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Here's an email I received yesterday from an IC patient... and she gave me permission to post this here. Sadly, this is not a rare adverse event. The FDA database is FILLED with patients reporting infections, in some cases MRSA. I think it's important that patients know of the risks and what others have experienced. Jill
Dear Jill
I wanted to say how much I enjoy the video's and how they make me feel I am sitting across the desk from you receiving information and not reading some "cold" information from a book. Not that books are not a good source of education, I have read many of them and they are very helpful.
I wrote you around the middle of last year and told you I was getting bilateral interstims, one for bladder and one for pudendal nerve (bicycle) area and of course for urgency/frequency and retention. You mentioned that I stay in touch and let you know the progress. Well, here it is:
It all started out like a dream come true. For the first three months I was able to control the intensity of the stimulation and even change the area being stimulated with the programmers I received after surgery. I had my life back and my husband and I could comfortably be intimate a couple of times a week. My surgery was on May 24, 2010.
On the weekend of our 32nd anniversary; August 4th (voila!) I felt what seemed to be a wire or something popping loose from the neuromodulator on the right side. As it turned out it was a stitch that had never dissolved. I thought for a few days that perhaps it was my imagination but there was a little stinging every once in a while when I would walk long distances.
Then, I realized there was a bit of bloody fluid on my underwear where the incision was for the implant. Then it began to get warm in that area and I got a mirror to investigate and realized I had a significant infection.
I tried on three different occasions to make an appointment with the urologist who implanted the devices and he was out of the country so I finally realized I was going to have to see someone else. I made an appointment with another urologist on Tuesday for Friday. On Thursday I began running fever and had the bloody seepage on the left side as well and called the doctor who suggested I come on in. Well, to make a long story short he had to re-implant the devices (after a round of antibiotics) They were originally implanted too shallow and were trying to work themselves out!
From that point forward the devices never seemed to be as effective as before. I have changed them to every position and stimulation strength they offer and they just haven't done what they did those first couple of months.
The original urologist who implanted the first devices came back and was informed about my situation and wanted to see me (the second time since my surgery!) so I went in. He had a Medtronics rep there who tried to reprogram the stimulators, first the right side which, after 30 minutes, he had to completely turn off. We're still not sure what has happened to it and why it isn't working. He feels that perhaps something was misplaced when it was reimplanted.
Then the Medtronics guy tried to reprogram the left side and after an hour and ten minutes he finally found a setting that gave me a measure of comfort in the pudendal area. Unfortunantly that lasted two days and all the stimulation moved to the rectal area and was so painful I couldn't take it. I called the office and was told just to turn the device off.
So, here's the dilema. I have bilateral implants (model 3058 interstims) and neither of them are working. A friend had this same surgery 1 week before I did and has been opened 6 times because of problems. I am having surgery Monday the 21st (next week) to have the modulators removed.
Medtronics has tried to get me to leave them, allow them time to custom make longer leads and try this again but with my friends situation in mind and this being my third time to be opened I am calling it enough. My friend told me to ask to keep the neuromodulators since I paid $10,000 each for them. She suggested that perhaps down the road they may "tweak" the leads and I can have them implanted again.
I do want to say while they were working I literally felt I was walking around in a dream of some kind. That's how much they helped me. Not only did they help with the IC and I sure can't explain this but they helped with the IBS as well. It's very depressing to have to give up on this for now but maybe I'll have a more positive report sometime in the future. This is not something I would want printed publically because I don't want anyone hurt by it. I realize we're just still in the "learning years."
Thanks again for all you do!
I wanted to say how much I enjoy the video's and how they make me feel I am sitting across the desk from you receiving information and not reading some "cold" information from a book. Not that books are not a good source of education, I have read many of them and they are very helpful.
I wrote you around the middle of last year and told you I was getting bilateral interstims, one for bladder and one for pudendal nerve (bicycle) area and of course for urgency/frequency and retention. You mentioned that I stay in touch and let you know the progress. Well, here it is:
It all started out like a dream come true. For the first three months I was able to control the intensity of the stimulation and even change the area being stimulated with the programmers I received after surgery. I had my life back and my husband and I could comfortably be intimate a couple of times a week. My surgery was on May 24, 2010.
On the weekend of our 32nd anniversary; August 4th (voila!) I felt what seemed to be a wire or something popping loose from the neuromodulator on the right side. As it turned out it was a stitch that had never dissolved. I thought for a few days that perhaps it was my imagination but there was a little stinging every once in a while when I would walk long distances.
Then, I realized there was a bit of bloody fluid on my underwear where the incision was for the implant. Then it began to get warm in that area and I got a mirror to investigate and realized I had a significant infection.
I tried on three different occasions to make an appointment with the urologist who implanted the devices and he was out of the country so I finally realized I was going to have to see someone else. I made an appointment with another urologist on Tuesday for Friday. On Thursday I began running fever and had the bloody seepage on the left side as well and called the doctor who suggested I come on in. Well, to make a long story short he had to re-implant the devices (after a round of antibiotics) They were originally implanted too shallow and were trying to work themselves out!
From that point forward the devices never seemed to be as effective as before. I have changed them to every position and stimulation strength they offer and they just haven't done what they did those first couple of months.
The original urologist who implanted the first devices came back and was informed about my situation and wanted to see me (the second time since my surgery!) so I went in. He had a Medtronics rep there who tried to reprogram the stimulators, first the right side which, after 30 minutes, he had to completely turn off. We're still not sure what has happened to it and why it isn't working. He feels that perhaps something was misplaced when it was reimplanted.
Then the Medtronics guy tried to reprogram the left side and after an hour and ten minutes he finally found a setting that gave me a measure of comfort in the pudendal area. Unfortunantly that lasted two days and all the stimulation moved to the rectal area and was so painful I couldn't take it. I called the office and was told just to turn the device off.
So, here's the dilema. I have bilateral implants (model 3058 interstims) and neither of them are working. A friend had this same surgery 1 week before I did and has been opened 6 times because of problems. I am having surgery Monday the 21st (next week) to have the modulators removed.
Medtronics has tried to get me to leave them, allow them time to custom make longer leads and try this again but with my friends situation in mind and this being my third time to be opened I am calling it enough. My friend told me to ask to keep the neuromodulators since I paid $10,000 each for them. She suggested that perhaps down the road they may "tweak" the leads and I can have them implanted again.
I do want to say while they were working I literally felt I was walking around in a dream of some kind. That's how much they helped me. Not only did they help with the IC and I sure can't explain this but they helped with the IBS as well. It's very depressing to have to give up on this for now but maybe I'll have a more positive report sometime in the future. This is not something I would want printed publically because I don't want anyone hurt by it. I realize we're just still in the "learning years."
Thanks again for all you do!
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