Questions about surgery (Incision and Grafting)

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Torontobased

After reading through the forums Levine seems to be a very good pick for incision and grafting, but I'm wanting to ensure I know all the risks and what to expect as there is a lot of conflicting information. Are there other surgeons in the US that would be better picks for narrowing issues? The doctors I have spoken to in Toronto don't have my confidence, and the quoted rates of Erectile Dysfunction within 5 years of the surgery seem higher than numbers quoted on studies on American doctors. Erectile Dysfunction seems to be the biggest risk and side effect of the surgery, but is this Erectile Dysfunction that doesn't respond to drugs like viagra and cialis? Most sources are vague on this. If I am already on cialis to help with erections, then is the risk for Erectile Dysfunction somewhat moot if it can be pharmacologically treated like I am already doing?

As well, it seems that a portion of people who go through with incision and grafting still see shortening and scarring despite it being a lengthening procedure. Can anyone give estimates as to how likely this is, and whether certain variables like graft material or technique can mitigate this? Does the fact that I have many smaller plaques along the sides likely increase risks as more grafts and incisions are needed, or decrease them as smaller grafts and incisions are needed? If i am getting the surgery to regain primarily girth, with length restoration being a plus but secondary priority, do I have a good prospect of this occurring? Or would the only way to really ensure I am functional and improved be to include the IPP during the same procedure? It's a scenario I am uncomfortable with but realizing but be required. As a young man, it worries me that if I go the implant route I would need to have approx. 3-4 surgeries if I live to my 70's to stay functional as they only last for 10-15 years.

To give some perspective, I'm 28 years old and I'm about 2 years into the active stage, it is not slowing down at all. Pentox, supplements, restorex and VED have proven ineffective or counterintuitive and there is no end in sight to the size I am losing. At the moment I am still technically functional, although to what degree I don't really know, and I'm losing hope that I will ever be a size I feel I can comfortably live with again. I realize I will never be the way I was, but I am hoping I can at least gain back something that will be bearable. I never thought I would be considering the surgery, but as time and this condition have gone on I am realizing it will likely be the only option. I am becoming more and more desperate, and the doctors I have spoken too have been far less then helpful. I need some sort of hope, and am finding it harder and harder to find.

I have narrowing and shortening, with my penis becoming progressively more misshaped as well. It goes basically along both sides of my penis top to bottom, made up of multiple plaques that themselves are small but all seem to add a bit of contraction. They create indentions, instability and prevent normal sensation and stretching. At the top of my penis there is a ring of scar tissue that contracts the whole area beneath the glans, this is the area of most deformity and although it is the one plaque that could possibly respond to Xiaflex no other area likely will, making that route not worth the time and cost most likely. I have a very small curve pointing upwards near the base of my penis but that does not impede or bother me, my main concern is shape and size as that is what will impair my function and state of mind.

TDix

I personally am impartial to my surgeon, dr Yafi at UCI, however I'm sure there are many others out there, probably closer to you, that can provide the same surgery.  I remember dr Yafi had a surgeon from Canada with him on one of my office visits.  I can inquire as to who they were
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Torontobased

Hi TDix,

Thanks for the response, if you could find out which surgeon was there that would be much appreciated. I am fortunate that I likely will have the resources to choose a preferred surgeon over a closer one if that is beneficial, but it would be a great help nonetheless as that isn't for certain and like all things in life could change at any moment. I've been to several of the Peyronies doctors in my region and at the moment none of them have my confidence in a procedure such as this, and the waiting lists to see new doctors makes it difficult to narrow down the ones worth seeing.

I've read a bit of your previous posts and apologize if I'm asking you to repeat details already stated there, but besides still missing a bit of length were there an other drawbacks from your surgery such as reduced sensation (permanent that is) or Erectile Dysfunction issues? Did it help restore some length and girth and you are just short of pre-peyronies, or was the half an inch you did not gain back yet compared to your pre-op length?

kusher

man let me save you money, energy and time!

I'm 24 and I don't have any curvature. I have peyronie's which is causing girth discrepancy between the right and left side. girth on the left side is way thinner than the right side. as a result the symptoms u mentioned ( They create indentions, instability and prevent normal sensation and stretching ) are present in my case which eventually leads to our main problem ( Erectile Dysfunction ).

I spoke with dr.joel gelman and other world class surgeons regarding my problem. they say there is no way to perform graft surgery without risking further damage.

a graft surgery will not restore ur erection if that is what ur thinking about... if u already have some Erectile Dysfunction issues then the fact of removing and damaged tissue and placing a new graft will likely cause more damage. this is not my opinion, this is what I have been told by some surgeons.

ur Erectile Dysfunction, narrowing and instability cannot be fixed with graft surgery without risking more damage. theoretically, it makes sense to replace the damaged tissues that are not stretching properly with new graft. but the process of doing so makes it hard for any surgeon to guarantee what will happen post operation given the associated complications.

so b4 u buy ur flight tickets and traveling accommodation for medical consultation, I tell u that ur issues could only be improved via pills such as Cialis and Viagra. if these do not work properly and u feel that ur still suffering from instability, then u should go to the implant root since sex with unstable penis is more prone to injuries and lack of sensation.

how is ur erection tdix? is it restored or ur still healing and recovering?

Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as age, date of onset, symptoms, treatments tried, etc

TDix

Thank you both for following my journey.  I will say Dr Gelman, and a lot of other surgeons are against grafting, but I had a lot of scar tissue, and Dr Yafi was confident he could help.  He works in the same hospital as Dr Gelman!  I am still healing, and while erections and sensation aren't back to where they were pre surgery, I can tell you I am getting there slowly.  Can take up to a year said Dr Yafi.  I am only 5 months post op.  The older surgeons tend to not want to do such invasive surgery.  Again, I am not against implants, but the finality of the procedure warranted me seeking anything else that would help prior to going that route. 
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

My half inch loss of length was due to peyronie's and not surgery.  I was worried I'd lose more which is why I was so aggressive in getting any treatment possible.  I still have some numbness in my glans, which both Dr Yafi and my physical therapist say is normal after surgery that involves moving around nerves.  My therapist said they grow back a millimeter at a time!  I am hopeful that when the year mark after surgery happened I will be back to normal.  I could do traction said Dr Yafi to try to get that 1/2 inch back, but I am happy just being straight and not having to worry about losing any more length.  It's also nice not to have the constant feeling of "jagged rocks" inside like I felt pre surgery.
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

I would also advocate a tachosil graft vs any other graft.  It absorbs as the tissue regenerates and heals, as opposed to being a permanent replacement for tissue
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Frank55

Toronto - I'd suggest being very careful about proceeding with grafting or plication (regardless of the physician) until you are sure you are out of the active phase of the disease. It sounds like you may still be in it. Surgery during the active phase is a terrible mistake. Take my word for that one.

I've met Dr. Levine (two appointments) and think he is probably a good surgeon. Several members have reported good results with him.

However, one reservation I have about him is the amount of "sell" in his approach to patients. He seemed somewhat eager to steer me toward the operating room. That makes me uncomfortable, and I've spoken with another forum member who had the same issue with Levine.

You may want to read the "Is Your Doctor Impartial?" thread in the implant forum.
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline Erectile Dysfunction possible but not taking drugs, shots or using VED
Now evaluating options for next step

2Oldfords

  I'm going to vote implant. I know your younger but you already have some Erectile Dysfunction. I know implant is a hard thing to wrap your head around. To me the excision/grafting is a gamble, a big gamble. The implant should be a lot less risk. It's no fun going thru all the grafting surgery and recovery only to find out your worse off than before and only option then is implant. I wish I had gone that route.
   No matter what option you choose use the best surgeon you can. Wishing you well....
   
Age - 65
Peyronies of unknown length of time
70 Deg curve 10-11 o'clock
first 2 uro's offer for xiaflex and referral
incision/grafting 12/18/18, Implant 9/11/20

Torontobased

Hi Frank,

I am definitely still in the active phase, I am going to try everything I can to improve my condition while still there but am preparing myself to the reality I likely face ahead. I was hoping my condition would stop progressing months ago, and if it did I likely would not be considering surgery. But because it's not slowing down, and even feels like it's speeding up, I'm now past the point I feel I can live with what I have. I need improvement even with where I am, where I will be terrifies me. I appreciate the tip on Levine, I want someone who is confident they can help me but is not just looking to cash in on an opportunity. If he is a bit of a salesman that does concern me, I'll definitely check out that part of the forum.

Hi Kusher,

I'm on that medication but it is not helping, or at least not in a way I can identify apart from helping me achieve erections and keeping blood flowing easier. That is disappointing to hear them say that, I know there are risks involved but I was hoping they were an acceptable minority and not the norm. It is tough to wrap my head around the idea of not only getting the surgery and implant, but having the implant be redone every decade or so and re-risk damage again. What route have you taken, and have you had any succes is restoring any of your former size/function?

Hi 2oldfords,

I read a bit of your experience and am sorry to hear that it did not yield the results you were hoping for, it seems this condition is a constant adjustment of disappointment and sliding expectations. Implant does seem like the safer route for what I am hoping, I suppose I was also hoping others would have experiences or data that would give more of a bright light at the end of the tunnel. All we can do is just what we can I suppose.

TDix

I am not against implants.  Trust me.  I just want to exhaust all options first as an implant is irreversible.  You go that road and there is no other option.  I realize that appeals to some as it fixes the issue once and for all, but I had to roll the dice per se and see if other methods would work prior to making that jump.  My grafting surgery, barring a major setback, seems successful so I am happy I made that choice.  Not that anyone else would have the same result, just as there are many negative implant stories as positive....it truly lands on what do you want to do to your body to fix the issue.  That is a truly personal decision and I hope any decision you make satisfies you
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Alibaba

I know people who went to Lavine for implants and repair work simultaneously and they were happy with his work.  Personally, I thought he was an ass when I saw him as did my wife.

Being you describe yourself as still in an active stage of disease progression, in my way of thinking, an implant is a way to stop the issue while you are not progressed to a point of limited options and the point of no return. I am not suggesting an implant is your only option, only that it should not be discounted. There are drawbacks to an implant. I miss getting hard simply from something getting me turned on. If something is arousing me mentally, I still have to stop and do the mechanical part of pumping it up to make my penis match my mood. On the other hand, I know it is going to get hard every time. I know it will be the same size every time. I know if I break it or wear it out, it is a fairly simple project of pull this one out, slide in another and once healed, I am ready to go again. Barring something catastrophic, the result will be the same every time year after year w/o shrinkage, w/o calcium deposits, w/o progressive curves. The only real risk is an implant after grafting does have a little higher risk of an aneurysm at the graft location.  Grafts are a know weak spot. They are a known wobble spot if you have had a graft repair and no implant. An implant will take care the wobble though. All things to consider. Research and ask questions. Cheers. 
Milam 1/13/16-LGX 21cm - BAD service & surgical outcome Hated infrapubic.
Kramer revision 3/1/17 Titan 22cm + 1.5 cm extenders

MarkDS

From my experience of incision and grafting surgery, I am in a worse place now that I was before.

I would certainly wait until after the active stage before deciding on any action.  I would also not consider surgery for cosmetic reasons.  Unless sexual intercourse is significantly affected I would not undergo surgery.

However, I am slightly bias following my own experience.
49 yrs old, Married
Peyronie's started 2016
Upward curve of 100 degrees  
Incision/grafting surgery in 6/2019.  Resulted in loss of length of around 1.5 inches, residual curve of over 40 degrees, some Erectile Dysfunction
12/2019 had failed skin anchoring procedure

csm101

Toronto I had a grafting type surgery and I'm local (Mississauga) What did you URO say first things first :)

2Oldfords

   Toronto, I understand your turmoil over what to do. Your personality and mind set make a huge difference in the way to look at your situation. At 28 yrs old I don't know if I would do the IPP. It is very final.....If you are ok with trusting doctors and surgery/recovery etc maybe go that route see what happens. I'm sure Tdix is not the only person that has had successful grafting surgery. I consider my grafting surgery successful too. I am straight and get hard when turned on just not quite hard enough past the graft. I honestly think it is getting better with time.
    Big difference between how to handle our issues when you are a young 28 and I'm 64. I would do the IPP now and bet it would serve me well as I age. A little effort on my part to restore my sex life would be welcome even if the pump up condition is permanent and no going back.
   You on the other hand may have other alternatives you can work thru. You have a very tough decision to make. At least you have come to the right place to become informed by real life people not just doctors.
    Whatever you decide is the right decision for you at the time, don't stress over it. Use the best surgeon you can and I wish you the best.
Age - 65
Peyronies of unknown length of time
70 Deg curve 10-11 o'clock
first 2 uro's offer for xiaflex and referral
incision/grafting 12/18/18, Implant 9/11/20