Dear Coloplast: About Your Non-Existent Titan Support
Posted: Wed Jan 15, 2020 10:37 am
So this really is a process, to continue to learn how this Titan works. I'm 8 weeks post-implant and remain confused as hell by the issue I am experiencing with the mechanics of how the Titan Touch deflates.
My understanding of the Touch via my surgeon, via Coloplast's public marketing, and via a lengthy, frustrating, entirely weird phone conversation yesterday with Coloplast, is that the Touch version of the Titan is designed for the user to depress the deflate buttons for several seconds, then release the buttons - this initiates a one-way outflow of fluid from the penis back into the reservoir. Sounds simple enough. Except that is clearly not how my Touch is deflating.
What I at first thought was my post-op new reality of a semi-stiff flaccid after deflation, was in fact an incompletely deflated penis. I was walking around with what I thought was my new flaccid at 100% deflation, and I was getting frustrated with the javelin pointing the way around and trying to climb out of my pants. Except, turns out, I was in fact not fully deflated.
I've been experimenting with the buttons and what I found yesterday after cycling was that if I keep the deflate buttons firmly depressed, my penis deflates notably more completely than if I hit the buttons and then release the buttons and squeeze my penis. To achieve full deflation, I absolutely need to keep my buttons depressed then entire time I am simultaneously flattening the cylinders. I'm now certain of this. With press and release, I get a small movement of fluid out. Then, resistance is felt. Fluid remains in the cylinders. And I'm not remotely interested in forcing things. Coloplast's own instructions for this device state to "gently" squeeze the cylinders until empty. So what the hell is that? This is not how this device is designed, marketed, nor explained by either Coloplast nor my surgeon.
I am going to schedule an appointment to go see my implant surgeon soon to get his firsthand appraisal and opinion of what's going on. For me, it's not a deal breaker by any means if my reality is that I need to keep the buttons depressed the entire time I'm deflating. I will have to figure some different contorting of my wrists, hands, fingers...because right now I'm a two-handed button presser and if this thing requires a continuous button depression, then I won't have much choice other than I'll need to find a way to free up my other hand entirely to squeeze the fluid out of my penis. Again, nothing I guess I can't figure out with some diligence and practice and time. Ultimately what I care about is that this thing reliably inflates and reliably deflates as I need it to. But of course it's a nagging question in my mind - why is it not operating as Coloplast stipulates it is designed to operate?
So I call Coloplast yesterday with the intention of hopefully connecting with, and having a conversation with, a patient liaison, a support specialist, a clinical expert - you know, someone who is public-facing, patient-engaged, and who has deep knowledge of the device itself and its functionality, and who also understands its intended functionality in the human body. I work in the medical device industry myself. These patient-supporting liaisons and advocates are ubiquitous - they're literally everywhere in our industry, and for good reason. Not uncommon. They're leveraged frequently by patients who have questions about device functionality.
Except Coloplast told me they don't do this.
Coloplast told me yesterday that they'd be happy to answer my questions. But the representative who answered the phone...no clarity at all on what her credentials are, what her expertise with the Titan is...this was the frontline person who picked up the phone. She's encouraging me to just ask my question. I told her that I have multiple questions but, ok, I'll play along. I lay out the above scenario to her in detail about deflation. She verifies that I have the Touch version. Then she says, yes that's how the Touch works, depress and release and easy deflate. I say, yes, I'm aware of its intended functionality. We are in agreement there, no need to keep stating what is "intended" functionality. I'm interested in what are the specific engineering idiosyncrasies or functionality which may be in play here, causing the situation I am describing? When I continue to press for information she says to me, "well the questions you're asking is really best directed to your surgeon".
My reply to her, and my obviously steadfast view of this is: you, Coloplast...you are the manufacturer of my implanted medical device and you have nobody...literally, no one…?...you can put on the phone with me...to hear me out on a handful of questions related directly to the intended vs actual functionality of your marketed device, and to provide what I would presume would be, by definition, the most highly informed view possible from the very same people who conceived, designed, built, filed for approvals, revised, marketed, tested, re-designed, re-tested, and sold my device?
Really, Coloplast?
You seriously have precisely zero human product support your implanted patients can avail themselves of? If true, then you are almost utterly unique in the medical device industry, and that's absolutely not a compliment. So I was told to submit my questions in writing via email to Coloplast and "someone" would route those to the "right person" to respond to me.
??
Honestly, Coloplast, you should be embarrassed. But you certainly don't seem to be. God almighty, that is frustrating and disappointing and just lousy. And cheap. Patient liaisons are not inexpensive for a company to have; neither is your device inexpensive for us to purchase. So step up, be professionals, and deploy some meaningful support.
We called and got infinitely more practical information and direct, detailed product support last week from the manufacturer of our fucking kitchen faucet. Not kidding. And it wasn't even close.
Still would be grateful to hear the input and experiences of any other guys with the Touch who experienced this same deflate contradiction and what you've learned or resolved along the way.
My understanding of the Touch via my surgeon, via Coloplast's public marketing, and via a lengthy, frustrating, entirely weird phone conversation yesterday with Coloplast, is that the Touch version of the Titan is designed for the user to depress the deflate buttons for several seconds, then release the buttons - this initiates a one-way outflow of fluid from the penis back into the reservoir. Sounds simple enough. Except that is clearly not how my Touch is deflating.
What I at first thought was my post-op new reality of a semi-stiff flaccid after deflation, was in fact an incompletely deflated penis. I was walking around with what I thought was my new flaccid at 100% deflation, and I was getting frustrated with the javelin pointing the way around and trying to climb out of my pants. Except, turns out, I was in fact not fully deflated.
I've been experimenting with the buttons and what I found yesterday after cycling was that if I keep the deflate buttons firmly depressed, my penis deflates notably more completely than if I hit the buttons and then release the buttons and squeeze my penis. To achieve full deflation, I absolutely need to keep my buttons depressed then entire time I am simultaneously flattening the cylinders. I'm now certain of this. With press and release, I get a small movement of fluid out. Then, resistance is felt. Fluid remains in the cylinders. And I'm not remotely interested in forcing things. Coloplast's own instructions for this device state to "gently" squeeze the cylinders until empty. So what the hell is that? This is not how this device is designed, marketed, nor explained by either Coloplast nor my surgeon.
I am going to schedule an appointment to go see my implant surgeon soon to get his firsthand appraisal and opinion of what's going on. For me, it's not a deal breaker by any means if my reality is that I need to keep the buttons depressed the entire time I'm deflating. I will have to figure some different contorting of my wrists, hands, fingers...because right now I'm a two-handed button presser and if this thing requires a continuous button depression, then I won't have much choice other than I'll need to find a way to free up my other hand entirely to squeeze the fluid out of my penis. Again, nothing I guess I can't figure out with some diligence and practice and time. Ultimately what I care about is that this thing reliably inflates and reliably deflates as I need it to. But of course it's a nagging question in my mind - why is it not operating as Coloplast stipulates it is designed to operate?
So I call Coloplast yesterday with the intention of hopefully connecting with, and having a conversation with, a patient liaison, a support specialist, a clinical expert - you know, someone who is public-facing, patient-engaged, and who has deep knowledge of the device itself and its functionality, and who also understands its intended functionality in the human body. I work in the medical device industry myself. These patient-supporting liaisons and advocates are ubiquitous - they're literally everywhere in our industry, and for good reason. Not uncommon. They're leveraged frequently by patients who have questions about device functionality.
Except Coloplast told me they don't do this.
Coloplast told me yesterday that they'd be happy to answer my questions. But the representative who answered the phone...no clarity at all on what her credentials are, what her expertise with the Titan is...this was the frontline person who picked up the phone. She's encouraging me to just ask my question. I told her that I have multiple questions but, ok, I'll play along. I lay out the above scenario to her in detail about deflation. She verifies that I have the Touch version. Then she says, yes that's how the Touch works, depress and release and easy deflate. I say, yes, I'm aware of its intended functionality. We are in agreement there, no need to keep stating what is "intended" functionality. I'm interested in what are the specific engineering idiosyncrasies or functionality which may be in play here, causing the situation I am describing? When I continue to press for information she says to me, "well the questions you're asking is really best directed to your surgeon".
My reply to her, and my obviously steadfast view of this is: you, Coloplast...you are the manufacturer of my implanted medical device and you have nobody...literally, no one…?...you can put on the phone with me...to hear me out on a handful of questions related directly to the intended vs actual functionality of your marketed device, and to provide what I would presume would be, by definition, the most highly informed view possible from the very same people who conceived, designed, built, filed for approvals, revised, marketed, tested, re-designed, re-tested, and sold my device?
Really, Coloplast?
You seriously have precisely zero human product support your implanted patients can avail themselves of? If true, then you are almost utterly unique in the medical device industry, and that's absolutely not a compliment. So I was told to submit my questions in writing via email to Coloplast and "someone" would route those to the "right person" to respond to me.
??
Honestly, Coloplast, you should be embarrassed. But you certainly don't seem to be. God almighty, that is frustrating and disappointing and just lousy. And cheap. Patient liaisons are not inexpensive for a company to have; neither is your device inexpensive for us to purchase. So step up, be professionals, and deploy some meaningful support.
We called and got infinitely more practical information and direct, detailed product support last week from the manufacturer of our fucking kitchen faucet. Not kidding. And it wasn't even close.
Still would be grateful to hear the input and experiences of any other guys with the Touch who experienced this same deflate contradiction and what you've learned or resolved along the way.