I'm feeling good about being a "failure"

[Melanie]

After everything I've been through, I'm starting to go through an acceptance process. My therapist says going through something like this you go through the 5 stages of grief (denial, anger, bargaining, depression, acceptance). I know that I didn't loose a loved one (the usual application of this process), but it still applies to the situation. I'm grieving the loss of my health and another failed treatment. Now that interstim has failed me, there is nothing else to try. It was a last resort and now I'm waiting for new treatments to be developed. I'm not in a big hurry to be another guinea pig, so it may be a long while before I volunteer for another experimental treatment.
Anyway, I'm starting to feel happy that it didn't work. I read all these messages about ICers going thru problems where the permanent implant isn't working for various reasons. It's such a complicated technology and it still has alot of problems.
I feel like if I did have some kind of success, it probably would just have problems anyway. The lead would move, the adjustments wouldn't be right, the device would malfunction, etc, etc,.
I don't write this to discourage patients from trying this. I'm writing it for myself and for others going through failures. This treatment still has ALOT of problems. I'm certainly proof of that after 5 failed trials.
Ironically, the broken electrode inside of me is now in a perfect S3 location. But I don't even care because I know this treatment is not for me. I just wish I would've stopped sooner because the scars still really ache.
For the first time in months, I'm starting to feel like I'm okay. I'm really happy that I made the decision to stop these treatments. I'm so glad that I didn't have the permanent implant. I'm thrilled that this is finally ending.
take care,
Melanie

[ICNDonna]

Melanie, just remember --- YOU did not fail!

It was the interstim that failed.

Sending warm hugs,
Donna

[mtnmamagj]

Melanie, So glad you are feeling better about everything. It truly is a grieving process, and when you finally reach the acceptance part is when the peace comes. It took me about 2 months after it came out to feel "healed" and able to go on with my life. I too achieved a sense of relief that it was over, and I did not have to continue to keep trying and dealing with the failures and trials. Looking back I can now realize the amount of stress it placed on me and my family, and the cost was much more than the dollars and cents. I am pleased to learn of people that have sucess with this, as we all need relief. I just continue to hope that fewer and fewer of us will have to go through the painful process of finding out who it will work best for. thanks for sharing. Take care, Kim

[Melanie]

Thanks Donna,
I totally believe that Interstim failed me. I definetly don't feel like I failed. I went way above and beyond trying everything to make it work. I feel confidant that I gave it everything humanly possible to make it work it. So I don't feel at all responsible for the failure. The failure is the technology of the treatment. It still has ALOT of problems and limitations.
Of course, I'm happy for those that Interstim helps. In alot of ways I wish it had worked for me. But after everything I've been through, I'm just happy it's over.
take care,
Melanie

[Ruth N]

No backlash here. I am so glad you are starting to feel better. You were such a trooper- never a failure for 1 minute or second. Of course I wish interstim had worked for you but it didn't. None of us have walked in your shoes and none of us are here to judge, just to care and support. Wishing you continued healing-physical and emotional, happines and joy in your life.

[Melanie]

Thanks Ruth,

This board is contraversial. So I guess I'm overly sensitive about it.
I really appreciate your words of support!

take care,
Melanie

[soccergirl]

Hi Melanie,

Thank you so much for your posts. I read them and think how grateful I am that you are able to put in words to share with others what often I cannot bring myself to write.

Interstim did not work for me. I had the implant removed a year ago. I had to make a decision to keep on trying or give up. I read the posts about the great successes and I read the posts about the problems, it is like a roller coaster of emotions.

But, I am still glad for the decision I made a year ago to have it removed and not revised. My body had just been thru too much to handle another problem with it.

Who knows, maybe sometime in the future I will need to try again. Time will tell.

Hang in there, you are doing a great job!

Lisa

[Melanie]

Thanks Lisa,
You are an inspiration to me. I could not get through this without the ICN. Hearing from you and Kim is especially helpful.
take care,
Mel

[Tx-Brenda]

Melany,
I didn't have the Interstim failure, but ANS failure and that was a last resort for me as well, so I can understand the grieving also. I know people may get tired of hearing about my story, but it helps to talk about it now. It was a couple of years after the failure before the nightmares and the crying constantly finally ended, but I'm working on getting my back pain taken care of and maybe then all I will have is my IC. Yeah right,who am I kidding. hehe!! Keep posting anytime you feel the need and I will keep listening. Tx-Brenda

[soccergirl]

Hi Brenda!

Please keep posting if it helps you because I know it helps others to hear from you. I am sure that new poeple are reading these boards all the time and it helps to have someone posting with ANS experience.

My very dear friend in Memphis was the first patient to have the ANS implant done there. It was a disaster, it did not work and she is left with crippling back and leg pain from the implant surgery. She had it removed. She has posted a few times here on the board. I am so sorry for what you went through, keep working at getting better...I know it is difficult.

Love, Lisa

[Sandy]

Hi Melanie,

I am sorry that the InterStim did not work for you. I have the interstim and it has helped me alot. Iused to have to pee every20min to 1hr and had my life with foley caths and went thru all the med and hydros Dmso you name it. None of those worked for me and especially the DMSO was the worst for me.I will never forget when I posted awhile back that when I had the DMSO I was told by the uro that did it to leave it in for three hours. Alot of people were very surprised tohear that he said to leave it in that long.
The Interstim by all means is not a cure all,but for me it did improve my qualityof life. I think you gave it more than a fair chance. The trials worked for me for a couple of days but that was my falult as I bent over and lifted things. The first trial the wire was to close to the nerver from what I understood and I would never want to go thru that pain again. I did agree to the second trial and it did make a difference. I still have my times with bladder burn and I still have to cath alot because I cannot seem to get all the urine out and still feel like I have to pee after I did pee, but just no more would come out on its own, so I have to cath the remaining out. I have 4-5 tuneups and now I am going in for a urodynamics to see on how the bladder is functioning. I don't know if the tune ups will be based on that information or not. I don't know much about urodynamics.
Anyway, I sure hope they have some other suggestions for you or hopfully there is a med out there that will make you feel comfortable. The only med that I ever had that did anything for me was called Opium-Belladonna or something like that. An old one. They were suppositories, but they really elped for the bladder burning and urethra burning and spasms.
Hoping you the best

Sandy in Toronto

[yvette]

Dear Melanie, I'm happy to hear you've made peace with this whole Interstim thing. I also never thought of you as a failure. I wish you much happiness and good health in your future.
hugs,
y.