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Considering Interstim - help!

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  • Teri
    replied
    Pam~you have an excellent attitude
    At my next appt with my Neuro I am going to go ahead and be tested for nerve damage. I am too young to live the rest of my life like this and if it's not nerve damage (which she is sure it is) then I will beable to look at different options to make myself a more productive part of the world wink

    Wishing you the very best~

    Leave a comment:


  • JAF
    replied
    Pam,
    You have the right attitude and that is what you have to do to make that decision for yourself. That is why I always post on these boards the way I do. I don't have Interstim and so I am not a success or failure but I do know what is important to do in making a decision of this magnitude. Luckily, I have not had to make this choice. I have researched it and know what it is about.

    My heart goes out to anyone having to make this tough choice and I support you in any decision you come to. Good luck. grouphug

    Jolene

    Leave a comment:


  • Susan Butler
    replied
    Hi Brat,
    As you know it took me a year to decide to get the surgery done. Thank God for you and Jess. I feel like I am soon to get my life back. Me and Bill researched everything. The dr., has been wonderful.
    What I wanted to tell you I have on my computer almost the same letter that Aunt Debbie wrote to me. We were talking alot b/c we were both in the process of getting the insterim done. We felt we didn't have any other option, for the urgency and frequency.
    Aunt Debbie rest in peace.
    HUGS AND LOVE
    SUSAN

    Leave a comment:


  • 08pw70
    replied
    This certainly is a hot topic! I can understand both ways. When you try a treatment that works (especially after many failed treatments) you want to get the word out in the hopes that others can get the same kind of help. On the other hand, when bad things happen you want to warn everyone you meet so they won't have the same misfortune. I am already a victim of doctor error. I believe this is the reason for my IC in the first place. I had my ovaries removed in June 2002 and started with IC symptoms about 3 weeks later. In November 2002 I was dx with IC and during a laparoscopy at the same time the doc found that a large portion of my left ovary had been left inside of me and had wrapped itself around my left ureter and attached itself to my bladder. That doc believes the trauma to my body from all of that is what triggered the IC. This was a decision I made very carefully - the doctor who did the surgery was considered one of the best in the area etc...And still I had this happen. So...I am inclined to think that you listen to both sides, respect both sides, make the best decision for you and if something does go wrong you know you made an informed decision and you deal with it and never look back. The information that is hard to find on the interstim is data about what risks there are - not necessarily things that have happened to people but documented risks (like nerve damage). Anyway, it is a hard decision and I don't know yet what I will do but I thank all of you for your stories, advice, concern etc... I will keep you updated!

    Pam

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  • JAF
    replied
    I support anyone with whatever decision they come to. I for myself want to know if it does fail what kinds of things went wrong. I would think others want to know that also. You know if it is a success that your quality of life is going to be improved, it is only fair for people to know if it doesn't work what else they could be dealing with.

    That is all I say when people ask, not only talk to the ones who have had success, but find out from the ones who fail or read what could go wrong before they take that step. If Dr. error is the problem, it does happen from time to time. What will they be dealing with then? It is a fair question and something to be researched, as well as a long term study if one is available. Whenever I enter into a procedure or treatment with a good success rate, I always ask about the negatives, that way I can make up my own mind. That is something I learned in nursing school when patients ask questions. If it was something I could and legally could answer, they needed to know all of it. You can't make a good decision for yourself or for what impact it could have on your family, without that and when people who don't know anything about Interstim or are asking they will hear the same thing from me everytime. Even if other data comes out about Interstim, I would still tell people this.

    No arguement here, my feelings don't matter. It is their life and they deserve to know about everything from people, articles, their Drs. and anyone else they can obtain information from. Then and only then can they make a decision that they and their families are comfortable with.

    Leave a comment:


  • ICNJess
    replied
    Pam,

    I PM'd you.

    Hugs and love,
    Jess

    Leave a comment:


  • JAF
    replied
    Pam,
    Just do your homework. Research the procedure, device and pros and cons. Make sure that you have tried all possible treatments and given them the time to work, sometimes the treatments take 6mos to a year to start to obtain results.

    You will read about the successes and then also realize, although you don't hear as much about them, there are people who this doesn't work for and have had complications due to the Interstim. It has affected their lives, and may affect it for the rest of their lives. Make sure you can live with that in addition to the IC, if you were one of the failures. One more thing to read is a recent article that Teri first told us about. Here is a link to a short version of it. I bought the magazine and there is a longer article in there, good information to know about.It was in the March Good Housekeeping. You could read the full article at a local library that has the magazine if it is no longer on the shelves.

    http://magazines.ivillage.com/goodho...615788,00.html

    No one can make this decision for you. I have never had the Interstim but did research it extensively when it was a possible treatment mentioned by my Dr. if other things didn't work for me. I wish you all the best and hope you can find the treatment answers for you.

    Leave a comment:


  • ann chisholm
    replied
    Hi Pam, I'm in the middle of the process, so I can't give you the kind of advice that many of the other gals who are vetrans can. I know that when I was doing research, reading all of the interstim boards and info on the web page really helped. So did keeping up with the questions other people were asking while they went through the process. Plus, everyone here is really supportive and will answer just about any question you have that might come to mind. Best of luck with your research! Best wishes, little bear

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  • Katherine
    replied
    I love my interstim and am so thankful for it.
    I have my life most of the way back.
    I do it again in a heart beat.

    Leave a comment:


  • ICNJess
    replied
    LOL I am going to sound like a broken record and it's only because I believe whole-heartedly in the Interstim, but do your research before going in head first. I have it and love it.

    Bladder spasms contributed to most of my pain, and I no longer have them. I was voiding 40 times during the day and 10 at night. Now I am at 10 a day and maybe 2 or 3 at night. I still use pain medication, but after my stim went in I enjoyed a great remission and a few pain free months. My pain is not nearly as bad as it was before, but it is still there, I will not give you false hope about that.

    What I did was, I contacted patients of the doctor, both failure and success stories, researched at ICA and what not, and made my decision from there. Try http:/www.interstim.com

    It's a great device. Read my Interstim story to get a better idea.

    Hugs and love, and keep us posted!
    Jess

    Leave a comment:


  • momw/ic
    started a topic Considering Interstim - help!

    Considering Interstim - help!

    Hi everyone! I went to a new uro today and I really like him and his approach. I am one of those that has not responded to anything very well and the things I have responded to I have grown immune to so they no longer work. Anyway he wants me to consider the interstim. My dominant symptom is pain but he feels like it may be worth a test to see if getting the frequency and spasms under control will ultimately effect the pain. I am actually one of those that is willing to try most anything but my hubby is going to be very skeptical about this. All words of advice, encouragement, your experiences etc...would be greatly appreciated.

    Thanks,

    Pam
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