Introduction and implant info

The final frontier. Deciding when, if and how.

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Introduction and implant info

Postby drjeeps » Sun May 19, 2019 9:00 pm

Hello all. I've been lurking here for about a few years as I've gone through my own journey.

I was diagnosed at 48 (December 2015) with a Gleason of 3+4=7. My PSA was lower at 4.2, however had ticked up 2+ points in 1 year. My only reason for being checked was due to my dad having prostate cancer at 61.
I had a biopsy and they found 4/12 spots positive and another changing. I did opt for the onco-typing (note: most insurance companies don't cover this - but the Genomic Health folks did. It showed a slow-growing cancer and they surmised I'd probably had this going on for several years at the time of discovery.

After much discussion, 2nd opinions, reading, research, and praying - my wife I and I elected surgery. My final justification was simply wanting the cancer gone and to see my future grand kids with the hope of no future cancer issues.

Until this point in life, I'd been totally healthy, but have a family history of many types of cancers (mother passed of a GBM at 55 years old/father had prostate at 61 and passed of lung cancer (non-smoking type) at 71. I had zero issues with urinating and ZERO ED issues. I ran a 5k the week of the surgery and thought I'd have a quick recovery. And, I did...minus what you'll find below.

Due to the slow nature of the cancer I had, I was able to elect to delay the surgery 6 months to allow us to get through our summer plans, etc.

I had the surgery at 49 (September 2016) and I'm 51 now. At 30+ months post-op, I can share a few things: Shrinkage? Yep! - at least an inch, if not more (probably 1.5"). Incontinence? 99% of the time, I'm great! I can run, work out, sit for long times, drink coffee, beer, etc. I might dribble a tiny amount if I am not prepared for a sneeze. The big one: ED? ABSOLUTELY!!! Pills have zero effect. I've been on Cialis forever. No dosage amount does anything for me. My vascular is perfect (validated and tested via an ultrasound both flaccid and with bi-mix) and my nerves were spared - but no natural erections.

After surgery, my doc said that my prostate was about 3x the size of normal. As a result of that he believes that may be part of my ED issue - that the nerves were pretty stretched prior to the surgery.

I've used tri-mix with success and have a complete erection with only .05ml. Even at such a ridiculously small dose, it worked too well (4+ hours) and was very painful. My doctor switched to bi-mix and that works just as well at the same dose with no pain. However now I've developed a 30-degree list to port as I've developed Periones (PD). No idea how it happened, but one night during sex, I felt a "pop" and it started then. Nothing crazy was going on, just happened and hurt like heck.

At 32 months post-op, I'm fed up. I can easily administer the shots, but that rules out easily travelling with it (needs refrigeration), lack of spontaneity, and frankly - with a shot, it doesn't look natural to me (boomerang effect aside). The glans has always been out of proportion (Smaller) with the shots. Doc is pretty sure it isn't going to get better and the PD is just the icing on the cake for how disappointed I am.

So...heading to the doc on the 24th to talk implant. My doc (Daniel Mazur of Urology Specialists in Denver) is listed on Dr. Eid's website as an AMS resource. Dr. Mazur does both AMS and Coloplast, but says he leans toward the AMS. The AMS rep will also be there that day to talk/see the pumps. I've got the card with the pump example, so I know what it looks like and have done about a million hours of research on this subject.

The doc did do a pre-appt. submittal with my insurance and they declined it. I've filed an appeal with a mountain of documentation. My company apparently took if off of options when they signed us with this insurance company. The insurance plan does state this: “Reconstructive Procedures are services performed when the primary purpose of the procedure is either to treat a medical condition or to improve or restore physiologic function for an organ or body part. Reconstructive procedures include surgery or other procedures which are associated with an Injury, Sickness or Congenital Anomaly. The primary result of the procedure is not a changed or improved physical appearance.”

My argument is that this procedure is not for cosmetic purposes – it is to restore physiologic function to my penis.

I'm way too young, and my wife and I are (were!) way too sexually active to settle for a life of lousy sex. I'll check in after the 24th and let you all know the results, but thanks for all the subject material that I've been able to read - the real-world examples and info you all post has been outstanding.

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Re: Introduction and implant info

Postby David_R » Sun May 19, 2019 9:54 pm

Best wishes for a good outcome, brother.

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Re: Introduction and implant info

Postby RJ1000 » Mon May 20, 2019 9:20 am

My medical history is very similar to yours. First Peyronie's then a year and a half later surgery for prostate cancer (3+4 gleason). Also lost around an inch and a half penile length.

I have original medicare so insurance was not an issue. My understanding is that if you have ED caused by prostate surgery or Peyronies, then your insurance should cover your implant. Peyronie's can be painful so also mentioning that in your insurance request might be helpful.

Regarding the actual implant, most urologists will suggest the AMS 700CX or the Coloplast Titan for patients with Peyronie's Disease due to the structural damage to the penis (shape, bends etc) caused by Peyronie's. I have the CX and am happy with it although I probably would be just a happy with a Titan.
Age 66. ED caused by Peyronie's with hourglass deformity 2016. Prostate Surgery 2017 and now cancer free. Implanted Jan/2019 by Dr. Kramer. AMS-700-CX (21.0 cm with 0.5 RTE).

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Re: Introduction and implant info

Postby MK1965 » Mon May 20, 2019 10:30 am

You had your RP 2 months ahead of me (11/2016). I was 51 y/o at time of dx and surgery. My recovery was very similar to yours with greater loss of length of 2+ inches after RP.
I was not ready to say goodbye to my sex life so at 20 months post RP, I with my wife made decision to get penile implant and was implanted at 22 months post RP (9/5/18)
I received TITAN. Now, 8 months post implant (difficult first 4 months) I am happier day after day. I am still behind many on this side with my progress, but it is moving in right direction.
If you like private chat, I can give you my phone.
As of Insurance, implants after RP have valid reason to get covered and your surgeon should know ways how to get approval.
I had Aetna and my implant was covered. My cost was $ 1450.00 out of pocket.
Wish you good luck and soon insurance approval.
IPP 9/5/18; Coloplast TITAN OTR 18 cm 1cm RTE, Dr. Khera Baylor Houston,Prostate Ca at 51 y/o; RARP 11/2/16, ED Post RP, Cialis, Viagra, VED no usable erection, April 2017, TRIMIX painful, BIMIX tolerable but ineffective,lost 2+ inches of length after RP

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Re: Introduction and implant info

Postby drjeeps » Mon May 20, 2019 4:30 pm

Thanks for the welcome and info. I am hopeful based on what I've read here that this will be a great solution for us.

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Re: Introduction and implant info

Postby drjeeps » Fri May 24, 2019 10:38 pm

The fetching Mrs. R and I spent over two hours with my urologist/surgeon and the AMS rep. Both separate and together. I had over 2 pages of questions in total, broken into implant and surgery questions. I had each one answered to my satisfaction. Both the doc and the rep were impressed with my questions and organization/research.

With my previous appointments and the recent stretch test, the LGX is what my doc is recommending.

I have also been able to speak with a few members here by phone - I sincerely appreciated the encouragement, the information, and the frankness of the discussions.

After much discussion, I'm going to go through with it. Once I can get the insurance on board, I'll let you know how it progresses!

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Re: Introduction and implant info

Postby drjeeps » Mon Jul 08, 2019 10:48 pm

Well. Fighting the insurance. Already been rejected, appealed, rejected again. My Urologist is meeting with the insurance people to do a WTH phone call tomorrow. He's almost as pissed as I am. Almost...

I also threw away my bi-mix and needles. Went to use it and simply walking into the bedroom as I was erect, there was a distinct "POP". The wife even turned around and asked it that was my penis! Why yes, it was and now it hurts like heck. So much for that. So, I'm guessing it was another tear or fracture. The bend looked about the same but I'm now noticing I'm bending while flaccid. Awesome.

I've spent hours on the phone with my HR Benefits people (it's my company plan blocking it) and am setting up for an even bigger battle.

One interesting thing about our plan - it covers the following:

Benefits for the treatment of Gender Dysphoria limited to the
following services:
 Female to Male:
 Bilateral mastectomy or breast reduction
 Hysterectomy (removal of uterus)
 Metoidioplasty (creation of penis, using clitoris)
 Penile prosthesis
 Phalloplasty (creation of penis)

It is this last part that I find most ironic as a Phalloplasty requires an implant-type of device for the person to achieve an erection. The fact that this plan covers this for gender changing services such as this and not for a biological male is completely appalling and reeks of prejudice towards me as a man.

More to come after I get a stiff drink. At least that will be stiff...

Lost Sheep
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Re: Introduction and implant info

Postby Lost Sheep » Tue Jul 09, 2019 3:48 am

This may be tantamount to premature litigation (malapropist pun intended), but the threat of legal action for discriminatiry practices might shake loose an approval, (if only provisional for yoir case).

It may do nothing for other men under your insurnance policy but could serve you well enough.

Consulting an attorney might inform you of appeal tactics that could produce results.

A mere letter from an attorney requesting information is sometimes enough
Last edited by Lost Sheep on Wed Jul 10, 2019 3:15 am, edited 1 time in total.
Lost Sheep
AMS LGX 18+3 Nov 6, 2017 Dr Shaw.
READ OLD THREADS to ask better questions and better understand answers.
Make yourself part of your medical team.
Document your current penile size: photos and written records.
Pre-op V.E.D. therapy helps.

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Re: Introduction and implant info

Postby navy6587 » Tue Jul 09, 2019 8:39 am

drjeeps...what a wonderfully detailed account. Thank you for your time and information. Two pages of q's and your doc AND rep answered to your satisfaction!!! WOW!! Consider yourself lucky...I had no such concern by my two surgeons and absolutely NO rep input to my q's directly to her. Even the Virginia Urology CEO had no luck when she recommended the local Coloplast rep contact me. Don't know what it is about Southeast Virginia but since you're happy thus far, don't ever contemplate coming here for an implant.

Much luck and success in your quest. Seems like you've run the gamut of investigation and research to your (and spouse's) approval.

72 y/o; wed 50 yrs; ED 15+ yrs. Fired by 1st doc (Szobota - VA Uro) asked too many q's & contact w/ Coloplast rep. New doc: Ellen (VA Uro) implanted 11/8/18. 22cm Titan + a 2cm RTE each side; moron doc, intake/ dischg nurses! Will NEVER do it again!

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Re: Introduction and implant info

Postby David_R » Tue Jul 09, 2019 9:34 am

drjeeps wrote: Penile prosthesis

"Penile implant" is simply the common name for a penile prosthesis (doctors trained in implants are called "prosthetic urologists"). I wouldn't think that you or your doctor would be fighting if a "penile prosthesis" were covered. Kinda confused here :? (unless you meant that an implant is covered for gender dysphoria but not for other reasons [like E.D.]).

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