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PostPosted: Wed Oct 17, 2018 9:04 am 
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Joined: Mon Jun 30, 2008 12:33 pm
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Location: MI
So, those of you who have been following my saga know that I have tried pretty much every treatment known to man. For those of you who haven't read my post, here's the reader's digest in-a-nutshell: I have leakage on and off since childhood, noticeable in my teens and early twenties as urine spots on my underwear. Occasionally i would have instances where i did not make it to the toilet and release a stream of urine going down my leg. in 2008 I finally acknowleged the condition as incontience and actually start wearing pads as protection. I seek treatment, try detrol to no avail, and run the gamut of tests. Local urology dept comes to the conclusion of oab/neurgenic bladder, and when medication fails to produce noticable results, Doc tells me i may have to live with this, and anotehr doctor does NOT think the interstim would be a viable option. So, we think the incotninece might be related to nerological issues, which eventually leads to neurology and urology at U of M. Neurology concludes no real issues with nerves, but refers me to urology. They diagnose me not as oab but rather retaining and having overflow. He takes me off catapres and has me undergo pelvic relaxation therapy, which gets me dry for 4 years, until my bladder starts misbehaving in June 2014. I run the gauntlet again, trying medications, revisiting therapy to short term success. My urologist is suggesting interstim, I am leery. FInally i decide to do it. But because of complications of timing and availability, it gets delayed. I undergo Nuro as a segue into interstim, only for it to not work. OK, now you have the necessary background.

My sister is nurse anesthetist. She was telling my mom how she has seen Interstim work for a lot of patients whch is why my mom has been rooting for me to undergo the procedue. My urologist decides to try a less invasive procedure called nuro first. It stimulates the nerve in the ankle leading to the bladder. I did not notice any appreciable results. Because of that, my urologist is unwilling to go with Interstim. My mom naturally is livid, saying that we should seek a second opinion. My sister also would probably have a similar reaction. My urologist said that it would be uncomfortabe for me to have the implant under my "keester". Really, I have to trust that she is acting in my best interest. But because my sister is saying it works for lots of other patients that it must work for me. I honestly have become more or less used to the incontience and have become ambivalent as to whether I beceome dry. I don't have complete loss of control. For the most part it is managable. So for me to insist on a second opinion.. eh.. I don't know. Does anyone else have this dilemma? That is, the doctors have more or less told you youre out of options or an option is not for you but family insist on you trying it because of things they heard? I even had my uro write my mom a letter saying that this would not benefit me. My mom's reaction? "Well we need a second opinion." The LAST urologist I saw said we might need to live with this.

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"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II


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PostPosted: Wed Oct 17, 2018 10:58 am 
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Joined: Sat Mar 29, 2014 11:45 am
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Your family, for as loving and as concerned as they are, need to understand that this is your body, not theirs, and, if they truly love you, they will need to respect your decision. Many of us here have endured similar tests and embarrassing exams, and have concluded that managing incontinence is the better choice.


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PostPosted: Wed Oct 17, 2018 5:16 pm 
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Location: Hampton Roads, Virginia
In the end, decide what work bests for you and your situation.

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PostPosted: Thu Oct 18, 2018 5:37 am 
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Joined: Mon Jun 30, 2008 12:33 pm
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Location: MI
I'm certainly not in the mood to contradict probably the most understanding urologist and the one who's been the most insightful and spot on sounding since this came back. My first urologist was not local, had to drive at least an hour to see him. Well, before that I saw a uro in my home town. Not sure why I couldn't see him in the same location again. After undergoing the urodynamics (gee, that was fun NOT) I was basically told that i might have to live wit htis after 2 med failed. Even my urologist back then was hesitant to use Interstim. My mom has an awfully short memory for this kind of thing, because way back when, the urologist I was seeing did NOT think i was a candidate for Interstim. Its all because my sister who is NOT a urologist sees it working for patients. Good for them! Guess what? They have different incontinence than I do. They have straight up OAB. I don't. OAB manifests itself as Oh I gotta go right now gotta go. With me its.. oh im full? Wow how did that happen.. ok ill go to the bathroom.. Woah, why am i going now, havent made it to the bathroom yet. TOTALLY different circumstances. Yes, it may manifest as urge, but its different. In my mind, the difference is large enough to where if my urologist says no, I am not going to contradict her.

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"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II


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PostPosted: Thu Oct 18, 2018 6:06 am 
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Joined: Sun Oct 20, 2013 3:45 pm
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Location: North Carolina - Raleigh area
Sociologygeek, use Google and do some research before making a decision. When the batteries run out another surgery is required. It does not work for a high percentage of people. Many users have their InterStim implant surgically removed. It may or may not be right for you.

--John


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PostPosted: Thu Oct 18, 2018 7:33 am 
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Joined: Mon Jun 30, 2008 12:33 pm
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Location: MI
JD thanks for the input.. but at this point google searching seems to be a moot point. My urologist already said no. She had me undergo Nuro which has a 71 percent success rate, and Interstim has 10 percent over that. She is figuring that the slim 10 percent chance is not enough to cut me open and implant the device. Given that we are talking about a device that can have the side effects of lead migration, electric shocks, infection
pain etc.. I just dont see the point.

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"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II


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