I think my Titan was installed backwards???

The final frontier. Deciding when, if and how.
spirit
Posts: 65
Joined: Thu May 02, 2019 1:30 pm

Re: I think my Titan was installed backwards???

Postby spirit » Sun Mar 15, 2020 8:53 pm

tomas1 wrote:They do an ultra-sound of my bladder every time I go to the urologist. I'm sure it's to milk a couple dollars from Medicare.
I don't think it costs too much. MRIs are a different story.


My BCBS will pay most of any cost. It payed for 90% of everything related to the implant. I was thinking it may be better to see if my regular doc could do an ultrasound so I had the facts in hand when I went to the urologist???
58 YO, Married, T1 Diabetes, 5'10". 160. Stage-fright ED for years, did fine with pills, Penis Fracture in 2016 ended ALL erections. Used VED for 4 months prior to surgery. Implanted with 20cm Titan on 12/11/2019.

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

Re: I think my Titan was installed backwards???

Postby tomas1 » Sun Mar 15, 2020 9:23 pm

I'd use a different doc than my urologist also.
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.

oldbeek
Posts: 2454
Joined: Sun Sep 10, 2017 1:46 pm
Location: Los Angeles area

Re: I think my Titan was installed backwards???

Postby oldbeek » Mon Mar 16, 2020 1:02 am

The parts (tips) that goes near your glans? Are they just pointed plastic? Or can you feel a slight hard bulb on the tips. With the flexible joint towards your body from where the pressure tubes enter, and no snake eyes, it sure sounds like it was installed backwards. ( Hard to believe ) What country was this installed in?
82, good health, RP 7-2017, all nerves taken , PSA 0.05, 4-18,, .07 1/19,.05 4/19, .03 11-21, .04 11-23, implanted 4-1-18, Infra-pubic, AMS lgx 15 cm with 5cm rte. Implant at USC Keck. Dr Boyd and Dr Loh Doyle 6.5 x 5, 800 AUS 7-21-20

spirit
Posts: 65
Joined: Thu May 02, 2019 1:30 pm

Re: I think my Titan was installed backwards???

Postby spirit » Mon Mar 16, 2020 2:25 am

oldbeek wrote:The parts (tips) that goes near your glans? Are they just pointed plastic? Or can you feel a slight hard bulb on the tips. With the flexible joint towards your body from where the pressure tubes enter, and no snake eyes, it sure sounds like it was installed backwards. ( Hard to believe ) What country was this installed in?


Pointy plastic. Just beyond where the tubes join. As I lay in bed here, I can really feel it all well. The tips are short and pointed and extend just to were the glans begins, less than an inch past the tube joints. The other end extends past my anus.

If I pull down on the pump, I can clearly feel the tubes being pulled. It is backwards.

It was done in Illinois. What the absolute fuck?

The ache continues inside from the pressure.
58 YO, Married, T1 Diabetes, 5'10". 160. Stage-fright ED for years, did fine with pills, Penis Fracture in 2016 ended ALL erections. Used VED for 4 months prior to surgery. Implanted with 20cm Titan on 12/11/2019.

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

Re: I think my Titan was installed backwards???

Postby Lost Sheep » Mon Mar 16, 2020 12:47 pm

spirit wrote:
oldbeek wrote:The parts (tips) that goes near your glans? Are they just pointed plastic? Or can you feel a slight hard bulb on the tips. With the flexible joint towards your body from where the pressure tubes enter, and no snake eyes, it sure sounds like it was installed backwards. ( Hard to believe ) What country was this installed in?


Pointy plastic. Just beyond where the tubes join. As I lay in bed here, I can really feel it all well. The tips are short and pointed and extend just to were the glans begins, less than an inch past the tube joints. The other end extends past my anus.

If I pull down on the pump, I can clearly feel the tubes being pulled. It is backwards.

It was done in Illinois. What the absolute fuck?

The ache continues inside from the pressure.

Have you called the manufacturer's Patient Liaison? The maker SURELY has an interest in correcting both your situation and their attitude towards allowing this surgeon to install any more of their devices. They have an incentive to make this right with you, if not an obligation - at least an obligation to go to bat with the surgeon on your behalf..
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

Crtrader
Posts: 138
Joined: Tue Dec 10, 2019 2:32 pm

Re: I think my Titan was installed backwards???

Postby Crtrader » Mon Mar 16, 2020 12:54 pm

This is insane if true. I hope you get it resolved quickly. I have never sued anyone in my life but I would go after this guy with fury.

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

Re: I think my Titan was installed backwards???

Postby Lost Sheep » Mon Mar 16, 2020 1:30 pm

Crtrader wrote:This is insane if true. I hope you get it resolved quickly. I have never sued anyone in my life but I would go after this guy with fury.

I forgot to recommend talking to a lawyer in addition to contacting Coloplast's Patient Liaison. The Patient Liaison is paid for by Coloplast (is not paid by the surgeon) and has an interest in maintaining a good relationship between the manufacturer and the patient.

How does one locate a lawyer who knows about penile implants? I know malpractice lawyers can be searched for, but the implant specialty would be easier to explain to a lawyer who is already familiar with the devices and issues surrounding them.

Anyone here know?
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

spirit
Posts: 65
Joined: Thu May 02, 2019 1:30 pm

Re: I think my Titan was installed backwards???

Postby spirit » Mon Mar 16, 2020 2:03 pm

Thank you all. Just to get to the bottom of this. There is no way in hell there should be (4) separate tubes extending 75% of the way to the end on my penis... I see not image or diagram that shows this and everything point to what I suspect (know). The ache and pain is really getting to me. It is all day long with a more sharp pain right about where the tubes join. I can move all these tubes around freely and separate them.

What is my first step? My general practitioner? Is this dangerous for me right now? How serious?

See this pic with a childish drawing but this generally reflects what I can easily feel. The whole apparatus and jumble of tubes does not actually extend quite so far and the pointed tips end about a half inch from the glans.

IMG_80801-21.jpg
IMG_80801-21.jpg (182.18 KiB) Viewed 938 times


I want to add that my internal ache may be due to not being able to fully deflate either due to only reaching the ends of the cylinders????
58 YO, Married, T1 Diabetes, 5'10". 160. Stage-fright ED for years, did fine with pills, Penis Fracture in 2016 ended ALL erections. Used VED for 4 months prior to surgery. Implanted with 20cm Titan on 12/11/2019.

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

Re: I think my Titan was installed backwards???

Postby Lost Sheep » Mon Mar 16, 2020 2:53 pm

Spirit

Have you shown that latest picture and your very lucid description of being able to feel TWO PAIRS of tubes in your penis out to the far (distal) end?

If not, do it. Do it now.

If you have not done so already, Take names of everyone you talk to.

During, or immediately after, make notes of your conversations, information given and promises made, emails sent and received, etc.

Before hanging up, say "thank you" (and use their name) to everyone you talked with (even if they were no help - they might be in the future and will more likely remember you if they know you remember them). People respond to being remembered. Whether it is because they know they might be called to account for their actions or inactions or because people generally like to be remembered.

On saying "thank you": Even if a person was no help at all, or even obstructive, they gave you their time. And even obstructive people can change their response, especially if they feel appreciated. What you want to do is enlist the aid of everyone you meet; to get them on your side.

Keep your notes in an orderly fashion - in a notebook, in a computer document (properly backed up, of course) or wherever works for you. It may be presented in court and you want it to be persuasive. This is where a demonstratively contemporaneous record is helpful. This also allows you to find their supervisor and give them your thanks after a successful outcome.

This is not overkill. This is minimally prudent.

Edited to add: "What Oldbeek just said."
Last edited by Lost Sheep on Mon Mar 16, 2020 3:43 pm, edited 1 time in total.
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

oldbeek
Posts: 2454
Joined: Sun Sep 10, 2017 1:46 pm
Location: Los Angeles area

Re: I think my Titan was installed backwards???

Postby oldbeek » Mon Mar 16, 2020 3:05 pm

What city in Illinois. OK guys , who is an experienced implant specialist in his area? He needs to get to an experienced specialist ASAP. He needs to get an experienced implant dr to confirm his findings. If true he needs a lawyer. He should also get a Coloplast rep on the phone and have them assign a case worker to this project. Coloplast needs to name the rep that sold the device to this DR that clearly does not know how to read instructions. IF the device was installed at a teaching hospital, I would be contacting the administration of that hospital immediately also. Everyone involved with this screwup needs to be on board right now.
82, good health, RP 7-2017, all nerves taken , PSA 0.05, 4-18,, .07 1/19,.05 4/19, .03 11-21, .04 11-23, implanted 4-1-18, Infra-pubic, AMS lgx 15 cm with 5cm rte. Implant at USC Keck. Dr Boyd and Dr Loh Doyle 6.5 x 5, 800 AUS 7-21-20


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