Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[confused]

Two months after receiving a diagnosis of Peyronies, I finally had an appointment with Dr. Levine. He re-confirmed the diagnosis, and quantified the problem: a "moderate" curvature of 40 degrees. Based on this, he suggested his proactive "three-prong" approach: injections, fastsize, and pentox. He threw out some percentages on the success rates of Verapamil injections. Because I was physically/and mentally wiped out (the initial visit isn't exactly a fun experience), I think I only processed the statement that: "6% get worse." Nevertheless, the chances of improvement seemed higher if I opted for the injections, so I told them to fire away. Anyways, I will report back on my progress (or lack of) over the next 6 months. Obviously, any of this info can be used by the forum for informal data gathering.

I'm not sure if the remainder of this post belongs in another sub-forum, but:

As an overall experience, having the ultrasound, and the injections done in a single day is friggin' exhausting. The injections themselves are painful, but they did not last long enough to be torturous. It was largely the adrenaline rush caused by the unknown ("oh god, oh god, they are going to stick a needle down there!"), the constant poking and prodding, and the endless questioning. I am not trying to dissuade people from considering this option; I am just relaying my experience - it was exhausting, but not as painful as I thought it would be. It also helped to joke about the whole ordeal. In short, it is manageable but still a pain in the a$# 

Dr. Levine was a friendly guy, though the whole process was a bit rushed. I felt like the decision rested entirely on my shoulders and, at that point during the day, I think I needed to hear more than a rehash of success rates - which, by the way, he kept on repeating to incoming patients    Also, I am not sure where the percentages came from (clinical observations, controlled studies?) - I should have asked, but I was honestly too tired.

So, one day down, several more to go. I have my fingers crossed that I am not part of that "6%." I will post again. Thanks for listening!

[LWillisjr]

Confused,
Thanks for posting. There are several of Levine's patients (including myself) on the forum. My first visit was November 2007 and I know exactly what you are talking about. That first visit can be overwhelming. But I prefer that vist over all the ones I had prior with other urologists who kept telling me "there is nothing we can do". I was determined to try and do whatever it took. Keep us updated.

Les

[charlie44]

Had them this morning. If anyone is curious or thinking about getting them, here are the details of what it was like (for me). The numbing shot was at the top of the penis near the base. It's like a bee sting that lasts 10-15 seconds. Took about 15 minutes to get really numb. The actual procedure than took about 5 minutes. Since I have nodules on the side, the doctor squeezes and locates both sides (pinches) and then puts the needle through to get both sides at the same time. A couple times I felt a sharp pain, but it was short. After finished, I was instructed to apply pressure for 5 minutes to avoid bruising. My penis looked like it had about a 40% erection after the procedure, and I chalk that up to reaction to the medicine or the actual volume being injected. It certainly wasn't due to feeling good down there! Stomach wise, I started to feel queasy afterwards, but that was probably mostly due to nerves. Soon as I had a soda (sugar), and went outside for fresh air, I was better.

The doctor said if we are going to see good results, it usually starts after the 3rd injection. I will post on this board if I notice any change at any time, whether a day from now or 3 weeks. Hope this helps if anyone is considering VI shots. To me, it was the next step in treatment.

[james1947]

Charlie44
Thank you for the post, keep updating us. I someone will want to proceed with Verapamil, will know what to expect.
Wish you success with the treatment.
James

[charlie44]

Thanks James....I will post over time as things change (or don't).

[KAC]

Thanks for the update Charlie44.  I've had 12 shots and that's a fairly accurate description of what they were like for me.  I was not told to apply pressure--but heard someone say to do so on this site and it seemed to help.  It also seemed to help for me to avoid taking Vitamin E or Advil while having the shots.  Hard to do since I get headaches, but I did my best. This seemed to minimize bleeding which is already probably more because of the Pentox.  I too would have a 40-50% erection afterward, I think mostly from all the manipulation, though it would swell wherever the shot took place almost immediately.  I sometimes had 2 shots at the same time in different areas.  I did find it odd to not feel anything down there for a little while.

It seemed like I had the most benefit about 4 months after the first shot--about a month after I finished the first series.  I'm trying to document whether this is happening on the second round.  Hard to tell so far.  But my doctor seemed unsure whether the benefit would present this long after the shots.  I'm hoping though.

KAC

[restore]

I'm sure this has been discussed previously, but what exactly is the mechanism of action of verapimal?  I sort of undertand the collagenase action of Xiaflex, but how does verapamil differ in its action? 

From all the things I've read, I almost believe that if the docs would just perforate the plauques with multiple fine needle punctures, and using pentox, daily cialis, and maybe traction, most of our conditon can be reversed.  Just thoughts of mine.

[Luciano]

From all the things I've read, I almost believe that if the docs would just perforate the plauques with multiple fine needle punctures, and using pentox, daily cialis, and maybe traction, most of our conditon can be reversed.  Just thoughts of mine.

Well indeed some studies say that  the success from verapamil injections comes from the mechanical laceration of the plaque by the needle.
(I recall a study, where some patients had placebo injections and others verapamil and some no injections. Both verapamil and placebo injections had better results than no injections. cant find the study anymore)

Also there is a technique called leriche that just cuts holes in the plaque with needles. But there is only one french study that talks about it. AND, there is a comment by leriche himself (thats the guy that invented it) saying that he is not using it anymore because only 30% of satifaction. Although the guys that published the study using his method say they had around 70% satisfaction.
here is that study
http://www.peyroniesforum.net/index.php/topic,119.0.html

but make sure to read the 2 comments at the bottom. One by Leriche (the inventor) and one by another doc who says he caused more plaque when trying it the first time.
So I think one should be very carefull with it.
Luc

[james1947]

The document regarding Leriche technique is a study from 2002 to 2004. Hawk published it on the forum in 2005. I try to find any new research and  who is doing that today, no results. With 70% satisfaction, we should see a lot of doctors doing that.
KAC

It seemed like I had the most benefit about 4 months after the first shot--about a month after I finished the first series.

Can you detail what the benefits are? IE, curvature correction, erection, length, girth?
Thanks
James

[charlie44]

One thing that has happened is that any pain is completely gone. Now I was just at the end of an inflammatory cycle, so I don't know if the pain being gone is due to the shots/verapamil, or gone naturally as the inflammation was subsiding.

[KAC]

James: Curvature decreased from about 90 degrees to approximately 50 during that time, then stabilized.  Inflammation nodules seemed to be replaced with a more rope-like structure along the top.  Since I had developed new inflammation nodules in other places (the tip and the base) that were painful I went back for more shots about six months after the first round.  My uro injected both the nodules and also the rope-like structure.  We're just waiting now to see if it makes any difference.  I suspect it made no difference in the rope-like structure, but the nodules have shrunk. 

I'm grateful for the improvement and feel like I could just live with where I am now, but I do sometimes wonder if curvature may not be the best way to evaluate the progression of the disease (i.e. if the inflamed nodules are always temporary but impact curvature the most, then there's going to be a natural cycle to the curvature and some other measurement such as the size or density of plaques is what would be indicative of true improvement.  And if this is true, then the verapamil may not have helped.  I always wonder this when I look at the studies that measure curvature as an outcome.  Plus placement of the plaques seems significant to curvature.  I have one nodule that is deep near the base close to the pubic bone-basically inside the body--and my doctor says this will not affect curvature or shortening.  Do some studies measure volume and density of plaque instead?  Just wondering.  The science around all this seems pretty young.)
KAC

[james1947]

KAC
Thanks for the answer. Decrease of 40 degree it is substantial. From the other side, I agree with you that curvature may not be the best way to evaluate the progression or regression of the disease.
Many people have curvature not related to Peyronie's, just born like that and not disturbing them sexually.
For me the best indications for progression or regression of the Peyronie's are erection quality, girth and length.
You have not mentioned any of those things, I can assume that has no change?
James

[Luciano]

One thing that has happened is that any pain is completely gone. Now I was just at the end of an inflammatory cycle, so I don't know if the pain being gone is due to the shots/verapamil, or gone naturally as the inflammation was subsiding.

Just as an indicator. In 2007, it was just the beginning.. slight curvature and hourglass... my uro sent me to a peyronie specialist,  that is supposed to be THE specialized uro here in Austria, publishing quite a bit and specialized in iontophoresis.

his name is igor stancik here is one of his ionto publications.
http://www.ncbi.nlm.nih.gov/pubmed/19604562

I had like 20 sessions of ionto with a verapamil mixture with him. He told me it wouldn't work with me - But I insisted..(as I paid for them, he did them - OK, he was right.. it didn't work).

I know i'm off topic, but this quote of him is not:
"I ususally only do the verapamil ionto for patients that have pain. That works quite well. If you dont have any pain it will be useless for you"

He also told me: "I am against injections, because we can harm the tissue". He also warned me of surgery saying the chances of causing damage were very big.
He is not my uro any more, as he did not help me, but he does know a lot about the subject.

my 2 cents

Luc

[james1947]

Luciano
Sorry to read that it didn't helped you. Did your situation get worst after the injections?

Some people are stating improvement from the Verapamil injections, some complain of more damage.
I had no pain from the beginning of my Peyronie's and the places to inject are too many so I will not give a try.

I would still want to know if the improvement was in curvature only or other improvements also.
James

[Luciano]

Luciano
Sorry to read that it didn't helped you. Did your situation get worst after the injections?

No i did NOT get injections, but only verapamil iontophoresis! situation did get worse but not because of the verapamil, but I was still in the acute phase.

New member - questioning my doctor's Verapamil injections

Started by Drew Introduce Yourself

Verapamil experience/questions?

Started by youngman77 Verapamil - Injections & Topical Applications including Iontophoresis

CCH/Interferon/Verapamil/Xiaflex Injections?

Started by FlatteningTheCurve Verapamil - Injections & Topical Applications including Iontophoresis