Dear Coloplast: About Your Non-Existent Titan Support

The final frontier. Deciding when, if and how.
stephen54
Posts: 481
Joined: Sun Nov 10, 2019 11:43 am
Location: Chicago

Dear Coloplast: About Your Non-Existent Titan Support

Postby stephen54 » 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.
54 yrs. Blessed with highly sexual 52 yr old wife. Pills 10 years, then 9 yrs Trimix. 28 cm Titan Touch XL 2019, Laurence Levine, Rush Univ Med Ctr, Chicago. Implant = nonstop fun. Hypogonadal, so also 10+ years testosterone replacement.

St1pan2019
Posts: 99
Joined: Tue Mar 12, 2019 3:41 pm

Re: Dear Coloplast: About Your Non-Existent Titan Support

Postby St1pan2019 » Wed Jan 15, 2020 1:22 pm

Hey Stephen,
I was recently implanted and am 6 days post op and was installed with the Touch model as well and am experiencing the exact same issue as you. I was sitting in the tub this morning wondering the same thing - why doesn’t this thing just go down on its own when I press the button? I asked Dr Eid this question when he was deflating me but he had no real response other than he likes to squish the shit out of your junk while holding down the release button.

When I am deflating I press the release button with my thumb while my fore finger steadies the other side of the valve block and I hold for a few seconds and I can feel some fluid transfer returning to the reservoir but then it stops pretty quickly and I have to repeat. If I really want to deflate I have to use Eids method of squeezing my penis really hard... not ideal but right now this what I am doing. I still don’t feel it’s enough but since it’s so soon after my surgery I find it a bit painful to squeeze my self some more but working on it. I really hope someone can help us figure out what we are missing about this one touch deflation?? Keep us posted
40 yrs old, ED from Scleroderma since 2010, married since 2004, was using VED/rings for sex as injections/pills didn't work, Also on Testosterone injection therapy
Implanted 1/9/2020
Dr. Eid, Titan Touch 20+1cm rte
Reside in Ontario, Canada

Dave52
Posts: 206
Joined: Sat Oct 13, 2018 4:28 am

Re: Dear Coloplast: About Your Non-Existent Titan Support

Postby Dave52 » Wed Jan 15, 2020 1:24 pm

I had simalar issues with my deflate button at the begining I used two hands also but as time went on I now use only one . One touch is not really one touch its squeeze and hold for a few seconds then release. That will get most of the pressure out of the tubes. At 8 weeks the tubes are still quite stiff and not as pliable as they will be in 6 months to a year. By then they are softer and deflate better. I will say that there are no springs to make them retract so if you do want all the fluid out then you will have to squeeze them. With a longer flacid state than you were used to and stiff tubes from the new implant not having a chance to soften up yet I also had the javilin affect. Now I hold the button for 3-5 seconds and I deflate to a point I can place it to the side and it stays that way . If I want to get all the fluid out I squeeze it . As time goes on you will find what works for you. Enjoy your new mechanical dick because thats what it is.
Dave
Born 52
Prostatectomy 6/1/18
Viagra worked before RRP
Trimix painful Bimix both Ineffective
Titan 20CM 1CM RTE
10/26/18 Dr.Eid

Lost Sheep
Posts: 6133
Joined: Mon Jul 04, 2016 11:16 pm

Re: Dear Coloplast: About Your Non-Existent Titan Support

Postby Lost Sheep » Wed Jan 15, 2020 1:27 pm

stephen54 wrote: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.

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.


Continuous press? Press and release? Depth of the press?

I have an AMS and note that the written instructions are incorrect for that device's valve operation. It instructs that a 4-second press of the deflate button will allow full deflation even after the button is released. The PL (Patient Liaison) verbally amended that to 8 seconds. By first-hand experience, I have determined through extensive empirical experimentation the length of time the button is pressed is irrelevant. (This also makes sense to my mechanical engineering mind.)

Pressing the button gently (part-way) releases fluid from the tubes back into the reservoir and when released, the flow stops. (This is handy if one wants to partially deflate for any reason.) Pressing the button for 1 second or 20 seconds this it true. Pressing the button to its full travel results in a faint click or pop (of the valve "kicking over" to deflate mode). I can easily feel it (some claim they can hear it as well). After that "kickover", deflation can continue unimpeded without the button being depressed. Deflation from full or nearly full flows by itself. Deflation from less than about 50% requires squeezing the penis, but DOES NOT REQUIRE ANY MORE USE OF THE BUTTON.

Even so, a PL is obliged to communicate as best as possible and to get answers he/she cannot answer, even if that means contacting the design team. This is just the right thing to do.

Of course, not everyone in this world does the "right thing".


stephen54 wrote: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?

It isn't just Coloplast. I think it depends a lot on the individual PL, too. I sent a question to my AMS PL asking what the dimensions are of the rear tips, the inflatable tubes and the distal tips for the 18cm LGX. A simple question that anyone with access to the design drawings or one of the devices could answer easily. No reply whatsoever. Not even a "We don't think you need to know and don't WANT you to know." dismissal.

That front-line lady you got clearly is a "gatekeeper" that insulates the company from questioners (whether by her personal inclination or corporate policy). Can your surgeon give you the name of the PL responsible for your region of the country (world). The one who he interfaces with? That PL might be more responsive.

The frontline person (gatekeeper) revealed her function in that regard when she said "well the questions you're asking is really best directed to your surgeon". The surgeon is quite often not well versed in the operation of the devices implanted (from artificial hearts to artificial joints). Surgeon is expert in flesh. Design engineers are expert in the devices. While it is understandable that Coloplast does not want their engineers fielding patient questions, the PL (as you point out) is INTENDED to field those questions. They are inevitable and manufacturers are duty-bound to respond. It is also in their self-interest to keep clients happy.


stephen54 wrote: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.

I have been impressed with the Coloplast PL for my region (Alaska/Pacific Northwest), but never actually had specific questions for him. He does do outreach (obviously helps boost sales), but was quite personable and willing to spend time with me in spite of the fact that I already had my AMS device. Would that all Customer Service/Patient Liaison were so.
Lost Sheep
AMS LGX 18+3 Nov 6, 2017
Prostate Cancer 2023
READ OLD THREADS-ask better questions -better understand answers
Be part of your medical team
Document pre-op size-photos and written records
Pre-op VED therapy helps. Post-op is another matter

vajim1
Posts: 492
Joined: Tue Jan 16, 2018 2:19 pm

Re: Dear Coloplast: About Your Non-Existent Titan Support

Postby vajim1 » Wed Jan 15, 2020 4:10 pm

I believe both brands are harder to use at first,after they get used for several months things get much easier, For me it was about 5 months with my Titan.
You have to squeeze you dick to get the fluid out or it just equalizes and half stays in your dick.
76 year old fart. Prostate removed Oct. 9, 2017,Psa 30 days after .15 next Psa .2. 37 Radiation treatments for recurrent cancer, 1 year out Psa .033 ZERO ERECTIONS, implanted Sept 5 2019 Dr. Lentz Duke Raleigh N.C. Titan 22cm.

tomas1
Posts: 1946
Joined: Tue Jul 23, 2013 5:12 pm
Location: Tempe, AZ

Re: Dear Coloplast: About Your Non-Existent Titan Support

Postby tomas1 » Wed Jan 15, 2020 4:46 pm

Something that Lost Sheep said Is what I've noticed.
The pressure must equalize between cylinders and reservoir.
It also may depend on how much pressure is exerted on the reservoir.
Right now my pump is working pretty well 1 year out.
85 years
Inject testosterone weekly.
Implant on 1/22/19 by Dr Avila.
Scrotal, hor. incision just over 1"
18cm AMS 700 CX, 3.5cm RTE 100cc res
Gleason 6 prostate cancer. Monitoring it for now.
Update: On my last biopsies the cancer wasn't found.

Agfa13
Posts: 1578
Joined: Thu Oct 31, 2019 6:03 pm
Location: Laurel, Maryland

Re: Dear Coloplast: About Your Non-Existent Titan Support

Postby Agfa13 » Wed Jan 15, 2020 6:41 pm

Stephan54,

Were you given the go ahead to take a bath? Dude, your stitches are still healing.
They should have told you NOT to take a bath because of your stitches.
Ag, 58, Maryland
Document with BEFORE/after pics
AMS cx 24cm, Titan malleable, Titan Legacy on 3/2/20 (20cm/bilat 2cm RTE/ 75 cc)
Face pic on pg. 22: names and faces; dick pics on pg 7/41: Dick of day
Smaller dick, but can fuck without fail :lol: :D

JimStein
Posts: 44
Joined: Wed Nov 21, 2018 1:11 pm

Re: Dear Coloplast: About Your Non-Existent Titan Support

Postby JimStein » Wed Jan 15, 2020 8:16 pm

Well, now I see I'm not the only one with coloplast titan deflation problem. Somehow half of the liquid finds its way back in the tubes. I' ll have an appointment tomorrow with dr. Eid, I'll ask him what the deal is.
66 y old. Dr. Eid my choice as a world class surgeon. Implanted coloplast titan on 01/09/2020 after trying everything. Viagra worked very well, with the usual side effects, for 10 years. Past 7 years proved to be a disaster.

Magicmike
Posts: 205
Joined: Sun Jun 23, 2019 10:52 am

Re: Dear Coloplast: About Your Non-Existent Titan Support

Postby Magicmike » Thu Jan 16, 2020 6:32 am

Add me to your list about being upset about the deflate button. I really believe that when Coloplast made what's called the Touch I guess in there mind it was the way that they expected it to work. I had my consultation with my Doctor about 4 months ago and he had a demo model on his desk. The model was filled with a liquid solution not sure if it was saline. I pumped up and did the touch and the liquid started to flow back to the reservoir. After implant it seems that things have changed. Now I do press the deflate button for 3 seconds and when I let go I can feel some saline going back into the reservoir . To get my implant totally empty I have to hold the button and squeeze my penis as hard as I can. My issue is I'm only 5 days post op and if I'm cycling twice a day the pain that I feel is unbearable. I think that I was given false information

stephen54
Posts: 481
Joined: Sun Nov 10, 2019 11:43 am
Location: Chicago

Re: Dear Coloplast: About Your Non-Existent Titan Support

Postby stephen54 » Thu Jan 16, 2020 6:36 am

St1pan2019 wrote:Hey Stephen,
I was recently implanted and am 6 days post op and was installed with the Touch model as well and am experiencing the exact same issue as you. I was sitting in the tub this morning wondering the same thing - why doesn’t this thing just go down on its own when I press the button? I asked Dr Eid this question when he was deflating me but he had no real response other than he likes to squish the shit out of your junk while holding down the release button.

When I am deflating I press the release button with my thumb while my fore finger steadies the other side of the valve block and I hold for a few seconds and I can feel some fluid transfer returning to the reservoir but then it stops pretty quickly and I have to repeat. If I really want to deflate I have to use Eids method of squeezing my penis really hard... not ideal but right now this what I am doing. I still don’t feel it’s enough but since it’s so soon after my surgery I find it a bit painful to squeeze my self some more but working on it. I really hope someone can help us figure out what we are missing about this one touch deflation?? Keep us posted


Thanks so much. Looks like we're in the same boat here. I feel less crazy now, but no less confused.

I'm working on cutting through the Coloplast force field and trying to find a contact who will engage with me and have some dialogue. It's been a bit exhausting with them to say the least. Have asked my surgeon to run some interference and intervene to just get someone qualified on the phone with me to chat. Will let you know what I hopefully can dig up...
54 yrs. Blessed with highly sexual 52 yr old wife. Pills 10 years, then 9 yrs Trimix. 28 cm Titan Touch XL 2019, Laurence Levine, Rush Univ Med Ctr, Chicago. Implant = nonstop fun. Hypogonadal, so also 10+ years testosterone replacement.


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