It looks like surgery is my only option left.

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Jonbinspain

I've had this damn disease for around 4-5 years now. I've tried anything and everything. All the oral meds, including Pentox. Traction, VED, topical applications. If you've read about it here, there's a good chance I've tried it. Nothing, but nothing will get rid of this curvature.

I have improved my own, and my penile health substantially and at the age of 66, I have no ED problems and can get a good erection. And sensitivity has been much improved. Problem is it's so damn bent that it's only usable in certain positions.

So, surgery it will have to be. I've narrowed it down to two options. Dr Kuehaas, who I saw last week, with his Egydio technique, or Dr Pallantzas at The German Centre of Urology. If anybody has any experience of these two, differences in technique, opinions etc, please let me have them.  

SunSeeker

Hi,

I was in the same dilemma. Went with Dr Kuehhas in International Andrology London. Best decision of my life.

I was contacted by a few more people who did the same. There was a relevant post, which I can't find now (I am really bad at using the functionalities of this forum).

Anyways, I didn't know pallatzas but there is so many patients in here that went to the London clinic with very positive experiences that I would not risk goin sowmhwr else.

If you need more info contact me.

Pfract

I would second that sunseeker. Sort of the more people go there, the more feedback we might have encouraging others which will also benefit from excellent care. Who knows if this forum will start a new trend?  

Jonbinspain


Jonbinspain

Well, the time is almost upon me. My appointment for surgery with Dr Kuehhas is Tuesday 24th Nov.

I'm a little nervous about this, but excited about hopefully having my 'old' penis back.

I think and hope that I've made the right choice of Doctor and of technique. I'll report back after my surgery.  

J-A

Good luck Jonbinspain


You are in good hands, please update us with your progress as you go.

I had my 4 month post op last sunday, very pleased all is going nicely.

Nerves are to be expected.


J-A
Happy to chat to anyone who would like more details of my journey so far, on here or on the phone

Jonbinspain

Cheers J-A

Tell me, did they use general anesthetic on you for your surgery?  It's been suggested to me, and I wondered why they thought it necessary?  

LWillisjr

I don't think a local lasts long enough. If they are suggesting it I would take it.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Jonbinspain

Here, in Spain, they very rarely use general anesthetic for surgery below the waist. My wife had a hysterectomy under epidural, as did my friend for a hip replacement.  

kuaka

local anesthesia is safer, as you are conscious and can communicate with the surgeon during the procedure.  Sometimes that feedback is important.

General anesthesia is a combination of paralytic, pain killer and knock out.  If you are paralyzed and not sufficiently pain killed you can experience significant pain while "under" and be unable to communicate such.  It is a balancing act.  

Local anesthesia avoids such issues.

J-A



Tell me, did they use general anesthetic on you for your surgery?  It's been suggested to me, and I wondered why they thought it necessary?
[/quote]

Oh yes most definately.

If you are having the grafting proceedure you WANT a GA.

I have a strong stomach but not sure how I would be with the de gloving bit let alone anything else.

Have a sleep wake up all fixed is my advice
Happy to chat to anyone who would like more details of my journey so far, on here or on the phone

kuaka

To each his own.  I've had my testicles worked on three times, all under local.  I went under for a right knee ligament reconstruction, but it was extremely important that I not move one little bit for that delicate operation.  Come to think of it, the same may be true of having my penis cut on.  :)

thepaul

Good god, the only way to go is general. Anyway, that's how they'll do it in London. You've made the right decision doing to Kuehhas. You'll be just fine and back to form soon.

You can follow my whole experience there by reading my posts in this thread: My surgery experience at the London Andrology Clinic - Peyronies Society Forums

Jonbinspain

Early update;

Surgery done today - it took 2hrs 20mins according to Dr Kuehhas

Apparently, using the geometric principles involved with the Egydio technique, I had an almost 90 degree dorsal curve. It didn't look quite that bad to me, but that's what they measured it at with an enforced erection.

The surgery was completed using a double Y incision on the tunica paraurethrally, to isolate the neurovascular bundle and a semi circular incision for the graft.

At the moment, I have virtually no pain.

After the graft was done, another erection was induced. Result, my penis  is is now straight again.

Now just for the recovery phase. Sorry if all this is a tad garbled, I'm still a bit woozy.

I'll post regular updates, but so far, I'm more than delighted.  

J-A

Pleased it went well for you.

I too had a severe curve like you described, the surgery photos are on here.

Follow the instructions to the letter and all will be well.

As I have said I am 4 months post op and back to work so to speak. I still use the traction device, get a phallosan forte when you can, it is the most comfortable.

You will get the most comprehensive follow up you have ever experienced.

If I can be of any help PM me I am happy to share my journey with you, either via pm or on the phone

JA
Happy to chat to anyone who would like more details of my journey so far, on here or on the phone

Jonbinspain

Thanks J-A

I've already sent Franklin a couple of questions via whatsapp. I have to send him photos of the head for the next 4 days to check blood supply.  

Stabler

Glad to hear surgery went well Jonbinspain. Please keep us updated on recovery.

Stabler67
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

buscador

Jonbinspain, I hope you can get the best possible improvement!
I have a question:
Do you know what is your graft made of?
thanks

Jonbinspain

Hola Buscador;

The graft is made from Bovine pericard, which I believe comes from the tissue surrounding a cow's heart. It has been widely used in human heart surgery for some time now.

After two weeks I must begin stretching this new graft. Firstly with my hands, and then 4 weeks after surgery I have to use  traction device for 1-3 hours a day for several months.  

J-A

Happy to chat to anyone who would like more details of my journey so far, on here or on the phone

Jonbinspain

Hi J-A;

Good, thanks man. Still in daily contact with Franklin. Bandages came off yesterday ( 3 days ahead of schedule) but I've healed quicker than expected.

Still pretty sore, especially around the head. But partial erections are starting to come back - which is a very good sign!  

Manual stretching and Cialis starts on Wednesday morning. Still a long way to go, but so far I'm very pleased, and the level of care and attention from Franklin is something I've never experienced before. He's even called me 3-4 times to give advice.  

Pfract

Que bueno! :-D Hope all goes well with your recovery and i can't even imagine the piece of mind such an aftercare should provide. Keep us posted!

Jonbinspain

Gracias pfract;

De verdad, Dr Kuehhas has given me a level of aftercare and reassurance that is rare indeed. In my experience, anyway.  

Frank55

Jon,

They did use a general anesthetic, right? And the procedure was outpatient (you went home that night?)

Just curious. Based on your other posts, I think you did a smart job looking into the "softer" treatment options prior to taking this step, but it was time.

Hope your recovery continues to proceed smoothly. I'll bet the results are a huge relief after your long bout with this disease.

Best,
Frank
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

Jonbinspain

Frank;

Many thanks. Yes, like most of us I wanted to avoid surgery, if possible, and so tried everything else first. In my case, none of it worked in terms of eliminating, or even reducing the degree of curvature.

Yes, a general anesthetic was administered. The surgeon wants you completely immobile. It's very precise surgery and if you were to move even slightly whilst the surgery was taking place the consequences could be dire!  And yes, I was allowed to go back to my hotel that evening.

I'm still in the recovery stage and have many weeks of traction to go through, but at this stage everything seems to have gone to plan and I'm delighted! I'll post updates as I go along.

Frank55

Jon,

Couple of other questions. Is the post-surgery traction solely to restore some/all of the length? Or is that also for straightening? How long will you have to use traction? It sounds like you found a very good doctor, by the way.

Also, to what extent did your health insurance cover this procedure? What was your out of pocket expense?

I'm asking because I may eventually be looking at surgery as well. I'm probably going to give Xiaflex a try (Dr. office is now "pinging" my insurance to see if they'll approve that), but that is obviously not a sure thing. The posted reviews for Xiaflex treatment range from rave to useless (no result.) So the results could go either way.

The good news is my ultrasound did not show calcification. As you pointed out in a previous post, that may be the key variable as to the "softer" treatment options actually working/not working.

Thanks,
Frank
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

gringoviajero

I neither have calcification, nor even hard plaque.  I had thought this to be an advantage.  20 days post first injection with no obvious improvement, I'm now doubtful.  It seems with some of these hard-plaque guys, the Xiaflex softened or even broke the plaque enough to show improvement.  My soft plaque covers nearly the entire side of my penis.  I'm becoming pesimistic that the drug can cover enough ground, i.e. penetrate enough tissue, to make a difference.

Jonbinspain

Frank;

The traction is to stretch the grafted tissue. My penis is already straight, but the new tissue needs stretching to get back my old size. Traction, usually, is daily for around 3 months. Dr Kuehhas informed me that eventually my own tunica will grow back over the grafted tissue.

There is such a thing as private health insurance here in Spain, and in the Uk. Although, for most general treatment we have an excellent public healthcare system, which is free apart from prescription costs. Because this was highly specialised surgery - Dr Kuehhas is one of only two or three surgeons in the world that I know of who is skilled in this technique - I had to pay from my own pocket. Not cheap, but if you want the best, you pay for it. I may be wrong, but the only surgeon I know of who can perform the technique in the U.S. May be Dr Levine in California. I may be mistaken on this, however.

I investigated Xiaflex with the Doctor as he also treats with it too. He informed me right from the start that there was no guarantee that Xialflex would work at all, and that if it did the max improvement I could expect was 30%. His view of Pentox is that it may be of help in the active stage, but that once you are in the chronic phase, that it will not be of much use. I can't argue with that assessment as I tried it myself for 2 years with no improvement in my curvature.  

Frank55

Thanks Jon. By the way, I think Dr. Levine is based in Chicago. Unless there is another Dr. Levine. Dr. Laurence Levine is the one often quoted on this forum regarding treatments (particularly traction.) But I did notice a Dr. Sari Levine in CA on a Google search result. Is that who you mean?

Xiaflex does seem to be a hit or miss proposition. Gringoviajero, I think you are correct that is the placement/length of the plaque in your case that is making the Xiaflex treatment less effective. It may be that Xiaflex is more effectual when the plaque is more concentrated in one spot. Just a guess. Like I said, reported Xiaflex results are all over the place.
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

Jonbinspain

Frank;

I think,you're probably right. It's Dr Levine in Chicago. If I'm mistaken and it's not him, I'm sure he would know of any surgeons in the US performing this type of surgery.  

Jonbinspain

Well, 4 weeks today since my surgery. I'm healing nicely although under  the head is still somewhat sore from where the incision was made.

I start today with the Phallosan Forte, which I have to say isn't the easiest thing to set up,or to get used to using. It's also uncomfortable on my sore penis head. Anyway, I'll try to persevere with it. I'm also allowed to use my VED with caution. It's all about stretching the new, grafted tissue - but carefully, and bit by bit.

I am now getting around two thirds erections, and they're perfectly straight!  Obviously, the new tissue is going to require lots more stretching before I will be back to full erection size. But, I seem to be getting there.  

kuaka

Thanks for the update.  It looks like you are on your way.  :)

J-A

Jonbinspain use the largest bell on the Phallosan Forte. You ll get used to it, im 5 months post op using it at least 1 hr a day and Im almost back to full length
Happy to chat to anyone who would like more details of my journey so far, on here or on the phone

Jonbinspain

Hi J-A

Thanks man. I already figured that one out. I tried the medium and it almost killed me!  However, I still feel that the device has major flaws and is unnecessarily complicated to use. Plus the vacuum in the bell doesn't hold very well, I have to top it up every 20-30 mins. I'm actually wondering whether my VED wouldn't do a better job!  

J-A

Persevere with it. the way i do it is to pull the sleeve back over the bell, retract foreskin and push my penis right to the top of the bell. then give the plunger a couple of pumps to get the suction going then roll down the sleeve.

Your VED will not give you the correct stretch and also you cannot use it for as long. I found the VED quite uncomfortable when I tried it. The reason for stretching is to encourage your cells growing over the graft to give you back your length.

In the beginning the bell hurt the glands but you do get used to it, ive stopped using the funny little cap thing, plus in the early days remember that the nerves are growing back  
Happy to chat to anyone who would like more details of my journey so far, on here or on the phone

Jonbinspain

I'm more getting the hang of it now. I'm quite big, especially girth wise and as the head is stil a bit swollen I sometimes have trouble fitting into the large bell. I have to be completely flaccid or it just won't go. Even then. It's a tight fit.

The other problems seems to be holding the mini vacuum. I have to top up every 20-30 mins. And the hook mechanism that fits on the bell quite often comes away. Then I have to take it off, try to relocate that piece and start all over again.

I think the VED is better in some aye as it stretched the penis in all directions, no just length ways. But yes, you obviously can't use it for as long. At the moment I'm just doing 10 mins a day. A very cautious ten minutes, at that!  

Frank55

Jon,

Pleased to hear of your continued progress. I think your doctor was right to bypass Xiaflex in your case. It seems there is mounting evidence that once calcification has taken place, that treatment is less effectual. Some of the urologist sites are mentioning that now, like this one:

Xiaflex - Patient Selection - Peyronie's Disease

Of course, there is no guarantee Xiaflex will work even when calcification has not taken place. That is the "thought of concern" when one considers that treatment, as I am. That is one huge benefit of taking the surgical step - provided the procedure is done properly, there is a very high probability of success. Almost all the other approaches seem to be hit or miss.

Couple of other questions. What type of procedure did you have done? I've seen several different names/labels for penile surgery. Also, did your Doctor expect the procedure to have any permanent length impact? Or does he expect you to get it all back eventually (assuming you do the traction as requested?)

Let me know - thanks. Unfortunately, I don't have as much length to spare as it sounds like you do. Worries me a bit about the surgical option.
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

Jonbinspain

Frank;
Avoid plication, or Nesbitt procedure. IMO, it's surgery from the dark ages of Peyronies surgery.

The technique I underwent was called 'Stage' surgery. It was developed by Dr's Egydio & Kuehhas. There should be virtually no loss of length or size as the surgery works on geometric principles to straighten the penis by surgery to the affected area, not by shortening the unaffected area to achieve the same aim.  

Justiciero

Hello thank Jon first time and clarify details in his surgery.

EP am 40 years old and over 'm thinking of going down the road of the implant. Here in Spain there are few surgeons with experience in this field and to travel to the US is expensive and tired.

Recommend this center and doctor for the implant procedure ? also mention that my level of English is very low. Thank you for the excellent work and posted the best recoveries . Cheers

Frank55

Jon,

Thanks for the info. To where did you travel to have your surgery done? And how long did you stay there after the procedure was completed?

The thought of travel just after such an event is not appealing. But I'd imagine you accounted for that.

Frank
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

LWillisjr

Frank55,
A lot depends on the surgeon and the specific procedure being used. Mine was outpatient surgery with Dr. Levine. Surgery in the morning, and home later that afternoon. But I personally know some of Levine's other patients who flew in for the surgery the night before, had the surgery the following morning, spent the night in recovery, and then flew home the following day.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Jonbinspain

Frank 55;

As with L Willis, my surgery was around 10.30 am. I was back in my hotel by 6 pm.

Justiciero;

My surgery was at The London Andrology Centre. My surgeon was Dr Franklin Kuehhas. I believe he also handles implant surgery, if there is no other option.

The doctor can speak Spanish, and his patient coordinator, Giulio Conte is Italian. I'm sure you can communicate with him also.  

Frank55

Thanks both Jon and LWillis. Interesting info as I consider my options.

LWillis, does Dr. Levine perform the type of surgery (Stage) that Jon is talking about? I looked at his web site and I'm not sure.

Jon, did you stick around London (to have access to the Doctor just in case) for a period after the procedure? Or did you go home the next day?

Thanks,
Frank
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

Jonbinspain

Frank;
Yes, I had to go back for a follow up appointment the next day. After that, the doctor and I were, and still are, in contact through whatsapp. I can ask him anything I'm concerned about, send pictures, etc. He always responds within hours. I have another follow up appointment at the clinic shortly.

I have to say that his aftercare service is second to none, IMO.  

LWillisjr

I had excision and grafting which is different. I am not sure if in other scenarios that he would use the Stage procedure.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Frank55

LWillis and Jon,

Thanks again for taking the time to answer all of these questions. I hope you'll be patient with me, as each answer seems to lead to another question.

Jon, did you have to get a referral of any sort to get the procedure done? What I mean is, the urologist web sites often say "surgery is only done for serious cases", or something along those lines. I think I'm still in the acute phase, and I don't know if they prefer to wait until the subsequent phase (what is it called - chronic?) prior to surgery.

So I'm wondering if it was only your call to proceed, or did you need another Doctor to say "we've tried the other procedures and they didn't work." I'm guessing it was your call, but wondering about that.

By the way, I'd be in the same boat regarding the procedure cost if it was done in the UK. I have US health insurance through United Healthcare, but seriously doubt they would contribute. Even if I had it done in the US I'd still have a substantial co-pay. But I may bite the bullet anyway. I'm lucky to have the means to do it.

Sorry to keep asking so many questions, but the more I learn about Xiaflex the more skeptical I become. I'm not interested in a partial solution. And that may very well be all that approach would deliver. I can envision getting six months into the time/expense/hassle associated with Xiaflex and having little to show for it in terms of improvement.

LWillis, I'm still wondering if Levine does the Stage procedure at all. It sounds like Egydio and Kuehhas may be in a very small group of physicians performing it. If it has less length impact, that is an important benefit in my case. I don't have a lot to spare.
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

Jonbinspain

Frank;

In my case I had calcified plaque and a curvature not far from 90 degrees, at its worst point. I tried everything. If you've read about it here, and it has any credibility, I probably tried it.

As I put earlier, I improved my own and my penile health substantially. However, the curvature remained unimproved.

I had read about Dr Kuehhas on the site and investigated him thoroughly. I couldn't find anybody with anything negative to say about him. I initially booked an exploratory appointment where an artificial erection was induced, ultrascan done etc. Again, as I posted earlier, his conclusion was that in my case Xiaflex would only give me a max 30% improvement in my curvature, if it worked at all ( there is always a risk that Xiaflex will not work in certain cases. And I had calcification)  He explained the surgical procedure and assured me that it had a more than 90% chance of being successful.

In my case, I elected for the surgery as I felt that I had very little left to lose. I'm delighted to say that it appears to have been successful. Your case may be entirely different.  

J-A

I may be wrong but doesn t STAGE surgery shorten the long side ? The operation I had (I thought) was the excision and grafting proceedure known as the Edgyio technique. I though these were different. Be careful with acronyms!!!  
Happy to chat to anyone who would like more details of my journey so far, on here or on the phone

Frank55

Thanks Jon. Pleased to hear of your continued progress.

Regarding the post operative service, I think the old saying of you get what you pay for applies. The urologists I've seen here in the States are generally rushed and usually seem to be in a hurry to conclude an appointment. I can't imagine their post operative service would be much better. Even getting a message through to their nurses is a chore.
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

Jonbinspain

J-A

Yes, I think you're right. My mistake!  

The Stage technique, although very similar to the Egydio technique, is for congenital curvature. The two techniques are very similar, although as congenital curvature doesn't require any graft, it can involve a very minimal shortening.