My lead has moved!!!!

[Kara23]

Well, it's not all in my head!!!!!
I saw my uro today and it has been confirmed that my lead has moved ever so slightly which may explain some of my trouble. He says it moved just a bit but it's not huge but he'd like to see it moved back to the right place. It's an outpatient procedure that will only take a few minutes. I've done way too much on my own and I'm sure that is why it has moved. I have done a lot of unnecessary lifting that I should be having my husband do but I am too impatient...........
Anyway, my doctor wants me to try taking Neurontin for my pain and then if things don't improve, he will have the Medtronic Rep come out and readjust me to see if we can't capture the lost space from the movement. Sometimes they can elongate the stimulation and don't have to move the lead back at all. Then if that fails, he will move the lead back to it's original spot.


Thank for listening!!!


Kara

[dedeash]

Kara
What exactly are they gonna do in outpatient for you? I have had my surgery revised 3 times, and it was outpatient one time, but pretty close to a normal surgery. They had to make incisions....
I also wondered if he will wake you up during the procedure to test what you feel?? Would like to hear more about it when you have time...also when do they plan to do it?

Dede

[Kara23]

He plans on having me get adjsuted one more time to see if that helps. Then it will be after that probably a few months from now. He said it will take 10-15 minutes to do. They will use a wire to push the lead back into place. He says I will not be put to sleep for it. I'm not happy about that though. I wish I could just tell them to fix it regardless of an adjustmet but that is not my call. So, I have to sit here and suffer until they get their acts togehter literally. The adjustment will occur next Friday the 18th. Then if I am still having trouble I have to call my Doctor to schedule the outpatient surgery.

Kara

[KimS]

Dede, and Kara, My urologist has suggested that I try the Intestim, and I'm afraid too. I have heard more negative then positive expierences with this devise. I would like to hear how your surgey went, and would you recommend it. I'm curious about the pain while in surgery, most have said it is almost unbareable. I go to my urologist tomorrow to make my appointment for the surgery, and I'm starting to have second thoughts now about hearing everyones horrible expierences. Please help me make a decision. Thanks Kim

[Kara23]

Kim,

I would definetely encourage having the Interstim done based on my own experience. I have had it for almost a year. It helps tremendoulsy with the urgency and frequency. I can go 2-6 hours with out the horrible urge. I would do the surgery all over again!!!!!!!!!! I have a GREAT surgeion. I had hardly no pain at all after my surgery, I would say about 2 weeks after ther surgery I was doing well as far as pain goes. Unfortunately my lead has moved which is common to happen. To move the lead back is not a huge surgery all over again. Interstim is great for my IC, unfortunately I have retention which is a separate disorder from IC. The retention has been causing a lot of problems for me and we are woking on controlling it with the Interstim but it will take some time. The Interstim is a highly controversial subject here but in the medical world, as I have talked with my doctor, it's a fairly easy procedure and it's not as scary as people make it out to be. Also remember Kim, that most of the people whom are doing well with their Intestims don't post on these boards becuase they are not needing to. You are seeing some of the worst cases here!!!!!!!! It's important to know that there are many people that do succeed with this device. But it's also important to have a GOOD DOC!!!!!!!!!!!!! Just because my lead moved does not mean that my doctor is bad or that the Interstim has failed completley for me. I'm fully confident to have the lead moved and if I have to have a complete revison, I'm ready!!

If you want to call and chat about this, let me know and I will email you my phone number.


Kara

[Jee]

I want to respond to your last response. You THINK that these people are THE WORST CASES, I beg to pardon you regarding that statement. I read about all those bad things and asked my dr and he told me that same thing, these are just the people who are upset, not the ones that are doing good. And he told me they were all lies and wala! All that was said came true for me. And that was just the trial! Maybe ICA should recruit some people it has done good for and have them post, if they really exist. I am sorry for my negative attitude, but everything I have read from these people ring very, very true to my experience, and I can just imagine what would happen if I went through the actual implant. I think this Interstim is a big money making market! And we are the people they are making money off of! Keep in mind, just my opinion.

[yvette]

TO JEE: There is a nerve stimulation Success board here at ICN. On that board you can read about people who are really responding well with Interstim.

And its true, many people who are doing well with their Interstim and IC don't post. I know a few who never post any more...

I have Interstim and never regretted having the surgery. Even tho the road may be bumpy at times, I am so glad I have this thing. I attribute my success with it to so many things: my research, my doctors, my choice of doctors, the city it was performed in, my mental and physical well being. And there are days I have where I say "*** am I doing!?!?!?" But those days pass....

As far as your Doctor is concerned, I really don't think its fair that he's calling all of us a bunch of whine-bags. He doesn't know, prolly will never know and maybe doesn't even care to know what we [ICers] all go through.

And finally, this why we come here, to vent, spew and utter every complaint, worry and question we have---we can come here and be accepted, an not be told we're all a bunch of headcases...Just hang in there Interstim is not for everyone. Maybe you need a different treatment, maybe we can help with our experiences...

Best wishes,
y. [img]smile.gif[/img]

[rhonda]

Unfortunatly I have not had much success with my Interstim. I have had 4 revisions so far and I am afraid that they will be doing another.
My question is What causes the leads to move.
When I originally had the implant it seem to work wonder but that only lasted about 3 months.
I am so discouraged ! I have had 7 surgeries in less than two years (4 of which involved the Interstim) What is a person to do. My body does not even have time to heal before I am back in there.
I am looking for advise - should I just have them remove this or should I just keep trying to get it work.
I am hopeless at this point of it every benefiting me.

[Teri]

When I had my original surgery in 10/99 I was in my glory! A whole new world opened up to me and for the first time in my life the bathroom wasn't the first thing on my mind. I was even able to go to hockey games....I was sooooooooooo geeked. Then, for some reason, the device just quit working. There was no medical reason to be found, it just quit working. From the first minute they turned the device on I had a strong sensation in my toe. That sensation eventually moved to my first 3 toes and my calf and that was when I suspected that it wasn't working anymore. We tried to get it going again but after having the miracle in my life for almost 1 1/2 years I was faced with a decision.....do I want to try this again or do I want to say screw it and have it taken out.
Well, I went thru the 'staged' trial. It was a total flop. I had no results at all. BUT, since I already had the device in me, we decided to go ahead and do the surgery (using the other side) and that was done this past October. So far, I am not seeing any results. And, I am very discouraged. I know first had what a miracle this device can be. Now I'm learning first hand what a heart break this can be. NO, I'm not some whimp or whinney female. I have been thru the mill with surgeries and medical problems. The da*n thing just isn't working. Infact, I turned it off on Monday and will leave it off until I have another adjustment done this Monday.
I guess that I am glad that I am giving it another try but I KNOW that either this is going to work, or I will have it removed. I can not and will not put myself thru this emotionally for the rest of my life.
There are many girls who used to post who had great sucess with their implants. I do wish that they would pop in once in awhile to let us know how they are doing. There are a couple of girls that I talk to on the phone who have had great sucess with their implants........so there ARE sucess stories out there.
What people have to remember is this device has NOT been approved for IC. This should only be considered after all other treatments have been tried. It should be a last course treatment, not an 'easy fix'.

[rhonda]

Terri,
I have had almost the same experience.
My right foot, toes, and calf muscle cramp up so bad at times. I mean if I move the wrong way or sit wrong, lay a certain way it just goes crazy.
I keep telling the doctor that something is just not right, and on top of that I do not get any relief for the Interstim ( not anymore)
And I have had 3 revisions, and so my adjustments.
I just turned it off. I do not know how to make him understand that this driving me crazy.
I love my doctor and I know that he is concerned but I just do not know what to do.

[Ruth N]

I am an interstim success-almost 3 years now. I don't post much recently because of other medical problems, but also because I am tired of getting flack for being a success and being ignored when I post about the protocols needing to be followed in order to enhance success. If you go far enough back in the archives you will find my posts. I just have too much else I am dealing with physically to constantly rewrite what no one wants to here.

Interstim is not for pain. As for frequency,mine is cut in half and I sleep through the night. I am working again and bladder wise I have my life back. Interstim is not for everyone but I get tired of bad doctors and unrealistic medical and non-medical folks doing implants the wrong way and without a successful trial. It poisons attitudes about a device that helps many. My doctor has not changed the way he does things and he has not had anyone unhappy with the outcome. But he follows the protocol.
And yes, even the best surgeons don't have 0 complication rates. Surgery has risks. If you don't want to try theinterstim then don't.

I understand all the anger and fear, but I just don't have the energy to constantly post to contradict it.

I wish you well. Ruth

[Maureen]

Rhonda,
I hear your frustration. I often get that extra pain surging after moving certain ways. My doctor told me that it happens because the lead moves slightly and gets a little too close to the nerve. I turn mine off for a few hours and when I turn it back on (the lead must move back) and things are back to normal again or at least until the next time. I have noticed over time that this is happening less and less (I have had my interstim about 1 1/2 years).
Maybe this idea of the lead becoming too close to the nerve could spark some conversation with your doctor and if this is possible in your case.
Is your pain always there or is it like mine that it comes and goes?

[Jee]

Dear Ruth:
I am sorry that you feel that you do not have the time or energy to encourage others out here with your story constantly. You hear all of these replies begging for some kind of encouragement, myself included. I don't recall anyone badgering someone for being successful, I know myself I have felt jealous but I don't recall anyone giving someone a hard time because something worked. As far as I can tell, we are all in this together, whether good or bad. And I am making a solemn promise that if I find something that works for me I will post at least once every month to let everyone know and I will try to help others. I think its important that we stick together whether good or bad, and that is my opinion.

[rhonda]

Ruth
I love hearing success stories and hope that one day I can too post a success story about my Interstim, but right now I cannot.
My post was just to ask advice.
There is something that either me or my doctor is doing wrong. I know this will work as it did in the beginning but for the last 9 months it has been a nightmare.
I will go back and read your post on the success of your interstim.
In the mean time share your advice.

Have a good day, and remember if you have had good results I want to hear them. REALLY !!

[Ruth N]

Jee,
Perhaps I need to clarify a few things. First,you misunderstand me if you think I don't care about others. I have posted many times in the past because I do care BUT I also have major health problems that I wrestle with. Somehow the way you seem to interpret my response makes me seem shallow and self-centered and that hurts. I am not, and those who have known me on this board for many years know that. I don't feel a great need to prove that or convince you. But please understand that it is hard to muster the little energy I have to post when my posts get ignored or worse.

People have objected to posting about successes in the past-thus the success boards were created and yet people with problems raise concerns on the other interstim boards and ask to hear from the successes and we end up posting in the "wrong" place.

Of course I see people begging for encouragement. I have been on these boards for 3 years and I continue to offer it whenever I can.

. But actually I have taken the most flack from people that I discouraged from trying theinterstim-either because they wanted it for pain, or because their doctors were not following th protocol. They were angry when caution was urged and it killed me, not becuase of the flack but because they did end up making a big mistake- and suffered more physical and emotional pain dealing with surgeries that were not helpful, and I could do nothing to convince them to protect themselves from harm.

I still don't feel I am being clear (it has not been a good week for me, I am sorry.)I really don't know anymore how successes can be helpful because each success is the result of a coming together of the right symptoms, the right surgeon, the right protocol and more than a little bit of luck. My success does not guarantee another's success anymore than one person's poor experience guarantees that the next person's interstim experience will be a bad one. each potential interstim patient needs to approach the interstim in a very rational and methodical way-not just out of desperation or misinformation.

Whereas I have had success with interstim believe me I still know what it is like to live with pain, exhaustion, no answers from the medical community, fears about the future, etc. So please don't be so quick to judge others or make assumptions. We all walk in different mocassins.

If I didn't care I wouldn't be here. You seem way to quick to make assumptions about me and frankly that hurts alot. I have been here for others and the fact that I responded to this thread initially was because there was a plea to hear from the successes.

But I do get tired of posting the same thing over and over again. That's not self-centeredness, it is a medical fact for me
But maybe one of the board managers could find a way to compile some of the past posts of others so it can be more easily referred back to when new folks come on board.

Wishing everyone well. Ruth