Reconstructive surgery for size loss

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MikeSmith0

Has anyone looked into this at all?  For length, there's very little to do (the ligament they cut only gives an inch max - and you have to use traction for a year anyway).  For girth, things are also complicated but more promising.  There is a big debate between alloderm (or similar grafts) and fat - but grafts seem to be better.

Few surgeons will really operate until Peyronies Disease is out of the way - though it depends on the surgeon.  One uses a silicone implant and said he uses it over the top of a penis with Peyronies Disease - and it straightens it out over time because it's like a stent.  I am not sure about the safety of having such an implant, however.  Several pts have had these implants removed.  Another one told me he'd give me xiaflex injections for $6000 a piece (starting now - and I'd have to pay out of pocket since it is off label) and made it sound like it would only take a few injections to go away (the protocol in the trial was 4 cycles of 2 = 8 shots to reduce it 30-40%)...and then do enhancement surgery after that.  I already am confused that this surgeon would (a) get xiaflex off label when auxilium made it clear that they would not allow this and (b) thinks it would only take a few shots to mostly go away.  I assume he's getting the xiaflex from his colleagues...which makes me question this even more.  Auxilium is not selling the drug to everyone yet.  Also, I have heard other shady stories about penis enlargement surgeons - so it's not the best field exactly.  If I did 2 shots with this guy, he'd get $12,000 - and I'd get no guarantee of results... and we could go up to $48,000. Then, he'd want another $15,000 for the enhancement surgery.  I don't think that is going to happen... but I just cant live w/ what peyronies did to me anymore.  I think my penis was bigger when i was 12.  i don't even care about the curve but he won't operate with the curve as it is.  If I wait for xiaflex approval by the FDA, this does not guarantee my insurance will pay anyway - they do not pay for xiaflex with DC.  

Has anyone talked to ANY surgeon that will actually address the size issue?  Are there any urologists who understand that size is an issue and I am not satisfied just having a tiny penis without a curve (vs. a tiny penis with a curve?)  I'd rather just get to a normal size and leave the curve!

james1947

MikeSmith0

All this story like many other penis enlargement surgery and medications sound like money milking from desperate people.
I can understand you concern regarding the size, mine down from 18 to 12cm, now back to 13 from VED usage. Girth is half from what I had.
You are right regarding size, like a 12 year old boy.

Regarding cutting the ligament, it will not give you an inch, it gives 1/2" and your penis will always hang down. I was advised not to do that also by my uro and also Jackp.

If you have insurance or have $ 12,000 you can make the implant with an excellent surgeon, Dr. Drogo Montague at the Cleveland Clinic
The AMS 700 LGX implant increasing length an girth during a period of up to three years after the implant. If you will read Jackp blog, you will find a lot of information on the subject

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

MikeSmith0

Thanks James - i have heard mixed results on implants restoring size depending on the degree of fibrosis in the tunica, the doctor who places them, and the implant itself (AMS LGX was told to be as an "absolute no" for peyronies patients by 3 top doctors - so yes I know Jack is happy with it -- but as always with this disease, you get conflicting info & advice - and of course a doc told be about the "dozens" he takes out every year and replaces them with coloplast...the issue is that the AMS is not as strong to withstand the fibrotic tunica as the coloplast - supposedly).  Doctors also didn't want me to have an implant because of my age...and the possibility i'd need to replace it 5+ times for the rest of my life. Plus i am single and talked to a single person who had an implant and it said it ruined his sex life.  It freaked out his partners. Granted that is just 1 guy's opinion but so are the positive comments.

We had almost identical size loss...thanks for posting that.  Sometimes I feel like I had it worse than everyone else.  I'm glad this group is here - if for any reason - to hear i am not alone in this.  In many threads, guys have not reported girth loss - and in my case that was the worst of it.  Almost 40% gone....it is an embarrassment.  

james1947

Regarding the AMS 700 LGX, have some forums dealing with ED and the majority are implanting this one with excellent reported results.
I will send you a PM on the subject.
Regarding:
Quotethe issue is that the AMS is not as strong to withstand the fibrotic tunica as the coloplast - supposedly
is because doctors incompetency. A good doctor will take care of the Peyronies plaques during the implant surgery (incision, removal, etc').
The Coloplast is more rigid and is used for people that have a big penis (over 20 or 21cm).
For us, that lose so much length and girth the AMS 700 LGX is the ideal. I lost more than 50% girth and it is devastating.

I understand your concern because of your young age. In my case, if the average implant life is 15 years I will be 80 by then. Who knows where I will be at that time?

Regarding freaking out the partners, I think have many ways if it is not an serious relationship, don't must to talk about it. Can find ways to inflate it in a way that the partner will not understand and your performances will be with no competition.
I read many other opinions and also implants for people less than 20 year old.

James
 
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Old Man

James:

Don't despair! I am 82 approaching 83 September 15th this year!

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

james1947

Old Man

No!!! I am not in despair. Just the life expectancy average for males in my family is 74  :( I may be in the high side so  is 82.  :)
For woman in my family the average is 90  ;D Killing early the husbands an then have long life?  :) ;D :) ;D

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Old Man

James:

My family history of the men's life expectancy was around 50 to 65 years of age. My brother, who lived to be 83, and I are the only ones who have survived into the 80s.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

jackp

Mike

Send me an email so I can put you in touch with a single young man that had peyronies with severe ED and hour glassing. None of the doctors in Houston, even those at M D Anderson, or on the gulf coast would help him.

He went to Dr. Milam 2 years ago, at age 25, and he did an implant with modeling and the LGX. The results are amazing. I have a few pictures I can share with you also.

It took him a while to build up his confidence to have sex with a girl. He is now in his second relationship and both the girls he has been with tell him he is the best they ever had.

His story is much longer, this is just the Readers Digest version.

I don't know where you live but there are many doctors that still do not believe that the LGX will straighten a peyronies curve and that you can gain back lost size. There are only 4 or 5 doctors in the world that have the skills you need, and Dr. Milam at Vanderbilt is the best.

Don't get stuck with a non length expanding implant. If I did I would be stuck with an 4" penis. Now I have gained back over 90% of my length lost to peyronies. My story I call "One Mans Journey" and my story at 3 1/2 years of having my implant is on this forum and in my blog.

There is help. You just have to find the right doctor.

Jackp
http://jackp-penileimplant.blogspot.com/  

MikeSmith0

Well, here's how it has gone...

Went to [top doc 1 - city 1] to tell me he won't put in the AMS & I am too young for an implant.  He would prefer to do plication...and only does coloplast implants.

Went to [top doc 2 - city 2] to tell me he would do the coloplast (he does the most of any doctor in the country).  He won't touch the plaque but it will fix itself over time, he said.  A different doctor called him a salesman and said I shouldn't buy his hype that I would get all of my size back.

Went to Nashville for Milam to tell me I am only a "moderate case" and he's not sure if he'd prefer to do the coloplast rather than the AMS on me...and he wanted to think about it. (curve is 40-50 so that's apparently moderate).  This doctor spent the most time with me of any doctor - and seemed most sincere too - so I actually would be comfortable going there depending on what my insurance says bc I don't live in TN.  That place was BUSY though, so I am not sure what it's like to have surgery and follow ups there...especially from out of state.

Went to [top doc 4 - city 4] to say he would not do an implant at all & it would be a huge mistake.  He said he'd never put in an AMS and it would break in 2-3 years and I'd be back in the office getting it replaced.  He said it is all marketing hype with the length expansion.

I am not making this up or trying to argue.  I am just very very frustrated with my situation and the conflicting information I am getting.  These are the leading doctors - and even Milam didn't want to put in the AMS for sure.  I have spent thousands on flights and hotels and time off to see these guys (and I saw 4 more) and I never got anywhere.  

Many of them did not think the implant would restore size, except doc # 2 - and then # 1 called him a "Salesman" and told me not to believe that...and I'd probably lose size (length) - but girth i might regain.

One problem is I still have natural function and respond to ED meds...so they dont want to destroy natural function bc i have a cosmetic concern.

None will do implant w/ grafting in the same surgery - but I am not so severe that this is needed, I was told by most of them. Most felt the implant would "override" the plaque anyway.  All agreed I was too young to be "asking for" an implant.  None seemed to care about my size issue except #2.  They think 5" is normal with 4" girth.  Seriously.  Number 2 was the only honest one about the fact it's small.

I have seen 6 other doctors in the last 2 years, but those are the main ones.  It's been one long hellish journey - I'm out thousands in travel costs and have nothing to show for it...and even if I had an implant, I am single - so that's not exactly something I can hide.  And, a few of the docs said the pump would be very obvious on me - just anatomically.  It can't be hidden as easily due to the situation down there.  Most men have more fat, or something... i dont understand exactly - but I wouldn't be fooling anyone was the point.

james1947

MikeSmith0

Your frustration is understandable, but:
Dr. Milam is doing modeling for the Peyronies during the implant surgery.
You may read Jack blog, the AMS 700 LGX it is restoring length and girth.
There are many testimonies regarding implants, I will send you a PM.
Don't give up!!!

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

LWillisjr

Quote from: MikeSmith0 on July 16, 2012, 07:35:35 PM

One problem is I still have natural function and respond to ED meds...so they dont want to destroy natural function bc i have a cosmetic concern.


Then why do you want an implant???  I had a 70 degree curve, and grafting surgery alone made me perfectly straight. I still function with only small dosages of ED meds and I'm quite happy.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

MikeSmith0

Quote from: lwillisjr on July 16, 2012, 10:53:01 PM
Quote from: MikeSmith0 on July 16, 2012, 07:35:35 PM

One problem is I still have natural function and respond to ED meds...so they dont want to destroy natural function bc i have a cosmetic concern.


Then why do you want an implant???  I had a 70 degree curve, and grafting surgery alone made me perfectly straight. I still function with only small dosages of ED meds and I'm quite happy.

The graft won't help the girth lost in other areas - just the main plaque.  I have scar tissue in other areas that is less palpable - but it prevents the penis from expanding fully on erection as it once did (virtually the whole shaft is narrower).  A graft is a little better for people with one primary plaque and minimal other scarring elsewhere.

Also The grafting docs said I am risky in that I do have moderate ED without the drugs.  

One of the top Peyronies Disease docs told me "you need to stop trying to look like you did before - you never will - no matter what surgery we do or what I inject in there" - and I have not come to accept that statement yet.

Woodman

Sorry to hear it with all the doctors Mike. I went on a doctor search too in the first 2-3 yrs I had this mess. I just had my 5 yr anniversary this July with Peyronies. My story is not as in depth as yours but I went to 4 to 5 doctors and none of them had the same opinion of what to do for my case either. I was upset for a long time. I also had a hard time accepting that this is the new me and the old one will never be here again. In the last yr or so I ve finally rapped my head around the acceptance part. I am not 100% accepted it and I am sure I never will but I finally got to the point where I am mostly through it. It's a very difficult concept to try and explain at least for me.

I think for the most part if you still have natural function the docs tend to shy away from surgery because of post operative risk. I asked Dr. Levine and he wouldn't touch me with a ten foot pole to do graphing. He said only thing he would do is a plication.

I hope you find you solution real soon.  I know this mess can consume you at times.

fubar

Mike

Have been thinking about you everyday after reading these post. I have regained my sexual function
and know that this takes the implant option off the table for me. In some ways this is a blessing and on the other hand
Gives me stress.The idea of an implant correcting my deformity seemed like a great option for my existing problem specially because i have hour glassing  and hinge.

After seeing so many doctors your head must be spinning wondering what there is for you. I am sure there is a way
To find an answer and to have a doctor agree in what is best for you. I know many of us care deeply about other suffers here and wish to offer help. Mike your mail box is full and i know that some have been trying to reach you. Please delete some of your pm's so  that those potentially able to help can get through.

Hang in there

Fubar

Tim468

Mike,

I think the docs are generally giving you good advice - that you should not have an implant.

The quote about not looking like you did, is someone being honest with you. He's right.

What you might get for all your trouble is:

A penis with numbness in the tip.
No natural ability to get an erection ontaneously.
Infection, tissue breakdown and tissue loss, with attendant scarring and worsening of the erect shape... if you can get an erection

I could go on. The best bet if you can still get erections is the VED and anti inflammatory diet and meds - and a willingness to believe that you are lovable no matter what your penis looks like.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Noway

I have severe ed not really a problem with the curve and i cant get an implant either im too young wtf they think surgery will cure the ed. Im also worried about losing size too i dont understand why its that complicated too not lose any size or gain size were in the 20th century. Like my penis i think has the hinge effect and i cant get really hard erections but then sometimes i can. I get erections but freaken ed is bs. Like its my body if i want an implant i should be able too get it. I would rather get an implant then get surgery and i still have ed. f the doctors.  

james1947

Noway

QuoteLike its my body if i want an implant i should be able too get it

Surgery and implant are indeed a last resort, but in cases of severe ED you may have no choices.
I think JackP post a few posts bellow gives some clarifications regarding size lost.
Read JackP blog also, have detailed information on the subject.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum