Those of us on the other side of interstim

[chady]

I have read all of these post of the past few days.
There are many of us with injury,units that failed,complications,doctor probs,medtronic probs,body probs,and more. We deal with alot and our days are hard due to it. Where do you want those of us that need to talk to one another about these extra added problems and device failures and so on.......where do you want us to go if, we can't here. Venting is not our problem. Talking to another about excruciating pain in our spines and all the other added problems are our issues. Unfortunately this has a up side and a down side. I think those of us with injury and complications need eachother and alot of support because we have these added problems. I now think like some others that are no longer like they once were due to interstim, that we cannot come here. We hold back on our damage and probs as it is on here. None of us run a contest as to who is hurt the most from it when it has gone wrong. We do however hold back how serious it can be. I knew along time ago this swings one way toward the successes and those with the injuries need to seek help elsewhere. That is kind of sad to me because that is like ignoring their is another side.......discouraged calls it when she post..candy coated. I call this entire thing very,very,very sad for all.
Chady

[ICNDonna]

Chady, the reason the "Challenges" board was started to begin with is to give people like you a place where you can share your problems with nerve stimulation.

I know if I were considering an interstim I would want to read the failures, along with the successes, before making such an important decision.

I know you are having a very difficult time right now and this board was created for people like you. and I know you will remember that we discuss issues, not personalities.

I'm glad to see you today. I missed you for the past few days. I'm hoping you are beginning to do a little better.

Sending healing hugs,
Donna

[icnmgrjill]

Let me confirm what Donna is saying. The ICN is the ONLY place that has taken the time and made the effort to reach out to patients who have had problems with nerve stimulation and to create a forum where they can receive support. That is THIS board. It is for patients who are struggling.. so that they can talk with each other, compare notes on complications, doctor strategies, etc. etc. That's it. That's why it's here and noone should discourage you from using it. We wouldn't have created it otherwise.

If you read any post in this board which you think is hurtful, please email donna or I directly to let us know. WE'd like to see those incidents.

Jill O.

[chady]

Thank you Donna & Jill,
I am having a very difficult time due to my damage from my interstim and the doctor's that performed it and then ignored it.
I think what really hit home for me and brought me alot of emotional pain was when a lady contacted me that has injury from her interstim and in her conversation she said she pleaded with her husband to kill her. When I read that part of her email I just started sobbing as I know the pain she is feeling in her spine,legs,and all she is going through. I could relate to every word she was saying because I too suffer like she does. I too have thought of death as my way out. I have a dear psychologist friend I call when I am like that. I could not help it as I am very compasionate person and because I can relate to the pain,injuries and the whole ordeal. To actually hear that from someone went beyond breaking my heart and made me think,"Don't they care (Medtronic & any doctors that ignore probs)that someday,sometime along the line one of these people going through this are going to take their life. I can tell you personally that it is pure torture when one of these interstims goes wrong or when what it does to the body goes wrong. It is in you and you can't reach over and take this thing out that is causing you so much pain & suffering. I wanted to be able sometimes when I was in such agony to be able to rip the thing out of my body to save myself. You then become at the mercy of doctors that refuse to help at this point and at the mercy of a neurological implant that has control over your body and you are helpless to stop it and that is an awful feeling that I cannot even begin to describe. It would be alot like being at the mercy of an attacker and you are powerless to help yourself therefore what happens happens and it is out of your control.
I try everyday to overcome this thing called interstim. I try everyday to walk a little to help. I still cannot sleep,stand long,or sit ladylike. Because the pressure on my spine is too much. I lost friends because I could not keep up with them. That is their loss though as I will find new ones. I don't have to live with IC and try to beat it and that I do. I have to try and overcome my injuries to the best of my ability so I can lead some kind of life like others. Honestly somedays I am not sure why I get out of bed or why I even try. I just know I have to if not for me then for someone else to let them know they can. It is quite an ordeal but I think with time,help,support and the ability to talk freely when the pain is so bad or the consequences are so bad,that I will overcome and so will others.
I know this is a difficult issue as I had to talk to discouraged from Denver there about it as she was trying to make a decision to do the trials. I had to make myself give her the information she asked for because the doc did not tell her what to expect. My heart was saying warn her off so she does not get hurt. I knew though it was her body and she was the one to make the ultimate decision......so I did what should of been done with me. I informed her how it was done and where on the body and all. She has posted on this subject of her and me talking. Knowing the injuries that can occur that was very hard to do and do so with care for her.
Thank you,
Chady

[Ruth N]

These boards make me so sad and frustrated too. I don't think that anyone who comes to these boards wants to stifle feelings of pain, sadness and loss. Chady, and everyone else who has ben harmed by interstim should be able to vent and cry freely . You know how angry it makes me that your doctors messed up and lied and abandoned you.

I think part of the problems with these boards are that we all tend to post on all of them when a post seems to warrant our reply.

Even the challenge board versus undergoing-the lines get blurred. Sometimes things posted or asked on the challenge boards are things thatinterstimers who have not been harmed can respond to and help with. Sometimes the challenge boards are clearly about grievous injuries and the need for support.

I wonder whether we should change the undergoing board to questions about, leave the success board for success and the challenge board for major life altering challenges such as Chady's. With that delineation those with successes would know that the challenge board is not our place unless we just want to send our hugs and prayers

None of us want to cross over a line and hurt another. But sometimes it is hard to know where the line was.

I for one would welcome a board that was just for questions and think the challenge board should be for serious problems. More solvable ones like how can I tell if it moved, how do I know if the stim is too high,which trial is better should be on a question board.

I think this would help people like Chady and it would also be helpful to someone like me, who wants to share experience, including caveats and warnings of what to be careful about, ask about. I find it so hard to post because I am afraid of hurting someone's feelings who has been harmed by interstim, I am afraid even to strongly recommend it anymore, even though it has been wonderful for me, but I still believe it can help some people and I want to be sure that folks considering it understand what they are doing,why they are doing it, how to do it and that it is not for pain.

Jill, whatever happened to the thing I e-mailed to you. I know you didn't get it the first time but I e-mailed it again quite awhile ago. I still think having that up permanently would be helpful.

Also, I wanted to read the 18 adverse outcome reports and I thought I got to the site but I couldn't find the actual reports just a link that seemed empty.

And finally, for all those who have been harmed by interstim please know that these boards are for you too. If in any way I have hurt any of you I am so sorry. Please accept my apologies and know that was never my intent.

Sending healing prayers to all those in need of them.

Ruth

[chady]

Thank you Ruth,
You said alot of good and helpful things.
It is very hard to talk about this. It is nice to read successes. They do not hurt my feelings or anything else. To know someone has gotten help with something is a good feeling. To know someone may be headed for trouble with their stim by what they posted is a scarey feeling. To know someone has hit the trouble head on is a devastating feeling.
Discouraged put it this way. She said to me,"Will you tell me I told you so if I get the interstim in and then something goes wrong." I told her,"No I would never say that to anyone on anything. I have never said it before in my lifetime and I am not going to start now." What I would do for her is help her through it if that would happen.
Maybe making the boards clearer like Ruth said for the interstim would make a difference. As long as others know these things do not happen to everyone that has the stim put in. And are not afraid when they read on of those post. Thinking that is going to happen to them. Actually some of us with injury had warning signs first and things that happened before things got so bad with our bodies. The warnings we had with our bodies may help others decide if they have a problem or not.
Very difficult issue. Two sides of a very difficult issue. I think it can be done. It is going to be hard for those with injury to understand those with success and hard for those with success to understand those with injury. It can be done. I believe that.
Chady