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My Story
I decided to dig out this old post that was a response to a question on Interstim back in Augustso that it is more accessible and easier to find for those of you who are interestednow or in the future.
I thought long and hard before deciding to actually post my success story on these boards because so
many people have had bad experiences.I don't want someone to hear my story and blithely go forward
with the interstim procedure and be harmed. There are always risks with new procedures and devices and
anyone considering this must really understand that and go in with eyes wide open. But beyond that
clearly there are good surgeons and bad surgeons, honest ones and dishonest ones,etc. They do things
differently. Some follow the protocols and some don't.
I have no control over that. I can only tell my story. But honestly at this point the only people I feel
comfortable encouraging are people who go to my doctor. Not because he is the only good doctor but
because he is the only good interstim doctor I know ( not that I personally know any bad ones).
One thing I feel very strongly about is the proper way to have the test stimulation. NEVER EVER go with a
staged trial unless there is a super dan reason to do so (and even then, get a second opinion first). Yes,
with the older version of the test stim the wire can move, but many of us have had successful trials the
old fashioned way. In adddition if the posts on the Challenge Boards are any indication implanted leads
sure seem to move too.
Also, if you look carefully at all the posts over time you will discover that removing an implanted wire is
alot harder and potentially damaging and painful than removing the test stim wire that is not sewed in.
Why would you want to do that when there is a simpler and safer alternative? I have had my implant for
over 3 years now. recently I asked my doc if he now does the staged implant. He does not for the above
reasonas and many others. But this doc has always followed the protocols and put his patients welfare
first and foremost.
Finally the Interstim IS NOT FOR PAIN, no matter what anyone else tells you.
I apologize for this lengthy intro but it is the only way I feel comfortable posting my success story...so
here goes.
Whereas with hindsite I probably always peed more often than most I never thought much about it until it
really got out of hand. I was peeing as often as every half hour by day and 4-6 times at night. I always
felt like I had to pee, even when I had just gotten off of the toilet. I had some mild pain and discomfort
but mostly I was exhausted. I already had rheumatological problems and the lack of sleep just made me
sicker. I couldn't work anymore,etc.
None of the usual IC treatments work, nor did biofeedback and electrical stimulation(which by the way is
also supposed to be tried and fail before considering the interstim.
Then my doctor offered me the chance to have a test stimulation. He was just learning the interstim
procedure and in fact I was one of his very first interstim patients. I thought long and hard about being a
guinea pig for the technology and the doctor. But I checked the doctor out and other doctors and
surgeons attested to his surgical skills. He was not a new doctor, just new to the procedure.He was being
trained by an IC expert, Dr. Whitmore. In fact she was present at my test stim. I can't explain why I felt
comfortable going ahead but I did.
The day of the test stim came. I drove to the office myself( I was told I could) and was fully able to drive
myself back home after. yes, there were a few moments of brief intense pain as the needle was being
placed near the nerve repeatedly until the correct spot/responses were found. But that was it. My back
was a little sore or stiff but at no time did I require any medicine.
During the trial I avoided bending from the waist or getting it wet. I had 1 test wire on each side and I
tried one for a few days and then turned that one off and turned the other one on. One side definitely
worked better than the other. It cut my frequency in half and let me sleep 5 hrs straight at night. The
other wire stim did not feel like it was in the right place and didn't do much. Oh, the wire that worked did
slip a little after 2 days but I had clear objective proof (voiding logs) that it worked before it started to
slop.
I went back to the doctor and all he did was tug on the wire and pull it out. Real quick and did not hurt at
all. No surgery. No incisions.
then the hard part came. I had seen and experienced relief and had to wait months for insurance to
approve what at that time had just come off the experimental list. I think it is much easier to get the
approvals now.
Finally, April 26,1999 I had the interstim implanted. As surgeries go (and I have had many) I found it pretty
easy. I only took pain meds (toradol) for 2 days, and honestly if I hadn't had my period and menstrual
cramps I don't think I would have needed the meds on the second day. Don't get me wrong, my back was
sore and I was tired from the surgery, ansthesia etc but it was much better than I expected. For me the
worst part was how sick to my stomach I got from the anesthesia. Between that and the IV fluids and my
constant need to pee (my interstim was not on yet) I had a horrible first night with little sleep-but little
pain. The next A.M. I was still sick to my stomach so I stayed a second night. My doc decided to turn on
the interstim very very low since it was so soon in hopes that it would work a little and let me sleep. It
did. Not a dramatic improvement but enough to get a few hours at a time. I went home the next morning.
I had numerous adjustments over the next 4 months. My doctor was pretty available so I could see him
every couple of weeks when I needed to. basically we experimented with each electrode individually and in
various combinations, with me keeping voiding logs for an objective record. Ultimately we found that I did
best with a specific 3 of the 4 electrodes on and cycling 8 sec on and 3 sec off. The 4th electrode made
my urgency worse so it is always off. By the end of the month I was going at least 6 hours a night and at
least 2 hours apart during the day. Very gradually and without any adjustments I found that I often could
sleep all the way through the night. Or I would realize I had been at work all morning (I can work again)
and not gone to the bathroom. In gneral I still notice slight improvements. I am still not normal. Most days
I still pee every 2 hours more often than going 3 or 4 but hey, its enough to have a life.
I still have IC and I still have flares. When I flare I do wake up once at night-once-and that's a bad day
and may pee more frequently than every 2 hours, but not for long.
After the first 4 months we stopped reprogramming,feeling we had gotten it as good as it was going to
get.At that time Teri and Debbie B actually had better, amazing ,results than me. But I trusted my doc
when he said I think we should stop now and lets see how it runs for the long haul. Once I had a bad flare
and really wanted it reprogrammed and he said it would be a mistake to change it from what works. The
flare would pass. A t the time I was frustrated, but he was right.
I should also say that evenonce we stopped reprogramming I had a fair amount of IC discomfort. For the
first year I still did bladder instillations about every 4 months, but I haven't needed any in the last 2 years.
I went to see Dr. Moldwin who said I had PFD. I had myofascial release therapy and warm baths twice a
day. My pain and discomfort went away. My PFD has never come back. Maybe it is because we broke the
cycle that had built up pre-interstim, maybe(this is my own theory) it is because the interstim stimulation
for me feels like very very gentle kegels-tightening & releasing-which of course is a type of therapy in and
of itself, but one my pelvic floor muscles couldn't do on its own and certainly not 24/7. Maybe I just got
lucky and my luck will change tomorrow.
I still take elmiron (afraid to stop it incase I need it since it takes so long to quit working. Recently I did
decide to try stopping my urised-since that works quickly. I seem to be okay without it. A year and a half
ago I tried stopping it and my bladder discomfort came back. I guess things change. Is the interstim
causing further improvement or is it coincidence, who knows?
The interstim is not perfect, even for me. Lately the area where my battery is implanted hurts more. I
think it is because I changed my exercise routine to accomodate other medical problems unrelated to all of
this. The exercises I do now (in water) work the upper buttocks more than walking 2 miles a day (which I
can no longer do for other reasons). It may strain or put pressure on the muscles around the battery,
muscles that may be compromised by the implant. Maybe I will learn to live with it, maybe I will have to
modify or reduce my exercise, maybe it will have to be moved.aybe the whole darn thing will break
tomorrow.
In the meantime, I am grateful for the 3 years of life that I have had. And I love it that when we go on a
trip my hubby needs a pit stop before me!!!
I thought long and hard before deciding to actually post my success story on these boards because so
many people have had bad experiences.I don't want someone to hear my story and blithely go forward
with the interstim procedure and be harmed. There are always risks with new procedures and devices and
anyone considering this must really understand that and go in with eyes wide open. But beyond that
clearly there are good surgeons and bad surgeons, honest ones and dishonest ones,etc. They do things
differently. Some follow the protocols and some don't.
I have no control over that. I can only tell my story. But honestly at this point the only people I feel
comfortable encouraging are people who go to my doctor. Not because he is the only good doctor but
because he is the only good interstim doctor I know ( not that I personally know any bad ones).
One thing I feel very strongly about is the proper way to have the test stimulation. NEVER EVER go with a
staged trial unless there is a super dan reason to do so (and even then, get a second opinion first). Yes,
with the older version of the test stim the wire can move, but many of us have had successful trials the
old fashioned way. In adddition if the posts on the Challenge Boards are any indication implanted leads
sure seem to move too.
Also, if you look carefully at all the posts over time you will discover that removing an implanted wire is
alot harder and potentially damaging and painful than removing the test stim wire that is not sewed in.
Why would you want to do that when there is a simpler and safer alternative? I have had my implant for
over 3 years now. recently I asked my doc if he now does the staged implant. He does not for the above
reasonas and many others. But this doc has always followed the protocols and put his patients welfare
first and foremost.
Finally the Interstim IS NOT FOR PAIN, no matter what anyone else tells you.
I apologize for this lengthy intro but it is the only way I feel comfortable posting my success story...so
here goes.
Whereas with hindsite I probably always peed more often than most I never thought much about it until it
really got out of hand. I was peeing as often as every half hour by day and 4-6 times at night. I always
felt like I had to pee, even when I had just gotten off of the toilet. I had some mild pain and discomfort
but mostly I was exhausted. I already had rheumatological problems and the lack of sleep just made me
sicker. I couldn't work anymore,etc.
None of the usual IC treatments work, nor did biofeedback and electrical stimulation(which by the way is
also supposed to be tried and fail before considering the interstim.
Then my doctor offered me the chance to have a test stimulation. He was just learning the interstim
procedure and in fact I was one of his very first interstim patients. I thought long and hard about being a
guinea pig for the technology and the doctor. But I checked the doctor out and other doctors and
surgeons attested to his surgical skills. He was not a new doctor, just new to the procedure.He was being
trained by an IC expert, Dr. Whitmore. In fact she was present at my test stim. I can't explain why I felt
comfortable going ahead but I did.
The day of the test stim came. I drove to the office myself( I was told I could) and was fully able to drive
myself back home after. yes, there were a few moments of brief intense pain as the needle was being
placed near the nerve repeatedly until the correct spot/responses were found. But that was it. My back
was a little sore or stiff but at no time did I require any medicine.
During the trial I avoided bending from the waist or getting it wet. I had 1 test wire on each side and I
tried one for a few days and then turned that one off and turned the other one on. One side definitely
worked better than the other. It cut my frequency in half and let me sleep 5 hrs straight at night. The
other wire stim did not feel like it was in the right place and didn't do much. Oh, the wire that worked did
slip a little after 2 days but I had clear objective proof (voiding logs) that it worked before it started to
slop.
I went back to the doctor and all he did was tug on the wire and pull it out. Real quick and did not hurt at
all. No surgery. No incisions.
then the hard part came. I had seen and experienced relief and had to wait months for insurance to
approve what at that time had just come off the experimental list. I think it is much easier to get the
approvals now.
Finally, April 26,1999 I had the interstim implanted. As surgeries go (and I have had many) I found it pretty
easy. I only took pain meds (toradol) for 2 days, and honestly if I hadn't had my period and menstrual
cramps I don't think I would have needed the meds on the second day. Don't get me wrong, my back was
sore and I was tired from the surgery, ansthesia etc but it was much better than I expected. For me the
worst part was how sick to my stomach I got from the anesthesia. Between that and the IV fluids and my
constant need to pee (my interstim was not on yet) I had a horrible first night with little sleep-but little
pain. The next A.M. I was still sick to my stomach so I stayed a second night. My doc decided to turn on
the interstim very very low since it was so soon in hopes that it would work a little and let me sleep. It
did. Not a dramatic improvement but enough to get a few hours at a time. I went home the next morning.
I had numerous adjustments over the next 4 months. My doctor was pretty available so I could see him
every couple of weeks when I needed to. basically we experimented with each electrode individually and in
various combinations, with me keeping voiding logs for an objective record. Ultimately we found that I did
best with a specific 3 of the 4 electrodes on and cycling 8 sec on and 3 sec off. The 4th electrode made
my urgency worse so it is always off. By the end of the month I was going at least 6 hours a night and at
least 2 hours apart during the day. Very gradually and without any adjustments I found that I often could
sleep all the way through the night. Or I would realize I had been at work all morning (I can work again)
and not gone to the bathroom. In gneral I still notice slight improvements. I am still not normal. Most days
I still pee every 2 hours more often than going 3 or 4 but hey, its enough to have a life.
I still have IC and I still have flares. When I flare I do wake up once at night-once-and that's a bad day
and may pee more frequently than every 2 hours, but not for long.
After the first 4 months we stopped reprogramming,feeling we had gotten it as good as it was going to
get.At that time Teri and Debbie B actually had better, amazing ,results than me. But I trusted my doc
when he said I think we should stop now and lets see how it runs for the long haul. Once I had a bad flare
and really wanted it reprogrammed and he said it would be a mistake to change it from what works. The
flare would pass. A t the time I was frustrated, but he was right.
I should also say that evenonce we stopped reprogramming I had a fair amount of IC discomfort. For the
first year I still did bladder instillations about every 4 months, but I haven't needed any in the last 2 years.
I went to see Dr. Moldwin who said I had PFD. I had myofascial release therapy and warm baths twice a
day. My pain and discomfort went away. My PFD has never come back. Maybe it is because we broke the
cycle that had built up pre-interstim, maybe(this is my own theory) it is because the interstim stimulation
for me feels like very very gentle kegels-tightening & releasing-which of course is a type of therapy in and
of itself, but one my pelvic floor muscles couldn't do on its own and certainly not 24/7. Maybe I just got
lucky and my luck will change tomorrow.
I still take elmiron (afraid to stop it incase I need it since it takes so long to quit working. Recently I did
decide to try stopping my urised-since that works quickly. I seem to be okay without it. A year and a half
ago I tried stopping it and my bladder discomfort came back. I guess things change. Is the interstim
causing further improvement or is it coincidence, who knows?
The interstim is not perfect, even for me. Lately the area where my battery is implanted hurts more. I
think it is because I changed my exercise routine to accomodate other medical problems unrelated to all of
this. The exercises I do now (in water) work the upper buttocks more than walking 2 miles a day (which I
can no longer do for other reasons). It may strain or put pressure on the muscles around the battery,
muscles that may be compromised by the implant. Maybe I will learn to live with it, maybe I will have to
modify or reduce my exercise, maybe it will have to be moved.aybe the whole darn thing will break
tomorrow.
In the meantime, I am grateful for the 3 years of life that I have had. And I love it that when we go on a
trip my hubby needs a pit stop before me!!!
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