Helping men navigate the IPP process

The final frontier. Deciding when, if and how.
gene308
Posts: 139
Joined: Tue May 15, 2018 1:37 pm

Helping men navigate the IPP process

Postby gene308 » Wed Jan 31, 2024 2:55 pm

I received my implant 6 years ago. My IPP story is here (viewtopic.php?f=6&t=15678#p139865).

Since then, I have been supporting men facing the IPP decision through the AMS Champion Program. This program provides opportunities for a one-on-one connection between someone considering an implant and someone knowledgeable who has been through the process.

Goals for submitting this post:

1. Raise awareness of the Champion Program in the Franktalk community

2. Make IPP candidates aware of what I believe are important issues I have encountered in 6 years of supporting IPP candidates

If you:
• Are considering and implant and want to talk with someone who has been through the process and living with the implant?
or
• Are an experienced Franktalk poster who would like to volunteer to help men one-on-one?

Please call Michelle at (978) 355-1218


Important issues for IPP candidates to consider:

The typical (complication free) implant surgery is relatively simple. The need for a highly qualified dedicated implant surgeon becomes essential when complications arise. If you have decided on getting an implant and looking for a surgeon and facility, please consider these screening questions for surgeon qualifications and after surgery care and support.

Ask prospective surgeons these questions to evaluate their ability and experience with complications:

• If I need revision surgery, will you do revision surgery or will you refer me to another surgeon? Who?
• How many revisions have you done and why
• If you encounter fibrosis in the corpora cavernosa how will you break through and ensure tips go fully into the glands?
• How will you deal with pyronines?
• If an infection were to occur, will you handle this yourself? Or by referral?
• What is your procedure for dealing with infection should it occur?
• Most surgeons will say they aggressively size the implant. How will you set reasonable expectations prior to surgery?
• Dr.Andrew Kramer’s youtube channel ( Dr. Andrew Kramer - YouTube) has many surgical videos showing revisions and complications. I include this for educational purposes. I encourage you to look at some of the more complicated surgeries. You may not need this level of expertise but maybe you will?

After surgery care and support:

I have surprisingly found that after surgery care and support can be problematic for patients I have worked with. It is advisable that you set clear expectations with the surgeon on after-surgery availability and support

Recommendations:

* Make arrangements for after surgery direct communication (bypass call center) to surgeon or PA/nurse.

• Set expectations that should you have after surgery concerns, you can have direct access to expertise. I recommend you get a direct cell phone number. This way you can take a picture and send it for review. The surgeon has done this many times, this is your first time and you have every right to have your concerns addressed in a professional timely manner. There is no reason you be worrying about “Is this normal?”

• Make arrangements to have the ability to make urgent office visits if needed (bypass call center and office scheduler)



I believe it is important to make the Franktalk community aware of what I have learned working with numerous men looking to get an implant. I will list the issues below.

1. Men typically don’t have anyone to talk to about ED and its impact on the individual and the relationship. This one-one one connection helps to eliminate the stigma, the embarrassment and the fear surrounding ED and seeking the ultimate treatment. Many men reject or delay implant surgery without being fully informed.
2. ED is often a biological process caused by (all too common) medical conditions such as: cardiovascular disease, diabetes. hypertension, high cholesterol, high blood pressure. These conditions effect many millions of men.
3. The underlying conditions and process(s) are often chronic and progressive: chronic meaning continuing and progressive meaning getting worse.
4. While there are treatments for ED that may help along the way, there is no known permanent cure.
5. Regular erections are necessary for erectile tissue health. ED may prevent having the erections necessary to prevent erectile tissue atrophy, fibrosis and permanent loss of size.
6. I recommend men with ED work with a Men’s Health expert to develop a Penile maintenance program as they decide on the treatments and implant to prevent damage and loss of size
7. The IPP comes the closest to a permanent cure. For older men as myself it is seemingly permanent looking at my probable lifespan
8. For men in similar situation as myself: Older 65, Type 2 diabetic, Arteriosclerosis, hyperlipidemia etc. Eventual impotence is all but inevitable
9. My decision for IPP became a no brainer everything to gain and nothing to lose
Gene308
Gene308 married 43 years AMS 700 CX 21cm+2cm Implanted 10/04/2018 Dr James Hotaling (surgeon) and Mariah McCafferty, (Surgical Nurse and AMS rep) , University of Utah

Old Guy
Posts: 2517
Joined: Tue Mar 31, 2020 4:31 pm
Location: Ohio

Re: Helping men navigate the IPP process

Postby Old Guy » Wed Jan 31, 2024 3:35 pm

Nice Gene. As my past career was helping people I truly understand why you're doing that. There is too much posted about issues and problems and not enough about the positive.
Nov. 8, 2019
4+ years, Coloplast Titan OTR
Married 36 years to my beautiful young bride
Always here to answer questions if you PM me

gene308
Posts: 139
Joined: Tue May 15, 2018 1:37 pm

Re: Helping men navigate the IPP process

Postby gene308 » Wed Jan 31, 2024 3:39 pm

Thanks Mr old guy. I have read you posts. Please continue to help
Gene308 married 43 years AMS 700 CX 21cm+2cm Implanted 10/04/2018 Dr James Hotaling (surgeon) and Mariah McCafferty, (Surgical Nurse and AMS rep) , University of Utah

JohnHC
Posts: 166
Joined: Mon Apr 24, 2023 9:35 am

Re: Helping men navigate the IPP process

Postby JohnHC » Wed Jan 31, 2024 7:56 pm

Gene308 - very good info all the way through. I've been through several different kinds of surgeries, not just IPP's. Everyone needs to always try to find info and help wherever you can. Never be shy about asking questions, try to be blunt and straight to the point. Remember this is your body, you need as much info as you can get to make a informed decision. I spent months online, found this forum and got great info from several posts and members here. I also found lots of info online, watched plenty of videos, even somehow managed to watch a live operation from start to finish ( I had already watched several videos online but a first to watch it in real time ). I always try to find and watch a video of the surgery beforehand so I can see what's about to be done, and then try to get as much info on what recovery is like, how long it is, realistic expectations of the outcome, etc. I never rely on just what the Dr has told me, research beforehand has never failed me and kept me humble with realistic expectations of the outcomes
AMS 700 CX 21cm x 12mm with 1.5cm RTE, MS pump, and Conceal Reservoir. Implanted on 4-12-2023 removed and replaced 6-22-23 with the same, 1st implant surgery had pinhole leak in left cylinder. Now awaiting third surgery unknown failure.

gene308
Posts: 139
Joined: Tue May 15, 2018 1:37 pm

Re: Helping men navigate the IPP process

Postby gene308 » Wed Jan 31, 2024 9:17 pm

Good advice JohnHC?
Gene308 married 43 years AMS 700 CX 21cm+2cm Implanted 10/04/2018 Dr James Hotaling (surgeon) and Mariah McCafferty, (Surgical Nurse and AMS rep) , University of Utah

Lost Sheep
Posts: 6147
Joined: Mon Jul 04, 2016 11:16 pm

Re: Helping men navigate the IPP process

Postby Lost Sheep » Wed Jan 31, 2024 10:15 pm

Old Guy wrote:Nice Gene. As my past career was helping people I truly understand why you're doing that. There is too much posted about issues and problems and not enough about the positive.

It is natural that on a forum focused on male genito-urinary problems would have more posted about issues and problems than positive outcomes.
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

gene308
Posts: 139
Joined: Tue May 15, 2018 1:37 pm

Re: Helping men navigate the IPP process

Postby gene308 » Thu Feb 01, 2024 1:11 am

Lost Sheep, I have noticed how active you are on this board. I have also made note of how much great advice and guidance you have provided over the years. If there is a Hall of Fame for Franktalk advisers I certainly would nominate you.

What JohnHC and I are saying is that we are trying to be proactive in creating good outcomes. Correcting and dealing with problems after they occur is important, however preventing problems and disappointments before they occur is a worthy goal

Gene308
Gene308 married 43 years AMS 700 CX 21cm+2cm Implanted 10/04/2018 Dr James Hotaling (surgeon) and Mariah McCafferty, (Surgical Nurse and AMS rep) , University of Utah

gene308
Posts: 139
Joined: Tue May 15, 2018 1:37 pm

Re: Helping men navigate the IPP process

Postby gene308 » Thu Feb 01, 2024 1:18 am

I meant to include Old Guy in my response. Since my recent hip replacement, I haven't slept well. Seems my body parts keep needing replacement.
Gene308 married 43 years AMS 700 CX 21cm+2cm Implanted 10/04/2018 Dr James Hotaling (surgeon) and Mariah McCafferty, (Surgical Nurse and AMS rep) , University of Utah

gene308
Posts: 139
Joined: Tue May 15, 2018 1:37 pm

Re: Helping men navigate the IPP process

Postby gene308 » Thu Feb 01, 2024 1:28 am

BTW Lost Sheep you would make a fantastic Champion. Give Michelle a call tell her I sent you :D
Gene308 married 43 years AMS 700 CX 21cm+2cm Implanted 10/04/2018 Dr James Hotaling (surgeon) and Mariah McCafferty, (Surgical Nurse and AMS rep) , University of Utah


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