reports that have been filed.

I, personally, feel that interstim is certainly viable, particularly for patients with extreme frequency and/or incontinence. But, it is not approved for IC. It is not approved for pain. And, as yet, the company has not releaseed their FDA 5 year follow up study which should document surgical complications. Without that CRITICAL data, we can't really say what the long term risks are. Even with that information, it's important that every patient read about the potential benefits AND the potential risks. Further questions can be directed to me by phone if you would like to discuss this further.

Jill O.

[ICNJess]

Because it's an invasive surgery--you get two leads hooked up to your sacral nerves, and an implant if it is successful. I am walking proof of success. It's a 2 part surgery, and you should try all conventional treatments first. The surgery is very costly, also.

If you'd like any more information, click on my InterStim story. If you are interested in this treatment, if you have tried everything and nothing else works, please do your research, and do not really bother with opinions. Bottom line--do your research and form your own opinion...don't let people scare you.

Hugs and love,
Jess

[dyno]

Shelly,
Right off the bat I will tell you that I don't have the Interstim. I have researched it when it was mentioned by my Dr.

As you can see from the responses you have seen so far, there are success and probably more success than failures.

From my understanding from a post that Jill the founder of this website posted awile back, there are no published long term studies on Interstim.

http://www.ic-network.com/cgi-bin/ubb/ultimatebb.cgi?ubb=get_topic;f=47;t=000222


This is a link to when she said that.

As the other gals have stated you have to do the research, try all other options first and know that there are failures sometimes and be prepared for what impact that may have on your life if you are one of them.

All that being said, no one can make up your mind for you. There are many discussions on this site on the different Interstim boards listed and I would encourage you to expand the days out as far as you can and read on all the discussions if this is something you are considering. One more thing I want to add, there is no arguing the fact that Interstim is a necessary treatment for some people.

Good luck and hopefully you will find a treatment option that will work for you. grouphug

[ICchell]

Brat,
Thank you for that link,its very informative.

Michelle

[dyno]

Shelly,
I am going to give another link I just remembered when answering someone else. This is a link for an article recently printed in March 2004 Good Housekeeping. Teri first told us about it. This is a short version and you will have to buy it or read it at a library to get the full article.


http://magazines.ivillage.com/goodhousekeeping/hb/health/articles/0,,284594_615788,00.html


Another thing there are many people who can answer questions about this. Another good source of info is Jill, the founder of the website. She knows alot about the procedure and you can reach her by the phone number at the bottom of the page or by PM or email. She is a wealth of knowledge. It might be worth not only talking to those who have success but to also PM the ones who have posted failures and find out what impact it has had on their lives. You must know both sides of this coin. In my case, I felt it was more important to hear about the failures because I knew if it was a success my life would be improved. I wanted to know if it failed what else would I be dealing with in addition to the IC.

Good Luck to you and know that we are all here to answer your questions and we support you in whatever decision you come to in regard to any treatment option. :)

[ICNJess]

Shelka,

I PM'd you. :)

Hugs and love,
Jess

[dyno]

Shelly,
I was reading through things again and one more thing I wanted to add, don't ever be sorry for asking questions, that is what we are all here for. Everyone wants to help and give support. Have a great day. :)

[Teri]

Cindy~the only thing that bothers me about Medtronics findings is WHAT/WHO did they actually base it on????? My original dr dropped me. I had to go to current uro to have the revision done so does that mean as far as the oringinal dr who did the surgery consider me a sucess? There are other women who were on the boards long before you came on, this controversery has been going on for years. They are stuck with units in their fannies that don't work and the dr's who put them in aren't willing to take them out??? Are they considered sucesses?

I am the first to admit how wonderful this device can be. But, in my 5 years and 3 months here, I have seen so many interstim failures STOP posting because they did not feel they were getting any support. Shame on me for not keeping better address files because there were dozens and they just quit coming.

I don't trust anything that medtronics or their reps say. they are pushing a product, they are NOT dr and should NOT be giving out medical advice :mad: and I surly do not trust a 'trial' when dr's are refusing to take un-working units out of patients.......

Okay, I'll get off my band wagon before someone knocks me off blink

[Katherine]

I love my interstim and would not want to be with out it.
I am able to travel now with out alot of fear that I won't find a bath room in time I know now the average time I can hold it is 1 1/2 hour to 3 but I usually go with the average time when on a trip and always stop .
When home I usually go 3 hours or more it is God sent.
My husband loves it to he said that he like to travel with me now.

[littlebear]

Hi Shelley, I hope that the feedback you've gotten so far helps to answer your questions (aren't the boards great that way?). Let us know if you have any more! Best wishes, little bear

[Susan2]

For me the Insterim is the LAST option. I have had every kind of test there is to be had. I have tried every pill there is, and nothing has worked for me. My URO., told me and my husband last week, there is nothing else left for me to try.
I have suffered death 10 times over, and stay on the road to the bathroom 30-35 times a day. I am so tired from going to the bathroom all day, I don't have the energy to do nothing else. I feel I am doing the right thing, b/c no one deserves to live like this. I pray it works for me, otherwise I had rather be dead. It has taken us over a year to decide to go forth with the surgery
Please keep me in your prayers.
Thanks
Susan

[dyno]

Susan,
I will pray that this works out for you. This is a tough decision for anyone to make. I think I read your surgery will be soon. Sending you good vibes and prayers. grouphug

[Teri]

{{{{{susan**********
Sending prayers that this surgery is a sucess for you, you definately deserve the best it has to offer. Once you have used up all of your options, and your back is up against a wall, and you have weighed the good and the bad, it's time.
We will all be rooting for you.....

wishing you the very very best~

[Susan2]

HI All that wrote,
Teri I know you have also had a hard time. Thank all of you for praying for me. I just came off a flare for 3 weeks, and I just can't take much more.
Thank you
Susan

[ICNJess]

((((((((((Susan))))))))))))

I love you and am here for you. I just wanted to add that LOL.

Hugs and love,
Jess

[Mimi-in-Chicagoland]

Shelka,

With interstim you can't have an MRI. The wires on your spine could heat up and burn causing paralysis. I had tried everything else, so I had to have interstim. If I had been able to have an MRI, when I was in the ER last fall, they would have seen the mini-stroke immediately, would not have said it was an atypical migraine and sent me home--to have another stroke. Cat scans don't show stuff immediately, they can't see a clot until hours afterwards. I healed fine, but it was a risk. The implant helps me so much that it was worth having. It definitely is not a first line option if a few pills will help you or a DMSO. I did get tired of explaining to the doctors that it was worth it to me not to pee a million times a day to have the metal in there and they were NOT taking it out to do an MRI. Of course, not everyone has a stroke or two--but you get the point. MRI is also another great way to look for cancer. The implant site is also tender. I have to keep reminding my DH not to touch it. Its not painful, but I know its there. Its definitely worth it, but I would have loved to have been able to take a couple of pills and be ok.

[DebbieB]

Hi Susan;

I wish you all the best on your surgery and hope everything goes great for you!!
Please remember it is not a over night fix in no way it take time for adjustments and the Implant getting use of your body...
As I say to many of the people you got to have lots of patience...

I will have you in my thougths and prayers Susan..

Hugs, Debbie