problems with the interstim

[deborah b.]

I called the doctor office this afternoon and his recepontist told me that the x-ray showed that the lead has not moved but I told her I need to talk with the doctor to find out why my feet are tingley and cramping in feet,legs, and toes. I've even been trying to talk to the rep with no response. I've been trying to talk with her the last 3 days and is not returning my phone calls. I'm really getting fegrastered with the doctor and the rep. <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

[Teri]

deborah~I had this problem with my first surgery. I had the whole thing done over last October. I see that you live in Ohio....are you far from Michigan?

[deborah b.]

Chady I do talk to medtronic, and I have had since I've had the insterstim in. Teri, I live in Steubenville OH Just 3 hours south of Cleveland. Did you lead moved? or why did you have your's redone?

[Teri]

I had my first surgery done in Oct 99 and even tho I was always getting the toe and foot sensation from the start my device DID work and it worked GREAT!!!! I was peeing 5 or 6 times a day, going to hockey games, the show, things that I never thought I'd beable to do again. Then, after 1 1/2 years the sensation started going up my calf and moved into my first 3 toes and the device stopped working, no real medical reason. The logical reason was that the implant is sending the proper message to the brain and my brian said 'screw you' to the implant, 'i'm gona do it my way'......so, after being blown off by the uro who did my first surgery I had the next one done last October. I have the chance of the same thing happening again but I figure I'll take my chances.

My dr is In Bloomfield, MI and he is cleaning up alot of messes being dropped by other dr's and that's why I was wondering where you live....if you would like me to hook you up with his # just toss me a pm and I would be glad to give it to you....if he can't help, maybe he can direct you to a uro who is closer to you that can.

tons and tons of hugs~

[yvette]

I had the same thing happen too. My toes on my left foot kept curling up with each cycle. Not so bad during the day, but trying to sleep at night .....yeesh!

Anyways, I have to pester my rep too sometimes. You can do what I do...I pester every hour on the hour...nicely, politely...but every hour just the same.

Finally I got an adjust ment I could deal with(for now anyways).

good luck!
y. [img]smile.gif[/img]

[deborah b.]

I've called the doctor twice today with no response yet from him. But I did get a call from the rep this morning. Did not get any help from her and I really think she nows what is going on but refuse to help me with the problem. When I told her that I been talk with other people that are having some problems. She just told me that they don't know what they are saying. So I am getting really upset and discourge with her and the Doctor. I don't know what to do. I talk with my friend in Flordia that is a Urologost and told me to go ahead I see the other doctor in Pittsburgh. I have a apt in two weeks with him. What do I do with the other doctor just keeping calling him till he returns my phone call. <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

[deborah b.]

I finally heard from the doctor this evening and he thinks that the lead has curled up but I've got to go and get another x-ray done on Monday. so that means another revsion to do.

[deborah b.]

Chady this would be my 2 revision done. I won't find out till next week when he gets the other x-ray to make sure that is the problems.

[chady]

deborah b,
I really feel for you as I had over 8 surgeries till I finally had the last one to remove the interstim forever. Is it helping you in others ways that keeps you from just having it out? We have talked alot about your problems with feet and all when you email me. You have never said what benefits from all of this you are getting.
I wish you the best with this.
Hope the other in the neck you are dealing with is better also.
Please take care,
Chady

[deborah b.]

Chady, was going up to 50 times a day before the implant and its helping about 50% now. I hope you are doing okay. I will post tommorrow after I talk to the doctor again to verify if the lead has moved.

[chady]

Please do let me know what is decided to do for you Deborah.....and how in the world did you change the topic back to this one....I had just posted on the FDA information from around the nation on interstim damage and that it is into the hundreds to say the least. Tell me how you are able to switch back to a topic of before or of long ago because I also noticed that someone had move the one when I went for my removal back a couple days ago. That is interesting.
Everyone needs to check with the FDA personally on interstim damage if they want to know because the injuries number into the hundreds...there are dozen injured women in Denver alone and several in my state...several in Michigan all over the nation..teh FDA will send you reports on this for anyone that wants proof or to read just how severe or minor some may be. I do not know why the FDA MAUDE database is registering only 18 as the numbers go way higher. That is a concern as people will be misguided into thinking that Medtronic only has a handful of people with injuries.
Chady