My urologist called this "unethical" - no joke...

[lwillisjr]

George999,
That is a great point. Many who have had bad experiences with injections may in large part be due to the skill (or lack thereof) in the technique. Same could be said for those who have had bad surgical experiences. We have always pointed out that once one considers surgery an option, to only week out those who do it often and have a successful reputation.

I recall now that when I first went to Levine, and consented to to VI's, that I asked if he recommended anyone closer to where I live to save the 6 hour round trip drive to Chicago. He did sort of recommended one other doctor, but at the same time pointed out that Levine uses his own special injection technique. After deciding I only wanted "the best", I opted for the 6 hour round trip drive for Dr. Levine to do the injections.

Les

[George999]

I would add that with prescription meds the results will be similar no matter who the prescribing doc is.  Not so with injections.  The success of injections of any kind is somewhat to largely dependent on the skill of the practitioner.  And with IV skill matters a lot.  I could certainly see where an unskilled practitioner could really mess somebody up with IV, while at the same time a skilled practitioner could do the same patient a lot of good.  I see this as an additional factor beyond how the given individual responds to IV treatment.  - George

[lwillisjr]

We need to keep everything balance. It is true that several on the forum have had injections in the past and they caused problems. Then there are people like me who had the injections. And although my curve did not respond to the injections, they did not cause and further trauma or issue. Other than the uncomfortableness of the injections themselves they didn't cause any problems for me.

And according to Dr. Levines statistics, 60% of his patients do respond favorably to the injections.

So as with anything there are some risks. Some have had bad experiences with the injections while clearly others don't have a problem or even see improvement. The real statistic that we don't know is the risk factor......... i.e. How many have had injections in total vs. how many had problems with them?

[BrooksBro]

How weird.  At my annual physical exam, I told my internal medicine doc (PCP) about developing peyronies since my last visit.  He said some of his patients have had favorable experience with verapamil injections, so even he was well informed.  He referred me to a hand specialist for my duputren's, but I have not gone, since it is not a problem for me.  My new urologist reserves the verapamil protocol for the most severe curvatures (over 30 degrees?) or after PAV & VED/FS have proven ineffective. 

[MikeSmith]

I understand about the frustration with the bedside manner. You deserve someone who will listen to you and work with you. I do agree about injections and scarring, though; I'd stay away from them.

Thanks - yeah, you'd think w/ such a sensitive issue - doctors would be more understanding. It's not like I got poison ivy.  I can't figure out why they're like this.   Thanks again for everyone's take on the injections.  I really did not know there were risks to those.

[slowandsteady]

I understand about the frustration with the bedside manner. You deserve someone who will listen to you and work with you. I do agree about injections and scarring, though; I'd stay away from them.

[jackp]

Mike

Some doctors have the bed side manor of a "box of rocks". They are good doctors and probably are busy. I have encountered several that way over the years.

Now my primary care physician (PCP) and local urologist will sit and talk as long as needed. The other doctor in my PCP office is a good doctor but has the personality of a "box of rocks."

When I went to Vanderbilt for my implant I was amazed at the time that was taken with me. Todd Doran PA-C and Dr. Milam took time to talk and explain things in a way I could understand it. Even let me have an implant in my hands to see how it works.

As to vitamin e. Just because it did not work for some don't tell me it did not work for me, it did as well as for others.

Jackp

[lwillisjr]

I don't know what Dr. Muhall will or won't do. But he has had very favorable comments among some on this forum.

Dr. John P. Mulhall
Director, Male Sexual and Reproductive Medicine
Urology Section
Memorial Sloan Kettering
353 East 68th Street
New York, NY 10021
Tel: (646) 422-4359

[Old Man]

j:


I too had great success with vitamin E therapy along with the VED therapy. I was on E for several months before the VED was introduced into my therapy schedule. It is a good blood thinner which affords more of the blood to flow into the corpora during the VED exercises.

Vitamin E in 400 I.U.s are still in my daily intake of meds - especially since having by pass surgery in 2004. My cardiologist says that amount of E will do wonders for keeping the old ticker in shape and able to pump the necessary amount of flow, etc.

Old Man

[zeppo]

I tried Potaba , but after about 2 weeks usage, started experiencing gastric disturbances.  The brand I tried was  PABA  550mg   made by Solgar.  Maybe there is another brand that is easier on the gastrointestinal system?

[j]

Vitamin E has been tried endlessly for Peyronie's, and for Dupuytren's, for many years and as far as I know it's never done anything for anyone.  jackp, if you really had improvement, I doubt it was from the vitamin E.

[ohno]

In nyc Dr. Mulhall (sloan kettering) and on Long Island Dr. Brett C. Mellinger (garden city) and Dr. Bruce Gilbert (great neck)

[MikeSmith]

Wow thanks for that post, Jack.  I have to say I was really upset when I left that doctor's office...since I waited 2 mos to see him & he was like - take vitamin E and leave.  Your post made me feel a lot better.  He was also very condescending, wouldn't listen to what I read in other studies by levine & lue, etc...

I didn't know there were such real risks of injections.  Sorry to hear that it made you worse, but thank you for the warning.  I don't have potaba, but I have pentox...so I am taking that for now.  Potaba seemed like too much hassle & pentox patients seemed happy.   However, if pentox makes my sleep issues any worse I may switch back.

[jackp]

Mike

I am one that vitamin e and potaba worked for in 1995. Sure it takes several months to see results.

If you have read through some of my post you will see I have posted this several times.

As to penile injections. My story says Don't Do It. It cause me to have corporal fibrosis and made my condition worse. Remember if you go the penile injection route there is a great chance of getting corporal fibrosis.

Jackp

[MikeSmith]

I had a horrible urology experience.  I was told to take vitamin E and come back in the summer.  No pentox, no arginine, no viagra...nothing.  Just vitamin E.  (Fortunately I have other doctors prescribing me the other 2)

He refused to admit the other two were even treatments for Peyronies Disease.  I asked him 3 different ways about verapamil injections -  and in 3 different ways, he said he wouldn't do it (though he admitted it was a treatment).  First, he said "nobody wants a needle in their penis" and I said - wrong... I will take that over an hourglass shaped penis.  And second, he said "it would be unethical to take that measure before you try vitamin E for several months" which is ridiculous because vitamin E does nothing.   Actually, it's unethical to deny someone treatment for a deformity that is causing physical and psychological distress..

Then I said - what could the verapamil even do that would be a problem and he claimed that it could cause more bleeding and more scar tissue.  Now, remember this is the same guy who claimed in his "20 years of clinical experience",  he has had great results with vitamin E (which no study posted here or anywhere shows has any merit beyond a placebo).  So, this is what I am wondering... is there any truth to this?   Finally, if anyone is in the NE region & knows a doctor who will inject this around here, please let me know.