Is Interstim My Salvation?????

[shinana]

:angel: After months and months of Dr after Dr......and numerous treatments, which have done very little to help my pain....I was referred, yet to another Urologist at Beaumont Hospital here in Michigan. After a health history and exam he suggested that Interstim may be an option I should consider.
I am scheduled for the first step Jan 20th, I am hoping for the best, and wondered how many of you out there have had success with Interstim.
I could not tolerate the DMSOs treatment and had to stop after four treatments......I have seen little if any results from Elmiron after almost 5 months and now feel as if I am grasping for suggestions.

I think if given the chance and the time is right, any of us would do what ever to get some quality of life back. At this point I feel I have given Meds, treatments, diet and what ever else my Drs have suggested a fair shot.
I am looking forward to a possible solution and answer to my prayers.
I am also realistic knowing that what works for many may not be the answer for me, however I am welling to give Interstim a try......at this point what do I have to lose.

So, if any of you have a point of view on Interstim, or actually have it and have received relief, please speak up.

[ICNJess]

Hi Diana,

I have had the Interstim since 2003, and I love mine. It helped my frequency, urgency, and pain from bladder spasms--but I am still on pain medication because it has NOT helped my regular old IC pain.

I encourage you to do a lot of research on the topic, and talk to patients who have had the implant and had success, as well as failure. Ask LOTS of questions, and please realize that this implant will most likely not help your pain.

I am sorry if I come across as a know-it-all or something like that, it's just that I have seen people go into the Interstim full force thinking that they will get some pain relief, only to have it taken out months later.

I, too, was unable to tolerate DMSO, and after 7 months of no help from Elmiron, I went into the Interstim head on, and went from 40 times a day urinating, down to 4-10, as well as getting up only 3 times a night (sometimes more depending on a flare) as opposed to the 10 times I would get up.

Now if I can just conquer this pain problem!!!

If you have any questions, just holler, we'll all do our best to answer them. :)

Hugs,
Jess

[jensue973]

Diana,
I to will undergo my test stimulation for the Interstim therapy on Jan18th, so I know how u feel wondering if this will finally be the solution..I have tried diets, medications, bladder installations of heparin,etc.. and nothing so far has worked...Since we'll be going thru this around the same time feel free to email me if u need a pick me up...Hoping all goes good

Jennifer

[ICNDonna]

Just a thought, but if you've only been on Elmiron for five months, you should know that Elmiron can take up to six months or longer to be effective.

Warm hugs,
Donna

[shinana]

Jess and Jennifer, thank you both for responding.
Jess I was so happy to read that you have interstim and you love it.......than to read it has not helped with your IC pain took my breath away. I was so hoping that this is my answer to getting my life back.
So, your saying it helped with the frequent urination and related issues of that matter but the IC pain is really no better.
Oh, Jess...I think I need to speak with the surgeon before going forward. I went to see him with the hopes of pain relief and he understands that is my issue and I know he cannot and will not give me false hopes...but he has seen good results.
Jennifer, I hope you read the reply from Jess. What are your feeling about the fact that it has not reliefed her IC pain. I assume your seeking Interstim for IC pain.
Please respond

[shinana]

Donna, thank you for responding as well. Yes, I am aware of the time needed for Elmiron to work properly and have been taking it TID. I am getting very discouraged.
I have not been able to work since August, I am a surgical nurse at the University of Michigan, we have a great Union and I have been able to be off with pay, however at the end of Feb I will no longer receive pay and my job will be up for posting. I am running out of time and really, I guess I am looking for a magic bullet.
I will continue with my medication protocal and hope for the best.
I am scheduled for the Interstim Jan 20th, but, I think I may need to speak again with the surgeon.

[jensue973]

Diana,

I have decided to undergo the test stimulation for the Interstim because I have very intense pain, but also for the fact I have to go to the bathroom every hour about....Any relief the Interstim can give me I am willing to take that chance to give it a try with the test phase because I am to the point I am living in my bathroom and it affects my life too much...I am really praying that it helps with the pain, but I know from stories in most cases that doens't seem to be...I am a single mother of 2 and my main issue I am worried is wondering how will I feel after I have this procedure..I have my kids to take care of so only hoping I'll recover quickly...I hope that things go good for u...

Jennifer

[shinana]

Jess, I read your post again, and to be honest missed, and don't ask how since it was in bold print, that it help your bladder spasms. My spasms are so severe that the vaginal canal and surrounding area is rock hard. My poor bladder is like a tin bucket, you could bouch a dime of it, because the spasms have made it very rigid. So, maybe it will help in that regards. Also I vaginal burning all the time that drives me nuts.

[shinana]

Jennifer, I was being treated with DMSO at the U and a nurse came up to me in the hall after my treatment. She told me about Interstim, and gave me the Drs name.
I agree if it helps with the frequent urination, I go about every 20 mins, or during Flare every 5-10 mins, it will be well worth it.
Post-op pain I would think would be minimal during the test phase. Is there someone that can lend a hand with you two children, so your able to rest.
Maybe Jess can relate to issues with the pain and post-op since she has had the Interstim.
I will be praying for the both of us as we move forward with our decision to have Interstim.

[ICNJess]

Diana,

I had some awful bladder spasms! They would literally make me scream while I was trying to pee in the morning. I tried meds like valium and got no relief. With the Interstim, my PFD has straightened itself out for the most part.

I was reading what you wrote about the vaginal burning...have you been tested for Vulvodynia? I have Vulvar Vestibulitis, a form of it, and since I began treatment and got pointers for it, my vaginal burning and pain has lessened.

By far, my biggest IC complaint was pain. But then frequency was next. And with the frequency, I would get that annoying constant irritation feeling--like I always have to pee, like my bladder was always inflammed. Since the stim, I no longer have that.

But if you are looking for a pain fix, please re-consider. If I can help at all, let me know, I'd love to!

Ohhh and also, about the recovery time...well I had my trial in for 3 weeks, and I was very gentle as not to move the wires or anything. Then for the implant itself, I over did it and ended up bleeding through my incisions. Take it very easy for a week or so after the surgery, maybe longer, depending on how you do with the surgery and how you feel.

Hugs,
Jess

[shinana]

Thanks again for listening. I guess I was just moving forward with blinders on, knowing the positive and negative, but wanting so much for this to be my Salvation.

[ICNJess]

((((Diana))))

I completely understand. Talk to your surgeon, and if you decide to go through with it, we'll be here every step of the way. Hang in there, let me know what you decide, I know how difficult this decision is. :grouphug: :kissing:

Hugs,
Jess

[shinana]

Jess, the bladder feeling like it is always inflamed and the vag buring also takes my breath away. Plus I have pain on either side of the bladder, best way to describe is like a side ache. Vulvodynia, has noted been mentioned, I was told I have urethitis.
Dr told me the side pain sensation is due to the rock hard tissue caused by the spasms.
I will move forward with the Interstim and hope it can help me with the spasms and the potty runs.

[shinana]

Thanks Jess for your support and I will let you know what results I get.

[dancemomof2]

Diana
I am aweek into the trial and love it, I agree with Donna to also give Elmiron the 6 months. i have been on it for 3 years with no luck. I was so against the Interstim for the longest time, and now can;'t believe I didn't do it sooner.I have a friend on the boards who had hers done at the same hospital you mentioned. I have asked her to reply to this and talk to you about her experience there.

[tigger_gal]

hi ya,
I am in michigan too.. I too had mine done at Beautmont in R. O. I had no problems with the trial or with the implant.. I would do it all again even it it was just for the urgency... My email is brat_in_mich@hotmail.com.. If you have any questions email me.. we may have the same dr...
Brat

[shinana]

Brat, I am so glad to hear from you. I was a bit discouraged last night, but thought if it can help with the spasms it is well worth it. So.....your very happy with the results.
I am going forward with the trial and after reading realize it is not the answer for all the IC issures, however the relief of one is well worth it.
I will stay in touch with you as I proceed threw the process and again thank you.

[dancemomof2]

Diana,
i am glad to hear you are trying this, I went into this with the attitude that it could only be like another prescription that wouldn't work, and 5 days into it and I see the results I can't believe I waited. i also had the thought of just relief from many of the symptons would be a life saver. My Uro did my surgery and told me he so wished that this would be a first line treatment instead of a last resort treatmen. i so belive him now. 3 years and thousands of dollars in medication that didn't work, and this simple procedure has brought some relief to my life already. keep us posted.
i am also glad to hear you heard from Brat, she has been my soul support through this whole thing.

[IWin]

Diana,

I know nothing of the Interstim. But I did want to make a comment on the Elmiron. The first time I was on it, it took about 9 months to notice a difference. I don't have actual pain. I have pressure like a full bladder (sometimes very intense), was going to the bathroom 17-19 times a day and often had terrible urgency. The improvement was so gradual. I just realized that I rarely got the sudden urges, and that the overall sense of urgency was less. Then I realized the # of bathroom trips was down to 11 -13, and some days less. I was able to eat some "bad" foods. But the point I'm trying to make is it did take time and it was GRADUAL. I almost gave up at 6 months because it seemed not to be helping.

I hope you have much success with whatever you choose. Good luck.

[BLOORE74]

I have interstim 2, & it has helped w/my frequency & urgency 100%, but not the pain. I have had it for a few years now & I still am on pain meds daily, & on medical leave from work. It helps the freq & uregency great. The only thing bad about the interstim is having to have it reprogramed. Mine needs 2 be reprogrammed every 5 weeks or so, Reprograming is when the unit is not working for you. U will know when you need 2 be reprogramed cuz your ureg & freq will come back know matter how high or low you turn the stimulation. So it basically is as though the machine is off. When you feel like its not working call your dr right away, get reprogramed right away. Good luck w/ your interstim! :)

[lilbluedevil82]

Hello Diana,
I also live in Michigan! Which doctor are you going to see? My doctor....Dr Gudziak is wonderful if you ever need a referal!

[ICNJess]

I think the InterStim is a great solution--but I am not sure if it should be considered a first line of therapy because it's so invasive. I wish there was a marker that would tell us what meds will work, and what will not--I'm sure it could've saved us all some trouble. :(

[codyryonwoodward]

I wish you the best in your interstim trial. I agree with Jess I dont think the interstim should be consider for first line therapy option. I have had my interstim since 2001. People need to consider all aspect of this unit before doing so. Not only talk to someone who has had it less than a year and has worked great. But also talk to someone who has had it longer and find out if it still is the greatest thing ever made for IC. You must also consider the long term outreach of using this unit. Will it still work for me 3 yrs from now and if not what and how will I deal with this. I want people to look at all angles before consider this. It is very invasive and I (speaking personally just for myself) cant look at it like a prescription and if it doesnt work I cant just get it removed for many reasons.

I wish you the best of luck in what any decision you make.

[dancemomof2]

Yes Jess it is invasive but the benefits so out way the prescription after prescription of meds that don't work. I am so looking forward to putting up some of these worthless meds that I have bought with no luck. I agree with my Uro that if this was a first line treatment maybe people wouldn;t be so sceptical of it. I can say as of now it has made a difference in my life already just by not talking to the tiddy bowl man more then my family.

[aquafina]

Hi- I have had an interstim implant for 1 year. The day I had it implanted I could tell a difference. I was peeing up to 60 times a day and 30 or so on a good day. I also have pelvic floor disfunction and chronic myofascial pain and vulvadynia. I wonder if you have checked to see if you have any other things that can contribute to ic problems. If I don't keep the other things under control then my IC can get really bad. But no doubt without the interstim my life would be so miserable. right now I at least have some GOOD days that I can look forward to. I am so happy I had it done.


brooke

[radstudent]

I have had interstim since July 2003. I have had great results. I have however had to have it replaced 2 times because the lead moved. I know I did nothing to cause the lead to move because I was super careful. Interstim has really helped my IC. I was going to the bathroom up to 60 times a day and 10 times a night. I am now down to 15 times a day and 2 times a night. The one thing it did not help, however, is the pain. I still have severe pain that is so bad that I have been hospitalized from it.

I agree with the others that you should give Elmiron time to work. It does take time for it to build up in your system. My Elmiron rep told me that it could take up to a year to really make a difference.

Also if pain is your biggest issue, please remember interstim is not for pain. I am not saying this will work for you but it did help me a few years. When my pain started to get unbearable, I would get a hydrodistention. Of course that made the pain worse for a couple of days, but then I would be ok for several months afterward. It might be worth trying for you.

If you do decide to go ahead with interstim, I wish you the best of luck. Remember we are all here for you.

[icnmgrjill]

I'm so glad that Louise posted because she makes such a good point. Interstim did help her... but it also required several surgeries. That's the part that concerns me most. We really don't have any data on what the long term revision or complication rate is. Thus, using the term "salvation" scares me... I do hope that it helps but it's also very important to have your eyes wide open about the risks. Please see the new post I placed in this forum that gives our outline of this procedure.

[radstudent]

I also want to make a note that I had the interstim done because it was my last resort and because I had to do something or I was going to lose my job. Well that was in July 2003. After having the first interstim implanted I was able to go back to work for about 2 months. Then I had to have the interstim replaced because the lead moved. After that I got to go back to work for 3 weeks. Even before I went back to work this second time the lead had already moved. It had moved less than 6 weeks after the surgery and I am not talking about just a small movement. The lead had moved completely out of my sacrum and was actually 2millimeters away from coming through my skin, but the doctor refused to fix it so I went back to work. Three weeks into working, I just was unable to do it and ended up in the emergency room in the middle of my shift. Thankfully my urologist (who didn't do the first 2 surgeries) decided to redo the interstim for me. From this surgery I did end up with 2 blood clots in my lung and 2 blood clots in my leg and that has caused another set of problems. That was in May 2004. It is now January 2005 and I am still not working even though I did this to keep my job. Please know that I am not trying to scare you. I just want you to know what could happen. I am here to tell you that if I had to do it again, I would probably still do the interstim. Please just do lots of research about the good and the bad and ask your doctor lots of questions. This site has a list of questions that are great to ask your doctor. Good luck.

[dyno]

I agree that it can be a very effective treatment for some and has been. I have a friend on here who is one of the ones who the Interstim has been a nightmare for her. It caused her a lot more pain afterwards and over time she had hers removed.

You have to do your homework on this one. You have to know that you can handle more problems if you are one of the ones who the Interstim does not work for and indeed causes you further complications. Can you and your family, remember it impacts them also, deal with that. Those are the hard choices you have to look at when making this decision.

I have had IC diagnosed for 30 years. I had installations done when it was diagnosed and because of how that affected me emotionally at 16, I didn't get treatment for years. Frequency of every 15-20 minutes was my life. Traveling was horrible, and urgency and pain I had during flares, unreal. I didn't know about the diet, was on no medication.

In 2002, long story short, I found a urolgist who knew about IC and worked with me. We have tried several different oral medications and I am on the IC diet now. It took at least a year to a year and a half of finding just the right combination of meds to help me. Do I still have freq? Yup, sometimes I will be in the bathroom every 10 minutes but they are better than I had been doing. My Dr. did mention Interstim for me down the road if we couldn't find anything else to help. When that was mentioned I really dug into the Interstim research. For me, I could not take the chance of causing myself more potential problems that could be there for the rest of my life.

This is a decision only you can make for yourself. You know if you have tried everything and are really giving the IC diet a fair shot. Every persons situation is different and I wish all of you the very best in whatever you decide to do. Interstim is the right choice for some and is not a good choice for others. One of the biggest things to remember though is that Interstim is not for pain.

[codyryonwoodward]

I agree with Jill....I was one who when I first got mine I thought "My salvation wish I had done sooner this was great..." But in the long term I consider over 3 yrs as kinda of long term mine has not been beneifical to me anymore. In the begin. it reduced my urgency and freq ALOT but after about a year things have totally changed for me.....And if you lose your insurance in the long run trying to find someone to fix it and willing to work with you HAH....Think the Dr who did it will help you HAH....I agree you must look at the benefits now and the benefits a couple of years from now. I dont think this should be consider first line therapy....

[shinana]

You have all given me alot to ponder, pros and cons, of Interstim. At this point I am going forward and pray for the best.
As my husband said to me a few nights ago, " Sometimes you need to take a risk and pray for a good outcome".
I don't want to sound silly but: I am grasping at straws, looking for the Golden Goose, searching for my ace in the hole....
I hope, however it gives me some relief from the bladder spasms and a decrease in the potty runs.
I have until the end of Feb and my wonderful job is up for grabs, and I really don't want to lose it.
I will keep you all posted.
God Bless

[yvette]

If you are forging ahead with the surgery....My best recommendation: Find the best surgeon you can. Just b/c he/she is the closest distance isn't the smartest choice. I looked into surgeons in Michigan, Ohio, Arizona and finally (and luckily) found my Surgeon in Boston, Mass. (I ended up with the 2 best surgeons who collaborated together).

Anyone who is going to mess with my nerves, spine and backside better know what they're doing....cos I'm the one who has to live with it. :)

[shinana]

Yvette, I agree, and Dr Diokno at Beaumont Hospital comes highly recommended for both his noted IC research and his Interstim results.
So.....how has Interstim worked for you and your symptoms?

[yvette]

I've heard wonderful things about both... and he was one surgeon I considered. I've never been to Beaumont Hosp...I hear it's a very good facility.

Interstim was indeed the last and final resort for me. But I had to fully exhaust all other treatments so that insurance would cover it and of course, to make sure there really was nothing else.

It has taken a few years for the whole thing to really work properly and optimally...even within the first year it took some tweaking and having detailed, open discussion with my rep to get the settings right. So I guess I'm saying: Don't feel panicked or upset if the first month isn't all roses and working the way you'd like...it may take some fine tuning. :D Just hang in there -- I remember getting very frustrated with the first year of Interstim....it takes patience sometimes.

I'm glad I did it, I'd do it again no question about it. Urgency and Frequency has been helped tremendously. Medtronic drilled it into me, from the beginning, that it wasn't for pain. But I'm not a pain patient, so that was a non-issue.

[Amanda]

I see Kenneth Peters who is also at William Beaumont Hospital. He is an excellent surgeon and a really nice man.

Amanda