Surgery for Peyronie's Disease

[Joshua]

Discussion on any of the different surgical treatments of Peyronies Disease including implants.  Have you undergone these treatment or are you contemplating them?  

[mezz]

I am hoping to determine if anyone is aware of the top Peyronies Disease surgeon in Ontario? I am being referred to a Dr. Brock in London, who apprently has trained under Dr. Lue...but as it looks like I will be requiring surgery to correct my Peyronies Disease, I want to be sure that this guy is the best.

I'm slightly devastated that it looks like surgery is the inevitable option for me. When I first posted on this board, my bend was around 45 degrees, and post-verapamil injections, I am now around 80 degrees bent. I am pretty sure that this degree of bend would effectively prevent any possible chance of sex. Does anyone know what the maximum degree of bend would be that would still allow for intercourse? I seriously don't want this surgery. This is all over the course of maybe a year and a half, and it has just got worse and worse.

I know you're supposed to wait till it's stabalized to have the surgery, but I'm a damned 25 y/o good looking guy who hasn't been laid in about a year and a half due to my confidence issues around this condition. It's not even confidence, though- it's the concern that sex is not physically still possible for me at this point. To say that this has had a significant impact on my social and emotional health would be a gross understatement.

Don't a lot of you guys think "the surgery isn't my ideal solution, but atleast it offers a solution, unlike all of these mediocre treatments?". Cause that's my train of thought right now. I don't know how anyone could survive in this type of limbo for years and years.

I haven't yet tried a VED, but I've been told my Uro that it would be pretty useless at this point anyways. I did a run of colchicine, to no effect. My case is severe enough at this point that I don't believe that less invasive answers will likely yield practical results. I've thought about doing a course of the Pentox, Viagara, NO2 regimen that seems to be somewhat popular- but again, I don't expect to get meaningful results from something like this.

What percentage of people that undergo surgery find it to be successful? Any anecdotal reports from those that have undergone it? I've read a couple of accounts of those that have undergone the surgery, but am more interested in hearing from those that are regulars here and have considered this option themeselves.  

Sorry if this was supposed to go in the 'surgery' section of the board- feel free to move it there if that's required...personally, I prefer a more individualized method of topic creating.  

[Joshua]

Mezz,
Thanks for posting and welcome to the forum. I am sure when all the other guys get moved onto the new forum here that you will get some good answers to your questions.  I do want to tell you that my situation was very very bad at one time. I thought I was done as well. Then it seemed like out of the blue when I thought the Peyronies Disease had beat me, the disease started reversing. I started getting better. My advice to you is wait longer. You are young and that is a good thing. Try every option before surgery! I have read to many horror stories with the surgery. I would give it a year more (at least) and try everything you can. I also would try shockwave therapy before I would try the surgery. Try the ved. Look at every option and then decide for the surgery. I think something is about to break with this disease. If you are not suffering with any ED just a curve then please don't even consider surgery yet. Try the VED.

Joshua

[Old Man]

Mezz:
Just a note from the Old Man. I too have been a Peyronies Disease victim since the age of 24 and have seen many and varied treatments in the last 51 years that I have had it. Sometime in the near future, I plan to write my historical informaton on that thread about the treatments good and bad that I used in search of relief from this horrible mess.

But for now, just wanted to let you know that Joshua is right about trying the VED. Used properly and with extreme caution, it can and will help with Peyronies Disease. Also, it is an excellent aid for ED if one has that problem too. Since I had a radical retropubic prostatectomy in 1995 at the age of 65 (now nearing 76) which left me totally impotent, the VED has been the "weapon of choice" for my Peyronies Disease and ED. All the injections (gave me more Peyronies Disease symptoms) for Peyronies Disease and ED, as well as the ED pills did not work for me.

I will be glad to work with you if you should decide to try the VED, as I have over 10 years experience with the VED being used for Peyronies Disease and ED.

Old Man

[mezz]

I greatly appreciate any feedback, guys.  

Joshua- I too am cautiously optimistic about potential treatments that might be effective.  The collagenase(sp?) trials, specifically, as well as the Viagara, Pentox, NO2 regimen that seems to be gaining some steam.  

The ESWT strikes me as intriguing, and at the same time dangerous and probably ineffective.  I'll admit that's based on a reasonable degree of 'gut instinct' after reading about the treatment...It's also expensive, and as I'm only 25, resources are a major issue for me.  Not to say I wouldn't consider the treatment if it was shown to be worthwhile.  What feedback are we getting on the efficacy of ESWT?  Being in Canada would be one positive, I guess- being that it's close.  

I've already been through 6 Verapamil injections- with only a worsening of my condition...so the verapamil aspect of the treatment is already somewhat tainted from my perspective already.  

It would definitely be unfortunate to jump the gun a bit on surgery only to have something come down the pipeline that might've provided a safer solution.  

I'm left asking myself, though, whether something of that nature would cure my 'almost' 90 degree curve?  I mean, this isn't a 30 degree curve we're talking about here.  It is severe.  

I'm emotional at this point, because I am going back to school in September, after an absense where socializing and sex wasn't a priority- and I haven't had to deal with the social/psychological aspect of this as directly to this point.  Ironically, this last period is also when the acute symptoms have become apparent.  I'm getting registered, and I get a couple of looks from cute girls, and I realize- there's nothing I can do with that.  I think I'm going to have to get some counselling or something.  I am only now beginning to fathom how monstrous and cancerous this will probably become within my self-concept and emotional well-being.  

Joshua, you're saying that it's a good thing that I'm young and this is happening- but I can't help but question that.  Atleast if I was older I would be through my sexual peak at that point.  Maybe it's good in the sense that there might be a treatment solution found in the next while that could prove useful.  Honestly, though, on the scale of what I would need- I don't see it, outside of surgery.  

I am so nervous and cautious about surgery that I will probably heed your advise and avoid taking action at this point...regardless.  I can say that the acute phase of my Peyronies Disease has only really occured within the last two years.  Maybe I can hold on to the notion that it might not have fully stabalized/calcified etc.  It's bad though, even subjectively.  We're talking plaque along the whole left side of my shaft with a marble-like nodule mid shaft.  

I will definitely need some counselling or something, cause I don't know how I can go without sex after not being sexually active for the last year and a half, and now being in an environment with nothing but attractive young girls who are interested.  It makes you panic.  

My urologist said to me during my last visit, where he gave me a referral to another specialist, where I will get the sonogram and other such tests, that "you can't go on living like this".  I agree with him, and that's what has me pondering the surgical route.  I wouldn't be considering it in the least if I was around a 30 degree bend.  

Old Man, thanks for the encouragment.  I've been thinking of the VED as a next phase in my attempt to combat Peyronies Disease non-surgically...but again, my Uro said to me "a VED or colchicine is not going to straighten your penis" and I've gotta admit that it sounded pretty intuitively reasonable to me at the time.  Again, is a VED something that would be a possible remedy for someone with a smaller degree of curve, but not something on the scale of what I've got?  I don't know, so if you're saying it might be of possible benefit, I will listen to that advise.  To be honest, i don't even know how I would use it, considering the degree of curve and twisting I've got is close to 90 degrees.  

The quality of my erections are pretty good.  I'm not experiencing any ED at this point. *knocks on wood* pun intended.  Would you still recommend a VED considering my problems seem exclusively Peyronies Disease related?  

I'm concerned that I'm going to do myself irreparable pyschological harm if I'm forced to close myself off from intimate relationships for another year.      

[dcaptain]

mezz,

i read through your message and i have to tell you that i fully understand where you are coming from mentally/emotionally.  i know probably every guy on here does.  i'm young too (30), and am currently dating no one.  i've met a number of just great, decent, smart girls over the past few months that i would love to have been able to ask out, but haven't.  it's very difficult and it does get to me - i really can't believe how much at times.  i'm considering counseling as well, although i have to admit that i have no idea how i would explain this to someone who doesn't have it.  i'm pretty sure counseling is probably the best bet for me, though.

nevertheless, hang in there.  your decision to wait on surgery sounds wise to me (i have only really tried some of the supplemental treatment thus far).  but the guys on here definitely know what they are talking about.  please keep using this forum - that's what it's here for.  it's great to have you here.

dcaptain

[bob]

Mezz: The Dish network service that comes into my home includes a channel called "FSN." One of the programs it carries is from Canada called "My Messy Bedroom." It aims to be an uninhibited discourse among unattached, attractive women about all aspects of sexuality ... and oddly enough, of the few shows I've seen, the discussion often drifts into the topic of penile peculiarities. The real attractive brunette on the show piped up about how much fun she had with a "bendie" on one exploit. It's worth a watch, and it puts the problem of Peyronies Disease into an entirely different perspective. So my advice to you is not to think twice about spending time with those cute girls who catch your eye - or vice versa.

From an older person's (49) perspective, my gut feeling is that women are more tolerant of physical shortcomings than we might think they are.

Bob  

[Old Man]

Mezz:
There are many aspects to the problem of Peyronies Disease. First, it is truly a devasting feeling to find out that you are sexually impaired to the point of not being able to perform. As I said, mine developed at age 24 and I thought that the world had come to an end. Back then, there was not much in the way of treatment except the usual "take lots of vitamin E" wait 6 months to a year and then come back to see me! I did not accept that, however the vitamin E was tried along with many other home remedies that folks gave me to try. Little by little the curve and nodules went away but not entirely. Finally, a radiologist friend of my doctor cousin suggested we try radiation therapy and that seemed to work and the old tool straightened out again.

That is just some of the things that I tried over the period of about 2 years. Many years went by and Peyronies Disease just came and went on its own several times. Finally in 1995 after prostate cancer surgery, it came back with a vengenance! Tried the verapamil injections which only increased the symptoms. All the ED drugs were tried for my ED with no help.

On one visit to my lady urologist she asked how the Peyronies Disease was doing and of course the answer was no good. She had been interned at a VA hospital in Georgia and had worked on the urology ward for several years. That gave her quite a bit of experience with vets who had Peyronies Disease and ED problems. She had prescribed the VED for therapy for these guys and most had great success.

The bottom line is that she and I worked out a routine of therapy with the VED wherein extreme caution was used to preclude further damage. I used the VED for about 4 months using our regimen of exercises and had great results. After about 6 months the Peyronies Disease was entirely gone. Along with the VED regimen she prescribed 1200 I.U.s of vitamin E to keep the blood flowing freely being an antioxidant. Together, the VED and E apparently caused the severe plaque and nodules to dissolve and go away.

Today, I am virtually symptom free of Peyronies Disease. In my opinion, there appears to be not conclusive "cure" for Peyronies Disease once it has established itself in the tunica area. It can go away, but there is always the possiblity of it coming back.

What I am saying is that the VED can and will help rid one of Peyronies Disease, but it is only fair to say also that it does not help all. There are some cases that seem to resist any and all therapy. So, I am giving you the benefit of my history with Peyronies Disease in hopes that it will provide you with some insight about the disorder. Also, I am also stating that in my humble opinion that surgery is the absolute last resort. Once done, there is no turning back especially if it is being done for ED purposes since that form takes out the erectile tissue in the corpus arear. Surgery for Peyronies Disease is the lessor of two evils and does have great success when done by a doctor who is well experienced in Peyronies Disease treatment and/or surgery.

Again, as I said in my last post, if you decide to try the VED therapy, exercise extreme caution when doing the protocol for the unit that you decide to use. Should you wish to discuss your situation more in private, please email me at the addressd given in my profile.

Sincerely, Old Man

[Larry H]

Mezz,

You have received some excellent advice from all, and I'm going to give you another slant on this for your consideration. Surgery is a last resort consideration. There are some horror stories about Peyronies Disease surgery, but there seems to be more and more success stories as well. I think if you did research into each story you would find that most of the horror stories go back to an inexperianced surgeon. So your desire to find one of the best is on the money, it's critical.

Men without good erectile function are not considered good candidates for surgery, so you don't have a problem in that area. So as another option I would consider making an appointment with a well known surgeon who's practice is genitourinary reconstructive surgery for an evaluation of your condition.

One doctor that comes to mind is Dr. Gerald Jordan director of urology at Devine-Tidewater Hospital in Norfolk, VA. This is about a days drive for you if you are in the London area, and of course it's all an out of pocket expense for you in coming to the states. However, if I were in you position I would want to be evaluated by the best even if I knew I would have to be treated elsewhere. You simply cannot have too much information concerning your disease. It's also possible that Dr. Jordan or whomever else you may see could give you the name of a good urologist in the Ontario area.

I have personal knowledge of Dr. Jordan so that's why I mention him. His practice is almost exclusively adult and pediatric genitourinary reconstructive surgery, and he is known and respected worldwide, and has done over 2000 surgical procedures for Peyronies Disease. The cost for the evaluation is about $400.00.

I'm not suggesting that you have surgery, I am only suggesting that you be evaluated by an expert to know the true nature of your condition so that you can best consider your options. You are too young not to be active in fighting your disease. This also works wonders in helping you with the mental side of Peyronies Disease.

Old Man has written you about the VED. If you choose that as an option he has a wealth of knowledge and could be of immense help to you, he has helped many and is a fine person.

On a personal note, unitl a year or so ago I thought surgery to correct the effects of Peyronies Disease was out of the question. However, I'm changing my view after hearing so many success stories from men who have had the surgery. You are not returned to a pre Peyronies Disease condition, and it takes some months to properly heal and regain full sensation, but it has helped many, and I wouldn't run away from it if it became my last option.

I hope all of this is of some help.

My Very Best,

Larry H

[j]

I agree with Bob that this is one subject where age gives you a helpful perspective. I can tell you from personal experience that a bend or curve is much less of a problem from the woman's point of view. Once I got to the point, psychologically, of starting to open up to my wife about it I was sort of surprised by her casual acceptance of the change. And for a lot of us, that's all it is - a change, not necessarily a significant impairment.  90 degrees of curve sounds like a lot but it depends on where it is and how it's distributed. Also, the female anatomy can accomodate much more variation than you might think. Evolution wants this process to succeed and has made built in plenty of allowance for individual differences.  

Excuse my crudeness in pointing this out, but - do a Google search on "curved dildo" to see what I mean.

Mezz, another question which I think is important: are you confident of the Peyronies Disease diagnosis? Peyronies Disease is rare at 25, not unheard of but - like Dupuytren's Contracture and Lederhose disease (2 other manifestations of the same condition) it usually shows up much later in life. Do you also have any fibrosis in the hands or feet?

[bob]

All this is, of course, not to minimize your individual condition and pain. My indentation-caused curvature is somewhat less pronounced than yours, but it bothers me a lot nonetheless.  I feel kind of deformed. I can take comfort in the fact that that isn't my wife's sentiment - it's my own hangup. I just have to do what I can and get past it. My hope for you is that you won't let it paralyze you.

[j]

Bob is right.  Despite all the positive 'spin' I can come up with,  I still feel very frustrated by it.  It's a damn hard thing to accept.  But some sort of acceptance is the only way out of the psychological box, short of surgery.

More to the point, I wish I could say that no one should have surgery until we see if AA4500 (collagenase) really works. But it's been just over the horizon for about 8 years now. Who knows.

My own conclusion is that none of the currently available therapies have any value, except maybe extended, careful use of a VED, which I haven't tried; I suspect its success depends on the specifics of the case.

[mezz]

Well, the feedback is certainly appreciated.  It may well have actually delayed my decision to have surgery, so if in some hypothetical world I may have had it and regretted it- than the communication certainly carries a lot of meaning for me at this time.  

There are a few issues to respond to...maybe the first being the use of a VED.  I tend to be in agreement with 'j' that my take on available treatments at this point is relatively pessimistic.  The VED option looks like the best one.  Considering that regardless of what solution or 'holding pattern' I try to pursue at this point, it would seem that this condition is here for the long-haul, and that increasing my general penis-health through the careful use of a VED might be prudent regardless of what course of action I choose to take.  

My instincts tell me that there will probably have to be some form of 'mechanical' form of treatment for me to see a significant degree of effect.  Obviously caution is the name of the game with that- but there is some appeal to me in that option.  One of the things that has discouraged me from the use of a VED till this point, is that it hasn't met with a great deal of approval when I've broached it with my urologist.  However, if there is one thing that I've begun to gather through this process, it's that we're probably a better resource for each other here, especially with people like Old Man who've been dealing with this for such a length of time.  

I'm telling you, the cost factor in this is a significant problem for me.  Obviously, you find a way to do it, because this is not something you play around with- but those VED's are not cheap...atleast the good ones.  I'm also considering the ESWT treatments, although I'm very skeptical about those- and there again you're looking at a fairly large outlay of cost.  

I could give a 'cut and paste' of some of my progression, as far as my decision making and whatnot, if anyone would find that useful in terms of contextual information...or to give something of a case history.  To elaborate a little further about the current state of my condition:  about 3/5 of the way from base to tip is where the indentation occurs.  I've got the banded effect, atleast I think I do, at that point.  I then have around an 80 degree curve that goes left from the point of indentation.  I now have a 90 degree twist, so it's both curved and twisted downwards by appearance.  It looks bad, subjectively.  The plaque itself runs along the left side of my shaft, with a 1cm marble type nodule centered just behind (subjectively to me) the point of indentation.  

I wish I was just looking at a discrete nodule.  I think the plaque that runs less discretely along the left side of the shaft might the result of the verapamil injections, as I would say I was subjectively at around 45 degrees before and during most of the treatment course.

I still actually have some pain associated with erections, so it makes me wonder if this thing hasn't even stabalized yet... which I know would contraindicate surgery.  Interestingly, my erection quality is still pretty good, all things considered.  

Larry, I'm going to give some serious thought to going down for an appriasal before I make any concrete decision about surgery, if it comes to that- and I'll seek out the doctor you recommended.  



As far as responding to the issues of how this effects your actual life...
The responses about those issues are especially valued by me at this point, because of the emotional state that I am in as a result of this mess.  I do intend to seek out some counselling in the near future, as soon as my day to day life calms down a bit.  

I think I could 'eventually' get over the shame and confidence-devastation that the deformity produces, if I knew that I could still be functional.  That would certainly help me to enter some stage of 'acceptance' quite a lot.  From my own pre-conceived notion, it would seem to me to be something of a physical impossibility that intercourse would be physically possible in my current condition.

It seems that it's possible, based on some of the feedback I'm hearing, that it might not be impossible.  I would be very interested in knowing more about what is physically possible, in terms of what women's anatomy can tolerate without discomfort.  That's a real grey issue to me, and I'm surprised it hasn't been discussed more directly.  Maybe it has, but I just haven't seen it.  

I can't imagine hooking up with some girl, only to find out that when it gets down to it, that intercourse isn't possible.  That would be very devastating to me...as I'm sure it would be to any guy.  I could maybe understand an upwards curve being alright for women, with the g-spot stimulation, but it's difficult for me to imagine my current state wouldn't produce some discomfort.  Am I wrong on that?  I would really love to have some idea of what's possible and what's not, before I risk entering into a sexual encounter where I don't know what would actually be feasible.  


j, you also asked about a confirmed diagnosis.  At this point it has been confirmed by my Uro.  I'm pretty atypical, from what I can gather statistically, as far as my age of onset.  I know Old Man said that when he was taking Proscar (I'm assuming?) for his prostate, his Peyronies Disease flared up.  Proscar is the same drug used for hair loss by men, marketed under the name 'Propecia'.  I'm telling you, I could be wrong, and I try to be somewhat rigorous, scientifically, in what I'll accept as tenable theories for things...but I have serious questions as to whether Finasteride caused my Peyronies Disease.  Apparently there have been studies that have implicated a weakening of the Tunica with finasteride administration in rats.  

I don't know...at this point it's probably somewhat moot.  Although I wonder if there could be a class action at some point...?  If research was to show an actual link.  

[nick]

I am taking the Neprinol that didn't work for CDM. I have had really good luck with it. I had to play with the dosage alot. When you ask the company for dosage I think they pull the number out of their hat. I wasn't sure if the neprinol was working so I stopped for 2 months and really regret doing so. I have tried a wide range of enzymes. Through my research it seemed that nattokinase and serrapeptase were two of the strongest. I also tried bromolain, papain, lumbrokinase and all kinds of blends like Vitalzym. They Vitalzym worked a litte bit I had to take about 30 a day. That was like 3 bottles in a month. at 40 to 40 $ a pop I went for the Neprinol. It is stronger so not as many pills in a day. So it didn't work for you CDM.  

[juma]

I recently bought a couple of hardly used VED off ebay for about $50 each. They are both the Esteem model advocated by OM.  A pass through the dishwasher and they are as good as new (but not the pump part).

juma

[crookedselfesteem]

Let me preface this by saying that, as a physician myself, I am appalled at the apathy we face from most urologists.  When I first suspected I was afflicted (at age 42), I tried to curbside two separate urologists I work with and was given the old, "Yup, that sounds like what you have all right...take some extra vitamin E, etc..."  Well, I have been taking extra vitamin E since I was 22, so I think it would probably have worked by now if it was going to.  Oh, and one of them said that it resolves on its own in a third of cases anyway, so I should just wait it out--which in my mind means that it DOESN'T resolve spontaneously in the other two thirds.  
I sent emails describing my condition to experts in the state of Florida (I had personal reasons for limiting myself to local docs) but with no response.  All I wanted was guidance and hope.  I finally found a local urologist who at least saw me formally and put me on colchicine and potaba, so at least I felt I was not just doing nothing during my 18 month wait-it-out period.  

Naturally, nothing good happened.  I went back for my six month follow up and my urologist told me that I should be dating (I didn't mention that I was widowed not too long before all this started) and I should be happy it (my dick) didn't get any worse!!!  

In desperation, I made an appointment with "The Penisdoctor" in Miami--found him on the internet and he had good before and after photos.  I admit this is not the most optimal of finding a surgeon, but I was desperate...and depressed enough to do just about anything.

Long story (sorry), but I ended up having plaque excision and Tutoplast (cadaveric pericardium) graft in early July.   The only really horrible thing about the whole experience was that for about 6 weeks, I had the most horrifically painful nocturnal erections.  Pissing while wearing a compression dressing also was no cakewalk.  This has passed though.  My glans is still numb, disconcerting, but expected--fortunately the feeling is slowly returning.  After all this, though, my erections have improved only slightly.  The waist deformity is slightly improved and the curvature, as seen from the side has decreased from about 38 degrees to about 30 degrees.  But it still looks like a banana wearing a corset (and it is still about 30% shorter than it was before Peyronies Disease).  My first questions for any of you out there who have had surgery are these:

What degree of initial improvement did you end up with?  I was told that with VED, my result should continue to improve, as the graft material is "stretchier" than the native normal tissue elsewhere.  Does it actually get any better?  Do I still have any hope?  I would sure as hell not go through what I went through just for my present "improvement."  Incidentally I have been doing VED as often as I comfortably can, but I cannot muster the 20 minutes 3 times a day that was recommended.

I do NOT like the idea of more surgery on my penis, but I would be willing to have an implant placed, IF I could find someone to do it.  I read somewhere that grafting plus an implant would be curative.  But I am told that the implant doesn't last forever, and might need to be replaced in 10 years, that the risk of infection is higher with redo's, and you can loose additional length with second surgeries.  So, in order to preserve my options of having an implant (and a sex life) when I am in my 60's, I should forgo the idea of an implant (and a sex life) when I am in my 40's.  IS THIS NOT DAFT?  So my second set of questions:

Anyone here have an implant?  Did it work?  How old were you when you had it, and, if you answer in your 40's, do you have any surgeon recommendations?  Also, as a general question to those who have the 3 piece inflatable type implant, how long have you had it and did you get any feeling for how long it might continue to function before needing surgical revision?  And, if you don't mind my impertinence, when the implant is erect, does it feel as hard as your natural erections were (at the time before you developed Peyronies Disease)?

My social-sexual life remains a shambles, and at the worse time in my life.  This wall of silence and apathy that I have encountered in the medical community still astoudsn me.  In part, the lack of social awareness of Peyronies Disease results from our understandable reluctance to discuss this subject in public.   But I'll be that if there were a comparable non-cancerous breast-withering disease in women, there'd be lots of funding for it...and ribbons and wrist bracelets...or am I just being cynical???

[bob]

I feel your pain. Well sort of. I haven't actually gone under the knife, as you have, but I DID submit myself to six verapamil injections. This condition truly bites the big one, pardon the pun, because it's not something you can just drop at a barbeque...

Me: "I'm spending hundreds of dollars on this experimental treatment at a doctor in Manhattan."

Them: "God! What's the matter with you? Is it life threatening?"

Me: "No, I have something called Peyronie's Disease.

Them: What is that? I've never heard of it!

Me: "It's a disorder of the penis..." and so on....You can just imagine the cringes. You would get the kind of stony silence expected from people such as Brie, the cold readhead on Desperate Housewives.

It's also a rather politically incorrect condition as well. Large companies must bend over backwards to accommodate conditions such as transgender (which necessitates a completely separate restroom - this is something that truly happened) ... while Bob Dole was the butt of jokes about ED and some of us can't even begin to describe Peyronies Disease to relatives.

Your description of your surgery was interesting. I was curious about the fact that with a 40 percent bend, you went under the knife. Forty percent seems relatively mild to do that. Was this guy one of those people who cut penile ligaments, supposedly giving you a form of "natural male enhancement?" Moreover, how long did you wait before commencing the VED exercises?

Bob

[crookedselfesteem]

I am pretty self-conscious, so to me, a recently re-single guy, even 40% is bad.  But after posting that, I read posts from guys younger than me with curves greater than mine and I was sort of embarrassed for having complained.  The question to me is not whether I can stick it into something, if you'll pardon the imagery, but if I dare let someone I just started dating see it.  I am pathologically shy to begin with, and despite being in good physical condition (otherwise) and professionally successful, I was teetering on the brink of inadequacy even before I finally realized that this was real and not just my imagination.

As for my surgeon, he comes across alternately between a caring individual and a wet sponge.  But I was impressed by the before and after photos on www.penisdoctor.com (I think that's the address) and the testimonials.   Funny you  should mention the transgender thing, 'cause he does do phalloplasty, making functional penises out of clitorises, so I thought it would be even easier to make a penis from a penis...

Some of the his "before" pictures on his site though, I would have been happy to have looked like, because in many cases, he has augmented guys I would have thought of as being quite normal looking.  And of course he does augmentations, so yeah, he does do suspensory ligament clippings (with suprapubic fat pad lipectomy), but I truly think he was honest to me that to achieve any length gain through such a procedure, he would recommend some type of traction and VED regimen, which he wouldn't recommend right off for someone who had just had a patch graft, for fear of disrupting the internal stitches.  Nevertheless, he did recommend a Kaplan pump system beginning about 4-6 weeks post-op.  I have been using this maybe once every other day (he recommended 3x a day for 20 min. at a time), but frankly, I need to watch porn for a successful session, and that is not something I can do discreetly at work, or while my 8 year old is around and awake.  And also, I just cannot watch porn that much or that often.
It has nothing to do with prudishness, but even an epicure becomes full after enough indulging and at some point he becomes nauseated at the thought of more food, no matter how good...

So for now, I am using a VED (and the JES extender system during the daytime) and will give that about 6 months or so, before I decide on any other courses of action.   As for the JES, the silastic ligature that fits under the corona becomes excruciating (to me) after an hour or so and the 2 mm foam padding ring they supply is about as useless as the Ultracet pain pills I got during my surgical convalescence.  If any of you out there are using this midieval torture device, you can make it more bearable with this elastoplast bandaging material you can get over the counter.  It sticks to itself without any adhesive.  I have some wrapped around the silastic tubing and I also put a small (1 cm wide) ring of this tape around the base of the glans--this supplies a cushioning effect, and also, the tape sticks to itself and holds itself in place, so you don't have to wear the penile "noose" nearly as tight.

Glenn

[jess99504]

I also have suffered from Peyronies Disease since 1997. Tried damn near everything.
Have only been with one woman in all that time. I'm at a disadvantage as to where I live. Not many Peyronies Disease experts way up here in Alaska!!
One urologist I saw wanted to send me to some Doc in Calif. Well that's pretty much out of the question since the VA won't fund that!
I'm on Beta blockers and my Primary care Doc won't take me off them.
There is another Uro Doc up here that works with the VA who seems to be a very experienced with many of the problems with ED and what not.
Anyway I've decided to see if I can get a consult to see him and see what my options and, short, (no pun intended) of a Nezbit procedure.
At one time I could go all the way to the cervix, now....
What I'm leary of is him sending me to the VA in Seattle. That's one of our teaching Hospitals, and some Resident starts cutting on my willy and messes it up. I've thought about an implant thought really hard about it.
I'd like to have a straighter willy instead of one that looks like a coat hook.
Any thoughts on implants?? Or other procedures?

[bob]

I'm completely surprised by the treatment regimen this guy has you on. If you had the surgery in July, it seems totally wierd that an MD would approve of you using a 'Jes-Extender' three months later. Moreover, he requires it... otherwise, why would you subject yourself to something this painful? Moreover, everything I've read about the Jes-Extender indicates it's a kind of snake-oil device. I'm surprised an MD is recommending that you use it.

Have you thought of getting a second opinion on what this guy is doing? I know Peyronies Disease experts are few and far between, but you could try visiting the APDA website? for a list - it's www.peyroniesassoc.org.

I thought I was being aggressive by pursuing verapamil injections several months after the onset of my Peyronies Disease. I developed an indentation in November of last year. I would estimate my 'curvature' at 30 percent lateral. The doctor says the indentation is key: it causes the curvature, so I don't have a curvature per se. It really would be livable, but I also have the dreaded 'buckling' syndrome, which makes me feel like a klutzy teenager because penetration is more challenging than it should be.

I actually had a congenital (downward) curvature. No, it wasn't 'normal,' but it never caused me any difficulty with sexual intercourse and every woman who ever saw my erect penis liked it.

I had my last shot on July 5; I go for a follow up on Oct. 11. I want the results of this procedure to be unaffected by anything else I may have done, so I've postponed acquiring and using a V.E.D. until then. Meanwhile, my condition seems to be no better, no worse. But I haven't forced myself to wear any medieval torture devices, either - particularly after a tender surgical process.

Bob





 

[j]

After surgery for Dupuytren's contracture, you're strongly encouraged to start agressive physical therapy as soon as possible. This means stretching and massage, and without it the scarring from the surgery is going to restrict your range of motion just like the contracture itself did. So maybe some surgeons are trying something similar after Nesbitt procedures. Makes sense to me.

[crookedselfesteem]

I didn't mean to imply that my surgeon had recommended the JES--I had already purchased that device which was said to be used in some Danish Peyronies Disease clinic.  What my surgeon did recommend was the VED starting around post-op week 4-6--I assumed if he wasn't concerned about any stitch-damage from VED stretching, then I shouldn't be too concerned with very subtle stretching with a mechanical device that could be worn discreetly while I am at work.  I am not in the position of being able to use VED at work (for the 3 times a day session that was recommended).

I had planned to get a second opinion from a local Peyronies Disease expert.  You would think that living in the Tampa Bay area where there are many retirees, a Peyronies Disease expert would be easy to find.  Au contraire.  And I at least have medical connections--I can't imagine how abandoned any non-physician Peyronies Disease sufferer would feel living in this Peyronies Disease hell-hole state we call Florida.

[bob]

The doctors who specialize in Peyronies Disease seem to be few and far between, even in areas of the country (I live in the NE) where people aren't used to travelling long distances to consult specialists. But I do recall seeing one or two in Florida on the APDA site (www.peyroniesassoc.org). One was, I believe, at the Mayo Clinic in Jacksonville.

I visited your doctor's website (www.thepenisdoctor.com). The link for "peyronies disease" didn't work. This was the case on both my work PC (fast internet access) and my home PC (slow). I'd be interested in seeing what he has to say. Did he indicate that he treats a lot of Peyronies Disease sufferers? Most of the information on the site seemed oriented toward penis enhancement. By the way, since you went under the knife for Peyronies Disease, wouldn't a doc with that specialty want to address the enlargement issue at the same time? Or would such an operation be too complicated?

Bob

[crookedselfesteem]

Sorry, there was no "the"--it was just www.penisdoctor.com.   Oh and have the sound turned down or disabled before going to that site.  The background music, which sounds like the old Mission Impossible themesong, is kind of irritating, especially if you are trying to browse discreetly.  

He said he did up to one or two Peyronies Disease's a week.  I'll have to take his word for it, since I didn't get to speak to an other patients.  I really wanted to have everything done at the same time while I was down in Miami, but again, he didn't want to stretch the sutures until my own tissues had started to incorporate into the graft scaffold for fear of sutural failure, internal bleeding, and more subsequent scarring.  I honestly do not think that he was just trying to get two separate surgery charges, because a few weeks ago, when I contacted him about the persistent (but improved) waisting and curvature, he still wanted to wait at least 6 months before addressing the length issue.  So I really don't think that he is "scalpel-happy."

That guy Hakim at Cleveland Clinic in Weston-Miami ignored two of my heartfelt email pleas for help back when I was in the acute/subacute phase and might have been able to benefit from electrophoretic drug therapies--no urogist in St. Pete even knew what I was talking about).  I had really hoped to find someone closer to West central Florida, because as a widowed father of one, my freedom to travel is kind of limited--also, I have done all that I have (and will continue to do any more that I have to) without my son's knowledge, since at 8, I don't think he is sophisticated enough to understand that what his dad has is personally upsetting, but not life-threatening, whereas his mother's fatal ovarian cancer is another story.  My desire to keep him in the dark about my health issues makes things a little more complicated, although obviously not impossible.

[bob]

I mistakenly added the "the" in my post. I thus did look at the correct site, and was somewhat puzzled when clicking on the "peyronie's disease" link yielded a blank page. I did go through a lot of the other information, which again seemed to me to be all about penis enlargement. The one part that I found rather Peyronies Disease-related was the part where he described a kind of "turkey gobbler" condition (this might be the wrong words). It develops on the base of the penis. I might be mistaken but this sort of seems to describe some of what's happened to me. What was once just shy of 7 inches has now been "scrunched" to 5.5. Were I a single guy this might be of more concern to me. (My wife says it's not a problem.. I should think she WOULD have a problem with me flying to Florida for elective surgery.)

BTW, The anecdotal evidence suggests the VED can stretch some of this back out.

If I were in your shoes, I'd still consult one of the recommended Peyronies Disease experts. There's one at the Mayo Clinic in Jacksonville. I often go there on business trips - don't they have shuttle flights to Tampa? You could be there and back in time to pick your kid up from school.

Bob

[Larry H]

The doctor in question is Dr. Gregory Broderick at the Mayo Clinic (Urology Dept.) in Jacksonville. It seems to me he operated on someone who was posting on the BTC a year or so ago, but that would take some time to find, even if it's still there.

Crookedselfesteem, the thing that bothers me a bit is it sounds like the Miami doc with this penis enlargement business may be a doc who cateres to the over 50, gold necklace, trying to be 35 group, that is so prevalent in southeast Florida. Since you have had surgery this is really a mute point, but my belief is that anyone considering surgery for Peyronies Disease should seek a urologist that specializes in genitourinary reconstructive surgery, and has a history of successful surgery for Peyronies Disease.

Larry H

[valetguy]

hi joshua,

i too have Peyronies Disease... did develop late in life for me.. now 68 and the Peyronies Disease began about 3 years ago...don't know the angle, could be about 45 degrees, curve does not hamper sexual activity of any kind.  i don't know if the ed is a result of the Peyronies Disease, cialis takes care of that quite well. i did use a pump, purchased through my medical plan (not the porno store pumps) for awhile however felt that it wasn't helping.  i don't know with a curve as pronounced as yours, whether this straight tube would work for you.

there has been much discussion here about doctor's and surgery... if you do consider that path, i would suggest you ask the doctor to provide your name and telephone (you probably would have to sign a release allowing him to do so) to his previous surgical patients, hopefully they might call you and you can discuss results, if any, whether they feel the surgery successful for them, etc.  obviously for privacy reasons the doctor can't provide you with their names.

as for the "cute college" girls that are checking you out, they must think you are "cute too".  once you start dating them, if it comes to the point where bedroom activities will occur, i suggest you sit them down and explain your situation.  women love communication, especially before and after sex.. this might be your icebreaker to the bedroom.

be confident and go for it... if all works well you will be past that issue... if not, no different than the sexual situation you are in now.  

[crookedselfesteem]

Thanks, Larry,

I think I will try to get in contact with Dr. Broderick, if just for another opinion.  I agree with the gold necklace thing, although I have to admit that I was impressed by the before and after enlargement photos on Dr Reed's site.  He does apparently do a good deal of genital reconstructive surgery (including the gender reassignment thing).  As I AM single and used to be just shy of 7 inches and now are scrunched into barely 4, I would have signed on the dotted line with the devil if it would have gotten me near where I used to be.  I guess Dr. Reed's site caught my eye because of my desperation and the fact that it was probably on another sleepless night at 3 am when I was browsing the Internet.

Still, I have no reason (yet) to not believe he was upfront with me.  I am glad to hear that the VED might yet be of some benefit.   Dr. Lue, in San Francisco, apparently the national guru of Peyronies Disease surgery, is said to recomment VED post-op.  Beats the alternative, but I must say, I am not extremely patient and faced with living with my shortcoming (:-)) for another couple of years, I'd take another chance at surgery.  

[benyguy2]

hello joshu, i had surgery one week ago today. I was bent upward at 90 degrees & absolutely could not have intercourse for more than 2 years. i am 57 & was scared to death to undergo the surgery. I chose the grafting procedure because even though i was over 7.5 inches when fully erect i didn't want the Nesbit procedure due to the fact that it would shorten my penis when erect.  I was also not circumcised although my wife always said I was "half done"...the skin basically was hlf way up the head of the penis...noy overhanging the entire glans,

Ihadgeneral anthesia done by one of the most well respected surgeons in Norfolk, VA. Here it what i really can't belive...there was leterally no pain. I have a total of 3 incisions . 2 under the skin & the circucision cut. This is the absolute truth, i took a total of 2 Percocets while in the hospital for 2 days....7 the only reson was thati had to sleep on my back for 2 straright days &my back was killing me. Otherewise I would not have even taken one of the pain pills.


n summary i suffered wiith Peyronies Disease for over 2 years becuase i was terified at the thought of having my penis cut. While I am suppose to suppress erectoions for 2 weeksusing amtile nitrate inhalents, when I wake up sat night with a painful erection & I put my hand down around my now now almost totally straight erections, I am almost in tears. I can have intercourse in 7 weeks & can't wait. next eeek my wife & i are suppose to message my now straight penis to erection so he grafts willl stabalize. CAN"T WAIT.

IN can not telll you how happy I am that i went through with the surgery. I will be glad to telll you the name of this mracle working surgeon but do not want to put his nmae in thnis postin. Please emaiol me if uyou whcih to discuss over the phone

[Larry H]

benyguy2,

If you are talking about Dr. Gerald Jordan of Devine Tidewater in Norfolk, I can't imagine this fine surgeon would mind you stating his name. People who are considering surgery need to know urologists who are gifted in this procedure.

Dr. Jordan is one of the best in the world in genitourinary reconstructive surgery and is known worldwide. Even if Dr. Jordan was not your surgeon your continued updates as to your progress would be an enormous help to men who are considering surgery.

My Best

Larry H

[benyguy2]

my surgeon wa DR. Steven Schlossbergwho is affiliated with Dr Jordan. I cannot tell you how pleaesd I am for what he did for me. Guys, if you have benn plagued with Peyronies Disease as lond as i was, do not hestiatate to ccontact Dr Schlossberg 7 hae the surgery. There simply was no pain except for the 2 days laying on my back in bed. it is definitely worth it. mt Blue Cross Blue Shiels insurance paid fior evertything except for the deductible. mjs

[kevin]

Very happy to read of your success, benyguy2.  As a 90 degree-upward guy myself, I read your post with great interest (though at one year I am not considered a candidate - yet).

A couple of  questions if you don't mind:

Was there a great deal of plaque before surgey and what form did it take, ie. isolated nodules or a long cord, -- or both, like a necklace?  Perhaps the bend was due to only one nodule at a key point and that is all they had to remove and graft around?  My plaque is a rather long growing necklace and I suspect it may be too much to treat the same way.

How bad had been the loss of length or girth from Peyronies Disease and how much appears so far to have been restored by surgery, if any?

Have you been told of any tendency for the plaque/curve to reassert itself sometime down the road?  Is there anything the doctor has said to do (or not do) to prevent that?

Thanks (and best wished)
Kevin

[jess99504]

Hmm.. Glad to hear someone has had good luck.  I've had this junk since 1997, and look like a coat hook when I'm erect. I'm scheduled to see a uro doc on the 21st of Oct. He's relatively new, so I'm looking forward to some fresh ideas?? I hear he young and really fired up about ED and all the problems that go along with it. And since we don't have any Doc's up here in Alaska who seem to know a thing about Peyronies Disease I'm kinda looking forward to it.
I've thought long and hard aout surgery and no pun intended, I really don't want a Nesbit done since it's shrunk up enough with the bend.
I don't know what will happen or what desisions will be made, but will post more later

[crookedselfesteem]

I remember now why I hadn't tried to contact Dr. Broderick before--there is no email link to him (or any other uro's) on Mayo's website.  I suppose I could mail my history and photos to him, but email is the modality of choice these days.  Also, did you know that it costs half as much to fly from Tampa/Saint Petersburg to Norfolk, VA as it does to fly to Jacksonville, FL?  Incredible...

Consequently, I sent an encapsulated med/surg history with before and after photos to Dr. Jordan, who agreed to see me, although his Peyronies Disease schedule is pretty much booked up through the end of the year.  I asked to be placed on a waiting list in case of any cancellations.  I am really glad he didn't say right off the cuff that I had to wait another 18-24 months after my less than optimal first surgery, 'cause that would have really sucked.  

I stopped my Peyronies Disease meds, except for the vit. E, about 4 days ago when I ran out of colchicine.  The 6-7 daily (mostly morning) bouts of explosive diarrhea stopped immediately...I do not know why I put up with this before.  False hope I suppose.  I will continue with the  VED advice, but it is an inconvenient regimen, with my work and family schedule.   Frankly, I am not too optimistic about that approach.  I am looking forward to a fresh urologic workup in Virginia.  

[Larry H]

Crookedselfesteem,

I'm glad to hear that you are going to see Dr. Jordan, as he is one of the very best and would be my chioce. Of course, I live in Virginia about an hour from him. The is a post under this topic from benyguy2 who had surgery by one of Dr. Jordans associates and at this point he seems very pleased.

My Best,

Larry

[Torino72]

Glad I found this site.  I had been doing searches hoping to get some feedback from folks who had had penile implant surgery resulting from Peyronie's and was not getting any hits.  I located this site through the Men's Health magazine discussions forum.

I would really like to know from those who have had implant surgery about any problems/issues you've had.  But first, a little history leading up to my surgery in 6/05.  I am going to bore you with this, because I think some of the medical issues I had before the Peyronie's presented itself may indicate a relationship to other autoimmune conditions, though no doctor I saw really seems to know.  I this is not of interest, skip forward to where I talk about my post-op experience with the implant.

HISTORY:  I am currently 57, non-smoker, very light drinker (couple of beers a week), and have been very active (running marathons, triathlons, etc.) since age 46.  I have taken extra Vitamin E and other supplements since 1999.  My first indication of any sexual performance issues started in mid-1996 (age 48) when I noticed I was not always ejaculating during intercourse.  In 8/96, my doctor did a complete physical.  I had slightly enlarged prostate and low serum testosterone levels (about 230 ng/dl).  He did a PSA, which was negative.  He diagnosed hypogonadism and started TRT with oral medication (20 mg Testorid).  I didn't notice any significant changes in libido.  Had an Army physical in Oct 1997:  Cholesterol 181 (LDL 126, HDL 39, TRI 82), BP 100/64, pulse 49.  In 4/98, he did another blood test for the serum testosterone levels and referred me to an orthopedic doctor for the groin pain I was having.  The serum levels were well below 200 (around 168) so he prescribed Androderm patches (5 MG/day, which he increased to 10 MG/day in May) as TRT.  In 7/98, he switched to testosterone injections.  In mid-98, I started having eyelid blisters which the ophthalmologist treated with Kenalog injections and, finally, deltasone and doxycyline.  In 1998, my health insurance plan changed and I had to change PCPs.  The new doctor took me off testosterone thinking I didn't really need it.  A urologist could find no physical explanations for the reduced sexual libido, so he diagnosed "mental fatigue/stress" as the probable cause.  Results of a 2/99 blood test: FSH: 1/7 mIU/mL (normal); Testosterone: 337.6 (normal 270-1070); Leut. Hormone: 6.5 mIU/mL (normal).  Results are consistent with normal gonadal function, according to the doctor.  In May, 2000, my ophthalmologist and a dermatologist diagnosed acne rosacea as the cause of my recurring eyelid blisters and a rash on my forehead.    Military physical in 2/02: BP 118/82, pulse 60, cholesterol 197 (tri 107, HDL 48, LDL 128, glu 116).  PSA was 3.0.  Over time, my libido had made some improvements.  In 10/03, I noticed some decline once again.  In 12/04, while being processed into military active duty to fight "George's War", I was giving the following shots:  Diphtheria (.5 ml); Hepatitis A (1 ml); Influenza (.5 ml); Meningitis (.5 ml); tetanus (.5 ml).   In 1/04, I first noticed the curvature of the penis which resulted in the Peyronie's diagnosis.  There was no physical trauma that I recall and the disease was painless.  However the angle of the bend rapidly increased.  I was puzzled and somewhat embarrassed by the curvature of the penis.  Through some internet searching, I found I was not the only one with this problem.  In 4/04, I saw a urologist.  This led to a chain of events/tests.  They did a PSA.  Results were high at 5.5.  They retested in 5/04 following my taking some antibiotics.  Retest was only 3.87.  Urologist still wanted to do a Doppler, sonogram, and biopsy of the prostate, though the rectal prostate exam showed no unusual texture of prostate.  The biopsy was negative and the Doppler showed blood flow to the penis is OK.  The Doppler procedure was painful, since they inject you with something that maximizes your erection.  This causes my penis to bend to almost a 90 degree angle and was moderately painful until the drug wore off.  The doctor prescribed topical Verapamil to use for up to six months and I was told to avoid tea and purple skinned fruit, such as grapes and plums, avoid Vitamin C supplements, and to take 500mg calcium and 50mg zinc daily.  My testosterone level from the 4/04 blood test was 338.  I used the Verapamil until 4/05.  At that time the urologist saw no improvement and recommended I consider surgical implant correction.  The implant (AMS 700) was implanted in 6/05.  I am currently in the post-op follow-up phase.  

POST-OPERATIVE PENILE IMPLANT EXPERIENCE:  Basically, I have been less than satisfied with this surgery.  They implanted the 3-piece AMS-700 unit in 6/05.  The surgery was routine, I guess.  There was no significant pain and no infection.  The surgical site healed quickly.  My issues are: (1) my penis is noticeably shorter now than before the surgery.  The inflated implant does not significantly increase the penile length or width, though the doctor says it is a "normal" correction; (2) there is now a left-upward curve in the penis in both the inflated and deflated mode; (3) sexual intercourse four months after surgery is still uncomfortable and difficult; (4) I have so much irritation in my scrotum from the pump that it is difficult to bend, stoop, or sit without pain.

Intercourse is difficult because the penis is shorter and not very rigid, making penetration difficult and making it hard to retain penetration.  The pain during intercourse and difficulty penetrating, according to the surgeon, is because the penis is still not straight.  He says that daily inflation over time will correct this, making intercourse easier and less painful.  I cannot get him to quantify "over time".  Right now, both my wife and I are frustrated and disappointed with the results.

Before the implant, my penis was straight when flaccid and very curved (80%+) when semi-erect.  I was never able to obtain a full erection because the degree of the bend became painful at some point.  I now have a left bend when flaccid and an upward curvature at erection.  The curvature is not severe, but more than I expected.  

My biggest issue is the pump, implanted in the scrotum.  Think of a rectangular shaped Zippo lighter with a bulb on one edge in there sharing space with "the boys".  In my opinion, it was poorly designed.  It has sharp angles that tend to abrade the tissue.  It moves around a lot, squeezing "the boys", and if you sit down wrong, it shoves the bulb up against the body and that can be painful.  About ¼ of it hangs below the normal contour of the scrotum, sort of like a hernia.  I have to wear an athletic supporter to keep it pulled up out of the way and as immobile as possible.  I have even written the manufacturer, American Medical Systems, about the pump issue.  I didn't expect a response, but they sent me more literature on how to use the device.  

As I said earlier, I am a very active person.  I read material before the surgery that did not mention these complication.  Must have been written/edited by the manufacturer, you think?  One thing I was interested in was how this would impact by ability to ride a bicycle (triathlon, you know, requires that).  I info from other "recipients" was that it did not impair their ability to ride.  At this point, I can barely sit in my office chair, much less sit on a bicycle seat.  I can run and swim without an significant additional discomfort.  The doctor is telling me "It will get better".  

I am not sure what an implant costs.  I saw partial bills totaling $30,000.  Mine was paid for under TRICARE military insurance and they only pay a fraction of what is actually billed.  If I were to have to make this decision again, knowing what I know now, I'd be much less eager to have the surgery.  

As I said, I'm glad I found this site.  I hope others will share their experience with implant surgery so those considering it can get info from actual recipients and know more what to expect.  The doctor's sort of candy coat the answers they give.  The literature is written by the manufactures. So enough said there.  Surgery is surgery and complications can occur.  This is not a magical cure-all and everyone's results can vary.  Get as much info as you can from sources that do not stand to gain financially from your having this surgery.    
             

[Hawk]

Torino,

Welcome to the forum and thanks for that well articulated, very detailed post.  I have considered an implant because of serious ED from a prostatectomy and Peyronies Disease.  My ED was steadily diminishing until Peyronies Disease hit.  It was no doubt caused by injections of bimix prescribed to "keep my penis healthy" and treat ED until nerve repair maximized.  Since my Peyronies Disease is not stabilized, I have only considered an implant.

I suspect that the surgeon is everything when it comes to this surgery.  For that reason, if I give serious consideration to an implant, I will only consider a leading penile surgeon.  I have done a bit of research and I believe there is only one model of implant that gives length to an erection.  The others increase girth only.  The length increasing model can "accordion" if not sized just right.

I am not sure, but you may be the only implant patient on the forum. I hope that your post will give others a few things to consider and cause some extra scrutiny.

Thanks again for the input, and keep us posted.

Hawk

PS:  I have a follow-up question at https://www.peyroniesforum.net/index.php?topic=22.msg1018#msg1018.html

[Old Man]

Torino 72:

I am truly sorry that the penile implant surgery was not what you expected. First, let me say that I am a counselor with the American Cancer Society in my hometown and as such we volunters encounter all sorts of men's health problems in our work. Having said that, I will relate some of the experiences that I have run acorss working with the ACS and with our local US TOO cancer support group for prostate cancer surgery, etc. I too am a retired military man with 37 and 1/2 years of active and reserve time so I know the inroads of Tricare, Medicare and supplemental insurances.

OK, my father-in-law had an implant done back in the 1980s using the AMS 700 three part system. He had somewhat of a problem with the pump in the scrotum for about 6 months, then all pain and discomfort went away. He was sexually active in about 3 months after the surgery with no physical problems. He was shortened only by about 1/2 inch from prior to the surgery. He only had a slight upward curve before surgery and was almost straight after surgery.

Another case of a man in our cancer support group has the same AMS700 unit implanted about 15 years ago now. At age 85, he is still sexually active and he did not have any major problems with his surgery. Also, several other guys that I have worked with have has the implants done and as far as I know none had the problems that you have had.

This is only a suggestion, but maybe you should have a long consultation with your uro and/or surgeon to ascertain if you may have some allergic reaction to the either the saline solution or the material in the device itself. There have been some reports on the web about allergic reactions to the implants due to a person's physical situation, etc. This could be the problem in your case.

None of the guys that I have had contact with presented the problem of sitting, riding, standing for any length of time nor any problems with the device while doing their work, etc. Most of them have been physically active all along and would experience some problems if they were likely to have had them.

Again, I am sorry that it seems to have not worked as you planned and/or thought it would be before the surgery. My prayers are with you and trust that you will be able to find out some cause for your problems. Now, that you have experienced the surgery, you know why that at least on this forum, we caution guys to use surgery as the "last resort" since it cannot be reversed. Good luck for the future and if there is anything any or us on this forum can help with, just let us know.

Sincerely, Old Man

[Larry H]

Torino 72:

I have read through your post a couple of times and two things come to mind. If I understand correctly you had no problems with ED, only a loss of libido. I think you said the doppler exam showed you had good blood flow.

You also seem to indicate that that after using topical verapamil for some months with no success your doctor recommended an implant. Now it seems strange that he would go from TV to an implant without considering graft surgery. Typically men with good erectile quality are considered good candidates for graft incesion/excesion surgery. Was surgery of this type or even the nesbit mentioned by your urologist?

As you may be able to tell, I'm a little concerned as to why your urologist would go with a treatment that is considered by most top Peyronie's urologists to be reserved as the final treatment modality in patients with both severe penile deformity and erectile dysfunction, and you didn't have the latter. It has also been reported that men with a greater than 60 degree bend will require incision and grafting of the plaque along with prosthesis implantation to acheive proper straightening. You didn't mention if this had been done, but if not it may be a cause of the problem you now have with bend and length.

Please understand that I'm not a doctor, only a Peyronies Disease patient that has done, as well as many others on this forum, a great deal of research into Peyronies Disease. I have an excellent paper written by Dr. Wayne Hellstrom of the urology department at Tulane University, one of the top Peyronies Disease uros in the country, on the surgical approach to Peyronies Disease. It goes into all of the treatments discussed here and gives some detail on the AMS 700CX, and Patient results. I would be glad to work out a way to get it to you if you would send me a private message using this forum, or to my Email address "duffer882003@yahoo.com".

As Hawk said there has been little if any input on this forum from men who have had prosthesis implantation so the detailed report of your condition is most welcome. We look forward to your continued posts.

My Best,

Larry H

[kevin]

For kbmw:
My case is as bleak as yours (though with a much shorter history) and I also don't like playing into the hands of urologists anymore...BUT... I have read of real surgery successes and have corresponded directly with some patients about their experience, just in case I eventually decide that there is no other alternative for me.  Surely you know of such cases, too.   (It is sometimes even possible to regain much length/girth.)   At some point have you considered doing the same, especially since you could say you have nothing (functional) to lose?  

[kbmw]

Kevin,
Indeed I have considered surgery. As you suggest it does get down to having nothing left to loose. I am a very hesitant to conclude that I have nothing left to loose. I had foot surgery performed by an orthopedic surgeon several years ago. After the surgery I learned what I had to loose. I wish I had never done it. I think we must all assume that the best course is never trust the Surgeon. Second, make absolutely sure you have nothing left to loose. Penis surgery is pretty scary. I don't know what the success ratio is and maybe someone can provide that info. However, what some people call success I consider a joke. With topicals, as we see above, success is defined as a 29 degree bend improving to 18 degrees. That is a 62% increase. But we are talking small numbers (11 degrees) that are within the realm of spontaneous improvement. With a 90 degree bend a change of 11degrees would be an improvement but if I did the math right a 62% increase would take a 90 back to 35. In other words I think the term improvement is very closely related to wishful thinking in the world of Peyronies Disease victims.

With surgery you are going to do permanent damage that is not going to be repairable. If surgery works to your satisfaction, fine. If it doesn't and a truly less invasive, successful treatment comes along you may then be out of luck. Everyone here talks about seeing a "good" Urologist. Even if you do all they can offer is treatment that appears to me, not to work. But they will offer anyway. My opinion is that at this point in time we are SOL. Personally, I am not willing to risk surgery.

[j]

I've had 2 hand surgeries for Dupuytren's and kbmw is spot-on when he says that having a surgery will show you what you have to lose by it.  

Whatever the outcome of surgery - and it can be all over the map - it's permanent.  If a better treatment comes along in a few years, you might be sitting there looking at it and thinking "if only".   I'm waiting for something better - best bet is still AA4500 in a couple of years.  

[steven]

J., What is AA4500?

K.,

I have several surgeries, none on my penis, but I should let you know, there is always a chance something totally unexpected will occur with any surgery. Even totally unexpected by the Doctor, they cannot tell you 90 -100% how you will turn out.  Doctors could fool you with their "learned" air of confidence.  Just keep all this  in mind, then if you do decide to get surgery, only get it  by the best world reknown surgeon you can.  Personally - I wouldn't do it. Just my opinion

Steven

[kevin]

I feel the need for caution too, of course, even though my own experiences with surgery (unrelated to Peyronies Disease) have been fine.  Besides the risk of the unexpected, I don't want to do something that might make it so that if/when some real "cure" comes along, it will be inefffecrtive due to prior surgery.  

That said, I am keeping the option open.   Yes, the common wisdpm, even from Urologists, is that it is risky and you can't expect to be restored to what you used to be.    But I wonder if that has changed somewhat,  because the several surgeries that have been related to me were not problemastic and were not merely "improvements".   The most common statement is "I'm SO glad I did it."   That is something unqualified that you never really hear from anyone using other therapies.

Even if I go that route. it is still far off but I am busily learning NOW who are the actual surgeons that have earned the gratitude of these lucky guys.   (Obviously, one has to consider whether these cases resembles one's own closely enough to expect a similar outcome. )  One thing I will NOT do is wait indefinitely while I just get older and beset by more problems - related and not.  As we have all noted, research on AA4500 is still dormant and we don't even know how effective it will turn out to be for Peyronies Disease in the first place, let alone for the tougher longer-standing cases.

[ranger394]

please how can i get in touch with dr jordans office  am new to the forum and have been to multiple urologist with no results have a ved but is painefull to use am at a 80 or 90 degree turn for the worse and in denile of the whole mess need help please live near dallas going on my third year  with Peyronies Disease   no sex with the wife  relationship is very strained things arnt going to well  if someone can respond with info on dr jordan or his office please  

[crookedselfesteem]

I haven't seen him in person yet, but he comes highly rated.  I am scheduled for a consultation in early January.  Bear in mind that there is a waiting list.  I had emailed him and was contacted by one of his office staff, Theresa.  Here is some contact info

Devine-Tidewater Urology- A Division of Urology of VA
400 W Brambleton Ave Ste 100
Norfolk, VA 23510
(757) 457-5100
FAX: (757) 626-0768

The email address was ghjordan@sentara.com.

I don't know what to expect, but it can't be any worse than "waiting, "cause it could get better on its own."  Yeah, right...

Good luck, Brother.

[ranger394]

thank you for the info on jordan willtry and reach him  good luck  

[bentley]

Grafting Corrects Penile Curvature in Peyronie's Disease



NEW YORK (MedscapeWire) Apr 15 — Thanks to a grafting procedure described in the April 1 issue of Urology, men with Peyronie's disease can have new hope of restored sexual function.
In Peyronie's disease, the tunica albuginea becomes a fibrotic plaque causing abnormal curvature of the penis, which makes sexual intercourse, even with erection, difficult or impossible. The surgical technique involves a single incision in the tunica albuginea and fibrotic plaque, and repair of the defect using bovine pericardium graft to lengthen the shorter side of the penis.

"This procedure is effective for all types of penile deformity, regardless of the plaque characteristics," write Paulo H. Egydio, MD, PhD, and colleagues from the University of Sao Paulo in Brazil.

Of 33 patients who had this procedure for symptoms of Peyronie's disease, all maintained their state of preoperative erection. Penile curvature was straightened in 87.9% and was less than 15° in 12.1%. Surgery increased penile size by 2.21 cm on average (range, 1-4 cm).

There was no graft infection, rejection, or retraction at follow-up, which averaged 19.4 months (range, 5-30 months).

"At the end of the follow-up period, all the patients maintained the penile straightening, erection, and ability to penetrate and had re-established satisfactory sexual activity," the authors write.

Urology. 2002;59(5):570-574

Reviewed by Gary D. Vogin, MD

[phil]

Too bad there isn't grafting done with our own tissue.  

[Hawk]

Phil,

Just curious why we care as long as it works.  It is one less cut on us.