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Author Topic: When Incision and Grafting Surgery goes wrong....  (Read 598 times)

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Frank55

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When Incision and Grafting Surgery goes wrong....
« on: September 14, 2018, 03:40:11 PM »

Gents,

I'm posting this as an example of what can potentially go "off" with incision/grafting surgery. This is just one example - there are many cases on this forum of this procedure going right as well. I had that procedure done in June 2016 by Franklin Kuehhas in London in an effort to get this disease behind me and get on with my life. That was not to be.

I don't necessarily think Franklin's surgery itself was bad - only the timing of it. I first observed symptoms in September of 2015. The procedure was done in June of 2016. I was straight for roughly three months after it was performed. Then the curvature started to return and, well, the rest is history.

Notes from a recent appointment with Dr. Levine in Chicago are below. Pretty much sums up the current situation. From my standpoint, the moral of the story is "never perform Peyronies surgery within 12 months of the onset of symptoms, regardless of the pain level or observed curvature changing." If I could do it over again, I wouldn't wait only 12 months. I'd wait 18.

Let me know any questions. Looks like I'll be going down the implant route. But that doesn't seem as bad after reading Hawk's and Tony's posts.

Notes on Dr. Levine Appointment

Severely abnormal tissue at that narrow junction – particularly on left side. Feels abnormal. It is either graft alone and/or the graft plus residual peyronies scar tissue.

Within that there is probably tethering of the nerves that run along the surface of the penis which had to be lifted up to lay the graft in. They are laid back down, but if there is a contraction of tissue (which normally happens after surgery) but they have happened excessively with your response to the surgery and all of that is tethered in.

We see this with other types of surgery – for example, after a hernia repair some people have persistent pain. No fault of the doctor – there were no nerves that were directly injured but as the tissue heals it pulls that adjacent tissue into the area of scarring. That pulls nerves in and you get a chronic pain syndrome.

We see that in a variety of places. One way of addressing it would be stretching – stretch therapy. A second option would be intralesional verapamil. One of the things we’ve found with verapamil for men with pre-surgery peyronies pain is that with 2 – 4 injections they had resolution of their pain.

Will that happen here? I don’t know. You have post-operative pain. I think the Pentox you are taking is worthless at this point.

If you want to address the pain, deformity and get “back in the saddle” again and be sexually active there is only one approach that I’d recommend. That would be the placement of a penile prosthesis with associated straightening maneuvers, which in your case would be plaque partial excision (or incision) which likely will release some of the scarring there and likely release the tethering nerves in that area. Then possibly some patch grafting over that area so the prosthesis would not herniate into that area.

Prosthesis and implant are the same thing. Similar to replacing a knee or hip.

Would other surgical options work? Dr. Levine says he could go in there and potentially excise that scar tissue, lay a graft in and hope that this process does not reoccur. We would hope that this process may release the tethering nature of the scar tissue and maybe get rid of the pain.

However, he thinks there is a good chance that procedure will not improve my erections and will probably make them worse. Prosthesis would address both the straightening and the pain.

You have a different type of pain - this is not initial acute inflammatory peyronies pain you have now. This is a post operative pain syndrome from tethering of nerves. I work with chronic testicular pain and I see this a lot, like with patients who have had a vasectomy. This also happens with other scrotal operations. Perineural fibrosis around the nerve scar tissue. This pulls the tissue in and activates abnormal nerve firing.

By stretching, we may release that to some degree. If that were not to work, we would go in hope to disrupt and release the tethering nature of that scarring. You may end up with some sensory loss in that area as well. If your goal is just pain, then we go with verapamil and traction therapy.

If your goal is a straight and sexually functional penis, the only approach I see there is a surgical approach with a prosthesis because you have a severe degree of curvature. More importantly, you have severe indentation from the nasty scar you have there. That indentation may also be a contracted graft.

Is there a penile blood flow issue? Yes in the sense that your arterial inflow is fine but you have venous outflow. That is why we are not getting a good erection.

Your scar tissue is way too rigid for traction to be effective for straightening.

If we do this procedure in the hospital OR there is a high cost. For people who have different payment plans, we do it in the surgery center. Device is $10,000 roughly. Somewhere the better part of $20,000 if done in the surgery center.

What does an implant look like when it is flaccid? Appearance is very natural. Intercourse feels natural as well. Feels natural like wearing glasses. You’ll only really feel the pump – transferring fluid from the reservoir to the cylinders.

Pump is in the scrotal sack – plenty of room, like a third testicle. Cylinder is sized to fit the entire length of the penis. Dr. has done over 3000 of these. Does not activate any other medical conditions. Can be replaced if necessary. Does not cause any medical concerns if unused.

Dr. Levine recommends an implant/prosthesis if I’d like to have a sexually functional penis again. He could risk re-doing the grafting, but there is a risk of making your already bad erectile dysfunction even worse. At least a 50% chance of that.

What about straightening effect of a second grafting operation? I can’t guarantee what we would end up with structurally. Most of the scar tissue would be carved out.  Given that you’ve already had surgery there, there is a lot of tethering of the nerves over the surface of that. That would probably result in regional sensitivity issues. Like an absence of sensation.

A second grafting procedure also carries risks of Erectile Dysfunction, possibly recurring curvature or incomplete straightening, sensory issues and further shortening of the penis. I think the chance of your having good erections after this procedure would be low.
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Single and 57 yrs. old - first peyronies symptoms Fall 2015
Failed incision/grafting in June 2016 - curvature returned
Borderline Erectile Dysfunction possible but not taking drugs, shots or using VED
Now evaluating options for next step

diehardpatriot

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Re: When Incision and Grafting Surgery goes wrong....
« Reply #1 on: September 19, 2018, 03:15:42 PM »

Hey man. Honestly, it’s your call. What are the consequences to getting some grafting and if you end up with Erectile Dysfunction then getting an implant in another surgery?

I don’t get why you can’t do grafting while there is still pain. The scar tissue is causing the pain so how is it that when you remove it the curve still comes back? Besides the graft retracting? There’s also steps to prevent retraction like doing traction and Cialis therapy during recovery of surgery. Why do doctors like to wait until the pain is gone?
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17 year old who had stable peyronies. Now battling a new acute injury. Don’t know wtf my symptoms r

Frank55

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Re: When Incision and Grafting Surgery goes wrong....
« Reply #2 on: September 20, 2018, 09:58:02 AM »

Inflammatory pain is generally regarded by doctors as a sign that the disease is still in the acute phase. Surgery during that phase will temporarily straighten your erection (as it did for me), but then the curvature will return with the accumulation of additional scar tissue. The body seems to regard the surgical site as an additional injury, over and above the initial injury that caused the disease in the first place. That is what I've been dealing with for the past 24 months.

You don't want to risk having anything surgical performed when you may still be in the acute phase, at least not anything that involves a graft. You may end up in the same situation I'm in now, which is not good.
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Single and 57 yrs. old - first peyronies symptoms Fall 2015
Failed incision/grafting in June 2016 - curvature returned
Borderline Erectile Dysfunction possible but not taking drugs, shots or using VED
Now evaluating options for next step

TonySa

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Re: When Incision and Grafting Surgery goes wrong....
« Reply #3 on: September 20, 2018, 12:07:57 PM »

Frank55, wow-you’ve been through a lot.  I agree, after hearing about your experience guys should really think about waiting 12-18 months after start of peyronies before considering surgery (unless prosthesis only).  Thanks for sharing this w everyone.
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

diehardpatriot

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Re: When Incision and Grafting Surgery goes wrong....
« Reply #4 on: September 20, 2018, 02:31:09 PM »

Frank55: Thank you, the explanation you gave makes perfect sense. Especially for incision and grafting. The edgydio surgery uses a Y incision to cut open the plaque, then they Place a graft to cover the open space. Incising an already inflamed area of scar tissue would be counter intuitive, it leads to more inflammation, and consequently more scarring. 
That leaves me to wonder if these same principles imply to EXCISION and grafting surgery, where the whole area of scar tissue is completely excised. What do you guys think?
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17 year old who had stable peyronies. Now battling a new acute injury. Don’t know wtf my symptoms r

diehardpatriot

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Re: When Incision and Grafting Surgery goes wrong....
« Reply #5 on: September 20, 2018, 02:51:59 PM »

Also. What is considered “inflammatory pain” ? Pain can come from a few things in my opinion from Peyronie’s. Plaque pushing on the nerves, simply the tension the plaque creates when It doesn’t allow the penis to fully expand, and of course pain from inflammation response of the body
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17 year old who had stable peyronies. Now battling a new acute injury. Don’t know wtf my symptoms r

Frank55

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Re: When Incision and Grafting Surgery goes wrong....
« Reply #6 on: September 20, 2018, 04:32:51 PM »

Ask your Doctor the questions from your previous two posts. That is a level of detail your urologist should answer.
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Single and 57 yrs. old - first peyronies symptoms Fall 2015
Failed incision/grafting in June 2016 - curvature returned
Borderline Erectile Dysfunction possible but not taking drugs, shots or using VED
Now evaluating options for next step

2Oldfords

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Re: When Incision and Grafting Surgery goes wrong....
« Reply #7 on: December 07, 2018, 12:05:08 PM »

   Frank55, I am having the incision grafting procedure done by Dr. Knoll soon. When he asked me when it started and I could not tell him because to me it just happened so in reality it may be 6-9 months. It didn't seem to bother him if it was in acute stage or chronic. After reading your history I'm a little worried maybe I haven't waited long enough. Do you think you are an isolated case?
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Age - 63
I don't know when it started as I was always curved and never had any pain.
I just noticed from a certain point on the shaft it was bent.
My emotions have run the gauntlet. Currently waiting for BCBS to approve graft surgery.

Frank55

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Re: When Incision and Grafting Surgery goes wrong....
« Reply #8 on: December 08, 2018, 08:43:29 AM »

Hello 2OldFords - Welcome to the forum. Do you remember when you first observed symptoms (curvature and/or pain)? The rule of thumb I've heard is that generally 12 months should pass between the time that symptoms are first seen and surgery is performed. But that period can be shorter/longer from person to person.

Dr. Levine told me there are exceptions. He said the most important item to observe is the erection curvature. Is it changing? If it is not, then surgery may be considered earlier. But I'd be careful about that. You do not want to go through what I have, believe me.

I've been taking monthly erection photos for the last 9 months and using them to observe if the curvature has changed (it has actually decreased in the past 3 months - not sure what to make of that.) I'm going to share those photos at some upcoming Doctor appointments which coincidentally include Dr. Knoll. I received a strong referral from another urologist about his skill with the grafting procedure.

But please remember the limitations of this forum. Valuable as it is, we are not physicians. I'd suggest stating your concern very specifically to Dr. Knoll and see what he says. And I'd do that RIGHT NOW to give yourself enough time to postpone the procedure if necessary.

One question I intend to ask at both of my upcoming appointments - "given the facts you have, do you think this is the ideal time to proceed with surgery, or would there be any value in waiting? I'm concerned about the possibility of the curvature (plaque) returning."

Dr. Knoll may have observed something that makes him think it is OK to proceed at this time. Again. I've heard he is very good. Please keep us posted on what you find out.
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Single and 57 yrs. old - first peyronies symptoms Fall 2015
Failed incision/grafting in June 2016 - curvature returned
Borderline Erectile Dysfunction possible but not taking drugs, shots or using VED
Now evaluating options for next step

2Oldfords

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Re: When Incision and Grafting Surgery goes wrong....
« Reply #9 on: December 08, 2018, 03:46:40 PM »

    Thank you Frank55 for your reply. I am apprehensive of the time of onset to surgery. I had the same advice/criteria before surgery on my hand for dupytrens. I didn't want to wait to remove the effect it was having on my hand/fingers so I went thru with it and have had no problems since. Hard to say which body part is more important my right hand or penis. I took a chance on my hand with a very good hand surgeon. I guess I will do the same with Dr. knoll. I honestly don't know if I could survive emotionally if I declined the opportunity to correct this now.
    I do appreciate your concern and advice. Your experience with this corrective surgery gone awry is beyond horrible and duly noted. You must be a very strong person to be able to handle what has happened to you. I wish you the best going forward.
 
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Age - 63
I don't know when it started as I was always curved and never had any pain.
I just noticed from a certain point on the shaft it was bent.
My emotions have run the gauntlet. Currently waiting for BCBS to approve graft surgery.
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