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Liam

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Highlights of Surgery for Peyronies Disease
« on: September 13, 2006, 09:13:58 PM »

This area contains highlights from the main Peyronies Disease Discussion Forum topic on "Surgery for Peyronies Disease,...".  This area contains information about, links to, and personal accounts of all types of surgery for Peyronies Disease.

As with all the topics on this newly diagnosed board, these topics are read only highlights copied from the main forum.  Go to the main forum to join in the exchange by posting questions and comments.
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Highlights of Surgery for Peyronies Disease
« Reply #1 on: November 26, 2006, 12:31:31 AM »

 The following is a one-post compilation of highlights from the Surgery for Peyronie's Disease thread. Credit to individual posters is given. Individual posts have been copied into this page and no grammar or wording has been changed from the original post. Entire posts have been copied where possible to retain the context of the original post. The posts are entered in chronological order from the top of the page to the bottom, so the oldest posts will be read first and the most recent posts will be read last. This IS a work in progress and will be added to and edited so check back often.

        Highlights of Surgery For Peyronies Disease


Crookedselfesteem « Reply #15 on: September 27, 2005, 08:16:31 PM »    Quote

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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???





Crookedselfesteem « Reply #17 on: September 28, 2005, 10:23:19 PM »    Quote

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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





Bentguy2  « Reply #28 on: October 05, 2005, 12:32:04 AM »    Quote

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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.




Bentguy2   « Reply #30 on: October 05, 2005, 10:41:30 PM »    Quote

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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.




Torino72   « Reply #35 on: October 26, 2005, 11:47:54 AM »    Quote

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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.   
               





Old Man   « Reply #37 on: October 26, 2005, 03:51:11 PM »    Quote

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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.







Number1    « Reply #77 on: February 11, 2006, 06:02:53 PM »    Quote

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My first post, so bear with me. First, Thanks to all for sharing the knowledge.
I've been reading in the Penis Surgery Clinic web page about their procedure for "moderate curvature with good erections" being "short eliptical transverse incisions made into but not through the plaque". Elsewhere I've read that this procedure is popular in Europe. I have not seen any reference made to it in this or the previous (am I allowed to mention that?) forum. Is the procedure a disaster? Seems as though it would not be as radical as grafts etc. Any knowledge or experience on this?








Hawk    « Reply #78 on: February 11, 2006, 08:22:22 PM »    Quote

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Number1, it is great when a member starts posting an contributing the the forum.  Thanks for helping to make it work.  The procedure you are describing may be the Lariche technique.  There is a paper in our Resource Library area that Larry and Flexor worked together to provide.  They got it translated into English a couple months back.







Michael   « Reply #80 on: April 18, 2006, 12:42:44 AM »    Quote

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Hawk asked that I cut and paste this from another section:  only too happy to oblige. If you have already read this, I did add a postscript at the bottom...

Sorry--  been too busy to get back on line to report!  We drove to SF Friday, waited probably 20-30 min to get into a room.  Dr Brandt, who introduced himself as Dr Lue's Fellow, did the initial screen and first sonogram.  He felt the thickness of the plaque was not too severe, we chatted a bit about the kinds of treatments men are trying out there.  He said he was aware of maybe 30 different things that men are taking or doing... and that to his knowledge, none of them provide any improvement except minute amounts in isolated instances. We got into a better room, and Dr Lue took over. He wanted a bit different angle on the sonogram, so re-did it, and then went over what he feels are the options most of us have.  First, in the case of early treatment, is an oral med with various side effects (sorry, it is nothing new, but I can't pull it out of my brain this second) which he said was not likely to help me as I feel I have stabilized after about 14 months. I told him I came in fully prepared to discuss surgery, as I am practically incapable of having intercourse... and what I can accomplish is more than awkward and generally uncomfortable. The only glitch was that they could not locate my pictures (I said That's odd-- I just saw them on the Internet the day before!) (Side note: both men have wonderful senses of humor, and as soon as we traded shots we got very relaxed... I'm sure he uses a lot of the same lines on most patients, so I won't reveal them, but they go a long way in removing the anxiety of the situation)  The three surgical options are plication as the easiest and least invasive (I can straighten any penis, easily, in about 20 minutes... but the question is whether the erections you can get now, if straightened, will be good enough to give you a satisfactory shot at intercourse.")  Second is grafting-- much more complex, with greater danger of impotence due to nerve damage-- depending on how erect you can get beforehand, and with how much aid it takes (chemical) you can run up to a 50% or even higher chance of becoming completely impotent. This is microscopic surgery, to delicately separate the nerves from the plaque; excise the plaque, and rebuild with the graft. He says it can take him two hours just to deal with the nerves... but he does several of these every week, and is confident in his ability.  The third is the penile implant, and while he did not recommend nor am I interested in jumping straight out there, because my wife is an engineer, he just had to show it to us! He does at  least two of those a week-- says they are a marvel of engineering, and has successfully even implanted one in an 87 yr old man! We wanted to know if I started with plication and was not happy (my fear is that the waist and hinge effect I have would remain the same, and it would be conducive to further injury.)  Answer is yes, if you don't mind two separate surgeries.  Likewise, if door #2 does not do it (say, the surgery is physically successful, but you become impotent) you can go for the implant. He says all of the sensations remain with an implant; ejaculation is possible (I already know i can ejaculate with a 25% erection, so that's not hard to believe.)  What he could not say was whether have so much waisting that the simple plication would be sufficient (since the pictures were still MIA, it was getting late, and he had not done an injection to witness my erection himself.)  So, he asked me to email the pictures ( I did this weekend) and he got back to me this morning with two options: (I have severe narrowing at the base of my penis)

Graft the curved portion and the narrow portion--4 hour operation with
30-50% chance of impotence

Straighten the curved portion with sutures and graft the narrow parts.-2
hour operation with a 10-20 % chance of impotence.

Option 2 would make me look pretty much as I used to, but shorter (at this point, I would be happy with straight and no pain).
Option 1 gives me back some of what I lost... at higher risk.

I'll be thinking about this; my wife already says it's my decision, and she's with me no matter what...

That's it for now... I'll let you know what I decide.

Later postscript:  Forgot to tell you--  I asked if the real incidence of Peyronies Disease was really only 1%, and he said he believes it's at least 3-5%--  that with the advent of Erectile Dysfunction meds, men who would have just given up before now have decided that this is something they should report and see if they can conquer.  I said something about him specializing in Peyronies Disease--  he said he doesn't: but everyone comes to him for it anyway!  Last he said "Guess how many new Peyronies Disease patients I have seen today? (my appt was at 2:30; did not leave until 4 pm)  he thought for a minute, counted up--  "Nine!"  This on Good Friday, and I saw only one other patient waiting for another of the many doctors in the Uro practice...  Guys:  We are not the Few... We are Legion!







Robert    « Reply #81 on: May 08, 2006, 01:48:53 PM »    Quote

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   My peyronies syptoms started to manifest themselves after I turned 18. I first noticed something was different when I wasn't able to urinate straight forward and had to hold my penis 'straight'. Over the next few months, my penis curved to the left a little more each week until it eventually was curved almost 30 degrees to the left. Unlike most people with peyronies, I don't remember any specific trauma to my penis. Looking back, the most I can figure is that it got damaged in my sleep; perhaps rolling over while I had an erection.

   I never told anyone, because it was so embarrassing. I had casual girIfriends and even more casual sex; but in general, I would go to a party and stop going any further with a girl than making out. Even in my dreams, my bent penis stopped me from going all the way with imaginary girls. I'm not bad looking and I'm really out-going, but I was always worried that someone else find out and spread the naked truth. Even harder, was that my friends would always joke about curved penises; saying that they were caused by over-masturbation or trying to force ones penis into places too small for it.

   Finally, after 6 years, I decided to start looking into treating my curvature. Around February of 05, I searched the internet and found this site, among others. They were all very helpful and I found out how and why a penis would become curved. Sure enough, after looking up some information on curved penises, I found out I wasn't alone in my plight. There were other guys like me. My disease had a name. I hadn't even noticed the scarring under my shaft's skin until reading up on the subject.

   I immediantly started trying some of the home remedies on myself. I started taking Vitamin E and some other pills meant to help with arthritis. I would rub cocoa butter into my shaft twice a day. I also found a website that explained techniques for jelqing and began performing those exercises.

   It took a lot of time out of my busy schedule to take pills 3 times a day, rub butter into my scarring twice a day, and perform 45 minutes worth of jelqing every night. 6 months later I hadn't seen any change in the curvature of my penis. I'm not one to do anything half-assed, so it was very disheartening, because I was very vigilant about my treatments.

   Finally in August, I got up the courage to see my family doctor. This had to be the hardest thing I have ever had to do. I had never talked about this to anyone; and to tell this to someone I had grown up with and knew really well made me want to be sick. He was very understanding and was glad that I had took it upon myself to read up on my disease. He referred me to a urological specialist and after an examination he suggested that since it wasn't physically impossible to have sex, I might be better off just forgetting about it and going on with my life.

   Perhaps seeing how devistated I was by this, and how determined I had been to take treatment into my own hands, he setup an appointment with a urological surgeon. This doctor filled me in on all the risks and side-effects of surgery; and even though I was scared of losing length, rigidity, or even becoming sterile; I decided to go ahead and make an appointment to have surgery on my penis.

   This type of surgery, in Canada anyways, has an up-to one year wait time. Shortly after my last doctor visit, I met a sweet girl and we started dating. the sex was good, I never brought up my curvature and she never mentioned anything either. Last month, after nearly 9 months of waiting, I got a call from her at work. We are living together and she had 'accidentally' opened the letter sent to me from the hospital, confirming a surgery date. When I got home I came clean to her about the surgery. I was scared, because it had never come up before and she was literally only the 4th person I'd ever told this to.

   To further complicate matters, she insisted that she had never noticed my curve. Maybe it was all in my head and it wasn't bent as much as I thought. Up until now I wasn't scared about the surgery. I knew there were risks, but I had outweighed the possible dangers and complications by justifying that it would be worth it to just be 'normal'. Now a girl was saying that my penis didn't even need straightening.

   I decided to go for it anyways. I signed the acceptance sheet and got a pre-op assesment. I had come too far, worried far too long, and had put too much time and effort into this to turn back now. Penile straightening is only considered 'day-surgery', which means that you only need to stay overnight at the hospital for observation and are released the next day. My surgeon felt that the best way to deal with my curvature was to simply 'pinch' the right side of my shaft to straighten the curve. There is the least amount of things that can go wrong with that procedure, as opposed to grafting from the 'healthy' side. the down-side is that it can shorten one's erection by up to an inch. I also found out from my surgeon that it was only going to be a 45 minute surgery and the anesthesiologist even gave me the option of just having my lower-half frozen for the surgery. I had been up really early that day, so I chose to be put under and have a nap.

   When I woke up, my penis was wrapped in gauze and I had a catheter to assist with urination. There was very little discomfort and the next day I was released without any complications. My only instructions were to hold off on sex for at least a week and to keep my wound clean. I was really horrified when I took the bandaging off at home. My penis was swollen, bruised, and had an incision all along the right side. For the first few days after surgery, I couldn't get get an erection. I was glad, because I'm sure it would have hurt a lot, but it scared me a little. 5 Days after my surgery, I had my first post-op erection. I woke up with an erection and it hurt because of the stitches.

   It has now been almost 3 weeks since my surgery. My erection is stiff, I didn't lost any length, and my penis is straight. I still have an incision line on the right side of my penis, but it feels so good to have sex and not feel awkward. Even the feeling of a straight erection in my pants is wonderful to experience again.

   I would definetly suggest surgery to anyone with peyronies. While it's not for everyone; I can say that after being scared and embarrassed of my erection for 6 years of my life; I feel like a new man. I talk to girls without any hestitation, I won't turn my back in public swimming pool's change rooms this summer, and I'm not constantly distracted during sex by thougths of inadequecy. If you have had stable peyronies for more than a year and sex is difficult or embarrassing. Please visit your doctor to discuss the options that are available to you.







Michael    « Reply #83 on: May 28, 2006, 10:11:11 PM »    Quote

________________________________________
Two months ago I posted about my consultation with Dr. Tom Lue at UCSF.  I spent some time thinking over my options; tried to have intercourse a couple more times (basically not possible: my bend was more like a kink, maybe an inch from the base, and upward, so that if  I was laying on my back, my erection would be tight against my body, and trying to force it away caused much discomfort, resulting in quick deflation.)  I finally decided that if I was to go through life with no chance of successful pentration, I would take the leap and have the surgery.  It was scheduled for May 25, last Thursday. On Wed I went through the pre-op paperwork with admissions and consultations with the anesthesiolgy dept and again with Drs. Lue and Brandt.  This time my pictures were available; we did another sonogram; and Dr. Lue laid out what he considered to be my updated options: do only the plication to straighten my penis; do grafts on one or both sides of the waisted section (the left side was indented more than the right, but both together made me much narrower at what I consider a crucial strength point) or do the entire H procedure (grafts on both sides and the delicate separating of nerves from plaque across the shaft). Dr. Lue felt the risk of impotence after the H procedure was high; the only gain would be about a half-inch of length. I chose to go with grafts on both sides, reasoning that a straight(er) penis strong and potent enough to penetrate would  be a godsend considering where I was. I was average at best at my largest, and I have lost some of that... but my wife assures me it has never been about size, and I decided it was in my best interest to believe her. The next decision was whether to go with my own vein or the pig intestine; the downside to the leg vein is that you lose that entire vein, and the incision is reported by most patients to be much more painful during recuperation than the penis incisions.  The downside to the pig intestine is, well... that your penis will oink every time you use it!  (Sorry-- had to use one of his zingers, at least!)  The downside to the pig parts is that you have to wait a few extra weeks before attempting to use your penis-- it is replaced by your own tissue entirely in about 4 months, though you can use it in about 8 weeks or so...  I went with the pig intestine; figured I would hedge my bets and save the vein in case I need it in the future for something even more serious.

I reported at 6 am (UCSF is an hour drive from home); went to a holding bed with Dotty alongside me; had the IV placed; and when it was my turn to go my anesthesiologist said he would start me with something to relax me.  That's the last thing I remember before waking in recovery! Dotty says my eyes rolled up, and I mumbled "Now THAT's a nice high!" (I guess you can take the boy out of the 70's but not the 70's out of the boy!)

Anyway, I woke in recovery nearly four hours later, around noon; Dotty was exhausted, and I wanted to rest and kept slipping back to sleep.  No pain; but some vague discomfort that I finally determined to be the result of my first experience with a catheter... I told her to go home and rest and pick me up in the morning as planned.

Dr. Lue stopped by after his second surgery, about 4 pm.  He told me I had made the absolute right choice: the erection drug would not  get me fully erect (apparently, not even close) so he felt I already have enough nerve damage that him trying to separate and set aside  more nerves would have probably not resulted in a successful ability to achieve an erection afterward. he said he pumped me full of saline; got me like a rock, and saw that my bend was more pronounced than my pictures had indicated. He did the plication to straighten that out, then did the grafts on both sides, and he felt that part went very well. He thinks I may eventually be bigger around at the base than further out... but time will tell.

So, I was wide awake after that; spent the evening reading; nurse changed the ice pack every couple hours. I got up and walked a few laps around recovery about 9 pm, then watched TV until midnight. I had one Vicodin all day long, and that was only because I was doing some regular coughing, and the sensation of trying to clear your lungs with a catheter in is unpleasant... not painful, just uncomfortable. I did take two more Vicodin at midnight to try to get sleepy; it worked, and I passed the night just fine.

The catheter was to come out at 6 am; I was anxious enough about that joy that the nurse offered me a bit of morphine before she did it. That might have just been a psychological ploy, because I took her up on it, but never felt any effect from the dosage.  The catheter slipped out just fine; again uncomfortable, but not painful, and that part was over.  The worst part of the whole surgical experience was the catheter... and in the scheme of things, that was nothing!

They did up the paperwork, and I walked across the street and up to Dr. Lue's 6th floor office so he could show us how to change the bandage and take a last look. I am black and blue from stem to stern, but pain-free. My only problem after three days: with no hair around there to be a buffer, my scrotum tends to stick to my legs, so I have to walk bow-legged to free up my boys!

I'm going back to work on Tuesday (if not a holiday weekend, I'd have no problem returning tomorrow.) While I don't feel like doing my daily 3-1/2 mile walk because I want to limit my swinging... I felt more than good enough to go to an antiques fair today and cover all 400 booths at a leisurely pace.

The next two months are Wait and See time... but I can tell you right now that I feel better for having done this; for having taken the step... even though I know there is the risk that for whatever reason--physically or psychologically-- I may end up unable to achieve an erection.  Each of you has to come to your own conclusions about what course to take, but for me, I did the right thing. Having one of the best surgeons around in my back yard didn't hurt, of course, but making the decision freed up so much STUFF that I was holding in that I feel way lighter than I did before. Before I went in, I finally told my sisters and my kids what was happening to me; and coming out of the the surgery, I feel like I can speak much more freely about it. I feel like warning everyone I care about that we men are not indestructible: we go through our lives thinking we can't be hurt; not THERE, at least... but as WE all know, we sure as hell can be.

I will check in and keep you updated. So far, so good. I will admit that I felt from the beginning that if surgery was a viable option for me, I was going to take it. I was scared to death of having a scalpel taken to my privates: what man wouldn't be? I am here to tell you that the pain I imagined was so much worse than what I am experiencing (literally:  none) (wait until my first erection; I may change that tune!) that I am astounded.  I have looked at the pictures; I actually have the picture of the bloody penis from the A4400 literature saved to my desktop; (I thought "That must be excruciating!")  Well... it's not.  And that's what I want to leave you with for now: there are many reasons not to have surgery to correct your Peyronies...but pain is not one of them, at least not in my opinion.






Liam    « Reply #90 on: May 30, 2006, 10:14:34 PM »    Quote

________________________________________
Found this about a new graft material.  It is called Surgisis.  The article date is 5/22/06.

http://www.urotoday.com/search/contents/article.asp?cat=Erectile Dysfunction&sid=&tid=&aid=4931





Michael     « Reply #94 on: June 19, 2006, 05:29:15 PM »    Quote

________________________________________
I'm now at 3-1/2 weeks and all is about where it's supposed to be, I think.  Stitches are still hanging on, but the incision sensitivity is mostly gone.  I was told not to attempt anything for 8 weeks, and I'm holding to that. The few times I have visualized any kind of sexual activity, I can feel the blood rush to the area... so I know the reflex is good.  It does kind of ache when that happens, which pretty much cancels out the rush, so... I have not had an erection.  I dream about having them, but if I swim into consciousness and check, I find it's just that:  a dream.  I will say that's an improvement in and of itself: before the surgery, I could barely even dream about it.  Oddly enough (I hope it's odd, and not future-predicting) I have several times dreamed of having a decent erection, attempting intercourse... but finding I only have about two or three inches to use! Think I've got some subconscious worries over size? Nah!

I have promised my wife some playing around to show I have not abandoned her... and because I know I'll react physically, and I'm afraid of the results, I keep wimping out.  I've got chance it; they want blood in the area to help stretch all the tissue... and she deserves the attention.  Lordy, lordy:  I'll let you know how it goes.







Michael         « Reply #108 on: July 23, 2006, 06:25:07 PM »    Quote

________________________________________
Hi Everyone--  Apologies for the long period of silence, but for the last six weeks there really has been nothing to report on other than the wild variations in my psychological state as I waited this out.  I had in my mind the idea that when I was told to wait 8 weeks, all should be well by that time... and as each week went by, I felt more and more that everything was not going to be completely back to normal. I wanted so much to be a success story that I didn't want to let you in on my fears and doubts... but as we all know, if you are going to get on the coaster, you'd better be ready for all the twists, turns, dips and loop-de-loops.

You probably know most of what you would need to about me:  54 yrs old; I woke up one day with a hinge, basically.  I followed the forum for several months before joining it; since it seemed to me that many guys were grasping at straws and doing all kinds of therapies that did not seem to get them anywhere, I just waited for it to stabilize. My wife and I tried now and then to have sex and almost always failed:  I would either be so uncomfortable or so fearful that I would end up with so little erection that even if I could manage an initial penetration, I could not complete the act.  Once stable, I made the decision that if there was any chance surgery could help, I would do it-- because it couldn't be any worse than it was, and I really had no reason to hope it would ever get better on its own.

I posted a couple times just after the surgery, but there was that 8 week waiting period, so I have been keeping a low profile.  I went back to Dr Lue on Friday, (8 weeks plus one day) expecting the worst because nothing has been happening for the last 6 weeks: I have often felt a little blood flow to the area, but have had no real erections, and still have some discomfort as it stretches even a small amount. I was feeling like the surgery must have failed...

I left Dr. Lue's ofice with some hope that it can still get better, with time, because the sonogram showed I am still healing, and my own tissue has not yet replaced the grafts. He wants me to start taking Viagra to get more blood flow to the area, so that as my own tissue grows in it does so with more volume ... but I didn't ask him how often I should take it, or if even I should try to use my penis ... I'll have to email him today for those answers.

A refresher as to my surgery: Dr Lue made an incision from  the top of my scrotum almost to the head of my penis, on the underside, because my bend was upward, and the incision on the opposite side straightens that. He did two grafts of pig intestine on either side of the base, as I had "waisted" about an inch out which made for the hinged, weak spot where the bend occurred. The good news so far: I am perfectly straight now. The bad news so far:  without having had a real raging erection yet it sure looks like I have about half what I started with... and since that wasn't all that much... well, I'm hoping I still have room to grow.

So:  I went to Dr Lue on Friday.  Yesterday I took 50 mg of Viagra... and nothing happened. I had been taking it very sporadically for several years before the Peyronies hit, and a few times after that, and it had always at least jump-started an erection. Yesterday, nothing.  I think I was filled with apprehension, and I did take a small dose... so I went to bed hoping that was the problem, and not that I had ended up impotent.

Then, this morning, I had some pleasant sensation and found I was actually getting erect. I checked it all out carefully, and fearfully, and realized the underside hurt if I pushed on it anywhere along the incision scar. I was very short, and I was maybe 2/3 or 3/4 erect.... but there was enough there to achieve penetration, and after a VERY short time I ejaculated for the first time in so long I can't even remember. Talk about a relief:  I did have some discomfort, and I am still somewhat numb externally along the incision... but I am taking great heart and hope from the experience.  Baby steps... It is NOT all over....

So:  my story is still unfolding.  I have hope, still, even with not a whole lot so far to back it up.  I want very much to be that success story, for my sake, for my wife's sake... and for all of you, because the worst part of this disease is how it whittles away at our self esteem, and our hope, and if my experience helps prove there is hope, it will all certainly have been worth it.

I will keep you posted!

--Michael

ps:  I told you I would share financial info--  I got copied on the billing to my insurance co; UCSF billed this out at just under $15,000... but the only bill I have gotten has been for my $20 office visit co-pays... I know for a fact that what they accept is far less than what they bill, but I don't know if that would help someone with no insurance negotiate.







Michael    « Reply #111 on: August 28, 2006, 01:51:57 AM »    Quote

________________________________________
Thanks, guys, for the private notes; I wish I had wonderful news; while I don't, at least I am still encouraged by seeing tiny bits of progress.  I have been taking 50 mg of Viagra about three nights a week before bed; I do experience nocturnal erections with it, but they are nothing to write home about. I have not had an erection that I would consider full yet. I have had intercourse with my very understanding wife maybe 4 times in the last month; I experience enough discomfort that it's pretty tenuous, at best.  I did find this last time that using plenty of lube helped a lot...  my penis just cannot take much pressure, still.  I recall that DR. Lue told me originally when we first discussed the grafts that it would take up to 4 months for my own cells to take over the grafting material, so I am patiently waiting another month.  My concern is that the pain that I feel is not in the grafted area; it's just past the end of the incision in the head of my penis. It is likely that the anticipation of this pain is keeping me less than rigid.  My last post I claimed to only have half of what I started with; I'm relieved to say that is no longer the case.  I must be up to about 2/3 or 3/4; if I could get it hard enough it would be enough to play with...  Anyway:  still not giving up; if I was facing a lifetime without it before the surgery, I can take however long this requires, if it only gets back to being useable.  If I have any kind of dramatic improvement, you will be the first (well... the second!) to hear about it.  Otherwise, I'll report back at that 4 month post-op time, and let you know where it stands (or, if it stands :-)) ...






Percival   « Reply #114 on: September 02, 2006, 04:09:45 AM »    Quote

________________________________________
Hopeful
Yes I had surgery and it straightened the 90 degree upward bend. However, it was necessary to be circumcised with the procedure I had, and this has led to a decreased sensitivity. Also other plaques both left and right, which were not treated by surgery, have led to shortening. The outcome - 5 years after the op - much decreased libido, and a requirement for a lot of stimulation to get a good erection.
I have used a VED to excercise it on occasions and a useful hint I obtained on this forum is to use shaving foam instead of KY jelly.
Percival





ComeBackid     « Reply #115 on: September 02, 2006, 07:12:12 AM »    Quote

________________________________________
Percival,

The loss of sensation is very common after circumcision, I've asked a few guys about this and they weren't exactly thrilled.

I'm happy to hear you can still enjoy sex, the thing that concerns me greatly regarding surgery is what if plaques develope afterwards anyway?  Also how much shortening did you have, was it a big loss? Your a brave soul to go under for the surgery, did you have much pain afterwards?

ComeBackid





Percival    « Reply #116 on: September 02, 2006, 01:21:29 PM »    Quote

________________________________________
ComeBackid
There are other factors which may have caused some loss of sensation:
1. as the plaque was on top, the nerve bundle had to be lifted for access to it. I was warned that this may give some loss or a change in sensation.
2. I hear that sensation decreases with age - I am 56 - so this may be contributing.
I don't think the shortening was due to the surgery - I had the Lue procedure not the Nesbitt. It is probably due to other plaque at the sides. Say an inch shorter now.
Surgery was not really painful but I used an excellent surgeon here in the UK.
With a 90 degree bend, there were no real options 5 years ago. Now, I would consider the Lariche technique if it could be done from the top, avoiding the nerves.
Although the outcome for me has been fairly good, my advice would be to exhaust all other methods before thinking about surgery.
Percival





IrishB OCD    « Reply #117 on: September 12, 2006, 02:04:10 AM »    Quote

________________________________________
Hey I'm really new to this but I was wondering if someone could help me out.  All your guy's posts here have been an awesome mental help to me, kept me from going insane to know there are other guys out there.  But I had a question and wondered if anyone could help me out.

I'm really young to be here, 19, but I have congenital penile cuvature, so it's always been there.  Which, I guess is a good thing because I don't know anything different.  I was 7.25 in long, but with about a 90 degree curve.  So it was was pretty severe, however I don't know if it's possible to have sex with it because I've never let myself go that far.  I could bend it straight without, and there was never any pain involved, but I had to hold it there so I've broken up with every girlfriend I've had before it came close to her seeing it, because I was too ashamed to let her even see it or have any idea about my condition.  So i got the surgery 5 days ago.  So here is my issue now:

1. How much length can I expect to lose from this?  Everyone always says some but no website I've found is real specific, it's like they think we'll freak out if we know.  The doctor said he didn't have to cut anything out just pulled the skin down to free up some places (which took care of most of it) then did a little bit of plication.  I know its the typical young guy thing to be obsessed with length, and I know that it truly doesn't matter...I'm just afraid that now (if it was successful) I'll finally be straight, but will be totally ashamed of my length.

2. More importantly.  How soon should I start judging my results?  I've been getting the nocturnal and morning erections (holy crap that hurts) plus a few throughout the day...and I hate what I see.  It almost looks like it now still curves to the left, it just makes a second turn back to the right so it ends up facing the same direction....just about an inch to the left of where it started.  Plus now it feels like the skin is stretching so tight that its pulling into a downward bend rather than a lateral bend.  Is it just due to the swelling from the surgery?  And the fact that I have only gotten like a half-erection every time (looks about 2/3 old size) because of the pain?  Does it get better or did I get a botched job?

3. I was uncircumsized before this event and now am circumsized, but it looks like the skin was not attached properly under the head.  theres about a 1/8in to 1/2 in (depending on where aroudn the head your looking at) of red skin that is definatly part of leftover from the head rather than the normal penile skin, and will I always have this obvious part where it changes color next to the head? or will that fade with time?

I'm sorry I know I have a lot of quesitons, but I'm really freaking out right now, and not sure if I really should have had the surgery or not.  If what I'm looking at now is what it's going to look like...I'm not even going to want my wife (some future wife) to ever see this thing...please someone help me.  Thanks.





«  IrishB OCD   Reply #121 on: September 16, 2006, 02:15:54 AM »


Well the surgery isn't too bad.  My doctor kept saying that I had a large penis in front of the cute young nurses...so that was pretty freaken sweet.  Lol sorry I'll stop acting...well like a 19 year old.  but as you can see... I'm starting to have a little better outlook on this.

Went in thursday for the surgery all together not too bad.  Woke up and they made me walk around and kicked me out of the recovery room because I was "too awake".  Apparantly I was flirting with all the nurses lol.  But went home not a lot of pain.  For those of you who are uncircumcised this will be easy to explain.  Pull back the skin on your penis and leave it that way.  Then put your jeans on and walk around.  That's about what it feels like.  Pretty much exactly how it feels.  For those of you who are circumcised, imagine the feeling when you scrape or peel of one layer of skin.  How it doesn't hurt all that bad but it kinda stings ya know?  The entire head of yoru penis.  That's about what it feels like (at first)  So not too too bad.

The erections.  Never in my life did I thought I would hate an erection.  And this is where I started to notice my age.  Its not completely unbearable, but it will leave you finding whatever position is best to quickly get rid of it (for me its letting like a kneeling position letting it hang) and most inportanly DON'T TIGHTEN THE MUSCLE! That's the hardest part.  You know the penis muscle?  The one that you tighten to hold in pee, and you can flex to make the penis move a little.  Well just like any other muscle, if you feel pain you tighten it.  but here that will make the erection harder and more painful.  IF you can learn to keep this loose it will pass.  It just wakes you up a few times in the night.  And i noticed my age because remember when you went through puberty and you got random erections at 10 o clock in the morning you couldn't get rid of?  Yah those still happening for me.  Makes spanish class really suck.

The pain of the head goes away rather quickly.  It basically just de-sensitizes the skin so it gets better.  The more baths and walking around naked you can do the better.  Then as the stitches desolve the pain becomes less frequent.  Only when the stitches catch on something like your jeans or boxers which kinda sucks.  But all together the pain really isn't too bad don't let it affect your decision for surgery.

Now the results.  For me were not so good.  This is why I've taken so long to respond.  I kinda went manic depressive for a little bit then now I've seen two seperate doctors regarding the results.  My surgery didn't go so well.  Firstly: I have a pretty sever "twist" in my penis near the base which was one of the maing problems in the first place.  While my doctore said ahead of time that would be easy too fix...he didn't.  So That's still plaging me.

2: Circumcision.  Apparently (by my bad opinion) it appears that he cut the skin on the bottom too short.  So during erections it cannot point up.  I tried to pull it up today and it was extremely painful.  So theres some advice, do not attempt to stretch your penis in a way it doesn't want to go right away (should've bene obviousi guess) the most painful thing of the entire operation so far.  Additionally the skin appears to be a little off (the seam onunderside of penis is a quarter inch left of skin underside of head).

3: Curves fixed incorrectly.  It appears that he missed the curves.  It
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