One year since Interstim

[rjyoon]

I can’t get on the boards much these days, but thought others might be interested in what I think of Interstim at one year.

I got the Interstim to improve my sleep, as it was so profoundly disrupted. While it was a miracle for three and a half months, it didn’t last. I have not been able to get the doctor interested in reprogramming me, and he just blames my problems on changes in my life, like being laid off. As I’ve been in my new job for 5 months, I don’t buy this. When I lost my insurance (when I was laid off), other uros refused to see me once they learned I had the Interstim, and they wouldn’t tell me why. I wish I’d known that I’d be stuck with this uro forever, as I might have made a different decision.

My low back ache (from the implant) when I lie down has improved from what it was immediately post-op. My pocket still aches, which can interfere with my exercising. Through physical therapy, I’ve learned that by stretching out the muscles near the pocket twice a day, it doesn’t ache as bad and then I can exercise more comfortably. The skin over the pocket has gone from numb to very tender, so I’m pretty leery of bumping it. While I wanted to massage out the scar tissue from my many incisions (I make a lot of scar tissue & often have problems as a result), I’ve found that I’m just too creeped out about touching the pocket & feeling the Interstim. I do work on massaging the other incisions.

I’ve learned that other health problems were contributing to my sleep disruption. I’m now receiving treatment for allergies, and that’s helping somewhat. I’m trying over-the-counter treatments for my night sweats which is working, and hope to convince a doctor that I’m in perimenopause soon, & get a more effective treatment. I’ve been tested for perimenopause & came back “normal”, but that doesn’t match my symptoms. I wish I’d considered that other health problems were also impacting my sleep, but I was totally focused on IC.

I’m probably sleeping a bit better than I did before Interstim, but it’s not a significant difference for all the pain & money. If the uro can find another program that puts it back like the best three and a half months (where I was sleeping 5 – 6 hours straight & only getting up once a night) then it will have been worth it.

[codyryonwoodward]

Hi I am sorry that your interstim has worked out this way. I have had mine since 2001. Whenever there is a person talking about getting the interstim I try to have them think about the long run. My interstim has not worked right for the last 2 yrs. Mine worked good for maybe 6 months and after that YUCK!!!! Mine is now turned off. Like you my insurance ran out....but for me even the urologist who put mine in would have nothing to do with me. I have had to wait until my SS medicare came through before I can do anything if medicare will even pay for it. I spent almost a whole year trying to find someone anyone who would help me. NO ONE WOULD...My lead has shifted this is why the unit is not working right. I have had adjustment after adjustment to no avial. I am thinking of just having the thing removed. I dont want to be in the same sit. a year from now agian. Although my unit does not help with my symptoms it also shocked me while needing to have a bowel movement. To the point where I could not move my leg and I would have to turn it off also I had major left toe curling all toes except pinky would curl under. I am sorry for you I hope you can find answers to your unit.

[ICLori]

I"m so sorry the Interstim isn't working right for you guys anymore. It seems like this happens to almost all IC patients who try this device.

For my pre-op appointment, I spoke with a very intelligent, compassionate resident. He asked me questions about IC, and listened patiently when I rambled in various directions. He expressed interest when I mentioned the message boards there, I had a feeling he might check them out. I was so happy to find a doctor who is willing to learn more about IC and listen to patients. I hope that this is a good sign - that maybe the new doctors will be better than the old doctors at treating us IC patients and taking our suffering seriously and not telling us it's all in our heads.

He asked me at one point my opinions on the Interstim for IC patients. I told him that the negative stories are probably overrepresented on these message boards, because when people are happy they go off and live their lives and don't post as much. Even so, I told him, there was a pattern of the Interstim working well at first for some patients, then not working anymore, with tons of reprogramming, revisions, etc. not helping and sometimes causing nerve damage that makes things much worse for patients. I told him I was seeing the same stories over and over again and it made me very cynical about the use of Interstim for IC patients.

It was so great to get a chance to talk to a doctor just beginning his career, and to have him actually listen to me and care about what I was saying. I hope that soon the medical profession will be filled with doctors like him, and not with the kind of doctors who used to tell us that this disease was all in our heads.

Blessings, Lori

[DebbieB]

Hi rjyoon,
I also am sorry to hear that you are not having any luck with your InterStim...
I feel for all the ones that are having problems ....

I guess you could say that I am one of the "old one" off the board as I have had my InterStim for almost six year on April 20, 1999...
I was the moderator for all these boards for over four years and now I am administrator of the Canada IC board as I am from Canada..
I have had only four adjustment in those years...
Also on my second year of having the InterStim my lead wire broke in half but later found out it a faulty lead wire...that is the only problem I had with it..

I guess the other ones with wonderful success do not posted message as I think it hard for them to see what has happen with others...and also get negative feed back from many by PM as I have..
I am still here as I think it is very important for others to hear the positive side and also the negative stories of the InterStim...

I really think it has a lot to do with the doctor doing this procedure and your body accepting the device....
Also we are so different in any kind of procedure...

I have a very wonderful doctor and he is has so much knowledge in the InterStim field I am very lucky to have him...
He has had over five people off the Canada IC message board go and have very good success with the InterStim and I work very close with his office as I have lots of people call me to talk to me about the InterStim ....so it is very important to me this subject...
I also do not tell people to do this procedure as it is a very personal decision...and only that person can decide if they want to do this or not I am just there for support...

I just wish I had an answer to tell others why their InterStim don't work I just don't know.....


Debbie

[codyryonwoodward]

Debbie I agree with you. I believe that everyone should have access to the postive stories and the negative. And I am very happy to find someone that has had a postive experience after many years. I am not knocking anyone but my message is to look at the whole picture and the long run with this procedure.....This is something that is not like the medicine or the instillations that can be stopped when you want....It is a pain if it fails. I do not believe anyone has the right to send ugly PMs if you have had sucess with it. We should not be ugly to the ones who it has helped we should be happy and proud that another one of us has found happiness and sucess with it. This process is just as it is with the other.....Sometimes it will work and sometimes it wont....Not every procedure or medicine is going to be the same for everyone else. The doctor, his experience and his willingness to treat the patient after the procedure is of the up most importance. It is hard to find another Dr to treat you afterwards if the first one does not want to. And this procedure is expensive to replace or repair if you have lost your medical insurance. On the other hand I AM SO HAPPY FOR YOU AND I PRAY THAT YOU WILL HAVE CONTINUED SUCESS WITH THE UNIT ;)

[rjyoon]

Now my uro has prescribed p.t. for my pelvic floor dysfunction (first time he's mentioned it to me) & offerred instillations (shouldn't we have tried that before Interstim?). Oh well, the p.t. is good & she loosened lots of very tight muscles. Maybe it will pay off.

[dyno]

I hope the treatments help rjyoon. Yeah, why didn't he try these things before....nothing you can do about it now, but your story will help others. Thanks for sharing.

[rachelm]

Rjyoon,
I'm so sorry to hear that you're having such a difficult time. I went through my interstim just after you did last year but I haven't been on the boards much. I agree with Jolene I'm surprised that noone suggested instilations as a first option. By the time I decided to get my interstim I had taken just about every combination of drugs and done daily instilations all which helped at times but nothing could stop the urgency and retention. I'm having my first real flare since the implant almost a year ago so I'm taking pain meds. again and just got a hepparin/marcaine instil as well as an adjustment. It took several days before my retention seemed somewhat under control again. I know that this disease is so frustrating and I feel for you. I wish you the best and wanted to say hello.

You are in my prayers,
Rachel

[icnmgrjill]

RJ.... please contact Medtronic directly to arrange for someone to have your device readjusted or reviewed since your doctor will not go there. Readjustments are a frequent occurence and they need to know if there is a doctor out here not providing following up care.

Also... I have to disagree with the statement that most success stories leave. Many don't... but choose to stay out of these specific discussions because its awkward for them. The same is true for patients who have had failures. They don't post because it upsets them to see this happening to other people! Honestly, I think we have a fairly acccurate representation of the "common" experiences.. both good and bad.

Jill

[dancemomof2]

I agree to contact Medtronic for some assistance. I myself am having so much luck with it. It is now 2 months and no problems, not even a really achy bumm unles I myself over do it and try to be super woman. ( Like today when i ripped up all my carpet again LOL) take care and once again please contact Medtronics.

[tigger_gal]

wow I would contact medtronics to.. I am curious as to why your doctor suggested intestim to help you sleep.. sorry I am asking such a sill question.. especially after he said he would try instills as a second therapy.. I agree, it should have been first.....
I so far have not had any problems with my interstim, nor have I had to be programed in 11 months, my last re-program was in April 2004... soem of us have outstanding luck with there interstim and some had nothing but bad luck.. My theroy is that if your uro isn't well trained in the procdure, you will get poor results..... You dr should not deny you reprogramming that is outragous...
sendin you lots of hugs
Brat

[mayray518]

So sorry for what you are going through Dusty. I know what it is like to hope and pray something new will work and then that fails. I would have tried the interstim myself had elavil not worked for me. They refuse to remove it? That is awful. Anyway, I was recently in a study at the University of Baltimore and who of the doctors there who is an expert in IC (Dr. Chai) told me that they are coming out with new things all the time so dont get discouraged.

[tigger_gal]

Debbie, I could not agree with you more..
Rjyoon, I thought I posted and also asked why you were given the interstim to help you sleep?? I sure wish you were having better results.. also a good uro won't ditch his patients.. I know if I lost insurance today Dr. Peters would never turn me away..
If your doctor is a good uro and knows the in and outs of the interstim procdure, he will let you know these resukts are a possibility. .. as sad as it may be that some people "may" have nerve injury, but, its clearly in black and white in the Medtronics web site under
InterStim Therapy Disclosure Information... (see discloser below) .... If you are considering the interstim you must research your options.. I can honestly tell you I researched over a year and asked lots of questions and have talked to many of the girls on here that has had failures. There stories were very sad and when it came right down to the nitty gritty, it ended up being doctor error, also keep in mind alot of these failures are from the early 90's when the interstim came out. Most of these doctors that did these did not research enough to realize one boo boo by hitting a nerve can be a costly mistake to a patient...
I know there are failures now, there are many who won't post :hmm: because of personal experience of bad emails and pm's. However, the ones who have had success also has gotten the same effect... Its a touchy subject, and we all have our opinions about the interstim, and, we should be heard..
I wish I was an interstim rep.. I would make sure you are aware thet there are posible risks... When you decide to have the interstim I haope you have researched, and have went to the Medtronics site and get there free cd/vch and lit..
best wishes to all of you and may you all be well informed..
This is directly off the interstim site...
Precautions/Adverse Events:
Warning: This therapy is not intended for patients with mechanical obstruction such as benign prostatic hypertrophy, cancer, or urethral stricture.


Safety and effectiveness have not been established for: bilateral stimulation, patients with neurological disease origins such as multiple sclerosis, pregnancy and delivery, or for pediatric use under the age of 16. System may be affected by or adversely affect cardiac pacemakers or therapies, cardioverter defibrillators, electrocautery, external defibrillators, ultrasonic equipment, radiation therapy, magnetic resonance imaging (MRI), theft detectors and screening devices. Adverse events related to the therapy, device, or procedure can include: pain at the implant sites, lead migration, infection or skin irritation, technical or device problems, transient electric shock, adverse change in bowel or voiding function, numbness, nerve injury, seroma at the neurostimulator site, change in menstrual cycle, and undesirable stimulation or sensations.

[dancemomof2]

I agree, the fine print in the consents forms I sighned bluntly stated the significant possiblilty of nerve damage. I went into knowing there were several risk involved, and I was explained every possiblilty by my DR. I was never told it would help me sleep, I have slept better simply because I don't go pee every 15 minutes. I so wish everyone could have the outstanding results I have had so far.

[Portia17]

Dusty

I read your posts prior to my visit with my urologist last Thursday and all of a sudden he brought up interstim and wanted me to go the the surgeon and made an appointment for me without my authorization.

I told him to go to hell and told him about what happened to you and other people (no names were mentioned) He said oh stop reading all those boards as people make you crazy. I said no you are not going to scerw me up even more with your interstim just so you and the surgeon can get kickbacks and I told him go to hell

I have a new uro in May

[tigger_gal]

I am sorry that you feel as tho you are to blame? ((((HUGS)))
The problem is 9 out of 10 times is doctor error. How can it
possibly be your or any patients fault if the device was put
in wrong and failed.
Nerve damage is caused when the dr hits the nerve, and, fails
to put it in the correct position. Too many dr's jump to the
conclusion that this is a simple procdure. It happens to be
a very delicate surgery. The dr has to know about nerves to
know how to place of leads.
I think being diagnoised with IC and scheduled for the interstim
in a matter of days was pretty scary. I sure wish that you were
given other alternitives before a surgery. This is what makes me
mad about these doctors, there more quick to make a buck, rather
then try other things for a patient, and not give them the full
ins and outs of "what could" happen.. I think he is unfit to be
a doctor, right along with my "old" uro Dr. K. No meds live with
it, is what I was told.. gggggrrrrrr. I wish you would have done
some research online. It's sad to say we trust in doctors so much,
and end up with a "good" thing gone bad, because a doctor failed
to do the procdure correctly.. if the trail failed and you had
no relief, he had no business putting in the device.. I am
wondering why it was even put in in the first place. (gotta find
all your post on this, hard to be helpful, when I don't know
the full story)

""he didn't want to take it out because he is good at what he
does..
and to go into an area an operate that is out of his field he
just wont' do it..he won't risk it..and I take my hat off to
him and admire him greatly for that..that is a good doctor
and surgeon that says""
Amen to that.. and all doctors SHOULD follow this rule. To many
have put in interstims, not knowing what they were doing..
IF you trans falls out are you going to call the raidator guy?
I think not, just as you wouldn't call the gas co if you lost
your electric.. These doctors shouldn't put in interstims
after looking at pictures..

""I am concerned and alway will be..it was the surgeons,
and the company..not me.""
NO you are not at fault the surgeon is... the company made it
but, he put it in, he failed.

""it is not a surgery for a uro..that is not his field..the
spinal area and sacral nerves and so on..so if anyone is going
to do them..I think neurologist should as that is there area
of medicne.""
and I am adding to this... If your uro is trained for this,
and he is knowledgeable of the ins and outs and of IC, and
knows the nervous system then he is ok.. but never under
any circumstances do anything if you second guess yourself
or your dr..
Ask lots of questions... and look into how many he had done
with success and failures..
My uro, is one of the top 10 in the US in the IC field.
Hugs
Brat

[Portia17]

It is the urologist who recommended it to the surgeon and the surgeon who used the company who makes the miserable thing.

NO PATIENT IS RESPONSBILE. THAT IS WHY WE PAY DOCTORS

[tigger_gal]

Wow this topic is like getting struck with lightening... feel like I really just got burned.. :hmm:
anywho, I have no hard feelings because I said nothing wrong.. I never stated it was a patients fault. I beleive that pain with interstims are doctor error.. Like Dusty said "... I agreed.. You have to know what your doing to be able to do it..
I don't feel as tho medtronics should be held accountable for doctor error..

If you go and read the pages in the Interstim site, these boards are listed as Resources.
Other Resources

The following links offer connections to additional resources available to you on the World Wide Web.

ATTENTION: The sites listed below are not managed or monitored by Medtronic and are provided only for the convenience of our visitors. Medtronic makes no representation as to the information presented on any linked site or any linked site's compliance with applicable laws and regulations.

http://www.medtronic.com/neuro/interstim/3resources.html

[patricia1]

Medtronic can not be blamed for dr errors. And that in its self is a huge problem, drs who push this on their patients and drs who are not experience with the device. I personnally felt pushed, but in the end it was my decision and I made the decision to have it placed. At the time I did not consider what would happen if I lose my insurance will my dr still treat me...My answer to that now is NO...Also my problems are not dr realated mine comes from the lead wire movement, which could happen at any time. Mine came from a car wreck. Even 1/4 of inch movement could screw the entire unit up. Because of no insurance and no dr within driving distance it took 8 months to find a dr who would help me. I am now looking at a revision surgery. I also lost around 35 pounds since having the interstim implanted and now mine sticks really far out of my back it is so ugly and I can move it.

This is such a hot topic and people are stong about the views on the interstim. People that have had success with it say its the best thing wish they had done it sooner and so forth. Then there are a few of us that have had problems with the interstim. My view is I would never tell someone yes you should have it done, or not you should not. I want everyone to look at every aspect of the interstim. Look at the now and the future. Look at your dr will he still be there if there is a problem now and if there is one the future. Drs should not push this for pain either, which some have done, because pain benefits from the interstim is an added bonus. My pain personnally has got worse over the years, and the dumb uro who put it in would not prescribe anymore pain meds b/c I had the interstim. If every person looks at all angles then they can say for sure I made a wise decision for me and I am informed in all the good and bad things that could happen.

Because really its a very personnal and indepentant decision, we can only tell what has happened to us. Good or bad. No person should be offened if someone else opions differs from ours.

[dancemomof2]

You did not HAVE to have the Interstim, like any prescription you a walk out o f the office with, you have a choice as to fill it or not. You had a choice not to show up for the procedure. I did not have to have mine done, i chose to after months and months of research and decision making. I really think had you not been rushed into this and had time to check things out a little more you may have had a better outlook on the Interstim. I feel so bad reading how your story turned out and how successful mine is. I am glad I researched my choice as I would never have been able to make this decision in a few days.

[patricia1]

One thing to remember when Dusty had hers done, and mine also, there was not a wealth of information out there about the Interstim and the pros and cons with it. I did plenty of research, in fact several months worth, before dec. to get mine. There is ALOT more on the interstim today and months ago than 4 or 5 yrs ago. I was not rushed, but I still was not fully informed, by neither the dr nor medtronics. Maybe when Dusty went she did not know alot about her IC or the Interstim, and maybe during that time she did not have access to the internet to search. YES it is a choice, and yes she could have walked out of the procedure, but I am sure she was wanting something to help with her symptoms. I personnally feel, just from reading her threads, that she was pushed towards the Interstim, I feel she was made to feel she had no other choice but to get it. And I feel for her with the problems she will have to deal with for the rest of her life. Remember 2004 or 2005 interstim and interstim procedures are different than when they were done in 2000 and 2001. 4 years can make a wealth of difference as far as realizing what side effects you can get and what can go wrong. I am just statying the facts as far as my interstim is concerned, because I can honestsly say I looked for many months probly as long as 3 or 4 months and I visited this site too, and the side effects I am having now were NEVER mentioned to me....