Good morning guys,
I'm writing this as I'd like to have some feedback about dr. Lue. I know he is pretty involved in the field and quite known but I want to be very careful before getting in touch with him. What's his specialization? Implants and peyronies related surgeries? I don't want to rush into this and if I could I would not do anything at all but I have too much pain. It's not a matter of being sexual active, it's primary about to have a big stitch removed someway or another..if living without any sexual activity it may sounds impossible, living in constant pain actually is..
Any suggestion, tip or something like that would be very welcomed..thank you in advance.
Jack1909,
Dr. Lue is an exceptional Dr. His specialization is Peyronies and it is hard to find a paper regarding Peyronies that doesn't have his name attached. He also specializes in ED, specifically ED and Peyronies.
Because of my ED and Peyronies I chose Dr. Lue after an exhaustive search and recommendations from my local uro. I had to have an implant, which he did, and which I am completely happy with. I literally had no pain. I think I took one pain pill. You can read about my experience with Dr. Lue under "Surgeries for Peyronies, The Beginning of My Journey".
I hope this helps you. Feel free to ask more questions or PM me.
Jimbruski
Dr. Lue is pretty good, he will do an ultrasound of your flaccid penis so observe the injury. He would not do a blood flow ultrasound for me in the erect state. I think his protocol is pretty simple, he will ask these questions:
1. Pain upon erection/intercourse?
2. Curve, how much, stop you from having sex?
3. Indents that preclude intercourse?
4. Erectile dysfunction, does cialis/viagra/injections work?
5. How long have you had this is it changing still or stable?
I honestly believe that you don't even need to see Lue to know what his response will be:
If pain you are still in acute phase, you need pentox maybe a lot, try it for 6 months then come back
If curve stops you from having sex you need pentox or xiaflex, up to you and insurance.
If indents are bad, maybe reconstructive surgery or VED and pentox for 6 months, up to you and insurance.
If ED and still early in acute stage you should wait and see and take cialis viagra, if stable or has been years then take cialis or viagra.. If they don't work then you need implant.
You have a lot of pain right? You should be taking pentox for at least 6 months. If that doesn't work I don't know what Lue will do about your chronic pain. Probably try to avoid you, as he has done with other problematic patients. If you're sold on an implant you should see a high volume implanter such as Kramer, Eid, or Perito. Or you could see Goldstein in San Diego for a thorough sexual medicine physical.
Jack1909. I saw Dr Lue on October 9, 2017, so just a few weeks ago.
Here is my impression of my experience:
As for my appointment with Dr. Lue, he made valid points regarding the scarring effect of grafting surgery, not to mention length loss. He was citing hundreds of surgeries he has performed in his career, and came to the following conclusions:
Grafting causes more scarring, and
Possibility of impotence
Reduced sensitivity, due to the degloving
Also:
Plication sutures may cause residual pain in certain patients
I have taken four rounds of xiaflex already, so I am skeptical of xiaflex.
However,
Dr. Lue is using Xiaflex and traction as a combined form of treatment, rather than going right for surgery.
If our grafting surgery was successful, then we would not be discussing the possibility of more grafting surgeries.
The doctor did not measure my curvature, rather he did an ultrasound to determine the area of scarring.
My conservative estimate of the curvature is around 35 degrees. Perhaps 30° when fully erect.
Because I have had Xiaflex previously, I am not certain that my insurance will cover it. My insurance company called me on Friday to confirm that I had put in a claim for further xiaflex treatments.
At this point, rather than opt for more surgery and more recuperation time, I would rather go back into treatment for the curvature under Dr Lue.
The Tutoplast will be reserved for the hourglassing.
If we can reduce the curve enough, the hourglassing may not be as prominent. Would be nice to avoid future procedures that involve undergoing the knife
he's a pioneering superstar surgeon with a great (albeit old) pair of experienced hands. however, most of his techniques have been modified and improved on by the newer crop of European surgeons.
for non-surgical stuff I don't think its necessary to see him as the treatment is pretty standardized already as daved2 mentioned.
That's an interesting comment, I would think xiaflex success is directly proportional to the number of injections a doc has done. Do you think it's pretty routine and easily mastered even if done relatively infrequently?
There are loads of urologists out there familiar with the xiaflex protocol and named dropped in various papers. I do think the nuances of the injection procedure is somewhat important but absolutely nowhere even near the nuances of skillful surgery. That's why I don't think there is a need to actively seek out Lue who is primary a surgeon (and a really good one at that).
Of course, if he is relatively accessible then why not.
Thanks takesix, I met with Dr Lue and it sounds like he's moving away from surgery when possible and recommending Xiaflex + traction. Btw, three weeks ago he said he had done 1,911 injections to date.
Is the Dr. able to give a rundown on the successfulness of his injection therapies? Almost 2000 of them, I would hope he could give some idea of how beneficial they have been for his patients.
He was quite optimistic about correcting my 45 degree curve, but it's worsened since then to almost 90, but I'll ask him at my first xiaflex appt in nov.
Tsanchez - sounds good. Please let us know what he says. Interesting that a Doctor as skilled and experienced as Lue is now advocating Xiaflex.
I think Kuaka has an excellent question - I'd add these as well:
1. Has Xiaflex been successful for him when the curvature is more than 40 degrees?
2. Does the likelihood of success decrease when the plaque is calcified?
When I first came down with this condition I went to a local urologist who works with Xiaflex. I have a 70 - 80 degree curve to the left. He estimated the best he could do with Xiaflex would be to remove about half of it. That was not an acceptable outcome.
On top of that, the injections were expensive as hell even after the insurance contribution. Close to the cost of having surgery if I went three rounds on the injections - depending on which surgeon/surgery type one chooses, of course.
Last, I'd also listen carefully to what he considers to be a Xiaflex "success". Is it a reduction or removal of your curvature? Another scenario I dreaded was a Urologist telling me they consider the procedure to be a "success" even when 30 degrees of curvature remain after the injections were completed. After all, it is an improvement in your condition, right? Easy and predictable for the Doctor to say. They are not the ones who have to live with it.
Good luck with the appointment.
Of course. Success is not a binary thing, unless the exact measure is "could not engage in intercourse before, now can without any issues". I mean, as much as we would like to have zero curve and zero hourglassing when "done", a small amount of either which no longer causes pain or prevents intercourse I would certainly consider "success". Your mileage may vary.
Frank55, I'll be sure to ask those questions. As my curve is significantly worse since my first exam w him I'll need to know as well. My insurance fully covers xiaflex so I'm very fortunate. What surgery are you considering? Tony
Tsanchez - I already had one surgery, but the curvature unfortunately returned. That was in May of 2016. I think the problem was the surgery was done too early - while the disease was still in what is called the "acute phase." At least that is what I think was the reason.
I'm waiting now to either have the surgery re-done (it was Franklin Kuehhas who did it - he has offered to do another surgery without the surgeon's fee) or consider the possibility of Xiaflex. It would be great not to have to go through another surgery procedure, but I'd only do it if I'm convinced all of the curvature could be removed.
If I did proceed with Xiaflex, I'd go to Lue as well. I think your chances of a positive result are better with him than with a local urologist. I live in Colorado and the "talent pool" of good urologists for this condition is slim in this state.
The concept of "phases" of this disease is a convenience, and not necessarily a "reality". Scar tissue is developed in certain conditions, and the nature and extent of this scar tissue is dependent on a few factors. There are metabolic factors...magnesium deficiency, other nutritional deficiencies, toxic substances (some not known to be toxic...what we as humans "know" about such is a never ending learning curve...for instance, Iron supplementation is actually toxic), perceived injury to the tissue (ultimately the instigator of scarring) and perhaps other unknown factors. As long as the cellular structures signal that they are damaged, scarring or additional scarring is possible. Surgery is by its very definition an additional injury, and if the other factors are not properly addressed additional scarring can be stimulated. This is were post surgery modeling and other factors come in. If I get to the point of surgery, I will first implement the full Root Cause Protocol over at gotmag.org, including their "for sale" consultation services and the full panel blood workup in order to optimize my nutritional health prior to surgery. I plan on pursuing the nutritional "full Monty" before then as well, but even the relative affordability of the full blood workup is out of reach at present. Perhaps fixing my nutritional issues and VED together will correct my issues without surgery.
Anyway, long story short, as long as your tissue is "injured", there exists the potential for new scarring. The key is to minimize or eliminate this scarring. Patience is also key, as time will often alleviate the tissue perception of injury...signaling that the "healing" process is completed. This is the crux of the "phases" of any such disease.
Surgeons tend to focus on surgical solutions. If you have only a hammer, all problems look like nails. Medical specialization has this as a bad effect on medical practice. Surgeons are "sawbones", looking for a "bone to saw". While specialists are good at the one end of the extreme, a good generalist is both hard to find and essential to overall health.
Did the full 50 degree curve return?
Agreed Kuaka. Patience is the key, and I regret not using it. Like some others, the initiation of this condition led to a semi-panic state of "get it off me." The image of the scarecrow trying to put out the fire on his sleeve in the Wizard of Oz comes to mind.
Tony the curvature completely returned, along with a fresh round of penile pain which is just now starting to subside (partially from the use of Cialis and Pentox.)
Which health plan are you on that completely covers Xiaflex? Must be quite the comprehensive plan. We are on the United Healthcare "Navigate" plan.
It's an employer paid (retiree) Health Net HMO.
Sorry if this is wrong topic for such question. Does anyone know if Dr. Lue (video)consultation is possible only through UCSF medical center or also in any other location (e. g. private office)? Thanks.
I don't think he offers video consultations, but I might be wrong! Have you ran a google search on the matter?
Google shows only UCSF, which I actually confirmed with one person from the forum, who had a visit recently. According to UCSF web site, video consultation is possible in theory (but not specifically with Dr. Lue), I'm going to make contact with them.