Rules for POSTING in this forum!

[icnmgrjill]

This board is for the discussion of complications. Patients who post on this board are having problems and they need support for their problems. Please offer them support and encouragement. Please DO NOT defend Interstim as a therapy. Please DO NOT tout it's successes. We already know it's available. We already know that there ARE real successes. This board isn't about that. It's just to be there for people who are having problems.

Similarly, our Neuromodulation Success Board is for people who have great stories to tell about their therapy. For that board, patients should be sharing their success. Patients needing support for complications should not be posting there.

Let's keep these two topics seperate AND remember that we're NOT debating Interstim as a therapy. I admit that it's a viable option for SOME patients. We're are here to encourage each other and to help those who are feeling bad, feel better.

One last thought: Let's just remind each other, yet again, that none of us has the right to JUDGE anyone else in this forum, nor should we ever question their experience. We don't live in their shoes. We haven't carried their burdens. We haven't sat in those doctors offices with them. Thus, we have no role nor responsibility nor right to question anyone elses experience. Please give everyone the space to discuss their failures... without making them feel like they have to justify it. WE can't justify accidents... nor can we justify a device or surgery that doesn't work as it was intended.

Jill

[ICNJess]

I couldn't agree more, Jill, especially after our long talk today. We are a family, and need to support each other.


Hugs and love,
Jess

[Teri]

grouphug grouphug grouphug

[tigger_gal]

I agree whole heartedly.
Brat

[carly]

I think that is a great idea, I do get frustrated when I read about sucesses on this board, it is very depressing for someone who had a failed interstim, like me! I don't read the success board for that very reason. When I come here, I am looking for support and giving my story. I know there are success stories, I just don't want to hear them when I am in here.

[Teri]

{{{{{Carly**********you can e-mail me any time if you need to talk......gramini@aol.com

tons and tons of gentle hugs:blink:

[littlebear]

Hi Carly, It must be so rough to have to go through all of the physical and emotional difficulties that come with interstim failure on top of all the difficulties that already come with IC. I hope that you know that we're all here for you and will continue to be for as long as you need us (and after that too!). Sending you gentle hugs and all my best wishes, little bear

[beachbumleta]

hey
i still have the temp leads in - will get them out wednesday - and have to decide on whether or not i want the premenant implant - i live in the tampa bay area and really like my uros but i have been diagnosed for 13 years and am 55 and don't know if it is something i want to try.......i try very hard to stay off the pain meds however everyonce in a while i have a pretty bad few days and need to just take it easy - i have pretty much learned to live with the cronic pain and frequent bathroom visits - i am still working at a very stressful job - which i love - and i notice when job gets bad - ic acts up! i just don't know whether to wait a while or not - what do you think?:)

[dyno]

This is only a decision you can make for yourself. One thing to remember is that Interstim is not for pain. Some people do get pain relief from it but if that is one of the things you are looking for a permanant implant to help, that might not happen. It may help with the frequency. Did your temp implant help you at all?

If you decide you don't want to do it, maybe you can try something else again. Interstim is not for everyone. Stress can also be a really big trigger as well as diet.

I urge you with your uncertain feelings about this to talk to your family and your Dr. and make sure you are comfortable with whatever you are going to do.

I wish you well.:)

[TheresaD]

What amazes me about this site, are all the people who, like me, have had problems with their implant. To hear it from my Uro, I'm the first one in the history of the world, to have this happen to me. Wednesday I'll go in for the 3 time and have the process start all over again. It's so nice to feel like I'm part of a larger group when I come to these boards. The pain that I've endured over the last year can only be understood by those who have also experienced what I've gone through so I'm glad that the forum is here. Thank you for that.
My question is, if there are so many mechanical problems with the interstim implant, why is there no information about it anywhere but here? I've looked at other places and there doesn't seem to be any information on implants that have failed.
And another question. When I have my original implant taken out, shoul I request that the Uro send it to the FDA to test it? Should I write down the serial number and then check up to make sure that it has been done? Some light needs to be put on the problem so many of us are having. I just hope someone will listen.
Theresa

[Teri]

Theresa, I hear your pain and anger loud and clear. My dr also acted like I was the only "problem" child he had with mine. But having him take it out was the best decisions I've made and even tho I still feel like total ****, I do feel better. I believe with my whold heart that my body was trying to reject the device and once it was gone my fibro pain wasn't as bad and the other aches that I was having have been cut in 1/2. I could have a hundred dr's standing infront of me telling me that "it's not possible the implant was causing you problems" and I'd call every one of them a **** liar. I am 53 years old, lived with this disease all of my life and I Know what my body does and does't do. I don't need a **** dr telling me different.

This is my own personal opinion but I have seen the new implants....they won't be approved for about 2 years and if anyone is thinking about having it done and you can hold off for the two years, I'd do it. It is going t be so much smaller and less invasive and I really do think that is going to help the patient and the recovery time.

I think that those of use who have had a implant fail and pretty strong people cuz here we are.....still talking and not laying in a bed giving up! We ALL deserve a huge pat on the back for knowing that we did NOT fail. The device failed us

[ktrncl]

I was just wondering if any of you guys have had alot of pain with this thing because, I have been experiencing alot of pain in the back where the box is and where the wires are at and in my legs constently I'm beginning to think I made a huge mistake due to the pain.

[carly]

I had nothing but problems, it was shocking me, causing pain, and no relief from the frequency. I have a lot of pelvic pain and the medtronic rep told me AFTER I had the temp. implant in that it doesn't usually work for pelvic pain.

[pittypat135]

I know how u guys feel, i was diagnoised approximately 3 years with ic, i have had the nerve stiumulatoe located, in 3 different locations in my back, was not respoding, so, my dr, has it inplanted in my pelvis area, but, have not responded to that. I am having the bladder removal surgery in a month, hope my surgery goes well. An, for anyone, out there with ic, i can say from experience, having access to a computer, books etc.. has really been benefcial to me. I also, have a counselor, that just talks to people who have ic. And, if anyone, lives in oklahoma, would especially like to visit with u. Well, good luck, to everyone, my prayers are with all of u. Pittypat from oklahoma

[southerngirl]

I thought I was the only one who had problems when they tried the interstim with me! When I told my doctor that it was shocking me everytime I moved my legs and that it wasn't helping the frequency--she acted like I was crazy! :loco: She told me that no one else had ever had that happen.
I had residual pain for a while, even after it was taken out, and she acted like that was crazy as well.
It has been almost a year, since I had it done. Even though it was a total failure and it was painful I'm glad I gave it a try. At least I don't wonder if it would have worked, I know it didn't for me.
For those who have had problems, I offer you my support. I hope things will work out. And if interstim doesn't work, don't give up. It took a long time, but I'm now on some new meds and have a tens unit and lidocane patches and I'm very hopeful that this will help.

[Leslye]

I had the interstim trial inserted on the 7th of Feb. I was suppose to have it put in permenantly on the 21 of Feb but had it taken out. I found NO relief from my frequency(think I actually went more). My Dr. thought I was crazy, like I was making up that I had NO relief. Who in there right or crazy mind likes peeing 25-30 times a day? His Nurse has the interstim & it has changed her life. I am Happy for her, but it did NOTHING for mine!! Since this DR has told me that there is Nothing else that he can do for me. All he can do is perscribe me pain meds & that he is not about that. But he was All About that when he was trying to convince me that I needed to try the Interstim. After my interstim ordeal I ran into a old high school friend who has IC & is disabled from it also she also has FM,IBS,& Migraines. She uses- used my Uro who put the interstim in her. She is currently with another Dr. trying to get the Uro to take out the interstim (she's had for 2yrs maybe more). She is having So Many complications from this not mention Extreme lower back & hip pain were it is located. When mine was placed in All I noticed is that I was peeing the same if not more & had a Strong vibration in my left leg & the left sided of my vagina. I really P***** off my Uro though!! Since the trial on Feb(I am not saying the interstim is the reason) I have not been able to go back to work & my problems have worsened 10 times!! Thanks for letting me Vent!!! I like this Board!lol

[patricia1]

Hi Leslye....I also have the interstim. Got my first one in Sept 2001 and had to have a revision done the past May. I am so sorry that your dr treated you like this. But unfort. their are alot of drs out there that do that. I felt pushed by my first uro who did the stim. When I started having problems, and b/c I had no Insurance he would not help me. It took over 1 yr and longer to get my Interstim fixed by another dr. Anytime you need to rant feel free to. I also hope the best for your friend and that things will work out for her....

[mayray518]

I feel so bad for you. My last resort would have been the interstim also if elavil had not happened. Although I was angry for years that I got IC I now feel blessed that something helped me. I pray for you both that something new will come along. They are working on new things as we speak. I just volunteered to be in an experimental program at the University of Maryland. They took a biopsy of my bladder and going to see if the walls contain the APF factor that they know is in my urine. So more money is being put into this dreaded disease. That is one thing that can keep us going!!!

[Dusty]

THANK YOU SO VERY MUCH JILL,
I had left the boards for a time and was considering forever due to the extra emotional pain I was enduring due to some post from people that had never had the problems interstim can cause and does. I came back today for the first time in awhile because the comments on my damage had caused so much grief for me I fell into a depression for the first time in a long time. I let those people's statements get to me.
I felt I was constantly defending my spinal cord injury from interstim and all the other consequences of medical nature I have. I had talked to Jill and asked her for help for us as those of us with problems from interstim need support and need to talk to others that can understand what we are going through or have been through. I was hearing from ladies like what I have just read also..that their doctors acted like these problems were just them and it is not. You all with problems are not alone in this and never have been. I am glad Jill choose to tighten the rules for here because being there myself for so many years now I understand deeply how important it is when in trouble with interstim or experiencing these side effects and so on...it is to talk to others like you and know they understand and are there for you. I hope all in that situation can come here freely and talk and seek help from those of us that have been there and understand your physical and emotional pain. We are not like the success and I to do not go to that area of the boards as it is not for me. I cannot relate to those people and so there is no purpose in going there. I can relate to you with damage, troubles, problems, and are in a situation that has frightened you with interstim. I have been there. Mine is now removed but not before it took a heavy toll on my body and left me with permanent damage. I want you to once again know you with problems are not alone and there are those of us that really do understand what your going through and what your experiencing as I have too and so have others. I know there is hope and help and it is a journey that sometimes is long to get the help and make things better, it can be done for any of you as well. Here you can talk about your interstim and all it has caused you in a adverse way and we will listen as we understand first hand. I wish there was no need for this area for any of us, but there is so I hope I can be of the best support and help I can be as well as just listen too.
Once again...thank you Jill. It was so hard for me to post here and get answers from those supporting interstim and speaking of their success. It only made me feel worse and that I had no right to voice on my problems from interstim. Now I feel this area of the boards can be used for it intended use...for those in trouble or having troubles to speak freely and get the help they need.
Dusty

[patricia1]

Dusty I for one are so glad you are back. I am sure things are not completly back the way they were before all this fired up, but I agree with you, when you do have problems you do and can get attacked from people who are having success with theirs. I have really missed you. I figured that you were off because of what people said and I am so sorry that they caused you all of this trouble. We should be here for one another not fighting and causing people undue stress and depression. I missed U and :grouphug:

[Leslye]

Hye Dusty, Nice to meet you, I believe I came along after you had left. I am GLAD that you are back, I too did not have Good results with the interstim(trail) that is. I am SO Glad that I had the Guts to stand up to my Uro at the time & tell him that it was NOT working. I ****** him off but, Oh well. I am having a hard time with a New uroligist right now. I was sent to one recomended by my Primary (his golf partner). I like him but he does not believe that ICers need Pain meds. We need to find out what is causing our pain & fix it! BOY, why didnt I think of that!! We can ALL be cured! I am one who has tried Diet,meds, & self medication to No avail. I do think it is Great for those who can handle their IC with all or some of these. Enough of my ranting, Welcome Back!!:)

[Dusty]

Hi Patricia and thanks ladies.
Yes I left...I found myself in tears once again on a daily basis and getting really depressed. Constantly feeling like I had to defend myself on my interstim damage. When I realized it was to no avail and I was crying and feeling bad about myself after a long time of finally reaching a point where I had excepted what the interstim had done to me and my way of life....I had reached a point that I could live with using a cane to walk, wheelchairs for distance walking, adjusting my whole lifestyle and changing all...and was smiley and bouncy for others even though as we all are dealt difficult things in life..however when I realized I had let people get to me and I was suffering the consequences once again, I knew I had reached enough as I did not want to fall into a deep depression due to how another felt that had never had interstim problems or any damage. So not only did I stop coming here. I almost stopped everything in my life as I had no interest anymore. I felt like dog gone it I did not do this. Interstim and the surgeons did this to me. I will never take the blame for what has happened to my body and no one else should either. As it is no ones fault when this device fails, things go bad, or doctors abandon their patients. That remains true to this day with any of us with problems with interstim. None of you are to blame either and never will be. I had to take a break as it was once again causing me too much emotional pain. I am there for anyone that needs me and will answer any questions when asked from someone in trouble or wanting information when things are not right, or needing help, whatever, that has never bothered me and never will. As I understand greatly from what I have endured, knowing what others have endured. So I am here and sorry for any of you that are having problems. I hope Patricia that you are finally feeling better with the revision and life is better. I know you have been through alot also.
Leslye I do not know if your interstim is in or out. I may of misunderstood part of your post. And ranting is ok..sometimes it is just good to unload and when you do you feel better because you got it off your chest, know people heard and understood. I wouldn't worry about it as I believe that is always helpful to people. Keeping it inside is not. Thats why this part of the boards is so important as those with damage or problems can come here and talk, cry, or whatever you need to do. Even get mad. Whatever it takes to help you through this experience in your life with interstim. Let me say also that no one is a failure. I was feeling that once again also and had not for years. The device fails, and doctors and surgeons fail their patients when they refuse to help or remove it. You as a human being are not a failure. The failure is in what was hoped would help and it didn't for whatever reason. That does not make any person a failure.
I hope you all have a good day. It is hot here and I am going to go out and get some water on my flowers as we aren't getting rain either. I find great comfort in the flowers and they like us come in all different varieties, and need special attention too to thrive.
Thank you,
Dusty

[dancemomof2]

I know I am one of the ones that received PM"S that you were upset with me about this. I will admit it to all., and I apologize. However, I feel as strongly the other way as you do yours. We all have our opions and deserve the right to voice them. If this issue bothers us this bad then a vacation from this area of the boards is a good thing. There is alot I would love to say, but have reached my boiling point on this issue. I told my Dr that I would not give up on the goods of this device and he agreed.

[ICNDonna]

Dusty, I'd just like to tell you that I think you are a real hero! Instead of giving up, you are reaching out to help others.

Sending warm hugs to a true IC angel,
Donna

[patricia1]

I agree with Donna on this Dusty you are a true IC angel. And this is how I feel....

Leslie I appreciate your opions also for the good side of the Interstim as it has helped some, but I also appreciate Dusty voice on the bad side of it. Because I have been there done that. I have had both. The interstim has always been such a sensative subject because there is no gray area with it. You either love it or hate it. But I believe that yes we have a right to voice what has happened to us with the Interstim I also believe that when we have bad results it should be shared in order to prepare someone in the event in the future something like that happens to them. And I also believe that good reports are great to and are needed to give 2 sides to every story. And I dont believe that neither one of the side needs to be reemed out for what they believe. I support both sides and I have never tried to say anything bad about either one.

But for me personnally even having the revision done in May I am still not as impressed as when I got it the first time and waking up without the feeling of not having to go. Since getting it I have had several reprogrammings done and it is still not to the point where I want it to be. Basically right now I have given up for the time being. As long as it is not curling my toes and shocking me to the point I cant move my leg I am happy to that point. I am just sick and tired of trying to get this thing fixed right cuz it has been 20 months of fighting with docs and others tyring to fix it, so I am giving my self a vacation from it and I am not worrying about it. Its tireing tyring to get it fixed right.

[tigger_gal]

:hmm: :hmm: I posted and now its gone..... wierd!! :hmm: :hmm: any one else ever lose there post?
Brat

[Dusty]

This section of the boards is for people who have had problems with interstim, are having problems with interstim, need help and support for these problems, are afraid as they were under the understanding they were the only ones, are seeking help for the problems they are having, and support to know they were not alone and are not alone. There is no black or white here on this issue...if your having problems and have had problems, or have damage as a result of interstim then here is where you belong as you need help from others that have been there and not from those who have successes..as that story is a different area...so as Jill asked please keep this section of the boards for those who have had difficulty, are having it and need the support of others that have been there. This is not for people doing O.K. they need to post under success. That is where the problems come in for those having trouble as they get too confused when those with success posty replies. Frankly it makes you feel very torn and makes it hard to understand what is going on.
No one pushed me from the boards as no one does that in life to me period on anything. I did however get tired of defending myself and trying to justify my damage and so on. I will not leave the boards again due to that as I feel that is not a help for those that need help with interstim. I am sorry and do not mean to offend anyone but this section of the boards is for what Jill posted it to be for...that way those of us with damage, problems and so on can feel free to post without being made to feel worse. I am not for or against interstim. I am for those in need of help getting it and not being made to feel they cannot voice these difficulties safely and get the help they need. As Patricia will tell you and Tracy will tell you those of us that have been there are a great help to those who are going through difficulty with interstim. Those who have not had these kinds of problems and damage can't. I have walked in the shoes of those in trouble so I know. I can relate to what they say and confirm yes that does happen with the interstim. I am here to give support and help answer questions for those in trouble or experiencing things they never expected. Lets keep it that way as it is not important to me who upset me or why. I have the damage and that is that. I cannot control what others think or say. I do know what it is to get shocks down the legs, other parts of the body, in the tailbone, generator implant site, pain that you did not have before and so on, doctors abandoning you and all, physical therapy to get some of your ability back and so on, how to file reports with the FDA, whatever anyone needs that is not a success. I am sorry and will be frank successes do not belong here as you have an area for your post. I stay out of there because I can not relate to that and so I have no business being in there. I can relate to those on the other side of interstim. Those people need help and need it when they seek it whether it be just to listen or to get advice on what to do. As Patricia said this area of the boards is not to argue or to debate interstim...it is to get help to those in trouble or needing support for things gone wrong......I hope I can contribute to keeping it that way. Those of us with these problems need that. Those of you with success can talk happily about that also in the area for you. As you can relate to each other. Those of us with trouble do not need to feel worse.
Dusty

[Dusty]

Patricia,
I know you have tried to get things fixed for you with your interstim for sometime now.
I am so sorry you are still not where you need to be. I don't blame you for taking a break from getting help. I remember reaching that point myself even. I just had to step back for awhile as it wouldn't program right and I got tired of running to the doctor over and over on a weekly basis. I had the revisions and all and still problems.
It does get old going to the doc always doesn't it? I agree with you for now if you don't have the serious issues going on and no curling of your toes and so on..then take a break from the docs and let yourself get revived. Maybe there is something that will bring you some relief and enjoyment for now. You hang in there as I am sure all will straighten out for you too and for what is best for you.
You take care please and thank you for your kind words.
Dusty

[patricia1]

Cindy I saw your post right after I did mine and that is strange, because I know I saw it. Really werid....

Thanks Dusty it does get old. Its an hour drive to Shreveport and hour back home and I just dont care to make that right now. My mom is after me to go back and get it readjusted again, but I am so tired of dealing with it that I just dont care right now. She does not understand and feels I can jump in the car and go at the drop of a hat. So right now I am on my Interstim Vacation. Its on I have not turned it off its just not where I want it and for right now I dont care....I am sure you completely understand where I am coming from. All the pain I went through for the revision its just upsetting, but I spent so long going from doc to doc, hospital to hospital, phone call from phone call 20 months of this I am through with it for the time being....Thanks again.

[tigger_gal]

I couldn't agree more, that these boards are for people that had a bad experience with the interstim..
The ones that have good results, should post on the success borads.
The ones that had a bad experience should not post on the success boards..
Thats why we have a failure board and a success board to keep them seperated..
I think it would be a great Idea if someone posts a sucees in a failure board or a failure in the succes board it should be removed...
Hopefully all will work out and be well again..
Brat

[dancemomof2]

I honestly think it is time to lock all the Interstim thread and forums for awhile. No one should ever ever get to the point that they are emotionally stressed to that point over opions. If you are thinking thoughts like I have read you really need to seek professional help. Opions are just that "opions" and no one needs to work themselves up over that.

[Dusty]

Yes, Patricia I do know what it is like to run to those appointments and to drive constantly to get there also. I had to travel two hours for me and it did get old. I had constant reprogrammings also and that got old. I do understand where you are coming from and if you feel fine with taking a break from all of that then do so. The trips and appointments alone wear you out. I hope you can find something enjoyable for now and help give yourself that break from all of that.
I know your weather is kind of hot down there too as my friend lives there too where you are. We are having hot weather also and need some rain real bad. I do not know what you do for sure for fun or what your hobbies might be. I know when I got real fed up with my problems with interstim and appointments I tried to do some of those things to break the all the time dealing with interstim. Let me know what you like to do and so on and we can chat on that one too. Whatever helps you for now will be worth the time.
I hope you have a good day too,
God bless you,
Dusty

[Dusty]

Wow Leslye, I know exactly what your talking about and your friend. I do not know if you got it all worked out for you. I hope you did. As those added pains to the body really wear on you. I have the Fibro, IBS, Migraines and so many things added besides my IC..and so when you get extra pain also from the interstim it is very discouraging and when you did not get the results you had hoped for I am sure you were really brokenhearted. I am sorry you have all of that to deal with and hope it all works out for you real soon. Just know that your not alone in those problems and others have experienced them also. It will get better. I definately know it is hard when going through it and it seems like it is never going to end. I hope you too have a good day today and get some relief from all you deal with also.
God bless you,
Dusty

[patricia1]

I dont thinking locking them up is going to help. If you think about it people come here looking for advice on the Interstim and locking up all the boards of the Interstim is doing a dis-service to them. I wish that when I was doing my research that I had that we have now about the Interstim it needs to be out there. And like you said opions are just that opions. But it can be hard not to take what someone says to heart, I have a few times, but now I dont because all I want to do is tell my story and if it offends anyone so be it. Just like your story I am so proud and happy for you, because I know how bad it was after you had your little one and I am happy it gave you your life back. That needs to be told, dont you agree. It is something postive about it, but I also feel for the others and feel that their stories are just as important.

We just need to be there for one another, because having IC is hard enough to deal with, with drs not knowing what they are doing to families not showing enought support. But also with us ICers who have had the interstim good or bad need to be there for one another and show support and love for one another..

[icnmgrjill]

Hi everyone. Well, hmmm.... hmmmm... hmmmmmm. Okay... I don't know my "posting rules" message has become a discussion topic... but I'm actually going to close it... because I want you to post seperate, new messages instead.

Let's just remind each other, yet again, that none of us has the right to JUDGE anyone else in this forum, nor should we ever question their experience. We don't live in their shoes. We haven't carried their burdens. We haven't sat in those doctors offices with them. Thus, we have no role nor responsibility nor right to question anyone elses experience. Please give everyone the space to discuss their failures... without making them feel like they have to justify it. WE can't justify accidents... nor can we justify a device or surgery that doesn't work as it was intended.

No guilts EVER please!

Jill :)