How do you decide when to have surgery?

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BrooksBro


Two years after diagnosis, I am approaching one year of proper treatment (PAV, traction, VED, testosterone replacement) by a competent urologist/surgeon (Larry Lipshultz, Houston).  My 40 degrees of bend makes intercourse awkward but still possible (never often enough).  There are times when I get weary of pumping, wearing the traction device, and taking handfuls of pills.  Then there is the ongoing medication expenses, mostly, but not completely, covered by private insurance.  

It seems more frequently lately that I think about giving up on all these noninvasive treatments and go for plication or graft surgery.  I do not think my physician does grafts, which would mean getting referral to Dr. Levine, and multiple trips to Chicago.  Sadly, it appears to me that even after surgery, there would still be ongoing traction and/or VED therapy, and my ED may still be present.

How do you decide when enough is enough and go under the knife?

jackp

Tough Decision!!!

The problem with just surgery to straighten your penis is that the ED issue will still be present.  In all cases I know of ED gets worse once it starts.

Do you know the cause of your ED? Venous leakage, corporal fibrosis, etc. Testosterone Replacement Therapy (TRT) will not fix ED, if it would mine would have been fixed years ago.  

Penile straightening only can cause loss of length. Sad to say most of us with peyronies loose 1 to 1.5 inches from the peyronies alone.

The Gold Standard surgery for peyronies with ED is an implant. If you have the straightening surgery first then the implant later the loss of length may not be helped with an implant that expands in both length and girth.

The only doctor I know that does a world class surgery is Dr. Douglas Milam at Vanderbilt.

If you would like send me an email to jwp104@att.net and I can foreward you more information.\

Jackp  

Brightdog

I had done the oral Vitamin E and the Verapamil injections and only got worse. I did not WANT surgery, but I was one of those cases where any arousal caused pain. No-one wanted to do surgery, and it was only after my bend was more than 90 degrees that surgery was even mentioned, and only at 160 degrees that I finally got serious attention. I had not had intercourse with my wife for at least 18 months because it wasn't possible - too painful, and the bend was too great for a woman whose tissues are more fragile since menopause. Your situation, as irritating and aggravating as it is for you, is still workable.

After surgery you would have to go through the same traction/VED protocol. You have to, in fact, if you want to prevent the graft from shrinking. I am only in week 3 and I already hate the whole process, but I am determined. Today I had my first erection since the surgery on July 26th - weak and about 2.5 or 3 inches smaller than I used to be, but at least it means I might not have ED. I didn't have ED before the surgery, so I have been keeping my fingers crossed.

When my bend was 40 degrees, surgery was not being offered as an option. It really is a last resort.

Noway

I seen a uro who specializes in peyronies disease and he said the plague is restricting blood flow in my penis thats why I have erectile dysfuntion.

chiguy

The traction device will help the size come back. I did not have surgery, but I know from speaking with Dr. Levine, he won't perform it unless it is a) either an absolute emergency or b) all other options have been exhausted. You appear to fall within category B. I bet after a consultation with him, you will feel a lot better.

Think about it this way. If you have surgery, the recovery time is 6 weeks and then you use the traction device for about 24 weeks. That's 30 weeks at a few hours a day and you can start having relations with your spouse way before that. Think about how long you have had the disease, then think about the recovery time.  

LWillisjr

From words of the wise:

1. Try other methods first. Stretching, VED, meds, VI injections, etc.

2. Exhaust all other options first.

3. Then and ONLY if your curvature is to the extent that makes penetrative sex difficult or impossible.

Said a different way, if you have no pain, and still able to have intercourse, then it doesn't matter how much your curvature is. This isn't a cosmetic option, or something to correct a small curvature when there is no pain and sex is still comfortable.

And even at that, there are several surgical procedures and options. Do your homework and select the one that applies to your condition. And only seek a surgeon who is an expert in this field, has a good reputation, and who does this type of surgery often.

Les
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

LWillisjr

Quote from: grayling on December 24, 2010, 01:59:04 PM
 Another, fess up at the airport security, too.  Just many little things like this.


I'm really curious why one would need to tell airport security about a penile implant.  
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

jackp

grayling

Air Port Security.  I don't do show and tell but if I wanted to fly and TSA wanted to know what I had between my legs I would drop my pants and say. "Can you do this?" as I pumped up the implant. ::) :) ;) :D

Also, general practice urologist are not good at penile surgery. You did not do your research on your doctor or the implant or you would have known it has an antibiotic coating.

Your lack of research, less than favorable outcome and you did not do your research. You want to come to this forum and tell everyone your sad story. Makes you look foolish. If you want to read about a great outcome read Les's history as well as mine.

If you had a less than favorable outcome with an IPP, or other penile surgery,there are doctors with the skills to fix it. Maybe only 2 or 3 in the US.

Jackp

BrooksBro

My doc explained the peyronies plaque prevents the erectile tissue from expanding to passively compress the veins and trap the blood, which results in weak erections.  Viagra and the other PDE-5 meds enhance the arterial blood inflow, but the outflow is more mechanical.  Venous leakage is present in about 15% of men with peyronies.  

Quote from: Noway on October 30, 2010, 09:09:57 PM
I seen a uro who specializes in peyronies disease and he said the plague is restricting blood flow in my penis thats why I have erectile dysfuntion.
[/i]

Old Man

Note to all:

MERRY CHRISTMAS AND A VERY HAPPY NEW YEAR TO ALL!!

One word about when to have an implant surgery done:  Implant surgery is the "last resort" in any therapy for Peyronies Disease. The best time to have an implant done is when all other forms of therapy/treatment have been exhausted. AND, when sexual penetration is no longer possible due to total deformity of the penile shaft. One should consider all other possibilities of therapy before even considering an implant.

The above is totally my own take on implants and this decision has been made after having worked with many guys who contemplated implants for any reason.

Best regards to everyone.

Old Man (81 and getting older every day!!)
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.

Old Man

grayling:

Yes, you are right about several things in your last post. Surgery for Peyronies Disease is absolutely the last resort for Peyronies Disease. One must exhaust all other efforts before deciding on having it done. Since the erectile tissue is removed to allow space for the implant, there is NO TURNING BACK~!

So, this forum has its place in that it tries its best to warn members about not having implant surgery until they have exhausted all other efforts.

Just wish that the whole world could know about the effects of Peyronies Disease and its problems. So, we here try our best to make every effort to include statements and posts about the implant surgery so that they can be warned.

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.

LWillisjr

Quote from: grayling on December 29, 2010, 09:24:09 AM
As for airport security, the implant resemples a strange explosive device when going through X-ray.  Can you imagine a TSA offical seeing the outline of a bunch of wires, pumps, and cylinders and not calling it out?  

This seems odd to me. From the studies that I have seem the new "back scatter" system can see through your clothes, but there is no visibility into the body itself. So I wouldn't think that an implant would show up at all if one got pulled out of line to go through the back scatter imager. And there should be very little metal with an implant so I wouldn't think it would set off the regular metal detection device either.

Jackp have you had any experience with going through security?
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

BrooksBro

Perhaps carry a letter from your physician or the implant manufacturer stating you have an implanted "medical device."  That way, when asked, you can offer to let them read the letter and you don't have to explain anything.

timk

I got an AMS "Medical Identification Card" all filled out by my doctor, the original purpose of which was to give doctors in ER's necessary info.

But since I always have it in my wallet, I was planning on showing it at airport security, if asked.

If you have an AMS implant, you should also have gotten such a card.

jackp

grayline

From my experience with peyronies and 100% ED for 15 years I coined the phrase of "gold standard" for men that have the same condition I do. I am not a doctor, I do not represent and device, doctor or hospital just my own story.

For those like me an IPP is the "gold standard" treatment.

Jackp

timk

What sold me on an implant was the fact that I couldn't get and maintain a useful erection and there was no other solution in sight.

I saw 3 doctors over the five years of dealing with my Peyronies Disease/ED problem and all were very skeptical of an implant. Once I decided to look into getting one, I contacted AMS and Coloplast. AMS said they couldn't provide me with any names of doctors and Coloplast never replied. I then asked AMS which hospitals were buying the most implants and finally got some useful info. From this I saw that they had given one of the hospitals a "Center of Excellence" award for implants. I went back to AMS and inquired if there were any other hospitals given that award. Only then did I finally get the info I was looking for.

So my experience has been just the opposite of being sold a bill of goods from some slick salesman. I had to go against the strong warnings of my doctors and almost literally drag the info out of the manufacturers.

And although I've only had my implant since August, I couldn't be more pleased. Sex is finally possible again.

jackp

Timk

I have had my implant over 26 months now. I can tell you it gets better and better.

Enjoy

Jackp

LWillisjr

Quote from: grayling on January 03, 2011, 04:40:22 PM
Call you local airport security, get the word from them.  I did, they said tell them you have an implant, same as you would a pacemaker, or you might get "seen" and questioned.
No, the new machines are able to show an outline of breasts and sex organs and an implant.  That's what all the security fuss is about.
Grayling

I don't have an implant, but the ones I am familiar with are completely contained within ones body. So yes I agree and understand that you can see outlines of body parts, the machines can't see into you. I agree having a card when asked would be helpful, but I still am not convinced that an implant will:
1. Set off the magnetron
2. Show up on the backscatter image

Maybe there are some older technology implants out there that I am not familiar with, and possibly not totally contained with the body cavity. I think these would be 3rd world or obsolete these days.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Brightdog

Hi there, folks.

Grayling: I continue to see improvement in my post-surgery erections. Yes, I originally lost 3 inches. More than an inch has been regained, even without sticking to the therapies (for various reasons - but I am gradually getting back to them). So I am currently in the 6" to 6.25" range, which is respectable. And other therapies had not worked for me.

I am curious about the term "gold standard" in these contexts. Back when I was having an unrelated medical issue, a doctor used this term with me when he was talking about a medication. I asked him about it, and he said "gold standard" didn't mean it was necessarily the flashiest or most progressive or expensive, but rather the treatment that had become the recognized stable treatment with the most studies behind it. In other words, the treatment against which others will be measured. So it's like "gold standard" in currency terms - it sets the value by which other therapies are evaluated.

It is interesting that it is seen as marketing language meant to sell you on something. My understanding was that it is medical jargon meant to express how standard a treatment is.

Brightdog

Quote from: grayling on February 17, 2011, 03:28:17 PM
With this gold standard also come some tin and lead tag-alongs.   Also, the fact that doctors and medical sales personnel use the term says something.  It is doubtful an alternative medicine specialist would ever use it.
I don't know if the alternative specialists use it, but some of the companies that cater to the alternative medicine market use it in the marketing of their products (Optimum Nutrition, Healthspan, Nutranetics) so I would imagine the term is actually used - and used variably - in both spheres. One of the great things about this site is that it allows us to share information about exactly this kind of thing - and then we can make better informed choices.

Noway

Im seeing a peyronies disease specialist and he told me you dont want to have surgery and thats about all he said about surgery.

jackp

Noway

Are you able to maintain an erection to completion of intercourse over 75% of the time?

You may need to see one of the great doctors recommended here. Dr. Milam, Dr. Lue or Dr. Levene.

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

Tim468

Jack, thanks for all the useful information you share on this topic here. It is plain spoken, seems to always be correct, and invariably helpful.

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

Noway

Jackp

If I wait like 3 days without masterbating I can have sex easily once. If were talking about sex on a regular basis no. I will lose my erection and I wont be sensitive enough to feel anything. Also my erections are usually not rock hard there usually some play in it. Im in canada and im seeing a peyronies disease specialist hes thinking he can get my erections hard again. He doesnt believe in surgery and sais you dont want someone playing in there.

Noway

Pentox helped me greatly but not good enough. I will see what the doctor has to say im going to see him soon. If everything fails I will probably need an implant and im not looking forward to getting that at my age.

voulezvous

I'm curious as to what your age is? I had penile implant surgery @ age 68 & everything went very well. Not only was it covered by Medicare, but now I am finding a new world in enjoying sex again.

If you are in relatively good health & have no other urolology disorders I would certainly consider it. Yes, its a "last resort" & the recovery is no picnic but, all things considered, if you have a surgeon who is a specialist in sexual issues & has done a number of implants on both young and old patients, don't reject the possibility unless told to do so for a sensible reason by a urologist.

Noway

voulezvous im 25 and the doctor is trying different things on me. I am seeing positive results from pentox so we will see what the doctor sais. If It really comes down to him saying I need an implant than thats what im going to have to do I will have no choice. I heard that the implant lasts like 15 years or something though? Is this true?  

jackp

Noway

From what you symptoms you are having more issues than peyronies. You could be developing Venous Leakage or Corporal Fibrosis. You need a Color Doppler both flaccid and erect to make sure.

At 25 a lot doctors will not do much for you because they think you are too young. Try asking them what they would do without a regular erection and able to complete intercourse. Most guys get the "silent treatment" for an answer.

I know a couple of men your age that went to several doctors in there area. None would help them. Finally they traveled 100's of miles to find a good doctor that would.

Look at it this way. It's your sex life not the doctors. There must be someone in Canada that can help you.

Good Luck

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


Noway

Ive been checked for blood flow and all of that in the erect state and flacid they said its all good. Im seeing improvements with pentox I will wait to see what he says.

crookedjohn

I  decided that I  had 2 options live with a 80 to 90 degree dorsal curve or surgery.  I had surgery this week. The doctor L. Dean Knoll, said the surgery went well. That's all I have for now.  
Age 64, Incision and grafting surgery 11/6/2017 for rapid onset 90 degree dorsal curve as a result of injury during sexual intercourse.