Thanks once again Hawk. In the same spirit of your very honest posts, I've posted my meeting notes with Dr. Levine below to provide further insight on my situation and to potentially help other men on the forum. I now have
Erectile Dysfunction, curvature and penile pain. Not a pleasant situation.
The meeting notes vary from first person/second person narrative. Please ignore that.
I had incision/grafting surgery from Franklin Kuehhas in June 2016 which has gone completely sideways (pun intended.) I now have
chronic penile pain (from nerve tethering from additional
plaque accumulation.)
As you can see, Dr. Levine says he has done over 3000 implants, but he did not place a timeline on that. Coincidentally, I have a follow up phone meeting with him next week. I'll be asking the questions you listed - thanks.
One asset Dr. Levine does bring to the table is his experience with both implants and peyronies grafting/excision procedures. That two-sided experience would be helpful in my case. Do you think Dr. Eid would be equally effective in that respect?
Based on your sensible input, I did schedule a teleconference with Dr. Eid next week ($285 for the meeting for those asking about price.) I think it only makes sense to get a second opinion when one is considering a serious medical procedure like this one.
Also not sure how far out Dr. Eid is booking, but I'm thinking to get this done sooner rather than later (very tired of living with this pain.) I'll be asking him about that on Thursday.
Notes from Dr. Levine AppointmentSeverely 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.