Doctor suggested interstim

[blue]

My doctor suggested interstim. I don't think it's something that I want to do.

[ICNDonna]

Just remember that it's YOUR body and YOU are the one making the decisions. So --- if you decide against the interstim, it's okay to tell your doctor that you are not interested in discussing it.

Sending gentle hugs,
Donna

[blue]

Thank you, I felt like I was being hard headed! I didn't want to go with the interstim, or pain management.

I actually think the DMSO worked well for me. When my schedule changes, I want to try it again. It's just that it quit working about a week and a half after my last treatment.

[dyno]

I second what Donna said. Interstim is a big step and it works great for some people and others have problems with it, even after it has been removed. So anytime you have to consider something of this magnitude take your time and make sure it is the right thing for YOU.:kiss:

[Ginny]

Very good advise you are getting. It's your body and you are in charge.
Elmiron installations may be something you should think about since you did well with DMSO installations.

Ginny

[blue]

I can't explain why I have such a fear of having this done. I'm going to consider it a last resort! I appreciate all the advice.
..

[Teri]

I had the interstim and for 9 months is was heaven, then I went thru 2 years of hell until I finally had it removed.
If you are not at peace with it, DON'T do it:mad: It is a HUGE step and I think that dr's should be trying this on each other so they can see what some of us have to go thru.......dr's will tell you "but we can just remove it if it doesn't give us the results we want".......well, they can take a look at the scared up fanny I will live with for the rest of my life and while they are looking, they can kiss it too:toosh: I won't even go into the emotional toll it took on me.
Stick to your guns! IT's your body and they can't do anything without your signature. If the DMSO is working, I think you are one lucky girl and I'm be more than happy to do another round!

Wishing you the very very best:hi:

[blue]

I appreciate you telling your experience.

[LissaR]

The interstim I had put in a few years ago was awful. The doctor and nurse told me that people were finding out it was great for pain. I had so much pain and nerve damage from the interstim surgery to put it in. I cannot say I would not reccommend it for someone else because everyone is different, but do realize that it can cause horrendous problems.
If a doctor tells you the interstim helps with i.c. pain, run the other way! The doctors nurse told me that there was nothing to it, but there is a long recovery for some women.
I am not trying to bad-mouth interstim, remember though that even if the product is perfect, the doctor putting it in is not!

[Nicole in ATL]

My uro suggests interstim at every visit too and I always say no. I look at it as a last resort option too.

Nicole

[crystilclear]

I completely understand. It's hard because there aren't any guarentees that it will solve all your problems. I hope you find something that will work for you. It's crazy that some things are still a mystery. You'd think in this day and age we'd have more cures for things or atleast a clear cut treatment that works for everyone. It takes a long time to get things rolling sometimes. I hope you're feeling better soon and you find the answers and treatments that will benefit you the best. take care - Chris

[tigger_gal]

You all are right..... and your doctors could not be any further from the truth if they say its for pain.... they need slapped for that one....
I have the interstim, I love it... But what works for one may not for the other, as with any treatment, like dmso, nerve blocks ,bcg, elmiron, botox.... it all depends on your body.. I researched for a year before I did it.. but I have a top 10 ic specialist in the us. I have had no problems with my interstim in the 14 months I have had it..
I am gonig to post a post in this catagory about the interstim, you will find it very informative
:kiss:
Brat

[BLOORE74]

I have an interstim & all mine does is create more bills! I had it implanted in 9-02, it worked 4 a while, great too, but then in april the following year it broke. Up till then it helped my pain, now nothing. I have even had another lead placed in & still no pain relief. It's a big deal, though. You first have the device on a temp basis. That means u have a wire hanging out of your back. To see if you get any relief. If so, then they place it permanent, if not they take it out. I have had so many problems w/my interstim, but I will not take it out, after all I went through. I even fell w/the temp in & pulled the wire out of my back! That hurt so bad, there was another surgery! to replace it on a temp basis. It does help the urgency & frequency to some degree, but you have to have your interstim reprogrammed every time it starts not to work. Mine needs to be reprogrammed every 5 weeks! & they charge my ins &976.00! to reprogram it. Just weigh your options be4 you get your interstim. They have a video medtronic can send you, if you need help or have any interstim questions let me know. If you also want my interstim rep is the greatest. She will help you any way she can. She got my interstim approved after the run around w/the ins she will work to help you. :cat:

[littlebear]

Hi Blue, I agree with everyone. Don't even think about considering this for a second unless you're 1000% comfortable with the idea. I hope that following the lines of treatment that have been most helpful to you so far will bring lots of relief!

Hi Bloore74 I'm so sorry to hear about this. I hope that at least your out-of-pocket expenses aren't too high (not that it makes any difference as far as the insurance charges go) . Has the device helped you at all?

Best wishes to you both, little bear

[blue]

I think I'm going to ask about the nerve block.

[Rowena]

I don't know how to find you! help! I have the interstem and would love some converstion.

Love you all,
Rowena

[yvette]

hi Blue, :hi:
have interstim, and I love it .....

But I strongly rec. that you use it as a last resort. It IS surgery, it IS invasive -- you are so right...keep it as alast resort. There really are so many different things to try and try them in different combinations with one another

Good luck finding something that works for you
y. :)

PS: I had to exhaust EVERY form of treatment in order to get Interstim and to get BCBS to pay for it. Treatments included: acupunture, acupressure, herbal therapy, PFT, and of course all the usual traditional approaches all of which my uro recommnded and had someone for me to go to (she didn't want me going to wackos out to take my money)

[tigger_gal]

Hi Blue,
I to agree. Like I had discussed with you b4 thru pm's I love mine and think its the best thing since sliced bread, but, It is a surgery and you want to make it your last option.. If you need any thing let me know :)
:kiss:
Brat

[littlebear]

Hi Blue,

I thought I'd wish you best of luck with looking into the nerve block (I don't know anything about it, but it sounds like you've got a good idea about what's best for you).

Best wishes, little bear

[kadi]

Hi Blue,
A few resources for you...

"There are some patients whose symptoms rapidly recur with the cessation of DMSO therapy. In those instances, extra treatments are given."
(Moldwin-the Interstitial Cystitis Survival Guide p118) This book has been really helpful to me. I can't even count how many times I've looked things up in it!!! This book is for sale in the ICN store.

"DMSO research studies report a 35-40% relapse rate after a 4-8 week course of treatment. However, 50-60% of those patients responded favorably to additional DMSO treatments (1). For those who relapse, DMSO may be administered in one to two month intervals (maintenance therapy), depending upon their symptoms. If patients do not respond to DMSO initially, it may be combined with hydrocortisone, heparin and sodium bicarbonate. Please check the on-line ICN research library for the latest research studies on DMSO." This quote is from:

http://www.ic-network.com/handbook/instill.html#DMSO

Just wanted you to know you're definitely not alone in having symptoms come back after DMSO, so not to jump to conclusions!

Wishing you the best in whatever you decide:)
Kadi