problems with every mechanical device

[dancemomof2]

I am patiently reading these thread on the down side of Interstim and getting more upset as I read. If you read the sites most complications are infection, even the MAUDE report only 2 were device error and they were corrected. All others were infections. Which are listed as a complication in your consent forms that WE the patient sign saying we understand. I have looked at the result of pacemaker problems and believe it or not MEdtronics the same maker of Interstim posted a report with the FDA about problems. I will include the link http://www.fda.gov/oc/po/firmrecalls/medtronic02_05.html. Pace makers are considered standard procedures or at least I think this as no one complains about the use of this device for health reason for quality of life or to exstend the life of a loved one. maybe this upset me this much because I am one of th elucky ones, but I took the time to investigate the Interstim, research my physician , and his success rate. I don't think jumping into this is right. You need time and lots of it to research, investigate and decide if this is right for you and if you are willing to take the risk.

I was at a point in my life that something had to be done, before i myself mentally did something to myself because of how I felt. This was not fair to me or my family to litterally have me do something stupid because no medication had helped me to this point. I owed this chance and this device to my family as well as me. I don't blame patients whatsoever for failures or complications, but Dr error for the Dr who have become money hungry and see this as a fast money make. I have almost $55,000.00 in my butt right now but I also have my life and my family that is something I didn't have before.

[Portia17]

Leslie

I am glad it worked for you.

Can you help me with something. Does the interstim help our PAIN or not. My uro says it does but I would not trust him with a 10 foot pole and I got a new Uro

Thanks for your help

[patricia1]

Stasny I am very happy that your interstim has worked good for you. And I am sorry that you are unhappy with the threads with the down side of the interstim. Yes infection can occur and alot of times this happens, but as with me mine was neither dr error nor infection. Mine happend with lead wire movement and this can happen at any time to anyone. Even if the wires move 1/4 of inch the unit will not work properly. My problems where all of my sympotoms have returned urgency and frequency and I had major left toe curling, all of my toes curl under when the unit was on. Also when I had to have a BM the unit would shock me so bad it had to be turned off just to move my left leg. And if the remote was not around I had a hard time just trying to get up and get it. I also have reported my problems to the FDA's MAUDE watch site. Yes infection are listed on the sheet when you sign up for it, but I was never told these things could happen to me if my wires moved. In fact the dr who did it told me these things were normal to have, BUT they are not normal with the interstim. He told me these things to pacify me since I no longer had any insurance. I was never warned by him or the medtronic reps that where in the operating room with me. Every person considering this surgery should be fully informed about what could happen to them. I knew there was a chance of infection at the interstim site and also there could be nerve damage and so forth. But never told about what could happen later on. My view has always been and always will be to be fully informed, find a dr with alot of experience with the interstim and who is knowledgeable in the after care. Some dr are also saying this device is for pain. It is not, it is for urgency and freq and if you get pain relief that is an added bonus. Personally my pain has increased since having the unit put in. They are misleading their patients when it comes to that point. I was my dr 3 patient with the interstim and I felt pushed towards it, but I MADE THE DECISION to have it done, not the dr. I had my unit put in in 2001, I was not a 1990's patient. After care is just as important as the surgery itself. Also a patient needs to think about what would happen if I lose the insurance I have now, could I afford to have any revisions done if need be, could I pay for the adjustments myself if I had to. It took me 8 months to find another dr after I lost my insurance. Everyone's opions to me are valueable when it comes to this treatment. I wish I knew then what I know now. I am always very happy for the patients this device has helped and it has given them there life back and given them back to their family. As I was also doing this for my family, my life consited of the bathroom, I was going every 15 to 20 minutes day and night. I had tried all other forms of treatment and nothing worked. I also felt this was my last resort for some kind of happiness and peace with this dreaded disease. My unit worked good for less than a year then slowly my symptoms returned and then I had my car accidents and bam that was it.

Everyone views on interstim are very important to them. I will tell you when I first got the interstim and it was working great for me, I felt offened somewhat by people that were talking negat. about it. How could they say these things about something that has turned my life around. And then I found myself in their boat, but unlike some I had no insurance and NO ONE TO HELP ME. I was stuck. I had a $20000 dollar thing in my back and no one would help me or tell me what to do. Not even medtronic could help me. I feel now that I have no opion one way or another about whether a person should get this device or not, that is their decision and only theirs. But I do want them to go ahead with it feeling as though they were fully informed on every aspect not just infections and so forth but everything including what could happen if the wires move. I am now looking at another surgery for revision. Also I have lost over 35 pounds since getting the first interstim and mine has come out of its pocket. It sticks way out of my back and is very noticable not just to me but anyone who sees it. I can also move it. He is also going to try and implant it deeper into the pocket.

I am truly sorry if I have ever offened anyone with my own personllal views, as it was never my intention to do so. And I praise all of those that the interstim has been your salvation. I wish all of you the best and I hope the FUTURE will bring you even more happiness with your unit. I hope it continues to give you what you desire and that none of you have to ride in my boat. :angel:

[dancemomof2]

NO and your Dr will or should explain this to you. it is for URGENCY/FREQUENCY only. It has relieved that pain when I need to go somewhat. PLEASE DON"T LET ANYONE tell you it is for pain or may help with pain, because it is not intended for that at all.

[dyno]

Patricia,
You wrote a very informative and important post. You are right that it is everyone's personal decision based on doing the research and deciding what is best for them. Research must be all sides of this treatment.

I am sorry you are having problems and hope you can get it all resolved.

[dancemomof2]

And I agree with this wholeheartedly also, my point is that lead migration was also explained to me by my DR, the Rep, and also in my consent forms.

The point I am trying to make is that this is a personal decision and not one for any of us to discourage or encourage. It just frustrates me the degree of negativity about this device and some from peopl ewho don't have one.

My second point is that there are risks no matter what you do, driving your car, walking your dog, making dinner, lighting a candle, smoking, walking on icy streets whatever you do there are serious risk somewhere, somehow you can make anything a risk, my point is educate yourself.

[dyno]

I am not for or against this device either and I think many who post about this for those who have questions about the many things that come up with it are just trying to let people know that there are 2 sides to this just like everything else.

The thing that is different is that if you have permanent problems that result from getting this device, that could change your life again and add more problems.
We all know there are successes or else this product couldn't be on the market for frequency and urgency.

This is a decision we can control though, not like other things in life, this is a choice. A choice with great ramifications both ways. So even though I don't have this device, like others who don't have the device, we are educated enough about the device to be able to answer the question of others and to tell them to really research it.

There is no question that this is a treatment that is very helpful to some patients, but it is not the answer for everyone and that is why we all stress to do the homework.


Portia to answer your question, NO, Interstim should not be gotten if you are looking for pain relief. Some patients do get that added benefit but that is not what it was approved for.
The FDA approved this for frequency and urgency after all other less invasive treatments have been tried and failed.

[ICNDonna]

Any time I am considering any surgical procedure, I want to know both the pros and cons before I make a decision. In some instances, such as pacemakers, heart valves, etc., there isn't much choice --- they are life saving devices even with the risks involved.

People who have had problems with any procedure need our support and need to feel this is a safe place to discuss those problems.

Donna

[tigger_gal]

looking into the pros and the cons are a diffenet must......
Everything that I had read in the medwatch fda was from infection.. there was a couple that I had read that was from pain and it was corrected when the device was removed.. the cons out way the pros about the interstim here, especially by people who don't have the device or never did.. I think that is what is being said..
anywho... I just wish doctors would be more honest to patients and I don't think that a dr that dosen't know the nervous system and the risks involved should be putting them in.. The problem with people having pain is wheree the lead touches the nerve....
I am sorry for those of you with pain.. I wish you had, had a better outcome..
Brat

[ICNJess]

Hi all,

Firstly, the only reason I am here is to simply state my opinion. Other than that, I am gone, as my life is simply too complicated and too full of problems right now to spend my time on a computer.

When I first got the InterStim, I was fanatical. I thought it was the greatest invention ever. It reduced my frequency, my urgency, and even a tiny fraction of my pain, and I was able to get some relief. I bragged about the stim, I became offended when people put it down, and I was extreme. It was a wrong path to follow, and I know I made those who had problems with the device feel uncomfortable and unwelcome, and it was completely wrong of me. Looking back, there is nothing I can do to fix the situation other than apologize to those who I have hurt, and hope with all of my heart that those who need support for their failures can feel comfortable enough to come to the boards and ignore those who make them feel uncomfortable.

Now, it's April 20, 2005 as I write this. My trial was September 11, 2003, and my trial was October 1, 2003. Today, my InterStim is turned off, and we are debating whether to have the product removed, or re-implant it. Basically, this is not doctor error or even Medtronic error, but it is because I have lost weight and it is no longer functioning that well. The unit sticks out quite a bit, and it causes me pain. I only have one lead, on my left side, and I have problems with this leg. My foot goes numb sometimes, and when the stimulator is on, I have a pins and needles feeling in my calf, as well as the toe curling. I leave the stimulator off, despite reprogramming attempts.

I will be the first person to say that I am so very happy for those of you that have a perfectly working stimulator. I just hope that someday, you all don't find yourself in a position like mine, or anyone else who is having problems. Because it seems to me, support on this board for people who are having troubles is hard to come by. The reality is this: IT DOESN'T MATTER THE STATISTICS THAT MEDTRONICS GIVES US, IT DOESN'T MATTER THE RATIO OF SUCCESS TO FAILURE, WE WHO ARE IN TROUBLE WITH THIS PRODUCT NEED HELP.

It is with a much clearer mind and with less hurt, and less anger towards IC, fate, and my life that I can say that the statistics just aren't that important at this point. Not to me, anyway. What does matter is my next step...what am I going to do? What will be the permanent solution, and what will be it's effects? Unfortunately, this is all on hold as my husband will be undergoing extensive surgery for 5 slipped discs in his back, one of them herniated. There are just more important things than bickering about a stupid treatment.

Again, I applaud those of you who have perfectly working stimulators...but I see no reason whatsoever to alienate those who are having troubles.

I just want to say good luck to Dusty, I read your sad post about your extensive nerve damage, and if I were closer I would give you the world's biggest hug.

And I do apologize again to those who I may have hurt and alienated in my strong belief in the InterStim--I hope you all can come back and commiserate in a more friendly environment.

So, I'll be seeing you all sometime down the road, but right now, to me, life is more important than a computer.

Hugs,
Jess

[patricia1]

Jess I was like you also when I first got mine. I did nothing but have high compliments and so forth and also felt letdown and offened by others who have had problems with theirs. I have had mine since 2001 and like you I have lost over 35 pounds since having it implanted. Mine also sticks way out of the pocket and it is very annoying and irrating. It can be seen through my clothes and I also can move it around. My problems are from lead movement though. Like you my lead affect my left leg. I have major toe curling when the unit was on and also I have problems with shocking when I need to have a BM. It would shock me to where I could not move my left leg and the unit would have to be turned off just to be able to move. I to have felt bad if I made anyone upset when I did nothing but give high compliments. For I am now in their boat. No one knows what is like unless they have walked in your shoes. This has always been a hottly debeted issue. I hope the best for you. I am going in either next thur or the following thurs for a revision. He is going to replace the lead and try to make a deeper pocket for it, which he may not be able to since I dont have alot of fat now. I am only doing this because I am hoping it will be the less invasive procedure for me at this time. I am not really sure I even want it anymore.

[dancemomof2]

If your unsure if you want one Patricia, how much more invasive would just removing it be. THey are making the same incision rather for making a better pocket and lead revision as would be to just take it out. I would never keep it if i were unsure about my Interstim. I would also never regret the few months of some what normal life if it quit qorking tomarrow and never worked again. I guess I must have one heck of a good Dr because I would really never know the thing was there if the dang incision didn't itch once and awhile.

Yes Jess i do remember your post and bragging about how wonderful it was. Is it possible that since you suffer from other condition that they may play a factor in how you are responding to your treatment.

Knowing I also have one of the leading Interstim implanters also makes my life much easier with the device. He is the number 2 next to UCLA in the procedure do numerous Interstims monthly. As a matter of fact he has a waiting list for the device and people coming from across the United States just to have him do there implant.

I am also very sorry and concerned for those having trouble, I would love to see the DR stats as to the success/failure rate. The REAL reasons so many have had trouble really interest me now.

[patricia1]

My concern for the less invasive thing comes from the wires themselves. I have read that people who have had scar tissue build up around the wires have had alot of problems removing them and sometimes they have to be left in the body once the unit is removed. The unit itself really does not concern me, other than it also has scar tissue and him having to go deeper. Unless he choose to put it in on the other side, which I have never thought of till now. I figure him just going in and repositioning the lead that are already there would be the less invaisive thing to do. Maybe I am wrong. Its just my concern at this time. And my only thought that stays with my all the time is what if it happens again in the future-I will have to go through with this same c*** all over again. And is it worth it. Yes I am also happy and thankful for the good I had in the beg. but I tell you the problem I had even finding a dr who would help me when I started having problems lasted longer than the good. And for me right now all I think about is the last 2 yrs. My big things is the dr and their treatment after you get it. I know now the first dr I had was not good to me at all. I thought in the beg he was, because I had finally found someone who would listen to me. He is also the one who diagnosed me. But my opions of him changed when I went in one time for a adjustment and I asked for a refill on my pain pills, he refused me and told me that the new rules for interstim adjustment was they were not allow to give out pain meds within 6 weeks of having an adjustment that the adjustment would handle my pain. Thats was new to me as the interstim has never handled my pain. But the dr I have now is great and wonderful, I am hoping and praying I have success again and that I will never have to go through it again. But who knows after all its only a device and things will happen wont it??? :rolleyes:

I hope my replys to you have never hurt your feelings as I know you are having great success with yours. And I know having a little one as you do you need all the good days you can handle. I just want people to understand there are 2 sides to every story. And again I hope and pray I have never offened you once, and if I have I am sorry.

[dyno]

I do have a question about the weight loss issue. Is this something you will have to be concerned about all the time? I guess what I am trying to ask is how much does weight loss and weight gain affect this device?

Is this something you were told about from Medtronics or your Dr. before you got this?
For me this aspect would be a nighmare, I have struggled with weight control all my life. I lost some weight a few years ago and then have gained some back and now I am losing again. Many people have the same struggle. For those people who might consider this treatment just what does this aspect in as far as weight control come into play?

I know some women when they have went into menopause gain weight, if they have the Stim and have always maintained their weight prior to this normal life event and then say gain 25 pounds, will this have an adverse effect that might call for more surgery like you are talking about for their unit to work?

Just curious......

[DebbieB]

Hi Jess,
I am so sorry that your InterStim is not working, I did not know that you were having problems..
It is so hard when you had some good results and then nothing I know that would be awful and hey having my InterStim six years today...hey I really do not know if my will work forever but it one's hope it will continued to do it but then if it does I will have to face that to..
I lost 28 pounds after I had my InterStim and it is still working I know that is starting to show a bit but others don't notice as I do..
Jess I wonder has your doctor look at the pace maker is self as it has a lot of wires and it could just be a loose wire that is apart from it as when on my second year with the InterStim .
I went for a check up and found out that the InterStim stop working my doctor said you need to go for surgery again, my heart was broke so then he said he had no idea what was causing it, so he re-open the pace maker and look all through the unit and then he went into my spine area and found that the lead wire had broke in half so he had to remove the lead wire , it took a very long time to have the lead wire taken out due to the scar tissue build up around the wire..
So when it was all done ....my doctor told me it take a lot of patience to remove the wire and he did a good job..
I later found out it was a faulty lead wire...

So it can happen to any one of us...

All the best Jess and please take care of you...

Hugs, Debbie

[dancemomof2]

Patricia, I am not offended at all by anything you have said, I respect your opion, I just also respect my Interstim and success with it. I do try hard not to respond to the thread on Interstim, just to avoid "rubbing my success" in. I don't want to hurt anyone either. I just really feel the Interstim has come along way since 2001 and deserves a fair shake to all that want to try it without all of praising or degrading how it works to the point that it scares people from considering it. I was one of those who was scared away from it by readin posts, and wish to god I would have just stayed away and did my own research first. I tried Ditropan Xl, Detrol, Sactura, Oxytrol patches, and even Flomax with no relief, these drugs actually made me totally unable to void and was totally miserable for hours at a time even almost 24 hours once until I could go. I am still on multiple drugs for my IC and have no pain relief, but the urgency/frequency relief is enough to help me tolerate the pain factor. I greatly regret the trouble some have had with there stim, and wonder why anyone's DR would place one days after a diagnosis. This just isn't fair to the patient at all. That is why I feel DR error is partly to blame in some cases.

As far as weightloss, I am not sure I will let you as I am tryin got lose some right now, I know others who have lost weight and had no trouble. My Interstim box is planted deep into the tissue,and I really don't worry to much about that right now.

[tigger_gal]

I was told if you had to have a revision, or after an extended period of time that you just had it removed there is a possibility of pieces of the lead remaining in. I was told that even if I ever had it removed I would never able to have another mri.. So far so good with my interstim, 2 years now...
Weight loss can be an issue... I went from 130 to 96 lbs.... and had to go and get reprogrammed a few times.. and I could feel the device, I could see it thro my skin, but I asked every one if they could see and they said no... I did gain my weight back plus a few :cussing: :cussing: :cussing: but that never affected my interstim. I think if you lose it and you lose it in your butt, thats where the problems may arise..
I hope you get your interstim fixed or removed.. this is a decision you and only you can make...
Brat

[dyno]

Did any of your Dr.'s or Medtronics warn you that the weight loss or gain might be an issue and that maintaining your current weight would be best?

There again, gaining and losing in my butt is what I do, so that would be something important I would want to be told about.

[patricia1]

Jolene I was not told anything about weight gain or loss. Then again I had mine done in 2001 and I am sure things are different now. Hopefully they (dr and medtronics) have learned some lesson with this device after several years. Actually my interstim is not located in my butt area. Mine is in my waist are around were your pants sit or where you would wear a belt right now mine is above my pants waist that I have on. You can see mine and those that I have asked can see it also, its just a big lump there. Maybe he did not put it in deep enough when I had the first one done.

I also do not understand why dr are also recommending the interstim just after diagnose. Other treatments really need to be tried first to see if they work or not. I would think if I went to the Dr for the first time got my diagnose and right away he said this is what needs to be done you need the interstim, I would think something was up with him.

Also Stasny I think you should be able to praise the success you have had with the interstim. I dont personnally feel as though you are rubbing it in my face with the fact your's has done so good. I could not be any happier for you. I know I was very happy with mine at first also, I want to go up the mountain and scream it...its great for people who are doing research to see this.

What really irrates me is a dr that will tell his IC patient that the interstim is for pain when this patient has more pain than the urgency/freq. Specially when it is not for pain. That is very misleading to them.

[dyno]

I am so glad I am not going to have to consider this treatment anytime soon, if ever, but if I were these are some of the questions and concerns I would want answered.

What made me curious about the weight control issue is that I have seen several now that said they have had problems after weight loss.

Is this something that should be addressed with Medtronics and the Dr.s before this procedure?

Is there any data about this issue of weight loss or gain in connection with this device and how it would affect placement and effectivness and what would need to be done to remedy the problem?

Again, just curious.....

[Dixiefireball]

i posted a reply here last night but I deleted it and now wish i hadn't

first off please know i'm not for the interstim or am i against it. (i think its wonderful for those of you its worked for matter of fact i have two really good friends who has it and its worked wonder for them)

I feel where the trouble is coming from is people isn't doing there homework on the interstim or there doctor's yes it may be the interstim or yes it could be the doctor doing it.
in either case i believe everyone should do there homework ask billions of question and make sure there answered before putting anything in your body (if its not life treating and you have the time to do the research)
IF i needed the this device which i don't i would do what i'm saying here. If i didn't understand the legal crap in the contracts (most of the time i don't) i ask someone to explain it to me in terms i understand.
i would also want to know all the pro's and con's against the advice too. both sides are important to know.
there is one fact tho people need to understand people who are doing well don't tend to post as offen because there out with the families, at work, etc. so you will hear more bad story then good but if you do your homework you should know what your up against.

with any device there is going to be some bad sides but in Dusty case his story needs to be heard and heard out loud!!! he is trying to save others from what happen to him. I believe the doctor and the the insterstim company should be held acct. for what happen to him. this is serious! I don't believe in sueing but if you can't get a company to listen and make things right what other chose do you have??

I believe the device can be good for many people if they did there homework know what could and couldn't happen know the device from one in to the other before you get it.
all this needs to be weighted i dont think anyone is saying don't do your homework jump in the water without testing to see how deep it is (figure of speach). Oh No! the ones who has it is saying make sure this is what you want before you jump into it. others who have had failers are saying watch out this happen to me. this could happen to you.

there is enough information threw out just these icn boards that says beware do your homework please.

the biggest problem i see is doctor are saying yes it is for pain. I don't have the insterstim but know enough to know NO IT ISN"T.

fussing and fighting to help someone isn't the answer. work together let them know your good points of the device let them know your bad points. in either case please don't put the other person down. its there life it happen to them there just trying to help like everyone else is. If it failed then there the ones who are suffering and trying to find the answers to fix the problem.
that is enough suffering right there. they made a mistake and now there having to fix it If its fixable.
what is done its to late to go back if they could i'm sure they would.

Please post the good points too. both stories need to be heard.

I just think its sad we are fighting over who is right who is wrong here. because that isn't going to help anyone telling your story giving them your advice and not putting the other person down is what is going to help them.

I'm sorry if i made anyone mad here. like i said i'm not for it or against it i'm just sick of seeing the family here fighting over who is right who is wrong.

God Bless you all I do love each and everyone of you.

Please stop fussing and just help the person who needs the help.

[dyno]

I have seen some important information come out in this thread and I have seen some good discussion taking place here.

For me, I have seen another aspect of the Interstim I had not considered before and I honestly don't know why it took me this long to have this register because I was aware of Jess's weight loss problem before.

Like I said before, this treatment had been brought to my attention by my uro should other treatments not work. So while I have been learning about the stim and supporting and encouraging people to research this treatment, this issue just didn't register for me. If I ever have to seriously consider this treatment with the information that has come to light, anyway in my head, you know one of those light bulb moments, from this thread, this weight loss/gain issue would be one of my questions for my Drs because for me, this has been a life long problem and I don't think that would change.

That is why good discussions like this thread has been, is so important. If this helped me and I don't need this treatment at this point in time, for those considering the pros and cons of the treatment for them now or in the future maybe they also gained from it.

There have been successes and failures both mentioned and I really haven't seen the fighting in the thread like some threads have been. I am so glad for that because this is such important information for those who are trying to learn about it and make their decision.

Thanks to all who have contributed so far in this discussion and any who might follow. I really would like the data if there is any to the question I asked, I will also be doing some research and if I find anything I will post it.

This is what the Considering It Forum is all about, for those who might be thinking about this treatment and have questions, do not be afraid to ask, there are a lot of things to think about.

[Dixiefireball]

your right jolene when i posted i should had said in the threads i have read not just this one. I have really seen some knock down and drag out (figure of speach again) its so important that ever question to be answered.

Most people who are doing well with the insterstim doesn't post so that makes it a little harder to know how things are going for them. All information needs to be weight carefully.

I also dont need the device. (pray i never do), but if i did i would start my homework and make sure every question i had was answered then i would ask others on the boards what other question should i ask call the instrim maker ask them question talk to the doctor find out how many he has done what was the outcome etc.
I also agree ALL other treatments need to be tried before this.

it has helped many people but also has hurt many people yes i think some of the bad things could had been stopped if they knew more about the device, and understood the contract they where signing.
we all want the perfect answer to our medical problem to fix it and some times jump into the water without knowing how deep it is.

I don't really know why i got involed in this thread this time I guess because i do read them from time to time and hate to see the fusses get started over who is right who is wrong sort of thing.

[dancemomof2]

I am glad to see no fussing and fightin, just honest opions which we are all entitled to have. I in no way started this thread to argue, fuss or fight. Just wanted to get my 2 cents in on how I felt and to make it aware to all to ask all and as many questions as you feel you need to make this decision rather it be for or against the Interstim. In my case it was a last ditch effort for some quality of life and it work. I truely could not enjoy my family, friend or life and was pretty much a depressed nightmare from being house bound. That i am not anymore. i can go get my grocery's, see my kids school parties and enjoy my new baby who was suffering nore then anyone.

[Dixiefireball]

Oh heavens leslie i hope you didn't think i ment you started a thread to fuss and fight i was saying know one should be attacked for there op. on the device. lord knows i dont know enough about the device to say anything.
I just hate seeing so many people attack others because they have something good to say about the interstim or bad to say about it.
please don't take it personal. I was trying to stand up and say listen to both sides.

[tigger_gal]

My post a year and a half or so was "OVERLOOKED"
Do any of you remember when I posted in Sept of 2003 that my uncle was diening of cancer?? I was there with him day in and day out. I posted that I was losing a massive amount of weight.. The reason was stress.... I went from a healthy 130 to 135 and dropped to 96 lbs.. I had talked to jess about this a million times back then .. I think thats what prompted her to post her post..
The weight lose mad my interstim stick out and it did hurt..... Why, because all the fat in my butt was gone. Ladies we all know when we diet we lose our breasts and butts first and when we gain it goes there first..... ok... anywho..... I had to keep going and getting reprogramed in the process of all this weight I lost.. I had called medtronics, spoke with my dr and, not to mention when I had the implant, I was told about a weight change can cause led movement, or having to go and get rprogrammed...
Here I am 2 years later.. after my last reprogram that fatal year (it was 3 days after my uncle died that I was reproogramed) I have gained back all my weight and then some.. However gainig the weight back did not affect the interstim, only the losing of the weight...
There are risks involved, and you have to know them.. yes I love my interstim, yes I feel bad for failures, but there are reasons that they fail... weight lose can move the lead, a car accident, falling on your rump.. which incediently I fell out my back door (dog jumped on me and out I went) I went in for ex-rays that day and it was fine.... Excersing and pulling the lead... bike riding,just to nam a few off the top of my head. There are so many things that you need to think about before putting one in.. like leaving slack in the leads... I researched this for 2 years.. It wasn't something I took lightly.. It was something that I talked to my uro constantly over the 2 year period.. I would read things here, write or print them up, take them to my uro and ask for this to be explained.
YOU MUST RESEARCH AND KNOW THE FINAL LINE
If you don't take your time and look into all the possibilities you are going in to it blind sided... I know you all trusted your doctors... and we should.. but that don't make them right.. There are doctors tellling us its for pain.. Interstim is not for pain ***as I scream it out to you, knowing you will tell my but, My dr said it is***
I have seen girls post on here that there lead is "in" the s2 or s3 nerve, it can't go into or on a nerve. It has to be anchored along side it but not touching it....
life is to short to argue over this.. the bottom line is..... This is your body... you need to research.. You and only you can decide... I got handed horror stories, and email that would make satan cringe about how bad the interstim was.. I voted yes for mine, and have no regrets.......
Brat

[dyno]

Cindy,
Like I said in my above post, this weight loss thing just did not register and now that you mention it, I do remember your weight loss also.
Thank-you for posting about it again.

[patricia1]

I dont think anyone has ever wanted to offened anyone either way good or bad. But like Dixie I have seen people on other threads jump on people either way. I believe I did adaquate research before getting my interstim. I looked and research for many months before I decided to get mine done. But I never found on thing about lead movement with the weight issue and also I knew about lead migration through the web site and phamplet I got but I did not realize that it could happen so easily. My dr never warned me and I never found any information on the web or books during my research time. And unfort. for me both things have happened to me. I was scared to death of putting a foreign object into my body especailly one that had anything to do with my sacral nerves. But I decided to do it and I dont reget doing it. I do however regret losing my job and then my insurance and I am plenty upset that when I lost my insurance and I starting having problems I could find no one to help me or talk to me about my problems, I am talking about MD or medtronics. I considered myself left out in the rain. The only support or help I got to even try and help was from Jill on this site. She helped me find someone at medtronics that was willing to help or help as much as she could. But other than that nil nothing at all. I think that everyone considering this device must look at the long term and also the $$$ amount of having this device. Its not cheap. Neither the product nor the reprogammings are cheap. I was paying $50.00 out of pocket to go in have someone adjust me and then walk out and the next day it still was not right. Not to mention the price of the operating room and all of that good stuff. I think people should think about and make sure that they are able to pay for this stuff should something go wrong or atleast know for sure their medical insurance is not going to stop. I also never thought of any of this when I got my interstim. I am the one with the medical insurance, my husbands work is to small and they dont provide it for him, so when I had to leave my job an my cobra stop, I could not find insurance. Companies did not want anything to do with me with IC and esp. having the Interstim. If I knew that
something as easily as lead movement could cause me all of this c**** I might have thought 2, but for me I did not, I want everyone who is considering this to learn from my mistake...My mistake being not thinking about the $$$ thing and what if I had problems could I afford to handle it. NOT getting the interstim to begin with. Because I for sure could not afford it on a limited income that my husband makes.

I feel everyone stories should be appreciated and respected. The good ones for all the postive that they show and the good that can come from this product and also the bad for showing there are things that can happen and what someone should be on the look out for should their device start acting up. After all I was told by the MD that my problems where normal with the interstim and not to worry.

[jennym]

Leslie,
I'm thinking about getting the interstim device. Who is your doctor? I'd like to go to some one who is a leader in the field.
Jenny