The following is a one-post compilation of highlights from hundreds of posts in the Urologists And Other Doctors thread. Individual posts have been copied into this page and no grammar or wording has been changed from the original post. Entire posts have been copied where possible to retain the context of the original post. The posts are entered in chronological order from the top of the page to the bottom, so the oldest posts will be read first and the most recent posts will be read last. This IS a work in progress and will be added to and edited so check back often. Highlights of Alternative Treatment For Peyronies Disease Thread Youngpain21 « Reply #34 on: March 21, 2006, 03:17:18 PM » Quote
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I had an appointment last week with DR. Laurence Levine in Chicago, IL. He told me he wanted to be conservative in my treatment after I had a good penile duplex ultrasound showing good blood flow. He placed me on Pentox twice a day, and Cialis once every two days to increase nightly erections which he said would help with keeping the plaque down. He definitely knows what he is talking about when it comes to Peyronies Disease, so I hope this helps for me.
Michael « Reply #40 on: April 17, 2006, 05:19:11 PM » Quote
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Sorry-- been too busy to get back on line to report! We drove to SF Friday, waited probably 20-30 min to get into a room. Dr Brandt, who introduced himself as Dr Lue's Fellow, did the initial screen and first sonogram. He felt the thickness of the plaque was not too severe, we chatted a bit about the kinds of treatments men are trying out there. He said he was aware of maybe 30 different things that men are taking or doing... and that to his knowledge, none of them provide any improvement except minute amounts in isolated instances. We got into a better room, and Dr Lue took over. He wanted a bit different angle on the sonogram, so re-did it, and then went over what he feels are the options most of us have. First, in the case of early treatment, is an oral med with various side effects (sorry, it is nothing new, but I can't pull it out of my brain this second) which he said was not likely to help me as I feel I have stabilized after about 14 months. I told him I came in fully prepared to discuss surgery, as I am practically incapable of having intercourse... and what I can accomplish is more than awkward and generally uncomfortable. The only glitch was that they could not locate my pictures (I said That's odd-- I just saw them on the Internet the day before!) (Side note: both men have wonderful senses of humor, and as soon as we traded shots we got very relaxed... I'm sure he uses a lot of the same lines on most patients, so I won't reveal them, but they go a long way in removing the anxiety of the situation) The three surgical options are plication as the easiest and least invasive (I can straighten any penis, easily, in about 20 minutes... but the question is whether the erections you can get now, if straightened, will be good enough to give you a satisfactory shot at intercourse.") Second is grafting-- much more complex, with greater danger of impotence due to nerve damage-- depending on how erect you can get beforehand, and with how much aid it takes (chemical) you can run up to a 50% or even higher chance of becoming completely impotent. This is microscopic surgery, to delicately separate the nerves from the plaque; excise the plaque, and rebuild with the graft. He says it can take him two hours just to deal with the nerves... but he does several of these every week, and is confident in his ability. The third is the penile implant, and while he did not recommend nor am I interested in jumping straight out there, because my wife is an engineer, he just had to show it to us! He does at least two of those a week-- says they are a marvel of engineering, and has successfully even implanted one in an 87 yr old man! We wanted to know if I started with plication and was not happy (my fear is that the waist and hinge effect I have would remain the same, and it would be conducive to further injury.) Answer is yes, if you don't mind two separate surgeries. Likewise, if door #2 does not do it (say, the surgery is physically successful, but you become impotent) you can go for the implant. He says all of the sensations remain with an implant; ejaculation is possible (I already know i can ejaculate with a 25% erection, so that's not hard to believe.) What he could not say was whether have so much waisting that the simple plication would be sufficient (since the pictures were still MIA, it was getting late, and he had not done an injection to witness my erection himself.) So, he asked me to email the pictures ( I did this weekend) and he got back to me this morning with two options: (I have severe narrowing at the base of my penis)
Graft the curved portion and the narrow portion--4 hour operation with
30-50% chance of impotence
Straighten the curved portion with sutures and graft the narrow parts.-2
hour operation with a 10-20 % chance of impotence.
Option 2 would make me look pretty much as I used to, but shorter (at this point, I would be happy with straight and no pain).
Option 1 gives me back some of what I lost... at higher risk.
I'll be thinking about this; my wife already says it's my decision, and she's with me no matter what...
That's it for now... I'll let you know what I decide.
Later postscript: Forgot to tell you-- I asked if the real incidence of Peyronies Disease was really only 1%, and he said he believes it's at least 3-5%-- that with the advent of Ed meds, men who would have just given up before now have decided that this is something they should report and see if they can conquer. I said something about him specializing in Peyronies Disease-- he said he doesn't: but everyone comes to him for it anyway! Last he said "Guess how many new Peyronies Disease patients I have seen today? (my appt was at 2:30; did not leave until 4 pm) he thought for a minute, counted up-- "Nine!" This on Good Friday, and I saw only one other patient waiting for another of the many doctors in the Uro practice... Guys: We are not the Few... We are Legion!Hawk « Reply #47 on: April 24, 2006, 08:01:25 AM »
Cannon,
Martin Gelbard is the Peyronie's Disease Specialist in Burbank, CA. .
If you go to our website's links page,
http://www.peyroniessociety.org/links.htm he is the first doctor on our list of doctors specializing in Peyronies Disease. Follow that link to his site.
PS: Welcome to the PDS Cannon.
Zigwyth « Reply #83 on: May 19, 2006, 09:19:11 AM » Quote
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All Right. I'm In. I just went to my Urologist for another appt. and explained the emotional trauma, frustration, etc. with this disease. He at least admitted to not having much knowledge about the number of victims or the disease. I chose to stick with this Doc after the first 2, because 1) he gave me as much time to talk without blowing me off. 2) He said he was willing to try anything within reason to help and 3) He wanted to LEARN more about this. I told him about this forum and he will be visiting as a guest to learn as much as he can. He wrote a long letter as I sat in his office to my Insurance company in order to have a Medical quality VED covered 100%. He is a young Doctor who seems to care, wants to help and gain knowledge. If we can all come up with a gameplan, and join forces on how to bring this out, now is the time.Whether we contact American Urological assoc. , Talk shows, etc. Hawk, maybe create a new posting on brainstorming on how we can attack this and bring it out to the Public! I'm In.!!!Zig The Twig ComeBackid « Reply #86 on: June 05, 2006, 12:23:39 AM » Quote
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Hopeful,
I never saw Dr. Carrol I only talked to him on the phone. He was very knowledgable about the penis and how it works. I mean he does get a commission for all the sales he makes. Was his assitant Israel? I wanted a PHYSION machine and no one around here has ever really heard of it, even the ED/Peyronies Disease specialist I saw at Hershey Medical Center. Hes interested to hear if it works for me at all.
He sent me the PHYSION machine and the VED Soma Correct, I got absolutely no instructions with either of them on how to use from Dr. Carrol. The PHYSION cups are just about impossible to use and Tim directed me towards IOMED pads that are much easier to use. I got no instructions on how to use the VED either, I just sought advice on that from Old Man and the Peyronies Disease protocol, that I have saved on my computer.
I talked with Mike from August Systems regarding the VED's, the doctors get that at a price cheaper than 595, more like 400 I think he said. I'm guessing its the same with PHYSION. Dr. Carrol is an internal medicine doctor not a urologist, he did say Topical Verapamil is crap and won't work, because it won't get absorbed deep into the target tissue.
My overal impression of Dr. Carrol was hes very knowledgable but busy like most doctors, and lets face it this is a capitalist society, everyone wants to make money and sell units of VED's or PHYSION machines, the more you sell, the more money you make. However, Dr. Carrol does seem interested into the newest peyronies treatments and doing research in these fields, he told me Dr. Levine is a good friend of his, and it sounds like he might get involved with some trials of new drugs or treatments for Peyronies Disease with him, or maybe by himself down in Florida. I think he is honestly going to bat for us sufferes and is willing to try new treatments. He also seems more willing to try alternative treatments as well.
As for the jury being out on IONO I think it is to. Dr. Levine did that study that showed saline to have the same effectiveness of verapamil, I really question if verapamil is really the right drug to break down collagen. I think the theory behind the electrical current stimulating the healing process or stopping progression of the disease could have a lot of merit to it. Time should tell us. Other than the Dr. Levine study, and the one PHYSION did, there aren't any other studies I believe? I really see these VED and stretching devices becoming popular soon as well, but even Dr. Carrol says you need to soften the plaque before you can stretch it out, Old Man has stated to me otherwise he knows people who've seen results just using the VED without other things. Some peoples plaques could be harder than others and may explain this.
ComeBackid
Wantitstr8 Reply #88 on: June 06, 2006, 01:38:06 PM » Quote
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Hopeful-
Not recommending you spend $165 on a phone consult, but Levine is my Uro. I waited about 6-8 weeks for my 1st appointment. He is very good, very thorough, and very busy. He takes plenty of time with you once you get in, but there is a waiting list for Peyronies patients. He is one of the top Peyronies Disease physicians in the country and really knows his stuff. He has run a series of trials in the past and was one of the primary developers of the VI protocol. He is also investigating several other treatments and is beginning a clinical trial on a traction device this month. Not sure if he is still looking for patients for the trial, but that might be a way to see him sooner. As far as the money mill is concerned, I'm not going to knock these Dr.'s for wanting to make a living. It's tough out there for everybody. If you want to see one of the top Peyronies Disease specialists in the country, you have to be prepared to wait, and you have to be prepared to pay.
Just as a side note, on my last visit he mentioned that there may be a "significant" new treatment by the end of the year. Not sure if he was talking about the AA4500 but I plan on getting more information this week when I see him...I'll post it then.Zigwyth « Reply #109 on: September 06, 2006, 08:32:11 AM » Quote
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Guys. I had recently submitted a form to try and get reimbursement for my worthless Transdermal Verapamil(Peyronies Disease LABS) . Cigna sent a letter denying my claim stating the prescription was not compounded by a reputable pharmacy or something along those lines. Any suggestions about if I can appeal this based on the fact My Uro wrote a prescription for it? I'm willing to go up the ladder unless someone has run into this issue without success. Don't want to waste my time, however $700 is alot of money.
Ziggy
MisterB « Reply #117 on: November 09, 2006, 06:50:42 PM » Quote
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I just returned from seeing Dr.Levine. It was a relief to finally see a doctor who understands our plight and has a genuine desire to help. I was thoroughly examined and given an ultrasound in both the flaccid and erect state. He prescibed a regimen of Pentox/Cialis/Arginine for three months and then I return for an evaluation.
ComeBackid,
Sorry to hear about your experience with Mulhull. I hate to post about my good trip after reading about yours. If you can pull it off, get yourself to Chicago. Tim468 « Reply #128 on: November 12, 2006, 03:47:30 PM » Quote
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Quote from: Hawk on November 11, 2006, 10:56:30 AM
This same doctor told me that the VED does absolutely NOTHING to oxygenate the penis because it draws ONLY oxygen depleted venous blood into the penis.
I think that is pure bunk, and not supported by either common sense of a basic understanding of anatomy. I would have loved to have been a patient hearing that - since it makes no sense.
Reminds me of a doc I sent a patient to for a second opinion. She was a severe asthmatic who did not get better with steroids. She got side effects, but not the treatment effect of better lung function. I tried every different formulation, one at a time, over months to see if one worked whereas others did not (overa year later a different specialist determined that she did a little bit better on one brand of inhaled steroid).
Anyway, I sent her to this guy for a second opinion, and he said he wanted to try her on steroids. They said "But Dr. Tim has done that and it didn't work - why do you want to do it?" He replied "I'm not Dr. Tim"
good grief... the mother asked him politely how he figured that his name on the presciption form might make her daughters' lung respond better to steroids when he wrote it, and he glowered and asked them if they really wanted his help. They said "nope" and left!
He called me to tell me that they were "uncooperative"...
Tim
Hopeful « Reply #144 on: November 25, 2006, 07:48:55 AM » Quote
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Jake- I am one full year too- I wouldl like tyo know the Docs tat you saw in South Florida- Is it Dr, Hakim at Cleveland?- If so - were you happy with him- I would lliek to know your age as well- I am 58 have Peyronies Disease for 13 months now- 35% bend at tip- plus ED- and heart arrythmia- Totally frustrated as the docs do not want to -prescribe drugs for ED etc..0- What is INTRON Injections?
Hopeful
I have been to seven urologists from coast to coast to coast, six of whom promote themselves as Peyronies Disease specialists, even at major University research hospitals. And I have had no two recommend the same thing (except that MAYBE Colchicine and vitamin E MIGHT help, but there is no proof), other than the prognosis is not good and a return to original size and function will not happen. Only one MD (the urologist with the fewest published credentials) urged swift and aggressive treatment (Verapamil AND Intron A injections PLUS Colchicine PLUS vacuum pumping) during the early stages when I just had a painful bend. All the "experts" urged me to wait six months, then another six months. Hawk « Reply #152 on: November 27, 2006, 07:24:13 PM » Quote
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Hopeful,
I thank you for a more reasonable response that turns down the heat on your flame thrower. You still question the validity of the price for the new book on Peyronies Disease. You also make other statements I believe to be false. In response to your concerns about book prices I refer you to this quote link:
Quote from: Hawk on November 14, 2006, 06:53:29 PM
Clicking on that keeps me from repeating what has been said more than once in defense of this book price. While I defend the book price, and support doctors making a very good income, I do find this artificial barrier of distinction between profit made by doctors and profit made by everyone else to be troubling. While I think many like you, error on the side of begrudging doctors a good income in relationship to their investment of time and money, others error on the opposite side of this issue. They treat the medical communities promotion of goods and services for a profit, to be somehow different than it is when anyone else of our species does it. Let me give two examples on opposite ends of this issue. I find both to be inappropriate and unfair.
First, doctors sell a service and/or knowledge. It is a product that costs them dearly to obtain. Them and their families sacrifice. They deserve a profit on that product. The policy of the PDS is that We do not disparage doctors, or electricians, or vitamin makers from making a profit. The profit motive is what brought us the cures and treatments we have for diseases. We allow all that make a profit, to disclose their position, present their case for what they offer, and answer fair questions. It is hypocritical to isolate doctors and act like they alone do not deserve a good living for a job well done. In truth, most of us would not want to pay the cost of obtaining and keeping a medical practice if we had the chance. We single doctors out and act like they are the only ones undeserving of pay for their significant efforts.
On the other hand, there is the camp that takes the equally inappropriate view by saying, if 5 people use a gizmo, or a product and got great results, they sould be restricted from telling others about it because it may encourage others to purchase the product from someone that will earn a profit. It sounds like they would allow no one to do anything on the site that involves a profit. Then they support a policy that says, We will however allow only doctors to sell what they earn a profit from, because somehow that is sacred. It gets even more difficult to reconcile because often the non-doctor recommending a gizmo is a patient/user with no financial interest, but the doctor selling a service or information, is often earning a direct personal profit for what they are recommending. It is most troubling when, the doctor making a personal profit on a product or service, actually sits as board members of the organization that forbids patients and others from saying anything or sharing any information that could encourage someone to buy widgets and other products. It has the effect of saying; We will show disdain for anyone claiming to have input on something that may help. We will forbid such talk because a profit makes the entire process too suspect. We will however allow and promote things that put a personal profit in our pocket, because we deem ourselves to be the only ones that are elevated above such suspicion when a profit is involved. We are an exception to the rule we imposed on everyone else.
Good doctors should be praised for giving good service for a profit, and should be praised for publishing material that brings critical information, theories, treatments, and trials to the easy access of other doctors. These doctors should show the same respect for others, and live by the same rules they allow themselves. That is why we defend doctors for making a good living. It is also why we allow members to mention things which they have reason to associate with success.
A fair policy is: All can make a case for what they have reason to believe works and they shouod expect to defend the rational thought behind what they recommend. Whether profit is or is not involved is not the issue. The issue is sound evidence and whether everyone plays by the same rules. The issue is whether we on the PDS board live by what we impose on others. That is why we would welcome a VED rep, or a doctor selling a book, or a pharmacy selling medication. It is just a fair, honorable, and consistent policy. This should not be a class struggle of elitists verses the common patient. It should not be a divided effort where our personal disappointments over Peyronies Disease are vented against others, just because they are doctors that are compensated for effort and excellence.
Doctors are people, that must struggle to get there, and work hard after they arrive. They face liability issues and many other expenses. They deserve to be compensated for what they invest in time, money, and responsibility.
Hawk « Reply #156 on: November 27, 2006, 11:34:17 PM » Quote
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Will, welcome to the PDS forum. Thanks for contributing to the effort with your post.
Good Peyronies Disease doctors are few and far between. I know of 2 doctors somewhat near you. I included two of our addresses complete with web-page. I cannot personally vouch for either except to say that I enclosed a quote from one of our more knowledgeable offices with the PDS.
Dr. Culley Carson (919) 966-2571
Univ of NC, Chapel Hill
Chapel Hill, NC 27599
http://viper.med.unc.edu/surgery/detail.asp?ID=37
GERALD H. JORDAN, MD (757) 457-5125
special interest is reconstructive GU surgery.
Devine-Tidewater Urology, Norfolk, VA
http://www.urologyofva.com/devine-tidewater/physicians.asp#JORDAN
Quote from: Larry H on January 24, 2006, 02:48:47 PM
Dr. Schlossberg and Dr. Gerald Jordan at Devine Tidewater Urology in Norfolk are renowned surgeons in both male and female genital reconstruction. It is stated that more reconstructive surgery for Peyronie's disease is performed by Devine Tidewater than at any other institution in the country. They have performed surgery for peyronie's thousands of times, and are two of the very best.Liam « Reply #159 on: November 28, 2006, 07:12:31 AM » Quote
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Carry a list of questions and symptoms to the urologist. Trust your doctor. If you go in with doubt, you will leave with doubt. Get rid of pre-conceived self diagnoses. Let the doc earn his pay.
Go in and say you want to find out what is wrong and not do I have Peyronies Disease. You can save any questions like that to the end.
Myrddin « Reply #161 on: November 28, 2006, 08:34:43 AM » Quote
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Quote from: Hawk on November 27, 2006, 11:34:17 PM
Dr. Culley Carson (919) 966-2571
Univ of NC, Chapel Hill
Chapel Hill, NC 27599
http://viper.med.unc.edu/surgery/detail.asp?ID=37
This is my Doc. He prescribed Pentox for me. He seems to have pretty current knowledge, and is on a medical board with Dr. Lue. Definitely worth a visit.Larry H « Reply #166 on: November 28, 2006, 05:27:29 PM » Quote
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ComeBackid:
In the years I've been active on the BTC, Yahoo, APDA, and PDS forums I've read posts from a number of people who have been operated on for Peyronies Disease by each of the surgeons in question and have yet to read a negative report on their surgery. Now I'm sure there are some, as no doctor can perform that many operations and have 100% success. However, the only dissatisfied patients that reported on Dr. Jordan were two men that he refused to operate on because he said they didn't have Peyronies Disease. So much for all doctors being money grabbers.
You ask where are these people who have had successful surgery. I submit to you that many are leading happy normal lives with no further desire to be a part of a Peyronies Disease support forum. Your statement about ED and nerve loss is simply not accurate, it can happen but it's the exception, not the rule.
Of course surgery is a last resort, but isn't that the case with all surgery? With Peyronies Disease one should only consider surgery when intercourse becomes unsatisfactory or impossible. Also, a person with Peyronies Disease is not a candidate for surgery if he also has ED. I think you are trying to paint the surgery picture with too broad a brush, it is a viabale option for men who fit the proper profile, and are in the hands of qualified surgeons. Let me say this, I've put a lot of time and effort into Peyronies Disease research and I think I know the subject pretty well. If I were not 63 years old and married for 40 years to a great lady who at this point could care less about sex, well, I would have been in Jordan's office five years ago. That is a fact!
Hopeful:
The lack of a proper understanding of the physical and mental aspects of Peyronie's Disease by a large percentage of urologists is astounding. Far too many urologists look at Peyronies Disease as an irritant and don't understand the devastating nature of the disease. WE all know that, don't we? So here we have a doctor in Laurence Levine who has taken the initiative to do a research survey on the depth of Peyronies Disease knowledge within the medical community, found it to be woefully lacking, and has written a much needed medical reference book for doctors. I seriously doubt that he will come anywhere near recouping full compensation for the time and money spent on these endeavors. As such I find your continued rants and doctor bashing against doctors who are trying finally to address Peyronies Disease issues despicable. You think $165.00 for a phone consultation is unreasonable, well have you talked with a lawyer recently? How about a CPA? You cite 196,000 preventable deaths in hospitals, but you fail to mention that they came from the review of 37 million patient files.
I'm sorry Hopeful, I'm don't want to come down this hard, but you seem to have an agenda against doctors and you won't let this alone. We as Peyronies Disease patients need the help and support of the medical community, and particularly from the likes of Dr. Levine. Your doctor bashing is counter-productive to my best interest and the best interest of all Peyronies Disease patients.
Larry
Tim468 « Reply #175 on: December 01, 2006, 05:24:04 PM » Quote
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Here is how I figure it - when I am really good and ready for an implant, hopefully they will be working so well that I can get a new career in the adult film industry. OTOH, the medical therapy for Peyronies Disease may also be better by then...
Tim
ps - seriously, I would try to look hard at other options before going with an implant. Personally, I would consider it if:
A) I had erectile dysfunction that did not respond to viagra
B) MY Peyronies Disease was stable and not getting worse, but not getting better with medical therapy either.
C) MY Peyronies Disease was not amenable to an "easy" fix (ie the Nesbit procedure), such as complicated twists, a probale need for grafting and excision.
And then I would wait a good long time to be sure.
TimLiam « Reply #177 on: December 08, 2006, 12:04:15 AM » Quote
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Check our website for a listing of several qualified doctors all of whom have performed surgery. There are also qualified doctors not on the list.
The chances are, if he is famous in the US, he is famous world wide.
http://www.peyroniessociety.org/links.htm
