Unable to Walk Normally

[KathleenS]

I have had my InterStim off since Dec. because it has never worked since the permanent implant last Aug. I have since moved to another state and have a new doc. I decided to give it another try and went for programming on 4/4. On 4/7 I began having difficultly walking, and when I awoke on 4/8 I could barely walk at all (when I tried to walk, my hip and foot were in the same plane, but my knee "popped" backward, so my thigh, knee and calf were going the opposite direction. This happened with both legs (not just the left where my InterStim is). Has this happened to anyone? I turned my unit off and after about 48 hrs, I could walk normally again. I have a call in to the new dr., but, I'm really wondering if this has happened to anyone else. I'm not sure if it's the InterStim or not. Kathleen

[KathleenS]

I want to try and explain this better. When I tried to walk, my knee would "pop" as if the muscles around my knee where not supporting my knee when I walked. My thigh, knee, and calf would be in a sort of concave position. My knees would be the opposite of what a person's knee would look like if it was slightly bent. Sorry, this is so hard to describe. And my uro has not called me back, yet.

[Teri]

Kathleen, there are so many of us, some who post and others I just talk to on the phone, who are finding "strange" happenings with regard to the device. Naturally, not a bit of this is being made public by dr's as of right now. We are usually told "oh" or "it can't be caused from the device" Well, to all of that I say BS I know what my body was like pre-implant and I know what it's like now. PROVING is another thing all together. I do see a neurologist and thank God she knows that the new symptoms that I have are caused from nerve damage and she has never denied my situation or my "new" complications.

A friend who had her surgery done just after my second one (I had to have a revision) were talking today and we have been turning our's on and off because of strange happenings. And, it dawned on me that if we leave it off, the battery will never die and right now I'm praying for my battery to die so that I will have the courage to have the dang thing taken out without causing any more damage than I already have.

So, I totally believe that what ever is going on with your leg is caused by something that happened during surgery BUT, you need to see either a Neurologist or Neurosurgeon to become more informed.

I am so sorry to hear that yet another person is paying a heavy price for trying to improve their quality of life.

Sending tons and tons of gentle hugs~

[sue041]

Hello, I have just read your posts about the interstim, I do not have one, but I have a implanted pain pump that is attached to the nerve that leads into the bladder, But this is what is so weird, a friend of mine has a pain pump also and just last week, she said she was having problems with her feet being so cold, she got up one morning and could not walk, she was taken to the hospital and they thought she had a blood clot or something after resting in bed with her feet up of course it got better on its own. Now I am wondering if something is happening to the nerves in her spine where the pain pump is attached if it is the problem like nerve damage that lead to her not being able to even stand up, she said it seemed like there was no feeling in her legs and feet. Is that what you are experienceing? She already had to have some of her spine cut out because of a infection from some sort of other device she had which was on the outside of her body connected her spine.
If it were me, no matter how angary the doctor got I would say take this out and I mean now. It seems to me they just keep on making excuses for their contraptions that malfunction or go bad.
Good Luck and do something now before you have permanent damage to your spine. Sue scream

[Teri]

Sue~I have nerve damage from either my last surgery or the one before, they were so close together that I'm not real sure. I DO want the device taken out BUT am scared to death of more damage. It's the worse place to be. According to my Neuro, the damage I have will always be there, do I want to chance more? IT scares me to death and that's why I am so vocal when a dr see's a patient for the first time and is trying to shove the interstim into them. The interstim should only be used when ALL other measures have failed.

For those of you who have known me for awhile, you do know that I had complete sucess with my original implant but after 18 months, for no apparent reason it quit working so when I went for the revision, I was expecting the same results. The device CAN be a miracle for you....you just have to look at all sides of it before having your sacral nerves screwed with.

[KathleenS]

Hi Teri and Sue,
Thank you for replying to my post.

No, it wasn't like couldn't feel my legs. I could feel them, but not control them like normal. Sue, did your friend turn off her pain pump before resting and returning to normal? I turned off the InterStim and 2 days later I could walk normally.
Soon after the programming the sensation felt "wrong." Painful and a "buzzing" feeling, I couldn't turn it up at all. I'm OK now, with it off.

Teri, I understand how scared you are about further nerve damage (not being able to walk right for 3 days scared me out of my wits!). I am so glad for you that you have found a neurologist who acknowledges what has happened. I think that will be my next step. I know I did the InterStim out of complete desparation and as a last resort, and it frightens me too when I think some IC'ers might consider it without trying everything else.

Sending some hugs back, Kathleen

[icnmgrjill]

Kathleen,

I URGE you to file this VERY UNUSUAL event with Medwatch. This is soooo important as this is the type of side effect that we really must log and report. Please the link at the top of the page... and file this immediately!

http://www.fda.gov/medwatch/report/c...r/consumer.htm

Jill

[KathleenS]

Jill, I just submitted the info. to Medwatch. Thank you for suggesting it. I don't want this to happen to anyone else. It was too scary. Kathleen

[Teri]

Kathleen~I also did my interstim out of desperation. ALL, and I do mean ALL other options had been tried and failed. That's why I get so nuts when a dr offers this for a first line of treaatments.

I am having mine taken out in the fall. I'm shooting for the fall anyways. This is not a good time for me because my husband is so busy and with my daughter starting her nursing career I just don't have anyone who could help me if this surgery goes as bad as the last one did.

I in NO way feel a failure. I feel like a person who tried everything she could and now it's time to get on with it. And, getting on with it means having it taken out of my body. For some strange reason, after being sick since it was put in me from day #1....I'm always preaching about "listen to your body" well, in my heart and my gut I really feel that my body is rejecting the foreign object and wants it OUT and my body is going to listen

huge hugs to all~

[tigger_gal]

Teri,
you can call me if you need help, if I am capable I will be there for you... even if you need to call and chat
brat

[KathleenS]

Teri,
I understand completely. I feel the same way. I had to try this after trying everything else. I am pretty sure that I'm going to get mine out soon, too.

Best wishes,
Kathleen

[icnmgrjill]

I want to publically THANK Kathleen for filing her experience with Medwatch. It is CRUCIAL that we let the authorities know when unusual events like this occur. I remain greatly concerned about some of these reports.

Jill

[Teri]

Kathleen~if I can hold out until early fall I am having mine taken out. I know in my heart I've done everything possible. I'm just not too sure emotionally I'm going to beable to wait that long Summers are way too busy for me to be recouping.

I also reported mine. I had to search my heart for a long time before making the decision. You can do it without your name publicly being used. I liked that and I think it would encourage more people to report these things. We are not reporting against our dr's or what they have or haven't done.....we are reporting on the device.

a zillion hugs to all of us fighters blink

[marg54]

I haven't been on for such a long time. Now, however, I need to vent about my Interstim. I've had the device in place for almost 2 years. About six months ago, I started having some problems. My left leg (the stim is on the left side) is going numb at intervals and instead of the device helping with the symptoms, it seems as if it is making them worse. My uro says that judging by my symptoms, he thinks that the leads have migrated into the S2 nerve instead of staying in the S1 where they belong. My toes on my left foot do weird things and I get cramps in the calf of my leg. He has tried to re-program the device several times, unsuccessfully. Now I am back on DMSO and Marcaine bladder installations every week. The pain and spasms are just about unbearable and I'm beginning to have alot of trouble emptying my bladder. He wants to go back in and switch out the lead and put in a new one but I am not sure about that. I never really thought about this device causing any type of long term nerve damage. If I had to do it over again, I definitely would have thought twice. Thanks for letting me vent! Margaret.

[Teri]

margaret~I find it so interesting that after a couple of years we are having these interstim failures. Mine did it at 18 months. Had the revision (what your dr wants to do) in Oct of 2001 and plan on having it removed in early fall.

Four years ago when we were having this surgery we knew that we would be used as test monkey's because they didn't have anything to try them on. Yes, there are some girls who after 4 years are still doing great but slowly but surly, people like you pop back on to let us know what's going on with your device.

The way the surgery is done today is no where near what we had done. My uro said he hardly even needs to use stitches...he can use a butterfly bandage on the incision cussing banghead cussing
That's great! I have a road map on my fanny after 2 surgeries.

My device is turned off and it will stay off until I have it removed. The new version is sooooooooo tempting but I am done.

sending prayers that you find a soluation to your problems