New board

[Maureen]

Why have we changed to two boards. This is just dividing the lines of comparison and experience. There is no board for success with DMSO and another for failures of DMSO.
I have an interstim implant and I would not consider it a success or a failure. It has helped me some. So do we need another board for half sucesses/half failure.
I have observed that sometimes people are taking things too personal and can't accept other peoples results.
I think we all need to help those who have had failures by being positive and not throwing great results back in their face. Was the new board created to help these people? I am confused and feel left out of both boards.

[Teri]

I don't think that's what was intended Maureen but I do understand what you are saying. I think it should stay one board too. I don't think 'we' as a group should be divided. I believe in the interstim, it's changed my life 100% ~ I still have IC and all the symptoms that go with it and I don't think there should be a line drawn between the 'winners' and 'non-winners'.

If someone is very angry, which I would be had the surgery failed for me....then I might feel comfortable with having 2 boards. But, on the other hand, I want to be there for ALL that have had or will be having this surgery.

Sometimes when we get depresses, we tend to get stuck in the negative and I think a board that lists only failure is way too negative.

Jill????????? teri

[soccergirl]

I did not even realize that Jill switched it to two boards until your post Maureen. I am sooooo HAPPY about it and I think Jill made a GREAT decision!! If people want to read all posts they can just read both boards, not a big deal IMHO. People like me, an Interstim failure, need a place to go for support instead of so often reading how successful and great it is. These posts are typically from the same group of people. I am very happy for those folks but that is not information that patients with failed surgeries always need and can be a waste of time reading. My Interstim surgery is in the past and I need help and support on recovering from the trauma of trying so hard and having it fail and moving on with trying yet more treatments.

Jill is always trying new things to improve this site and if this does not work out I am sure she will do something else.

Lisa

[Ruth N]

I can understand why some people would want to have 2 Boards and it upsets me to think that I have hurt or upset others by describing my positive experience. This was not my intent at all.

I am very bothered by the fact that all the recent posts have disappeared from the sight.I spent alot of time on my 2 posts and my goal was to try to have everyone look at all the posts more objectively and unemotionally. I think I made some good points regarding how to evaluate what we read here and elsewhere and the importance of understanding the difference between anectdotal reports and scientific evidence.
My most recent post disappeared within hours of posting and I think that was a disservice to those who come to this board confused and seeking. I am not speaking from my own ego, I can handle someone not liking what I have to say, but I don't think anything in it warranted censure and such quick removal.
I put alot of time and thought into those posts and am beginning to wonder what was the point. Everyone is running on emotion here and I was trying to interject a more objective set of criteria which everyone could use. Was I so off base that my post needed to be deleted? Please help me understand. I was trying to help and I think that post could have helped-please explain why it was removed.?

I fully understand the need for a board where interstim failures can go and an interstim failure is much more traumatic than a DMSO failure and again I am so sorry if I have hurt anyone.

[DebbieB]

Welcome to the new board ladies!!!!

I am one that understand what is going on and it is good for all us to share our success in the InterStim on how we are doing and to help and support others too..

The other board is for other like Lisa and other to share their failure with the InterStim and have support from others on their trauma dealing with each and every day..

I think it also good for other thinking of doing the InterStim Implant the pros and cons of the procedure.

It is good to be able to share our wonderful experience with the InterStim and we all should share our stories on this success board ...

I know I will have lots of question ask about the two boards, I know Jill is doing what is best here and she decided it was best to go this way with the two boards..

I am here for anyone to give support and to answer as honest as I can of the InterStim Implant.......
It has help me out almost a 100% and has improved my life for the best, I am one of the ones that have had wonderful results in doing the InterStim and have no regrets at all for doing it !!!!!!!!!

~~~~~Debbie~~~~~

[DebbieB]

Hi Ruth:
Your posts are still in the Nerve Stimulation Failure listing where you put them ok..
You did not hurt anyone in your message at all, please don't take it personal ok!!

~~~Hugs Your Bionic Twin~~~ Debbie

[Maureen]

Ruth, I understand what you are saying about how sucesses are measured. I think this is why these two boards are dangerous. I would not want to post under sucessess and people think that I am another happy interstim customer.
If we are talking about total interstim failures where the units are removed maybe we should be changing the title of the board to reflect that instead of "failure". The title might be "interstim removal" or something like that.
Either way, I think I will not ethically post on the sucess board.

[Meghan]

I don't believe that there should be two different boards for interstim.
Currently, i am definetly a success, but there were times I thought it was never going to work correctly.
It took months of adjustment and calling the doctor daily to finally find the setting that is correct for me.
It is my understanding that most people have a few months of needing constant adjustment and doctors appts.
So, how can a person tell if the interstim is a failure, when it might remedy itself in a while.

[Teri]

I'm with you Meghan. IT took along time for me to get my adjustments right. And, there are days and nights when my symptoms are as bad as they were pre-surgery. That certainly doesn't make my surgery a failure. I kept going back till I got it right. And, that is so important. We can't sit on our fannies and hope one adjustment will work. I don't like the seperation of the two. teri

[Sandy]

I think it is 6 of one 1/2 dozen of the other. People who have had success with th implant want to share and compare with others who have sucess.. On the other hand people who have not had success with it need support and I can understand that when you read how everyone is doing so great with the implant it can really bring you down and the question to the one who it did not work for is Why me....I have not followed the posts daily, but I feel that people who have not had success definately need someone else to talk to who are in the same "boat" as them and they will find comfort with(not the right word really) in the fact that they are not they only one that this did not work for. On the other hand the people who are just having the trial done, or have had the trial with success and are awaiting the "operation", reading the negative aspects of it could scare the patient and not want to follow through with this. One thing I would suggest if I were the patient going in for the operation takes some of the negative postings as well as the positive ones with you and query your DR on them. I also will FULLY agree that with Teri and Meghan, that it can take MONTHS to get that RIGHT adjustment and the up and down of your own remote control. I still have problems with urg/frq retention and urethra spasm and having to cath, but I can say for the last three days, I would have never known I ever had a bladder problem. TOUCH WOOD. There were many times I sat and howled cause I thought Damn, why did I go through all this and it works for while and then BANG another flare with urg/frg retention cathing. I made a mental list of the things that I do wrong and this time have regiimented myself to what I eat and drink. SMOKING for me is a no no , but every once in awhile you just NEED that puff. I am sure there are a few who can agree with me on this. So I have one or two or three and hope that irt will not cause a problem. I had some yesterday, along with some cookies and had to have cough medicine with codeine(horrible cold, thanks to hubby and his germs and the sneezing cat) and thought for sure this was going to be a day from hell. Drank lots of water last night to "compensate" and so far.....it is still good. I have had to crank the unit up to where I just can feel it go off and on, and I inow from past experiences that it has to be left there for a couple of days but I seem to adjust and the symptoms start ot fade away again. So the smoking crave has been dealt with along with the sweets and now I have to really regiment again. Also another thing I wondered. People who seem to have only had it for a short time (1-7 months, get check for UTI and have them do a culture(dips sometimes show nothing with me)and yet the culture comes back positive. I was diagnosed with an infection last week and have been on macrabid and take Toradol when the urethra pain from cathing too much..
For me, yes I have had success with the Interstim, but it is still new and there have been MANY days in the past 7 months that it did not feel like it was ever going to work right. My last adjustment seem to take for ever, but I personally find that when I go for an adjustment it takes a few days to maybe even a week to get it "right" and that is after the DR has done his thing and then I have had to play around with the remote turning it up to the point that I felt for sure it was stimulating in the right place and to get that good strong sensation you have to crank ift up and then crank it back down to where you feel comfortable. I beleive my problem was that I was keeping it too low and that was part of my problem.. When I went in for my last adjustment he could not get I reading on his computor or just barely. I can't remember exactly what it was, but it was VERY low. And when he tuned up I felt the difference in stimulation and have had to play around with it for a couple of weeks now. Boy this is a klong winded one. But my point is that if you have just had it done it takes awhile and like I said many times for me I got so frustrated with frg/urg retention that I swore the thing was not working, and it is trial and error in the tune ups for patient as well as DR.
I think if I was a patient that has had the implant in for about a year or more and it still was not doing any great improvements for them, then myself in that position would feel it had been a failure, and would have to consider further treatment, whatever they and their dr discuss.
As for the negative and postive board, I have mixed feeling on it, but when I felt I was getting nowhere with it there were a couple of people on here who have had the operation and had success and told me of their ups and downs with it and to persevere(for lack of better words) and so far I am glad I have. It has been 7 months since had I had the Interstim planted and believe me like I said before I had very negative days, but I was glad there was someone there with a postive outcome and that helped me.
Last further word, keep an open mind and remember everyone does not respond to everything the same way.
Sandy