Private Support Chat For People With Stim Problems

[graceimnot2096]

I had my interstim installed in 2003, then relocated in 2005. Everything was ok, except for the placement. When I had it moved is when all the trouble began. It got infected and I bled out really bad. Since then it has felt like a sliver under my skin, and I've developed a problem with my immune system and have to get antibody infusions every month. The doc says one doesn't have anything to do with the other, but my whole life changed from that. I can't go out because I have to worry about germs and getting sick. I've gained well over 80 lbs. You already know what the extra stress does for ic. I've wondered if maybe the battery leaked and caused all of this but every time I ask my uro about it he says there is nothing to leak, I really wonder if he is just covering his butt. Have any of you had this expierence, or do you know if there is some kind of battery fluid that could leak.

Last month my interstim died and I'll be getting a new one on April 4. The last month has been hell without it. It has been hard to keep ahead of the pain without it and my frequency has gotten to every 10 min, I'm up all night. Please say a little prayer for me that this time there won't be any problems.
Love and Prayers to all!!!

[Rebecca A]

I have also had my Interstim replaced. Now I have pain not only at my unit and lead but also still have pain at the sight where he took the 1st one out. My doctor acts like he does not know what to do for me and that I am the only pt that he has that has had this problem. I really do not know what to do next. The Interstim does help me control some of my OAB, without it I can not even get away from my house. I do not know what to do next. Glad to hear that someone else is like me.
Becca

[capricorngirl]

Originally Posted by Rebecca A

I have also had my Interstim replaced. Now I have pain not only at my unit and lead but also still have pain at the sight where he took the 1st one out. My doctor acts like he does not know what to do for me and that I am the only pt that he has that has had this problem. I really do not know what to do next. The Interstim does help me control some of my OAB, without it I can not even get away from my house. I do not know what to do next. Glad to hear that someone else is like me.
Becca

My doctor is the same way, she acts like she does not know what to do next, I have had my interstim for 6 yrs now and it has now gotton to the point where it is more of a hassel than it is worth. Even with the unit on I am still using the bathroom on average of 30 times per day. So for me, I have decided that it is not beneficial for me any longer. I have had it replaced, re-adjusted, etc. Even after all that I am still having problems. You can push on the lead wires and it sends a small shock feeling up to the middle of my spine. The unit moves around (which it is not supposed to do) and causes pain when sitting, driving, etc. You can touch the box and feel it move with little pressure then the area touched is sensitive and sore for most of the day. I have decided to have my unit removed and move on. I am tired of dealing with it and I have to drive 2.5 hrs just to see a doctor that can do anything with my unit. Its just not worth it any longer. I hope that you have better luck than I have had. I may be that I have just had it so long that it is just not benefical for me any longer. I dont know, my doctor acts like I am the only person that has had this much trouble and sometimes makes me feel like I am crazy. I am done with the whole mess I will move on and try other forms of treatment. I am currently doing bladder installs 2x per day every day. I have just started and am hoping that it will help. It sucks. This disease is so disabeling sometimes its hard to stay hopeful.

[mlzippy7]

So sorry to hear this! You are not alone though that is for sure!
I hope the instills help you!

Originally Posted by capricorngirl

My doctor is the same way, she acts like she does not know what to do next, I have had my interstim for 6 yrs now and it has now gotton to the point where it is more of a hassel than it is worth. Even with the unit on I am still using the bathroom on average of 30 times per day. So for me, I have decided that it is not beneficial for me any longer. I have had it replaced, re-adjusted, etc. Even after all that I am still having problems. You can push on the lead wires and it sends a small shock feeling up to the middle of my spine. The unit moves around (which it is not supposed to do) and causes pain when sitting, driving, etc. You can touch the box and feel it move with little pressure then the area touched is sensitive and sore for most of the day. I have decided to have my unit removed and move on. I am tired of dealing with it and I have to drive 2.5 hrs just to see a doctor that can do anything with my unit. Its just not worth it any longer. I hope that you have better luck than I have had. I may be that I have just had it so long that it is just not benefical for me any longer. I dont know, my doctor acts like I am the only person that has had this much trouble and sometimes makes me feel like I am crazy. I am done with the whole mess I will move on and try other forms of treatment. I am currently doing bladder installs 2x per day every day. I have just started and am hoping that it will help. It sucks. This disease is so disabeling sometimes its hard to stay hopeful.

[Rebecca A]

Originally Posted by graceimnot2096

I had my interstim installed in 2003, then relocated in 2005. Everything was ok, except for the placement. When I had it moved is when all the trouble began. It got infected and I bled out really bad. Since then it has felt like a sliver under my skin, and I've developed a problem with my immune system and have to get antibody infusions every month. The doc says one doesn't have anything to do with the other, but my whole life changed from that. I can't go out because I have to worry about germs and getting sick. I've gained well over 80 lbs. You already know what the extra stress does for ic. I've wondered if maybe the battery leaked and caused all of this but every time I ask my uro about it he says there is nothing to leak, I really wonder if he is just covering his butt. Have any of you had this expierence, or do you know if there is some kind of battery fluid that could leak.

Last month my interstim died and I'll be getting a new one on April 4. The last month has been hell without it. It has been hard to keep ahead of the pain without it and my frequency has gotten to every 10 min, I'm up all night. Please say a little prayer for me that this time there won't be any problems.
Love and Prayers to all!!!

I'm so sorry to hear about all of the problems you have had. I will be praying for you.
Love, Rebecca

[Rebecca A]

Originally Posted by capricorngirl

My doctor is the same way, she acts like she does not know what to do next, I have had my interstim for 6 yrs now and it has now gotton to the point where it is more of a hassel than it is worth. Even with the unit on I am still using the bathroom on average of 30 times per day. So for me, I have decided that it is not beneficial for me any longer. I have had it replaced, re-adjusted, etc. Even after all that I am still having problems. You can push on the lead wires and it sends a small shock feeling up to the middle of my spine. The unit moves around (which it is not supposed to do) and causes pain when sitting, driving, etc. You can touch the box and feel it move with little pressure then the area touched is sensitive and sore for most of the day. I have decided to have my unit removed and move on. I am tired of dealing with it and I have to drive 2.5 hrs just to see a doctor that can do anything with my unit. Its just not worth it any longer. I hope that you have better luck than I have had. I may be that I have just had it so long that it is just not benefical for me any longer. I dont know, my doctor acts like I am the only person that has had this much trouble and sometimes makes me feel like I am crazy. I am done with the whole mess I will move on and try other forms of treatment. I am currently doing bladder installs 2x per day every day. I have just started and am hoping that it will help. It sucks. This disease is so disabeling sometimes its hard to stay hopeful.

I am really glad to hear from you. You sounds just exactly like me. Almost identical. So this doctors dont know everything. It is not just in our head and we are not crazy. I will keep you in my prayer.
Love,
Rebecca

[SharonA]

Today, 01:42 AM #26
barb 1
ICN Member

Join Date: May 2008
Posts: 3

Smile
Quote:
Originally Posted by barb 1 View Post
Dear All,

I would be very interested in hearing from anyone who has experienced any complications with their implant.

My first implant in 2001 was a great success and everything worked out until I had the misfortune to be given diathermy after a wrist surgery.

he device then malfunctioned and I have had terrible problems ever since.

I was not told about diathermy until after the fact, in the olld book from Medtronic there was no warning.

Medtronic sent one of their nurses to assess the device, took the printed report away with them for their tech's to look at and they said they would get back to me.

Of course the hospital records have dissappeared and Medtronic never did get back to me.

Now I have read a lot of imformation on the internet, especially about others who have suffered from problems with this device.

I also learned that the FDA did not approve the leads until after I had my surgery.

I was never warned or told by anyone including the surgeon of any dangers involved with this device.

A year after Medtronic did their tests I was given a new battery, this was May 2007, the device was never reset after this surgery, the box with the hand control was thrown on the hospital bed and I was told to start it when I got on the plane to go home!

On May 6th this year I had a complete new device put in and it seemed to be working but not the way the original did!

It has been a horrific fight since 1996 to this day, I have had to fight every inch of the way for my medical and now have had to fight just to get the 6 week follow up after surgery!

It felt like the surgeon was trying to get rid of me.

After the diathermy there was no feeling, my first toe on the left foot twitched all day and all night, the whole foot became so swollen from , I assume, rubbing on my feet at work and then walking with it at work!

The chronic cramps in the calf were also another mystery.

Prior to the surgery in May 07 to put in the new battery I did tell the surgeon about the foot, this was ignored but the twitching did stop after the surgery.

The chronic cramps in the calves have not.

I did not know that any of this could be related to the device until I read an article from the Beaumont Hospitals in the States that this could be so.

Medtronic will not answer my questions, they give all kinds of excuses, the surgeon certainly will not say anything.

I have finally been given permission to return for my six week check up and am taking my daughter with me to this visit.

After the surgery on May 6th. 2008 when I was in recovery on the ward the doctor stated that he had left the old wires behind as it would take major surgery to revoe them and he did not want to do this.

[i], of course, did not hear any of this as I was too out of it.

The next day the surgeon came back with an assistant and they started the new device.

He later came back and told me that he wanted to see me in six weeks and again in six months.

He told me that he had clipped the old wires and that they were "curled up"!

I was still too out of it to ask questions even though I wanted to but was not worried as I would be coming back for my check up.

Yet when I telephoned his secretary to book the follow up appointment she told me that I was not supposed to get the discharge package and that I was not allowed to come back for the follow up six week check up.

I was told by the surgeon that the Ministry had told him that I could get the programing done at the local hospital that had butchered my body in 1996, that I was not allowed to go back to him.

I told him that I would never go back to a hospital that could so butcher a patient. All I went in for was a simple bladder repair, came out with a hysterectomy and found out five years later, quite by mistake that they had also taken the ovaries and tubes! (they just forgot to put in on the surgery report)!

After the surgery I could never pee on my own again, I had no bowel control and a couple of months after surgery the back wall of the vagina fell out and I then was told that I had a rectocele!

This meant I had to put my hand in the vagina, push the stools up and back into the rectum to pass them

Fortunately I had a really good surgeon who stitched me back together but he could not fix the damage.

After watching a television show on another set of horror stories I informed our Minister of Health and I was sent to TO for the implant.

From the time the twitching started in the toe to the cramps I have had terrible problems with my legs and knees and have not been able to work since last November.

My worst thought is that it could be nerve damage.

I have talked to Medtronic until I am blue in the face from the top guy down.

The surgeon will be the next challenge.

I had a very serious conversation with Health Canada and was told they had never heard of any problems, but they gave me a telephone number to contact to report my complaint.

They also said that they could help me get a copy of the report that Medtronic refused to give me.

They said that they will investigate!

It leaves me feeling traumatised thinking that something is horribly wrong.

What would the terrible results be if the leads were removed and what will happen is they are left behind!

I would not feel like this if only I could get answers from anyone.

It made me feel so much better to read that I was not alone.

I just want my device to work again.

I do not wanty to wear a leg back and have a colostomy for the rest of my life!

If there is anyone there with any imformation I would really love to hear from them

Thank you

Barb 1
I have great faith that all will be well and great friends to support me
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[keptwoman5]

Hello,
I am kind of new to this forum so please bare with me. I had the implant 6/25/08 and I am already having problems. I have pain when I sit like a hot poker is on my left butt cheek, it then runs down my left leg and back up. It hurts really bad if I do anything that requires bending over. I know I have pain with IC and now pain with interstim. I cut it off for 4 days to see if the pain would stop and it has not............ I called the rep from Medtronics (THE ONE THAT CALLED ME EVERYDAY WHILE I WAS DOING THE TEST STIMULATION) and left her a message about my problems. She never called me back. I called her the next day and told her that this was the second message and would like to here from her today. She called and said she erased my orignial message from the day before and thats why she didn't return my call. Anyway, her answer was that since the device was off and I was still having pain it must be coming from something else, I explained to her that it was the same pain that I have had all along since the implant. This pain is worse than the IC. It's keeping me up at night and its even worse during the day. I called and made an appointment with my uro for Monday. When I went in for my 2 week check up after surgery I told him about the pain and he responded that it was a side effect of the intersim and I should call my rep. So, I hope its not going to be a ping-pong battle between him and the medtronics rep. Any advice would be greatly appreciated... do I put up with the pain or should it be removed ???????????????? Its only been a little over a month and it is so discouraging already......Thanks for your time,
Alma

[mlzippy7]

I am so sorry you are having so much pain!!
NO you should not have to put up with the pain!!!
Is the Interstim helping your frequency??
If it continues to cause pain your doctor and you will
have to decide if you need to remove it.
Is it warm to the touch or do you have a bulge like where the implant is??
There could be a couple things going on that I had with number 1.
Good luck with things!!

[keptwoman5]

Its me again,
When I first left the hospital, the rep set it for 1.8 which I was still in recovery and groggy. The first couple of days were fine and then I had to start lowering the stimulation because I couldn't even sit down. I ended up on 0.8 with 8 secs on and 8secs off. I still got no releif. Yes, while the intersim was cut on, I could put my hands on it and it would be warm even through my clothes. I now still have it off until tomorrow and it does not feel warm . I want to see what my doc has to say... yes I did get some relief from the frequency . Of course since its been off the symtoms are much worse. If you have any questions for me to ask my doctor, please let me know. I am looking for answers because any bending of any kind sets my butt cheek and leg on fire........
Thanks again for all your support
Alma

[Rebecca A]

Originally Posted by keptwoman5

Hello,
I am kind of new to this forum so please bare with me. I had the implant 6/25/08 and I am already having problems. I have pain when I sit like a hot poker is on my left butt cheek, it then runs down my left leg and back up. It hurts really bad if I do anything that requires bending over. I know I have pain with IC and now pain with interstim. I cut it off for 4 days to see if the pain would stop and it has not............ I called the rep from Medtronics (THE ONE THAT CALLED ME EVERYDAY WHILE I WAS DOING THE TEST STIMULATION) and left her a message about my problems. She never called me back. I called her the next day and told her that this was the second message and would like to here from her today. She called and said she erased my orignial message from the day before and thats why she didn't return my call. Anyway, her answer was that since the device was off and I was still having pain it must be coming from something else, I explained to her that it was the same pain that I have had all along since the implant. This pain is worse than the IC. It's keeping me up at night and its even worse during the day. I called and made an appointment with my uro for Monday. When I went in for my 2 week check up after surgery I told him about the pain and he responded that it was a side effect of the intersim and I should call my rep. So, I hope its not going to be a ping-pong battle between him and the medtronics rep. Any advice would be greatly appreciated... do I put up with the pain or should it be removed ???????????????? Its only been a little over a month and it is so discouraging already......Thanks for your time,
Alma

Alma,
I am really sorry to here that you are having the same problems that I did. The difference with me was I did damage my interstem when I fell down my steps. I had to have it replace in Feb of '07. I am now seeing a pain management doctor because my ur said my problem was not from my interstem. I have disk degeneration and damaged nerves "because of the fall" he says. I still believe that my nerve damage was caused by the interstem because I was having the same problems that you are before I fell. I am still having the alot of pain in my hip and down my leg. I hope maybe he can help me with some of the pain. I will let you know what happens. Keep in touch. You are in my thoughts and prayers.
Becca

[keptwoman5]

Thanks for your support ! I go back today and will let you know what he says. My prayers are with you also,
Alma

[keptwoman5]

Went to see my urologist today, whom I really do like a lot. He remembered that I was complaining of pain down my leg after the two week check up. I went on to explain about turning the unit off and I am still in pain. At first he thought that I might have a pinched nerve and needed to see a nerologist. He wanted to know if I could lift my leg, which I could with no problem. It all has to do with bending over and the pain never goes away. He wants to wait 3 weeks and for me to take advil every four hours for inflamation . If I am still in pain he will take it out. Our concern is if he removes it and I am still having pain than it would be for nothing....... but trust me I did not have this pain until the implant was put in. I just hope there is no nerve damage.. of course he has never heard of this before either but he does have compassion. We are taking our grandchildren on vacation tomorrow and I hope this will get better he also stated that the nerve that the lead is near is the S1 and where my pain is, is theS-3. Any comments or suggestions are welcomed
Alma

[snik4]

I would not recomend interstim therapy. I
had it put in and then removed and then put in again. The device malfunctioned and caused so much pain.The second time was even worse. I couldnt sleep on it and it constantly bothered me. I finally had it removed and will never try again. the surgery itself is much worse than they tell you and recovery is longer than they say. Please only use it as a last resort and try everything else before you have the surgery.

[Busy Faith]

I did the trial in Feb 2004 and it was awesome. Decided to have the permanent surgery done in March. The 1st placement was horrible and stung my backside. I got pneumonia and spent a week in the hospital. During surgery the tape they placed on my back I was allergic too and ended up with welts and puss that the nurses pulled off and moved the leads.
So, April went in and had the leads fixed and even in operating room they were not right. I had what I call a 9 volt battery jolt in my bottom which the doc said would get better. Got pneumonia again spending another week in the hospital.
After my release, went to doc cause I had wet coming from the leads. It was spinal cord fluid. He said lets give it 48 hours and then see what its like. After the 48 hours the fluid was still leaking and had to go in for emergency surgery to close it. I was crying and begged him to take it all out. He said we should keep the battery in so we can do this again. I said no! I had 4 months and nothing good came of it. I won the battle and he took out the leads and the battery. I was in the hospital 3 days thinking I was going home to freedom but again I go pneumonia and another week in the hospital.
Its 2 years later and I still have problems with my back they opened up 4 times in 4 months. I am seeing a new doc and having hydro done tomorrow. I am terrified. Sometimes I wish the docs had IC so they could feel the pain.

Thanks for listening.

4 months +
4 surgeries +
3 pneumonia hospitalization =

Living hell