Frustration

[Sandy N.]

i have tried and tried to get an appointment with the interstim rep to reprogram me. I have emailed him, I have called him, I have called the doctor. Well I finally got an answer today. The one who helped with the surgery up and quit.I called the doctors office today begging them to let me see the doctor. I had to sit there and explain everything to the girl and she still did not understand what I needed. Finally I got through to her and said I need to see the doctor. Well she told me that my doctor is now only in the office 2 mornings a week and his associate is not familiar with interstim. I am going to lose my job because of taking os much time off.Oh well I have an appt. next thursday. My main problem is Urgency and leaking has returned and so has the feeling of always having to go to the bathroom. I have had my interstim in since July... banghead banghead banghead

[Teri]

Sandy, I want to reach thru the screen and hug you. Stories like yours need to be told and they need to be HEARD.

When people are considering this very serious, dangerous surgery the tend to listen to the good stories. NO ONE believes that they will end up with one of the 'problems' listed on that consent form we sign. When someone does end up with a problem like yours, which is a HUGE problem, there is no one left with the guts to share their stories because for those of us who have had problems or bad things happen never feel supported here so we stop posting.....well, we stop posting and what do we have left?????

Only the 'good' stories. And, for every good story that is posted here, there are just as many girls e-mailing each other getting the support they need. They do not feel wanted or welcomed here and it's a shame because this is a serious surgery that we ALL should know EVERYthing going in and trust me, you are NOT being told the truth by your dr OR by medtronics.
You have found that out by being ignored for almost 6 months. When my original device quit working I called my uro for 6 months waiting to reschedule a revision and on the last call his secretary told me, and I'm quoting her, "he wants me to ask you what you want him to do about it." For 6 months the *** had been leading me on that he was going to try to get this stinking thing working. I ended up with a new dr, a revision and 2 years later had it removed because of more problems but I know how emotionally painful it is to be left hanging out there, with a foreign device in your *** and no one seems willing to help.

PLEASE don't let this be your last post. PLEASE keep us up on what is going on, what your dr is doing for you and mostly, what Medtronics is willing to do to help you with this.

I come here and I beat my head on the same wall time after time because of all the people who have had to have their units removed, I'm the only one who still posts and I NEED HELP, I need the voices of others who have been scared by this procedure..... I just don't have the strength to keep doing it by myself anymore.

Sending you a zillion hugs
and some very very special prayers.....

[email protected]

[Sandy N.]

Teri, thank you so much for your reply. I always feeling like I am complaining here and over the phone to the doctors office. Of course the medtronics person still has not called and set up an appt. I will just have to find him I guess.Teri did the place where the battery pack was placed on your backside, did it constantly hurt, and did you cobstantly feel it? My doc said I will get used to it. Oh well. Thanks again and thank you to whomever reads this post. I care about all of you and am so thankful there is a place to turn when I have to vent. Sandy angel angel

[Teri]

Once I had my revision there was always pain at the site of the device AND horrific tailbone pain. Naturally, people smarter than I said that this could not be happening but I know my body and I know what AND where it was hurting.

For the 18months that the device did work, my 1st toe curled but it was working so I could live with it. Then, 3 toes started curling and the pain started going up into my calf and it just stopped working all together....by that time it was too painful to keep the device on anyway.

It's funny that for 4 years I complained about pain symptoms that I'd never had before and I was told it wasn't possible the device could be causing it, yet, after it was removed, within weeks those symptoms went away and I was left with my good ol' fashion IC pain But the dr's are still smarter than me, AND the girls who have been forced to file law suits banghead banghead

[dyno]

Sandy,
I am sorry about the problems you are having. I agree with Teri that these stories need to be heard. I have never had Interstim nor do I see myself needing it in the future. I am a firm believer in people knowing both sides of the coin with treatments. This is one of the more invasive procedures done in IC treatment and so therefore the risks can be great.

I hope if the Interstim does not end up working out for you that you can try some different treatments with better results. Keep your chin up, and know that we are here for you.

Jolene grouphug

[jaime15]

I'm sooo thankful for you guys post about your experiences. I have had in the back of my mind that I don't want any foreign objects in me. I'll do whatever my uro wants, except that.
And your posts just confirm that I'm thinking smart about it. I'm totally afraid cause I don't want to make my symptoms any worse. Don't get me wrong, I'm all for pain, pressure, and frequency going away. But it doesn't help if it works a month and makes everything worse in the end.
Thanks Sandy and Teri~ I wish I could help your pain. Lord knows ya'lls posts help me.
Tons of prayers to you that you can get ahold of somebody out there.

[carly]

I had my interstim in October. The surgery was very painful for me. I was awake so I could tell them where I was feeling a sensation. It was so painful. It lasted 2 hours and I was crying almost the whole time. The medtronic rep told me AFTER the surgery, that it doesn't usually work if you have a lot of pelvic pain. He meant it doesn't work for frequency or anything if you are that advanced in your disease. I had it removed in October, 3 weeks after the initial surgery. Mentally, it was very depressing because I had such high hopes, to not go to the bathroom 40-50 times during day, and 10-15 at night. They were going to take it out with "twilight sleep,", but my urulogist called the OR right before the surgery and said "put her totally out, she has been through too much".

[Mimi-in-Chicagoland]

I think what needs to happen is Medtronic seriously needs to revamp their doctor training program. The implant should NOT hurt at the generator site OR at the spine. If you feel burning, something is wrong. The implant needs reprograming. Each person will use a different setting and sometimes it takes time to find what works. I can't believe the things that these doctors and reps tell people. My first doctor didn't do many implants and my implant quit working and it burned constantly...it turned out that the wires weren't watertight and had corroded. The second doctor had done a ton of the implants and fixed everything. I think that makes a huge difference. He also has an interstim clinic every Thurs, so if you need reprogramming you can go in and get it done. I love my implant and would go through it again...of course, I was about to have my bladder removed and nothing else had worked for me.

--formerly mbrogier in Detroit

[icnmgrjill]

Wow! I apologize for not catching this earlier. You've all made EXCELLENT points and most of you should already know that I am not an endorser of interstim UNTIL I see proof, long term study proof, that demonstrates that this is a viable alternative. Why??? Because I've been listening to angry Interstim patients since 1993. In fact, the first two patients who joined my local support group were former interstim patients... and boy did they have some stories to tell. Their level of anger was substantial and there were meetings when just mentioning the device would case either tears or anger. And, yes, the device has been refined and improved since then... but many of the issues that we saw ten years ago are still issues today.

#1 - Pain during procedures. I personally met with Medtronic staff several years ago and literally begged for better provider training and pain care. It is no wonder that some patients are frightened when they hear stories from other patients who have had agonizingly painful procedures. I still recall one young man who was so traumatized that he screamed during the procedure to the point that his mother could hear him in the waiting room. I think that she still occasionally reads these boards and I encourage her to share their story.

#2 - The incidence of complications. All it takes is a scan of the MAUDE database over on the FDA website to see that a number of complications have occurred. From devices and leads that break and shock patients (creating pain), to leads that move, to (in one case) a patient having her lead come out during a bowel movement. Obviously, the doctor didn't put it in the right spot in the first place. Other patients have been shocked going through security. The list is very diverse and eye opening. Again, I urge anyone who has experience ANY complication to file an adverse event report with the FDA. This is the only way that we can publically document problems with the device. Do it today!!!!! http://www.fda.gov. Anyone who says pain can't happen from the device should also be given the reports from the FDA. Complications, usually in the form of pain, occur! That is undeniable.

#3 - The lack of long term published data. What we've seen on this site are a number of patients who have had their devices removed after a variety of failures. Furthermore, some patients have had numerous revision surgeries. The FDA required the company to complete a five year post approval study which documented the rate of surgical complications. As yet, that report still has not been released to the public despite my many requests for the data. The last communication I had with the FDA was that they had not received the report from the company. It is now 18 months overdue. How can any patient make an informed decision about having this procedure without seeing the long term data??

#4 - Misinformation about it's use. The FDA clearly mandates that Interstim is only appropriate for use in URGE INCONTINENCE patients after they have tried and failed other more conservative therapies. Thus, it is NOT a first line therapy for any urologic condition. You can see that on the Medtronic website. Yet, it amazes me when I hear from patients who have been told that it's the only therapy available for IC... and, in one case, a patient was lied to and told that there were no other therapies available for IC. Imagine her fury to discover that there were oral drugs, such as Elmiron, that could have been tried first.

Now, despite the above, there is a place for sacral neuromodulation. It can be helpful for some patients, particularly those who have extreme frequency or who struggle with incontinence. If you have tried and failed other therapies, then it's certainly worth learning more about and talking with other patients about. Learn both the success stories and the failures. Ask patients what they would, or would not, do again. Explore both sides of the issue carefully. And, of course, talk with your care provider.

Please.... please... please..... file your FDA reports. If not you, then who???

Jill

[rjyoon]

I have posted on this before, but I think it bears repeating. In my town there was a physician involved in the trials which supported FDA approval of the Interstim. He turned out to be a slimeball (why I didn't go through with it then), was fired & it made the front page of the business section of the newspaper, & absconded with patient records. Medtronic needed that information to complete the 5-year follow-up study, as he was one of the few doctors supporting the trial. Without his information, they've had to wait for others to hit the 5-year mark & collect the data.

On a separate note, when I originally started posting on Interstim in 2002, I was bombarded with negativity. I can't believe anyone here thinks that a regular reader isn't aware of all the possible complications. My questions weren't being answered, as my thread was highjacked & became a place to post negative things about Interstim. I left the boards for a long time because of the flood of negative posts & the lack of response to my questions.

[tigger_gal]

Sandy
(((hugs)))I am sorry you had to go thru this I can call my uro on any given day of the week and get reprogrammed that was un called for.. I feel as if your dr cant reprogram you why is he doing them.
HUGS carley and Teri sorry yours were failures.
This sure was a negitave post I know that some of you had failures and I am so sorry, but those of us who have should not be knocked!

I guess back in 1993 there were some horrible doctors out there to treat there patients so in-humanly, any one with any brains knows that you cannot do a trial with out any anestia (sp?)...
We are updated to the 2000 now and there has been more success stories on interstim thhen failures. There are many of us who just got the interstim and many of us who have just had it a few months.. We will never know the results of ong term study until the doctors get there buts in gear and turn in the results..
I have a great uro/IC Specialist Dr. Peter's in Michigan and I would Gladly tell anyone any day of the week if you want the interstim go see Dr. Peters, he is not pushy he "suggested" the interstim to me and I was in no pain (except normal incesion pain) after my trial and my implant..
I do not in any way shape or fomr think that the medtronics is responsible for the stupidty of doctors..
I think that this procdure should be looked into carefully before you decide as with any surgery.. It is not for pain.
Having growing up knowing of IC my mom had it I know alot of the ins and outs of rxs and I know that dmso will eventually take your eye sight.. Thats why my mom had to stop dmso's
any way I am going on here defending the interstim but you all have your own opinion and mine dont matter.
Brat

[ICNJess]

RJYoon--

I agree with you 100%. What about the success stories? Don't those count for anything? I am a walking success. And you know what? It sucks that Elmiron, DMSO, caudal blocks, other insills, other procdures, counless amounts of pills didn't work for me, but I had to have the Interstim done. You are all lucky that you were able to get by on pills but you don't understand that some of us aren't. You come around and you put interstim, bladder removal, other treatments as such down, and you don't understand where people like me and the others are coming from. We want a chance to to live normally, and guess what--Interstim gave me that option back.

I don't pee 40 times a day anymore, I don't wet myself, I don't have the urgency, etc. etc. I can go on and on but it will fall on deaf ears.

You must think that we are pretty stupid or something, that we just jump head into these procedures. I researched mine thoroughly, talked to people who had success as well as failed. I got 3 different opinions. I talked to the medtronics rep. I talked to the surgeon several times before. How much more thorough could I be? I wrote down questions and brought them all with me. He answered every single one of them.

This is not a decision that is taken lightly. It's not like I just woke up and decided to have it in.

Teri and Carly--I am so sorry that they didn't work for you. I can't imagine the frustration and pain that you are going through. I am so sorry, stories like yours need to be heard. That is definite.

But please--don't let a few stupid doctors ruin your outlook. Hell if I blamed all the stupid doctors I've seen, I wouldn't be able to move on with my life. It took me countless years to get a diagnosis of IC, and guess what, because of the stupidity of 3 doctors before, I can't have kids. But guess what, I don't sit and blame the entire medical community and shun their treatments.

I don't ask for much in life, hell I sure didn't ask for IC. All I wanted was a chance to not be able to pee 40 times a day. I'm sorry some of you who haven't even tried it have a bone to pick with Interstim, but it's really not your place. You haven't walked in my shoes, you have your IC under control because of the more non-invasive therapies. And kudos. But some of us aren't that lucky.

In fact, I got a letter from my urologist stating (this letter is for insurance and other purposes) that I have severe IC and my IC does not respond to modern, more traveled along treatments. Thank God for Interstim or else I would've killed myself by now.

[dyno]

I am so glad that Jill jumped in on this. I always like to hear her views since she is really in the know on all the issues.

One thing I want to add to something that Rjyoon said. I am sorry you felt like you needed to leave for awhile and I am glad you came back. One thing you mentioned was the "regular" reader is aware of the risks. On that point you are right because we read the boards on a frequent basis. But...there are people who just have found the ICN and don't have the time or know how to go back through the other posts and read all the info that we read on a daily basis. Those are the ones that need to be able to see both the good and the bad when a topic like this comes up. So along with the positive, there needs to be the negative posts so that they are getting the true picture.

This is not an issue to be sugar-coated, this is a very serious topic. As Jill stated, it does have its place in IC treatment but it is not fair to those that need this important information to make a very important decision to not have all of it, not just the good stories.

If I can do nothing else for this board, it will be to make sure that people understand they have to research treatments and become their own advocate in their treatment. I have had IC for 29 years now. I am 45 almost 46 years old. My life would have been very different had I known and understood everything that I do now.

I wish for all of you the very best and understand that we will all respond to treatments differently. That is why I find it so important to educate, and to help people on their IC journey.

Jolene

[dyno]

I want to add one thing to what I just wrote before. To those of you who have had success with your Interstim, I am very happy for you. When I present or encourage people to look at the negative side of this issue or any issue for that matter, this is not a personal attack on any of you. I think of all of you as my friends but this is my way of helping people who come to these boards for information and knowledge. Again, I want the very best for all of you and I know that we all get to that place differently.

I will never claim to be an expert in this area but someone who is concerned about people and their rights as a patient to get involved in their own healthcare and decisions that can affect their lives forever.

Jolene

[Susan2]

The one thing I can say for sure, we need the voices of all of you. The good,bad, and ugly.
I am in the process of getting the Insterim, and I have researched this for over a year! I just know nothing has helped me and I sure don't have any kind of life right now. I cannot go on living like this! The only place I go is to the dr.!
I haven't been to church in over a year, b/c the last time I went I had to go to bathroom 4 times.
I told my husband and he agreed I would not put myself in that position again, until I could get some help. Well, the insterim sure seems to be my answer. My dr., told me the worst that could happen, if it doesn't work, he will take it out.
(trial). He also promised he would be here for me anytime I need him.
This is just my opinion. I don't want to hurt anyone's feelings.
Susan