Peyronie’s Disease – very useful information

Probably interesting only to those with, or knowing someone close with Peyronie’s Disease, and to them it will be valuable

Here is a personal story and I hope physicians find it useful to hear how things look from the patient’s point of view. I’m sharing it after talking with a neighbor my age last week who has had similar male health problems I have had, plus a radical prostate surgery. He’s suffered for four or five years feeling emasculated, utterly unaware of this option. Evidently, neither his GP nor his urologist ever told him implants were an option–virtually the only option–for him.

I have been through so much the past two years, I am beyond embarrassment. Moreover, I did not have to have this operation because I did something immoral or illegal, etc. It is nothing more to be ashamed of or blamed for than a woman is for having an operation for breast cancer.

I hope this information drawn from personal experience will help others. Feel free to pass this along and I will answer any questions and would be interested to hear from health care professionals.

I had my penile implant surgery done Friday, July 27, 2012 at Rex by Dr Mark McClure and Dr Khera-McRackan of Landmark Urology on Blue Ridge Rd. I stayed at Rex Hospital one night.

Now, three weeks past being given the “all clear” by the surgeon, and at age 61, I have to say, this is not the best thing since sliced bread–it is much, much better.

Attached, three photos, one a screen shot of the implant diagram and the other two I took of the pump replica I was given after surgery.

Most medical insurance does pay for implants if there is a medical reason for ED such as venous insufficiency, arterial blockage, Peyronie’s, or the result of prostate surgery.

Some urologists don’t tell guys this, or even mention the possibility of an implant, or claim they don’t know if implants are generally covered by insurance.
GP’s and psychiatrists generally know very little about the subject and may or may not refer a patient to urologists. For experienced urologists, implant surgery is routine, though there are urologists who specialize in this.

Costs and Insurance

Rex billed me $47,121.33.
UnitedHealthCare settled for $18,223.21 (settled for, not necessarily actually paid them; UHC probably only actually gave Rex about $4,800 cash).
Rex “wrote off,” whatever that means, $27,032.32.
I paid Rex $1865.41 co pay.
I paid the anesthesiologist about $400 and Landmark Urology about $220 as co pays.

Insurance companies do generally require that pills and shots have been tried before approving the surgery, though that is just insane for a guy who has radical prostate surgery. For radical prostate surgery, it’s sort of like shutting down the power plant, but still requiring people to try to hook up electric lines to see if appliances work. Urologists should just tell the patient they’ll have to wait a few months and fill prescriptions for pills and then shots, so the insurance companies are satisfied.

For Peyronie’s there has to be curvature of 45 degrees or more for insurance to pay. Dr Richard Kane, MD and Dr Wayne Smith, MD certainly provided more than enough info and evidence of my Peyronie’s to satisfy the insurance companies. Anyway, I had tried pills, uretheral suppositories, and both TriMix and QuadMix shots. All of these either flat out did not work or were unpredictable from one time to the next if they would work. In any event, I still had the problem of progressing and severe Peyronie’s even if anything else had worked.

If a patient does not have insurance, they will find in the small print on the bill Rex will grant them an immediate 35% “courtesy” discount IF the patient asks. Of course, the hospital still makes out like bandits because the patient still owes them a little over $32,000 on a procedure Rex obviously made a profit on getting no more than $20,000 for— if UHC really did pay a full $18,223 in cash. So, there is still plenty of room for the patient to negotiate the bill down a lot further.

Nitty Gritty Details

The American Medical System pump replica that patients are given to “practice” on is given on a key chain (which is why there is a hole in one side of the rectangular area above the pump) connected to a plastic card with directions for useThe pump bulb use should be obvious–squeeze the bulb. Less obvious is the large, raised round button in the rectangular part of the pump above the bulb. That is the release valve to drain the penile tubes once the fun is over. Note, the three “smokestacks” are simply representations of the tubes leading to and from the pump. The whole system has no mechanical parts–it’s really just a self contained siphon system with the sterile saline reservoir behind the pubic bone and pump in the scrotum. Long, inflatable tubes are implanted on the left and right side of the penis in the corpus cavernosum.

My implant is model AMS 700 MS 3 piece series, however, there are different types made by different companies to address specific situations and sizes.

All men will lose at least a centimeter (2.5 cm – 1 inch) length, though some may regain original or slightly larger girth. About 90 % of implants are done on men who have had prostate surgery. In their case, size is restored to pre surgery length less about a centimeter.

The entire system can be inserted through a single one inch incision made in the top of the scrotum just below the penis.
The operation, performed under general anesthesia, takes about an hour. I stayed in the hospital over night because there was a catheter in me–standard post op for this. When a guy can pee 250 ml at a time without the catheter, the catheter is permanently removed. I was allowed to go home but still had to keep a Foley bag strapped on until I went to Landmark Urology the following Monday where I was re tested and they finally took out the catheter. Most men recover a bit faster and don’t generally see the surgeon until a month or so after the operation.

A fellow certainly wants to move carefully the next few days, but it’s not pain a few aspirin can’t handle. The penis is partially inflated for the 4 to 6 weeks recovery time so scar tissue impervious to bacteria can form around the tubes. Non Peyronie’s patients are told to keep the erect penis taped or braced up against their abdomen and to wear tight underwear or jock straps to keep the scrotum and contents pretty immobile while the surgery heals and some scar tissue forms around the pump in the scrotum.

In my case, I was told to keep the penis straight out at 90 degrees to counteract the curvature of the Peyronie’s plaque while scar tissue formed around the implanted tubes. That was really awkward, and the tip got fairly sore. While a 4 to 6 weeks long erection may seem like a blessing beyond fantasy, in fact, I could not wait to have a “flaccid” after nearly 6 weeks. The erection was not in the least erotic and is certainly potentially embarrassing in some clothes.

Dr McClure told me afterwards, that during the implant operation they found there was a lot of plaque present in me, but it was too diffuse for them to remove and too diffuse for them to cut any one area to relieve strain and allow some additional straightening. The implant does not overcome the Peyronie’s distortion 100%, but does to about 80% and certainly leaves me straight enough for penetrative intercourse. The urologists believe the implant will continue to straighten out the plaque even more. (The urologists’ phrase for bending an erection against plaque curvature is “modeling the penis,” though as a professional sculptor, I never considered I needed practice on that, and I have certainly been modeling it to some degree since I was 13.)

The pump adjusts after a while to hang lower than the testis. Fully healed, the implant is really not noticeable. Dr Drabick commented to me once he had six patients who have implants and he would not even know it if they had not told him.

There is no decline of sensitivity or ejaculation with an implant, except men who have had a radical prostate surgery will have less intense feeling of ejaculation for obvious reasons.

Since pills do not work for about 35% of men, and the shots do not work well for those with Peyronie’s, the implant is a huge improvement. It allows for spontaneity. It stays rigid for as long as desired, “come what may” so to speak.

In my case, the Peyronie’s was advanced enough my penis has shrunk quite a bit and it was, frankly, difficulty to find an area that was still thick enough to give a shot and not pierce the urethra. Moreover, some urologists believe the shots themselves promote more plaque build up at the site of repeated injections. Sometimes the shots did not work because I would have hit a piece of plaque, so not much medicine got into my system.

I also have blocked arteries in the penis and venous leakage in the groin. Even with shots or pills, the venous leakage meant things got too unstable and floppy if I were on my back. The implant is designed to add stability at the base as well so that is no longer an issue. Modern implants are also designed to support the glans as well. Earlier ones did not and that lead to acute problems with a floppy end on a hard shaft (sounds funny but isn’t) Also, since the implanted tubes on either side of the shaft essentially crowd out the cavernosum, insufficient blood supply created a cold glans neither partner would like.

No matter what, the only thing that can kill a romantic mood faster than having my mother or GirlScouts selling cookies suddenly show up, is when I say, “Excuse me, while I dash to the bathroom, see if the $100 teeny, tiny bottle of TriMix or QuadMix has come up to room temperature so I can fill a syringe, stick a needle in my dick, then whistle the Star Spangled Banner for ten minutes while we wait to see if it worked.”

The skin on the scrotum has no subcutaneous fat, so the implanted pump can be felt quite clearly. According to the manufacturer, the implant needs between 12 and 24 squeezes for full inflation. Initially, the pump was very, very hard to squeeze. I literally wondered if I should use a washrag wrapped around pliers to get it to squeeze the first time. It takes two hands, one to stabilize the pump while the other hand squeezes. With repeated use, it does get easier to squeeze over time. There is a definite sensation when the bulb is first finally squeezed tight enough to start the inflation. Later, it takes a lot of pressure to make the release button work, and the penis has to be “wrung out” once the release valve button is squeezed. The sterile saline flows back up to the reservoir behind the pubic bone.

Ultimately, both squeeze and release can be incorporated into foreplay.

Both my partner and I are in our early 60s and we take between 45 minutes and 90 minutes making love; a lot longer than 20 somethings. AND at 45 to 90 minutes, this is at least as good a work out as a trip to the gym could ever be.
She and I are both a lot more confident: she is more confident in when and what she asks for, and I am certainly more confident in initiating matters and feeling I can do well for both of us. We agree it does feel slightly different; not bad, just the implant takes a small amount of getting used to.

In the Triangle, Dr Culley Carson at UNC is highly recommended, though he stays very booked up; Dr Jalko at Wake Urology is also highly recommended. Dr Kane has retired. I worked with Dr McClure and McRackan at Landmark Urology. A number of urologists perform the procedure. The chief risk is infection from the surgery itself or short thereafter. The operation is not reversible since the cavernosum on both sides are squished or crushed with a blunt instrument to make room for the insertion of the inflatable tubes. Depending on how much is squished to one side, a natural erection may or may not be possible even with pills. In my case, it’s not, but I still have enough tissue there is some feeling of arousal before “pumping up.”

Shots are not allowed, of course, since they’d puncture the implants.

There is some evidence that regular daily use of a penile vacuum pump for three to six weeks before surgery greatly counteracts the amount of post op shrinkage for those having the surgery following prostate surgery. (Using a penile pump is a complicated exercise in itself and a fit subject for a bed time story another time.)

An absolutely indispensable web site for men is franktalk.org

For both men with implants and their partners, this is a resource I cannot recommend highly enough. The online forums of men who have had implants of all sorts is a resource most urologists and therapists should read and make use of, particularly if they want to understand how it all looks from the patient’s point of view.

For the unsqueamish, there are a variety of YouTube videos of the operation. After watching one, let me just say I am glad to be a sculptor rather than a urology surgeon.

My implant was made by American Medical Systems–see the three links below.
americanmedicalsystems.com

http://americanmedicalsystems.com/mens_erectile_products_objectname_male_AMS_700.html

http://americanmedicalsystems.com/mens_erectile_restoration.html

 

Please share your experience/response to this Post. I'd sure like to know, and it could be useful to someone else. You can click the Post's title to view the entire post, and Comment below, if you like. The "Name Field" will accept any name, so you can be Anonymous [Anon] if you prefer. You must enter your Email to post a comment, but your Email address will not appear publicly. Thanks, Dr Bob
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