Will It Ever End???

[patricia1]

Add another chapter to my never ending InterStim Saga Story...Here we go again sort of.

I got my 2nd InterStim in May 2005 since this time 2 of the leads closer to the skin dont work right because they make my left leg muscle twitch. Then I was have the nerve in the top of my foot twitch. That settled down and now it seems the device has worked its way out of the pocket it was in. I am now able to move it up down side ways and it is now hurting me. I am unable to lay on my back in the bed because it is hurting. I am not sure if it due from maybe some weight loss since the revision or what...But I am really tired of this.

I guess I am just not meant to have this device and some hope with my IC symptoms. I have started going back to my gyno for help with my IC, it as the doctors here just dont want to help very much. Once they put in the device its like okay now you are cured HAHHH!!! I am gonna make another appt with the uro and I am thinking I am just gonna get it removed and be done with the entire thing...Thanks for letting me rant a little

[dancemomof2]

OH No Patricia I was so hoping this one would work and do ok. I think I would have it removed if it were causing this much chaois. Sending you and you back side feel better thought.

[asn]

I'm sorry you are having so much trouble. As far as I know, if you loose too much weight, the pocket can start to give you problems, that is why they invented the little battery, that is almost the size of the original one.
My four electrodes does not work, one gives me pain, and another one gives me pain in the cocxis.
You should talk to your doctor to see how can he help. but don't get sad, maybe there is help, if you find help in your symptoms, maybe there is something easy they can do.
As you know, I had my batteries changed, and it was a very easy recovery. I was out shopping at day 4th. It was 100% easier compared to when they put the leads.
But as I always said, you are the only one to know how much you are going to try... so it is your decision... but my advise, if you feel the interstim is working, before just jumping in your appointment with the URO to have ir remove, you should talk and see what he thinks, then make your decision!
I send you a big hug, and prayers !!!!!!!!!!!!!!!!!!!!!!

[patricia1]

Thanks Leslie!!!:smile tee

Thanks also asn...I had that problem with the first one also. The first one was implanted in my waist area and I did lose alot of weight the first go around and it stuck out and hit things and just was miserable. But I also had the leads moved, so when I did the revision in May of 05 he put it in the butt area because there was no fat anywhere else. For me the second one has never worked either, not like the first one. It has been one problem after the other and I am really through with trying to make it work. When I had the 2nd revision it hurt so much worse than the first time, because of the way the leads were anchored and scar tissue. For me it really has not been of much help with my IC. I have been through alot with both of my InterStim it is just irrating to have to go through this again. And I dont want to have to keep going in for surgeries so much. Thanks again for the warm thoughts they mean so much:smile tee

[LBUSH49]

Hello my name is Larry , I've had 7 back operations and the pain was really bad in my bottom and going down both legs to my feet , I went to a pain clinic and they did a 14 day trial of a spinal stimulator , and if you don't get 50 -70 % reliefthey remove it , but with me it was a huge success instead of a pain in my bottom and legs , I get a tinggleing feeling , almost like sitting on a vibrating chair so they did the final implant the battery pack is sewn right into my bottom were the fatty tissue is , you don't even know it's there and I get a remote control I can turn it up , down , on or off ,and I have to carry a I.D. card to it sets of alarms at airports I give them my card , mine is made by MEDTRONICS , I'm not really sure if this is what you are talking about but if it is check out their web site Medtronics.com , the battery life is 3-5 years this was the best thing that's happened to me since I've had a total of 23 operations since 1985 when a convayor fell on me at work I'm 50 years old and have been disabled 21 years , since the accident ,I hope this information is helpful ; LBUSH49

[tigger_gal]

Patricia,
do you remember back a few years ago I lost alot of weight. I could feel and see my stim.... every bump was very painful.. I did gain my weight back and still have my stim.. but what I am geting at here is I think your weight loss has alot to do with your prolems.. if you are having problems with it and want to get it removed I think you know what is best for you.. keep us posted on your decision. and remeber it is your to choose to keep it or get it out.. don't let anyone talk you into something you are not sure of.

[patricia1]

Hi Larry!!! Thanks for the post. I think what you have is something similar to the InterStim. My Uncle is a pain patient with his back, he has a ton of trouble and he was looking into getting something similar to mine. Medtronics makes so many different Neurostimilator's that sometimes it can get confusing. My battery pack is located in the bum area. When I first got the second one I could not feel it. I started having some issues with the leads. I have lost some weight since having the surgery in May of 05 and I know this is why it has moved from the pocket. For me the second one has not worked properly either. Oh my leads and those with the InterStim are located on the Sacral Nerves....Thanks again and I am sorry for happened, but totally happy that the model you have has helped you so much. Believe me this makes my day...:smile tee

[patricia1]

Thanks Cindy..I do remember.

Also with my first go around I lost a TON of weight with that one and it really stuck out, and being in my hip area made it worse. So ugly looking lol...The first set of problems (leg muscle and the nerve twitching) I fully believe are coming from those 2 leads that are not working right. I have just gotten tired of the entire ordeal. I think I was not meant to have one. I am taking my time on choosing what to do. And believe me it will be my choice and not the doctor's. At least he is not like the first nut who put my first one in. Thanks again for the support I love getting it from you guys. Especially yours and Leslie when I know you both have gotten such great results. It puts a smile on my face...Hugs:angel:

[LBUSH49]

hi Patricia , Medtronics has a good web site you might want to check it out it may be helpful for you it's MEDTRONICS.COM I had my final im plant in Feb. 2004 and have had no problems at all my battery is in the bum area also , I wish you the very best of luck , and remember what tiggar gal said it's your choice , but I know with the medtronics I had a 14 day trial period and it worked great so think about it and don't let anyone talk you into something you don't feel comfortable with ,again good luck ;LBUSH49

[asn]

Watever your decission is, do it so that you will feel better. I would love that there was no interstim problems... it is scary for me that I have 2... I hope I don't have those problems. Please let us know what you are going to do. I hope that you find the best therapy for your IC.
SENDING A BIG BIG HUG!!!!!!!!!!!!!!!!!!!
HOPE YOU FEEL BETTER!!!!!!!!!!!!!!