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Peyronies Disease TREATMENT Discussion Boards => Surgery for Peyronie's Disease => Topic started by: SunSeeker on January 22, 2016, 08:00:45 AM

Title: Long term outcomes of peyronie's disease surgery
Post by: SunSeeker on January 22, 2016, 08:00:45 AM
Hi guys,

I read this post on the london andorlogy website. Thought might be interested.

Long term outcomes of Peyronie's disease treatment | London Andrology Institute (http://london-andrology.co.uk/peyronies-disease-bent-penis-penile-curvature/long-term-outcomes-of-peyronies-disease-treatment/)

The paper can be found here:

10 Years' Plaque Incision and Vein Grafting for Peyronie's Disease: Does Time Matter? - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/26755094)

I just recently had my grafting procedure so it scared me a little bit tbh. SO far so good. Are there any members here htat had a peyronie's surgery many years ago that they can report on their outcomes?
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on January 22, 2016, 03:53:39 PM
On that note, I saw Dr Kuehhas today for a check up. It's been just over 8 weeks since surgery and I'm nowhere near completely healed. The internal sutures take around 6 months to completely dissolve.

I still have some pain ( especially today after being injected in my already sore dick twice!) but the healing is coming along, my erections are pretty much dead straight, and sensation is coming back.

Yes, I'm still way down on size, but that's why they stress the importance of continuous penile 'physio'  So, it's continue with the Phallosan, use the VED (carefully!) and I should hopefully have my old penis back by summer at the latest.

And yes, the aftercare treatment is something I've never experienced before. Franklin has been is constant contact through Whatsapp. If I have any doubts or question, he answers them within hours. You really couldn't ask for better service from a busy surgeon who is one of the foremost in his field.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: LWillisjr on January 22, 2016, 08:03:22 PM
Had my grafting surgery 8 years ago and going great. No side effects, no regrets.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: james1947 on January 23, 2016, 02:30:39 AM
Good to read your post  Jonbinspain :)

James
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on January 23, 2016, 04:46:50 AM
Thanks James;

Re your question on the other thread, the cost of my surgery - The Egydio Technique for Peyronies - was £8500. That includes all your follow up appointments and Franklin's incomparable aftercare service.

There is no hospital stay assuming there are no complications. If you decide to ahead, the surgery is in the morning and you are released the same afternoon or evening once the worst of anesthetic has worn off.

You would need to be in London for at least 3/4 days as Franklin will want to see you the day before surgery and the day after.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: james1947 on January 24, 2016, 12:32:13 AM
Thanks for the information Jonbinspain
Releasing you same day shows he believes in his work quality :)

James
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: MoatazKad on January 24, 2016, 03:29:52 AM
that centre also does penile implants and apparently the're the highest volume in the UK
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Frank55 on January 24, 2016, 11:22:30 AM
Jon,

Thanks for the update. I remember reading you were going back to see Kuehhas on Friday and I was wondering what you might report afterwards.

I have a preliminary video conference with him tomorrow. Are you still pleased that you made the decision to proceed with the Egydio procedure?

And did Dr. Kuehhas seem happy with your progress? Any concerns on his part or yours?

Have you been out on a "test drive" since the procedure?

Probably not, since it sounds like you still have some pain and are still gaining back sensation. But it sounds like you are getting close to the point where such a "drive" sounds appealing.

On another note, I also received a quotation from a local urologist this week for Xiaflex treatments. Sobering how high the price is. My haunting concern (just won't go away) is the thought of going through multiple Xiaflex treatments, only to find at the end the curvature level is still unacceptable.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on January 24, 2016, 01:56:38 PM
Hi Frank;

Yes, the full healing process is really in months rather than weeks, as I implied in my post.

Franklin was pleased with how it had gone. He stressed how it was important now to continue with the stretching to give the penis back its flexibility.

My erections are getting better, and bigger, little by little. More importantly, they're straight!

No, I haven't been for a test drive yet. On reflection, I thought I'd save it for when I was closer to fully recovered.

Xialflex is an option, and yes it's expensive. In my case, it was thought that I would need 3 or 4 courses of treatment, the cost of which would be not far short of surgery. Plus, in my case, even if successful ( and there's no guarantees) I would still have been left with a significant degree of curvature.

It's best that you discuss your individual case with him. He's very open and answers questions and concerns without hesitation.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: MoatazKad on January 24, 2016, 09:56:04 PM
is the Egydio procedure for those who can still maintain some sort of erection?
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on January 25, 2016, 02:33:10 AM
Basically, yes. The surgeon will check for ED. If there is ED ( diagnosed by ultrasound of the blood flow in the penis) it would depend on the cause. If there is venous leakage, that would have to be addressed first.

Without wishing to appear blunt or rude, there's little point in going through this to get a straight penis that you can't keep up!.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Frank55 on January 25, 2016, 08:44:36 AM
Thanks for the info Jon. Therein lies the Xiaflex problem - the lack of guarantees. And of course there are no refunds if the procedure does not work (or works only to a small degree.)

And what the Doctor might see as a "success" from that treatment may not seem like a success at all to the patient. The Doctor is not the one who has to live with the residual curvature (if there is any.)

Obviously there are risks with surgery as well, but the probability of success is higher.

By the way, I think holding off on the test drive is actually a good idea. Wait until you are really ready. Which does not sound too far away.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on January 25, 2016, 10:34:43 AM
No problem, Frank. Hope your talk with Franklin goes well, let us know what he suggests. I realise  that without seeing you it's difficult for him to be too specific.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Frank55 on January 26, 2016, 07:09:37 AM
Jon,

Meeting actually went well despite the lack of "in person" consultation. Franklin is a tour de force, as I expected.

I told him my brief history with this condition, he explained the type of surgery he performs and how it is different from other procedures. He also reviewed the video they have on their web site of how the surgery is performed.

He is open skeptical of the value of Pentox, but does think Cialis has value.

He also wanted to know if I had been ultrasound-tested for penile blood flow, and if I'm able to generate a strong erection despite the curvature. Yes on both counts - and he said those were both good signs.

He suggested I get a Phallosan Forte in the interim and begin using it. I told him that I can't wear that to work, but could use if for as long as needed after I get home each day.

We also briefly discussed Xiaflex and the good/bad parts of that treatment. He generally agreed with the overall theme of the items I've posted below.

Funny - until yesterday, I thought he was British. The accent surprised me.

Anyway, I was impressed overall and intend to continue with the possibility of working with him.

The bottom line was that I need to wait until we are certain the acute stage is complete (I was diagnosed just 4 months ago.) I have another meeting with him in a month.

Wanted to ask you - are you using the Phallosan as you sleep? That also sounds kind of awkward/uncomfortable, but apparently it can be done. That would make it easier for me to get more hours in with it.

Best,
Frank
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on January 26, 2016, 09:41:10 AM
Frank;

Yes, despite his English being very good, he's Austrian.

He also advocated Cialis to me as being beneficial, more so than Pentox.

As I explained to, I think, Moataz kid, there's little point in going through this to end up with a straight dick that you can't keep up. So, yes, blood flow to the penis is crucial.

Re the Phallosan: this may well be because of my recent surgery, but I can't wear the thing for more than 2-3 hours max before the discomfort becomes too much. Franklin himself will admit that it's not perfect, but it's the best currently available. You may find it easier to wear than I do, but I wouldn't attempt to sleep with it in currently. I think I'd have to be in a coma! 

Cheers;
Jon
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Bernhard on March 17, 2016, 12:32:15 PM
Unfortunately the topic of the London Group was closed before I was able to write there. Thats why I place it here, as a warning to everybody:

Hi,

my name is Bernhard Schaffmann, i am the friend Matthias told about. Matthias is the one whos writing was deleted in this forum because some members were so naive not to believe his findings. Matthias is very upset and will not write and help any more but thank God he is much pissed off as well so he did investigate the last 10 days for hours to find all the links and proves of what he was writing. Thank God nobody can hide the truth in internet and thank God the German Court System is open to the public.
The truth about then "London Group" and "Dr.Kuehas" is the following:


1.   There is NO international group of high quality doctors running a high specialized center in London, or Vienne or elsewhere. As you can see when you check the WHOIS URL ownership, ALL domains, including the one in Austria, are owned by a guy called "Christos Konstantinidis", calling himself "The Andrology Company" living in an Apartment in London. See for example ownership under link:

Check Vienna:
"wien-andrologie.at" under www.nic.at  (can not copy whois link)

Check Dubai:
"dubai-andrology.ae" under Registry Portal :: Whois Lookup (http://whois.aeda.net.ae/whois/whois_local.jsp;jsessionid=3B6ED497A92CFB89604445C19E29F60F?tab=0&t=1457781769843) (can not copy whois link)

Check London:
"london-andrology.co.uk" under

WHOIS Lookup Tool - Nominet (http://www.nominet.uk/whois/?query=london-andrology.co.uk#whois-results)


2.   This Christos is the Son of a Greek doctor called Konstantinos (Kostas) Konstantinidis, who got fired by UGRS because of his low quality work and bad behavior towards patients. See UGRS doctors list for information under link:

Our doctors introduce themselves (http://www.deutsches-zentrum-urologie.com/en/doctors.html)


3.   Against this Konstantinos (Kostas) Konstantinidis 9 Malpractice-law cases are running for the moment in Germany (in Germany only, there must be many more in other countries !), the cases are:

Dobre ./. Konstantinidis
Az. 22 U 126/11, Landgericht Darmstadt

Dobner ./. Konstantinidis
Az. 2 O 386/12, Landgericht Darmstadt

Rompa ./. Konstantinidis
Az. 3 O 372/11, Landgericht Darmstadt

Kopf ./. Konstantinidis
Az. 3 OH 3/13, Landgericht Darmstadt

Braun ./. Konstantinidis
Az. 10 O 310/13, Landgericht Darmstadt

Pfaffl ./. Konstantinidis
Az. 10 O 381/14, Landgericht Darmstadt

The court told Matthias that there are 3 more to come which do not have a case-number (Az.) yet !


4.   On top of these cases, the German authorities responsible for medical doctors, the "Landespruefungsamt Hessen" sued him by court as well as he is not allowed to work as a medical doctor:

Landespruefungsamt (LPA) ./. Konstantinidis
Az. 7 A 1307/15 Z, Verwaltungsgericht Kassel


5.   On top the Chamber of Doctors called "Landesaerztekammer Hessen" sued him by court because there IS NO GROUP of doctors, he is the guy behind everything and telling criminal lies. On top he was sued by court for charging much too high prices:

Landeaaerztekammer ./. Konstantinidis
Az. 21 K 1976/13.GI, Berufsgericht fuer Heilberufe Giessen


6.   This Kostas Konstantinidis is not allowed to work in Europe any more and is now working for his own "group" in Dubai. Pretending that he is not only member of UGRS but chairman. Even he got totally fired. Check these links:

Dr. Konstantinos Konstantinidis | International Andrology Dubai (http://dubai-andrology.com/doctors/dr-konstantinidis/)


7.   Together with him Prof. Herwig, an Austrian guy who got fired by the University Clinic Vienna, is working in Dubai. Check links:

Dr. Konstantinos Konstantinidis | Andrologist & Neurologist Surgeon Dubai (http://www.brms.ae/dr-konstantinos-konstantinidis/)

http://www.brms.ae/prof-dr-ralf-herwig/


8.   Because Konstantinidis even he is a sued criminal wanted to still earn money in Europe – it seems Europeans are most easy to cheat – he "installed" his son to buy the domains and, as there is no group of doctors as the German court found out, "installed" an Assistant doctor from Herwig, called Kuehas, to operate patients. Check link:

Dr Franklin Kuehhas | London Andrology Institute (http://london-andrology.co.uk/doctors/dr-franklin-kuehhas/)


9.   By doing so they announce a simple operation technique to be high standard and sell it for high price again, called the "Egydio" technique. Egydio is a doctor from Sao Paulo (South America) who is not allowed to work in Europe. You can call NHS Services to find out.

Link to NHS: https://www.england.nhs.uk/london/


So finally: all who think that they got high quality treated by a group of specialized doctors are quiet naive. The truth is: they spended their money to a Greek Crook family who is sued criminal but still cheats patients !
To cheat ill people is ethically the worsest thing a man can do !

This Paulo Egydio is a crook, too, not allowed to work in Europe, but selling since years his non working technique to hundrets of simple minded money hungry doctors for Millions of Euro.
The well recommended Rudolfstiftung Vienna, who has an eye on Konstantinidis, Egydio, Herwig and Kuehhas since years was able to proof by a study that the results of this "great" technique are a catastrophy.

This study was first published by the European Association of Urology (https://uroweb.org/ ) and a great warning to everybody. The main Author was Dr.Wimpissinger.
Suddenly this study was deleted by EAU again. The only one still publishing this truth is the independent magazine "Urology Times", see:

Outcomes of Peyronie's surgery worsen over time | Urology Times (http://urologytimes.modernmedicine.com/urology-times/news/modernmedicine/modern-medicine-news/outcomes-peyronies-surgery-worsen-over-time)

The EAU and others replaced the study by the study  10 Years' Plaque Incision and Vein Grafting for Peyronie's Disease: Does Time Matter? - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/26755094) which is "suddenly" showing better results. The main author is the SAME, Dr.Wimpissinger. One may wonder why the main author should change his opinion 180 degrees in short time ?!! The answer is simple: "suddenly" there are more "co-authors" than in the original study, meaning the truth was "modified", after it went clear to many doctors who bought the Egydio technique in the past, that by the findings of the first study many patients from the past could sue them for malpractice.

So the CEOs of EAU decided to save the members. More than saving the patients health.
This unfortunately happens often in medicine, like media tells us.

Believe what you want. The truth is there and clear.

Bernhard
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on March 17, 2016, 01:11:00 PM
Bernhard;

Firstly, as I'm sure you're aware, medicine is not exact science. And that any surgery to such a delicate part of the male anatomy carries significant risks, both short and long term.

I know nothing of Dr Konstantinidis and I can only speak as I find, I went to Dr Kuehhas with an sexually unusable penis. I had an almost 90 degree dorsolateral curvature. He operated using the Egydio technique with some grafting too. I am only three months post surgery, but I am delighted with the results. My penis is straight again, I have no ED, and sensation is all coming back slowly.

In my view, and I am not alone in this, Dr Kuehhas is an excellent surgeon.

Ok, maybe  in ten years i can possibly have problems. I can't know this, neither can you!

The Egydio technique has been studied and has been shown to provide good long term results
Long-term results of the surgical treatment of Peyronie's disease with Egydio's technique: a European multicentre study. - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/21743482)

Lastly, I am struggling to understand the motives of both you and your colleague, Mathias, who seem so intent on attacking the integrity and skills of a surgeon who is almost universally respected by the members of this forum.





Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Laveley on March 17, 2016, 04:59:31 PM
What type of graft is used in this so called "Egydio technique"?
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on March 17, 2016, 05:01:25 PM
You can find that for yourself on Google. Normally bovine pericard.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Laveley on March 17, 2016, 05:23:10 PM
I asked because, apparently, theres a lot of materials which can be used as graft and, for what i heard, the big discussion here on Brazil is which one is the best. My doc, for example, uses tissue from the own tunica extracted from the crural region.

Also, before searching for this forum, never heard before of such "Egydio technique".... all professionals here seems to call grafting surgery of, well, grafting surgery. So, there is something special about this technique that differentiates from others "normal" grafting surgeries?

Last, but not least, my doc said he makes the two types of surgeries, the one with the incision and suture (nesbit method, i think) and the other with graft and he said that it depends largely of each case to apply each surgery...
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on March 17, 2016, 05:54:49 PM
Dr Paul Egydio is a Brazilian surgeon. I'm surprised that you've never heard of him or his technique.

This is from Science Direct

The Egydio geometrical procedure for managing penile curvature using a single relaxing incision: A single-centre experience with 330 patients (http://www.sciencedirect.com/science/article/pii/S2090598X15001060)
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Laveley on March 17, 2016, 09:33:40 PM
Gonna ask one last time: why do you guys call the traditional grafting surgery as "doctor x's technique"?
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: skunkworks on March 17, 2016, 10:59:06 PM
Because Egydio is a specific method of incision and grafting surgery, one of several different methods.

QuoteThere are several different methods, including the H-type incision, Y-type incision, Egydio technique, or plaque excision, among others [23], [61] and [62].

http://www.sciencedirect.com/science/article/pii/S2090598X13000363 (http://www.sciencedirect.com/science/article/pii/S2090598X13000363)
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on March 18, 2016, 02:43:28 AM
Lovely;

As far as I'm aware because Egydio was the first to employ geometric principles to ensure straightening of the penis.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Bernhard on March 18, 2016, 05:58:52 AM
First of all, if someone is doupting Matthias findings here are some datas:
The major responsible Court is the Landgericht Darmstadt, Adress: Mathildenplatz 13, 64283 Darmstadt,  Phone: +49 6151 9920
The defending lawfirms were Jost, Roth & Collegen, Adress: Stephanstrasse 3, 60313 Frankfurt, Phone: +49 69 209739204 and lawfirm Knarr & Knopp, Adress: Bleichstrasse 2, 64283 Darmstadt, Phone: +49 6151 29700
All in Germany of course.
So everybody can call there, I guess they speak English.

Why Matthias and now me are writing this ? Honestly your question is strange. There is a crook group of doctors (its not even a group, just the greek family Konstantinidis, pretending to be a big "group"), who mistreated many patients already, who are sued by Court that they tell wrong things and work without legal permission, and you are asking WHY we are warning ???!
BECAUSE we care about other human beings who have the same problem like we.
Matthias and me of course got in contact with this "London Group" while searching for the place to be operated. They do big advertisements.
But Matthias, a clever guy, was wondering very soon why this smart young guy Kuehas is writing that he has "decades" of experience. Did he start in the kindergarden already ?
We decided that we will not to fall for these people.
If you got treated by Kuehas - but maybe you are just a fake patient - and are happy by getting treated by a Crook and maybe becoming impotent in a few years, its your personal opinion, but please let stupidity not become common sense.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on March 18, 2016, 07:36:10 AM
Your insults are getting a little wearing!!

I am a real person! I suffered from Peyronirs disease for 4 years or more. Dr Kuehhas operated on me using The Egydio Technique and now my penis is straight again. I have no ED, and sensation is all coming back. Maybe I will have a small loss in size, I don't know yet. And I won't know until  the internal sutures have completely dissolved. If there is any loss of length it will be minimal.

I really do not see what you hope to gain by this?  I am not alone here in having been successfully treated by Dr Kuehhas - and by the way, if you're going to insult him and disparage his reputation, at least try and spell his name right!!  - I am perfectly genuine, as I assume are the other members of this forum who have been successfully treated by Dr Kuehhas.

If I had been mistreated, or felt I had been mistreated in any way, I would say so. I haven't.

And if you feel there is such a great risk of erectile dysfunction after surgery using the Egydio technique, please provide some statistics to back up this assertion. Perhaps you would also like to tell us the proven success rate of your own surgical technique?  And any comparative percentage figures of post operative erectile dysfunction you have?
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Bernhard on March 18, 2016, 08:54:12 AM
Ha ! Thank you  to show to all of us here, that you are NOT a real patient but en employee of Konstantinidis or Kuehhas.
My post made you so much angry that you missed in choosing your words. You are asking ME that I shell show the "success rate of my own surgical technique " ?? Helloooo ! In the contrary to you I am not the doctor himself or an employee I am a patient, I do not have an own technique. I do not operate myself.
"comparative percentage figures of post operative erectile dysfunction" sounds really like a REAL patient.
You had Peyronies for 4 years "or more". Hey guys, I know even the second where my curvature first showed up. This REAL patient does not even know the year ???!
Thank you Mr. Konstantinidis junior to introduce yourself to this forum !
P.S. I go for Spain for vacation since the age of 3. In my experience a guy from "Spain" like you, does not speak many words in English, like the French.
Could it be that your protection server is based in Spain, Mr. Konstantinidis junior ?!
You have 801 posts in this forum ?? Wow, you are doing great soft marketing !
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: skunkworks on March 18, 2016, 09:17:02 AM
Quote from: Bernhard on March 18, 2016, 08:54:12 AM
Ha ! Thank you  to show to all of us here, that you are NOT a real patient

Jobinspain joined the forum in 2012. He did not mention Kuehhas until 2016, he didn't even mention surgery until 2016! Your claim that he is not a real sufferer is proven wrong simply by those two numbers as no-one intent on advertising is going to maintain a persona for 4 years with zero mention of what they are allegedly there to advertise for.

As to him not knowing the exact date his Peyronie's started and claiming that as further proof of him being a 'fake patient', that is another mistake by you. There are quite a few members here for who the condition came on very gradually, making it impossible to pinpoint when it began. Some do not even remember any possible moment of trauma that could have caused it to begin.

You make a lot of claims, and post a lot of links. None of those links contain any evidence to back up your claims about the doctors and their competency, or any of the legal issues you mention with regards to them.

Post real evidence or leave. Real evidence being links to actual information, everything is online these days so it is available. Currently it looks like you are making a poor attempt at discrediting these surgeons so as I said, post real evidence or leave.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on March 18, 2016, 10:42:22 AM
Bernhard;
Tal vez prefieres que respondo en  Espanol?

Surgery was always going to be a last resort for me. I fought Peyronies for four years with oral supplements and medications, including Pentoxifylline. I tried traction, VED, anything that looked like it might improve my condition. However my plaque was calcified and none of this worked.

I decided on surgery late last year and researched as much as I could. I decided, given my condition and severe curvature, that The Egydio Technique would give me the best chance of regaining a normal, functioning penis.

I remain glad that I made that decision.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Laveley on March 18, 2016, 03:30:58 PM
Quote from: Jonbinspain on March 18, 2016, 02:43:28 AM
As far as I'm aware because Egydio was the first to employ geometric principles to ensure straightening of the penis.

As far as I know these grafting surgeries are made since early 90's late 80's, if not before that. I dont doubt that there is a specific method called the "doctor x's technique" to perform it, but certainly he wasnt the first to perform these types of surgeries.

Quote from: skunkworks on March 17, 2016, 10:59:06 PM
Because Egydio is a specific method of incision and grafting surgery, one of several different methods.

QuoteThere are several different methods, including the H-type incision, Y-type incision, Egydio technique, or plaque excision, among others [23], [61] and [62].

http://www.sciencedirect.com/science/article/pii/S2090598X13000363 (http://www.sciencedirect.com/science/article/pii/S2090598X13000363)

Again this arab/iranian articles from second/third scales journals?

Hey man, no offence... but why the f people here keep posting this articles from dubious origins from countries like Iran that people dont even have internet access and ignore the ones from the most prestigious publications about urology?

Why dont you post a link to a publication in the "european urology", "Journal of urology", "journal of sexual medicine" or "Urology" ?

Heres a ranking of urology journals if you want some base of what is a trustworthy source: http://www.scimagojr.com/journalrank.php?area=2700&category=2748&country=all&year=2014&order=sjr&min=0&min_type=cd (http://www.scimagojr.com/journalrank.php?area=2700&category=2748&country=all&year=2014&order=sjr&min=0&min_type=cd)

It's like in my first post in this forum, when i said i was going for IVI people said here that IVI was and old treatment that gathers no satisfactory effects, and that had been recent studies that showed it had no difference between saline/verapamil..... when i asked for links, it was given a link to an iranian study of 2009 published in a third scale journal...however if you make a quick pubmed/google scholar search you can find much more recent studies from much more reputable and trustworthy origins that DO state IVI have positive effects in patients in the acute phase of the disease, like;

http://www.ncbi.nlm.nih.gov/pubmed/24124921 (http://www.ncbi.nlm.nih.gov/pubmed/24124921)
And here:
http://www.ncbi.nlm.nih.gov/pubmed/26142583 (http://www.ncbi.nlm.nih.gov/pubmed/26142583)

And there is many others...

Also, i read ALL the verapamil section of this forum, and all the testimonial of forum members that did the treatment, and although there is a considerably major number of cases that showed no improvement effect of the treatment, there is about a 30& to 40% of at least some degree of success rate among forum members. This can be checked even in the section poll of the forum board:

http://www.peyroniessociety.org/survey_ilv2.htm (http://www.peyroniessociety.org/survey_ilv2.htm)

That surprisingly fits the most modest success rates of the scientific studies (the trustworthy ones), even with the confirmation bias that an internet forum brings (which attracts mainly people who are suffering with the disease and didnt had satisfactory results with the most indicated treatments, like IVI, and than try to find help in the internet as a desperate measure)... it also fits my doc info who gave me a 40% to 50% chance of improve and also said me that if it was 6 months later he wasnt even talk about IVI with me, since the treatment is only recommended in the acute fase.

People here should be SCREAMING to members who are in the acute fase of the disease to try IVI treatment (with a good doc, of course) together with the subaltern treatments (pill, traction, and ved), instead of that, they say its an "scientific proven"(?) noneffective and "old treatment" that brings no results, based only in an old crappy study from VERY dubious origins...

Instead of that, people try to self electrocute its own dick without any type of professional supervision (https://www.peyroniesforum.net/index.php/topic,6770.0.html (https://www.peyroniesforum.net/index.php/topic,6770.0.html)) because they are afraid that a professional and experienced person who probably did the procedure a thousand times before sticks a nail in his dick ! That is nuts, by the way! I would rather put my dick into an anthill than to self electrocute it without any supervision.... but hey, thats just me!

So yeah... at first i liked this forum, but now i'm starting to raise some eyebrows here... specially with this german dude posts, which raised some pretty solid proves, if not for you, at least for me, also, btw jobinspain, that first article that you linked has the same exact authors that the german dude is dissing... so that at least PROVES that they DO HAVE some connection. I was going to make a post detailing my experience with the IVI treatment, was going to show the pictures of my own dick to PROVE the gains that i had, but now, like i said, starting to raise some eyebrows here.... i think i will just let it go.

Finally, on the grafting surgery matter.... well its NO SECRET that the grafting surgery can have some long term malus like bend recurrence and ED. Although it seems that these are rare cases, i think ANY doctor who performs this type of surgery should address its patients about it. Here some info about the matter from some trustworthy sources:

http://www.sciencedirect.com/science/article/pii/S0090429503002449 (http://www.sciencedirect.com/science/article/pii/S0090429503002449)
http://www.sciencedirect.com/science/article/pii/S0022534705675258 (http://www.sciencedirect.com/science/article/pii/S0022534705675258)
http://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2008.00941.x/abstract?userIsAuthenticated=false&deniedAccessCustomisedMessage= (http://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2008.00941.x/abstract?userIsAuthenticated=false&deniedAccessCustomisedMessage=)
http://www.ncbi.nlm.nih.gov/pubmed/21054805 (http://www.ncbi.nlm.nih.gov/pubmed/21054805) (this one is pretty pessimistic about the surgery, check the conclusions)
http://www.ncbi.nlm.nih.gov/pubmed/24866978 (http://www.ncbi.nlm.nih.gov/pubmed/24866978) (this one is an analisis of the geometric models of grafting surgery, its pretty pessimistic too about the techniques that are applied)

Just my two cents.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jack1909 on March 18, 2016, 04:19:44 PM
But that's clear..people who suffer from ED should not undergo grafting since the risk of worsening the ED is around the corner. What ere we talking about? That's obvious. This why surgery it's just for some, not for all. But Kuehhas is great surgeon, at least if we speak about congenital curvature. I've been following many patients that have had the surgery and they are good. I don't think anyone can say I am a cheater, they know in here how bad I am now and the fact Kuehhas did not solved my problems. But I acknowledge is a good surgeon since my eyes saw both terrible surgeons and good, As Kuehhas is.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: SunSeeker on March 18, 2016, 04:25:08 PM
Hi Laveley,

Dr Levine who actually first proposed Verapamil due to succesful animal studies actually does state that it's effect is questionable.  You can call incision and grafting any way you want.  Typically doctors had problem determining the exact size of the graft so as to minimize post op ED and curvature  recurrence. EGYDIO did his PhD on that and determined the geometric principles for incision,  graft sizing and placement. Not rocket science. Quite simple tbh. 

I was treated by Dr Kuehhas,  have a straight penis. At the end of the day whatever technique you do,  you need someone who knows what the do and take care of you post op.

If Verapamil helped you, that's great, but on a double blind placebo trial only Xiaflex has proved effective and prove a statistical significant effect.

Guidelines are straightforward, xiaflex, prlication for less than 60 degrees and incision and grafting from more severe. Nothing more and nothing less. Debatable aspects are kind of graft, surgeon skill, post of follow up. 




Title: Re: Long term outcomes of peyronie's disease surgery
Post by: SunSeeker on March 18, 2016, 04:34:31 PM
And as Jack said, people suffering from ED should get implant.

Unfortunately, Peyronies Disease is progressive,  I am aware of it and hope no more plaques will develop.  I am careful with sex,  but having a straight penis is much easier to be careful. At the end of the day I am enjoying good sex for first time in years.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on March 18, 2016, 04:49:06 PM
I have asked this Bernhard to provide any surveys, statistics, credible evidence that he has to show that The Egydio Technique and Drs Kuehhas and Egydio are 'false prophets'

He has so far failed to provide any!

We should all be aware that surgery to such a delicate part of the male anatomy carries inherent risks, whichever route you choose. But, when you have run out of options, have not much left to lose, those are the risks you have to take if you want your sex life back.

I repeat, at this stage, I remain thankful that I took that risk.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: SunSeeker on March 18, 2016, 05:00:20 PM
Jobsinspain,

The profiles are obviously UGRS. I really don't get it why we even bother with them.  I reported to admin.. Hones y I  just hope the forum integrity is not compromised by such comments and accusations.

Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on March 18, 2016, 05:20:02 PM
I agree Sunseeker.

They have been given ample opportunity, IMO, to provide something credible. They have failed to do so. All we have had is a series of ever increasingly strong insults and accusations.

I too have reported to admin. It's their decision.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Laveley on March 18, 2016, 05:26:18 PM
Quote from: SunSeeker on March 18, 2016, 04:25:08 PM

If Verapamil helped you, that's great, but on a double blind placebo trial only Xiaflex has proved effective and prove a statistical significant effect.


Link?
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: SunSeeker on March 18, 2016, 06:09:57 PM
On a mobile device and can't paste links for some reasons.  Google levine and xiaflex and first result is a recent interview from Dr Levine.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Laveley on March 18, 2016, 06:42:12 PM
Should be this one; http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4424536/ (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4424536/)

Interesting interview about xiaflex. However, theres no mention of a study with xiaflex/verapamil and only the first one proving statistical significant effect.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: K.Bouter on March 18, 2016, 09:01:54 PM
I think this  method was described here Lavely:

Treatment of Peyronie's disease by incomplete circumferential incision of the tunica albuginea and plaque with bovine pericardium graft. - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/11927316) and my guess is that this later became known as the Egydio method. Is the Nesbit method not named after the inventor too?

Published in Urology.

The accusations bother me a bit as I have a surgery with Dr. Franklin next week (another method, the STAGE method). I don't doubt the method as it's published in a good journal. Also I don't doubt the forum members. But before a surgery you want to hear good things. Anyway.. I ll read the accusations more carefully tomorrow and if I find anything that makes me doubt I guess the only thing I can do is ask the doctor himself.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: james1947 on March 18, 2016, 10:32:17 PM
K.Bouter

Proposing you to make a forum search for Dr. Kuehass

James
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: SunSeeker on March 19, 2016, 06:23:05 AM
Quote from: Laveley on March 18, 2016, 06:42:12 PM
Should be this one; http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4424536/ (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4424536/)

Interesting interview about xiaflex. However, theres no mention of a study with xiaflex/verapamil and only the first one proving statistical significant effect.

You are actually right. I had read it in the EAU guidelines:

The rationale for intralesional use of verapamil (a calcium channel antagonist) in patients with Peyronie's
disease is based on in-vitro research [63, 64]. A number of studies have reported that intralesional verapamil
injection may induce a significant reduction in penile curvature and plaque volume [65-69]. These findings
suggested that intralesional verapamil injections could be advocated for the treatment of non-calcified acute
phase or chronic plaques to stabilise disease progression or possibly reduce penile deformity, although
large scale, placebo-controlled trials have not yet been conducted [68]. Side-effects are uncommon (4%).
Minor side-effects include nausea, light-headedness, penile pain, and ecchymosis [68]. However, in the only
randomised, placebo-controlled study, no statistically significant differences on plaque size, penile curvature,
penile pain during erection or plaque 'softening' were reported [70]. Younger age and larger baseline penile
curvature were found to be predictive of favourable curvature outcomes in a case-series study [71].

In any case, Verapamil might be a good treatment option but a good study is required. Given that the cost of the medication is low I guess it is unlikely for such a study to be sponsored by a pharma company.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: skunkworks on March 19, 2016, 07:35:19 AM
Laverley there is nothing uncommon about a surgeon making a small change to a procedure then naming it after himself. It may be a stupid practice in your opinion but it is a very common one and your nitpicking about that particular point is completely useless with regards to this thread. Please let it go.

The quality of the journal makes zero difference when all you are talking about is the name of a variation of a common procedure.

With regards to the rest of your post, this thread is not about verapamil injections. If you wish to discuss them specifically, please make a thread. I personally would be interested in hearing about your experience with them, as positive results are few and far between. As is shown in the graph you posted from a survey on this very site, only 1 person out of 18 had significant positive results so people who have good results are interesting to hear from.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on March 19, 2016, 08:00:32 AM
The reason excision and grafting is being, or has been replaced by most knowledgable surgeons with incision and graft is specifically because of the increased incidence of ED after the excision technique.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Laveley on March 19, 2016, 11:51:29 AM
Quote from: skunkworks on March 19, 2016, 07:35:19 AM
Laverley there is nothing uncommon about a surgeon making a small change to a procedure then naming it after himself. It may be a stupid practice in your opinion but it is a very common one and your nitpicking about that particular point is completely useless with regards to this thread. Please let it go.

The quality of the journal makes zero difference when all you are talking about is the name of a variation of a common procedure.

I'm not nitpicking this point, read my posts again. All i did was ask why these were called egidyo and what was the difference from the traditional grafting surgery. As i answered to jonbinspain, i never doubt the existence of such technique.

And i totally disagree that the quality of the journal makes zero difference. One thing is a serious study published in a traditional and well reputed journal that have a lot of the mainstream medical community who reads it and, certainly, a rigorous standard to get a study published in it.

Another thing is a low standard journal which can published basically, well, any garbage that people pay to get published... dont get me wrong, i work in the academical area and i know very well how this things go, its just the reality.

You saying its no difference its the same that saying that a news in the new york times has the same amount confidence that a new that a friend of yours published in his school journal which states the exact opposite. The new york times has a way larger public with a potential way larger knowledge about that issue than the school paper, so the new york times obviously will have to take way more precaution to publish only true words in his journal than the school journal. Not saying the school journal isnt true about its content, but its undeniable that the NY times is just a much more trustworthy source.

My point in the verapamil example was just to illustrate how people on this forum seems to take more in consideration the studies from the dubious source and virtually just ignore the many others that come from more trustworthy sources and that states exactly the opposite, as in the verapamil case.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: skunkworks on March 19, 2016, 11:57:25 AM
Quote from: skunkworks on March 19, 2016, 07:35:19 AMThe quality of the journal makes zero difference when all you are talking about is the name of a variation of a common procedure.

Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Laveley on March 19, 2016, 01:50:41 PM
What part of:

Quote from: Laveley on March 19, 2016, 11:51:29 AM

I'm not nitpicking this point, read my posts again. All i did was ask why these were called egidyo and what was the difference from the traditional grafting surgery. As i answered to jonbinspain, i never doubt the existence of such technique.

You didnt understood mate?
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: james1947 on March 22, 2016, 06:27:11 AM
Laveley

You are filling this topic with a lot of nonsense. What is your aim?

James
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Laveley on March 22, 2016, 10:15:48 AM
What?" What no sense?"

I'm just expressing my opinions, and backed up all my arguments. Did you even read what i wrote?

Seriously, people here (when i say here, its not only on this topic) said that there were studies proving that verapamil didnt have no statistical effect over saline... but besides that only one study from Iran all other ones states exactly the opposite, and you say that I am filling this topic with nonsense?

Guy A - Says something with no back up at all.
Guy B - Says that what guy A said is wrong and back up it will scientific papers
Guy C (you) - Hey guy B, why are you talking nonsense?

But, you know what, just forget it. I'm out of here, dont you bother with mine "nonsense" anymore.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: james1947 on March 22, 2016, 10:57:11 AM
I have the strong feeling that Bernhard, Matthias and Laveley are all the same person or a group that decided, for some reason, to make Dr. Kuehass a bad reputation.
Promoting also Verapamil injections that a search on the forum will show clearly that Verapamil didn't helped no one (sorry maybe one if I remember correct) sound strange tome also.
But maybe I am wrong.
In any case we are off topic here.

James
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: FriskyDingo on April 05, 2016, 06:12:54 PM
Hey Sunseeker,

Im currently trying to setup an initial Skype consultation with Dr. Kuehhas. I cant see him in person because I live in the states. Ive been in contact with their Patient Co-ordinator, but before I finalize a time/date for the consultation, I would like to ask you some questions.

My plan is to systematically use a list of alternative treatments I have found to help my peyronie's in the past. This includes supplements, VED, and clinical therapies. I want to use these together (before I had done them at separate times, so maybe there is a synergistic effect) for a year before going through with surgery. I started these combined treatments March 1st of this year, so my surgery would be around March 1st of 2017.

Do you think that contacting Dr. Kuehhas for an initial consultation 11 months before I would consider surgery is too early? Should I wait until I am closer to that date, like 6 months before? How many months were in between your initial consultation and your surgery?
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on April 06, 2016, 03:14:13 AM
My opinion is you should wait until closer to the time that you are considering surgery.

You may well change your mind. And, of course, your current condition can change in the interim period.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: FriskyDingo on April 07, 2016, 01:27:52 AM
Hey Job,

Ill take your advice and wait. Can you tell me how long you waited from initial consultation to time of surgery?

Thanks
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on April 07, 2016, 03:45:21 AM
For me, it was about 3 months. However, I'd fought this for around 4 yrs with everything and anything. I had improved penile health considerably, but the curvature stubbornly resisted all attempts to improve it.

Each case is different. For me, I had calcified plaque and a severe curvature thst was making my penis sexually incapacitated.

By all means try all the other remedies first, and I hope they work out for you. Surgery is always regarded as the last option, but in my case I'd run out of options, and so taking the risk of surgery was a no brainer.

Having said this, Dr Kuehhas is an excellent surgeon and the risks are as  minimal as they can be in such precise surgery.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Freemason on April 25, 2016, 12:11:09 AM
This Bernard guy is an idiot and likely a fraud himself..Dr. Zacharakis who works at London Andrology as a consultant surgeon with Dr Kuehhues and Dr Egydio I Skyped with mentioned he was friends with Dr. Levine..I spoke with Dr. levine and he knows all of the above mentioned surgeons quite well and all are highly respected according to him...

Bernard..or whatever your name is I welcome you to call Dr. Levine and ask him yourself..as a matter of fact if you do PM me and I will conference in on the call with you...how's that sound. Then u can come back and apologize to everyone here and Jon for your highly inappropriate comments.

It's bad enough that we men have to deal with this devastating disease then to have someone come on hear and question whether or not we really have it.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: FriskyDingo on June 27, 2016, 05:39:49 PM
Sunseeker or Job,

Can you give us an update on how things are going as of now.

And remind us your date of surgery or how many months its been.

Thanks
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on June 28, 2016, 01:49:05 AM
For me, it's been 7 months now. My penis is still straight and mostly healed apart from a little residual soreness around the head, where the incision was made. Plus a bit of what looks like loose skin. But that disappears when erect anyway.

It works fine, and from having very little sensation ( quite possibly to do with the plaque) I now seem to be very sensitive. Again, maybe that's my imagination and it will settle down.

Size wise I have back almost all of what I had. Girth is certainly back and whilst length may be still down about .5 inch or so, I'm continuing with traction and will hopefully get that back.

All in all, I'm very happy. I have a sexually functioning penis that I didn't have before my surgery.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: FriskyDingo on June 28, 2016, 01:52:51 PM
Thank you Job,

Can you just remind me what specific surgery you had, STAGE, ect? Do you feel that if you could not do traction for a long period of time everyday that it would not be worth it, or that penile size would not return? And, imagine you work an extremely physical job... how long do you think you would have to take off of work to let the surgery heal?

I have corporal fibrosis and I am contemplating surgery, but I cannot put in hours of post-op traction every day. My work schedule just wouldnt allow it.

However, I am getting better with heat/cold pack therapy. Although the scarring may not go away, if full sexual function returns then I will probably forgo surgery for the scarring.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on June 28, 2016, 04:22:01 PM
Frisky;

First of all, corporal fibrosis is a completely different animal to Peyronies. I'm told that it's not impossible to treat, but every case is different.

I had Peyronies with pretty severe curvature. I did try just about every remedy suggested, plus some that weren't, but nothing would change the curvature. Hence the surgery decision.

I had the Egydio technique in London.

I would suggest you seek expert advice re the corporal fibrosis as to what can be done.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: FriskyDingo on June 28, 2016, 05:15:00 PM
Job,

Dr. Kuehhas offers a MOST technique that seems like it can help with corporal fibrosis. I know STAGE and Egydio are not meant for corporal fibrosis, but it appears MOST may be because it involves a prosthesis. On other forums I have read prosthesis being effective for corporal fibrosis.

https://www.youtube.com/watch?v=BlYPAt2KtgM 0 - Kuehhas talking about MOST, with an animation

However, I could not find the MOST tecnhique on the london urology website.

I would definitely seek expert advice concerning corporal fibrosis before I did anything, and Kuehhas is my probable choice. Im sure you know how tricky the problem of finding an 'expert' is, as it seems most 'expert's in the entire subject of peyronie's are worthless.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on June 29, 2016, 02:12:03 AM
I'll look. I did ask him about corporal fibrosis for another poster on the forum. He responded by saying it would depend. He would need to see and decide if it was treatable or not, depending on the severity etc,

Your video is treating the problem by inserting an implant. That is the usual way of dealing with corporal fibrosis.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Jonbinspain on June 29, 2016, 02:16:08 AM
Full quote removed by admin

I should add that Franklin Kuehhas is an excellent surgeon. You would be in very good hands should you decide to be treated by him.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: FriskyDingo on June 29, 2016, 04:52:09 PM
Thank you for everything Jon.

I am in the process of having an MRI interpreted by radiologists. I will have the results within a week. I will then send the interpretation and a copy of the MRI disc to Dr. Kuehhas once after I have contacted him.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: Gollam121 on March 28, 2017, 05:51:08 PM
[Full quote removed by Admin Les] Please read our forum rules regarding quoting others and also making repeated posts.

Yes I know about Herwig and Kuehhas, they are complete crooks and have certainly ruined my life with Scerothreapy.

I've written on other threads about this.
Title: Re: Long term outcomes of peyronie's disease surgery
Post by: james1947 on March 30, 2017, 08:37:51 PM
Gollam121

You are really on a mission to smear Dr. Kuehhas, don't you?
I see the Administrator put you under moderation.
I suppose if you will continue in this stile you will be banned by him.
You can post your opinion but smear is not allowed on this forum.

James