Priapus shot

[james1947]

fredjones

VED procurement issue is off topic here, but I want you to get a second opinion.
I will second NeoV regarding the sex toy shop VED, I am using one at $35.
In my opinion, manually operated is much safer than the electric pump one.
I just want to add that that it must have a fast release button.

James

[james1947]

Nemo
Thank you for the post.
As I understand from the article, the people pushing hard the PRP treatment are people that can get big profit from it. Maybe I am wrong.

Ursus
Thanks for the summary you have made.
I attribute my zero gains to my age, 3 years not treated Peyronies and not healthy living.
From the other side, my calcified plaques became soft to the level that the doctor was able to inject into them.
I attribute the softening to VED, Pentox and low dose Cialis.
I will made the third PRP in August because it cost me $180 and I can afford this amount.
If it will help this time, I will continue to the fourth. If no help, the only remaining option will be an implant.

James

[UrsusMinor]

Hey, James--

Who knows? It might be that us old people require repeated attacks.

I was encouraged by the fact that you had positive results for a time. That seems to suggest that something is going on. Maybe it's enough to cure some of us, but not all of us.

Or maybe a fourth shot will turn the trick. I have to say that softening of plaques seems like a good thing!

[Litani]

I am thinking about getting the Praipus shot.  I have a single plaque and has started to calcify so I am not a xiaflex candidate.  I would be really happy if the shot softens then plaque so I can become a xiaflex candidate.

James.  At some point, you were not able to feel the plaque.  Is it still the case?

[incautious]

Hey Ursus, great post. Its somewhat unfortunate that we are really the guinea pigs so to speak at this time for this treatment, which is why it's very important for every one to post their results regardless of the outcome. A 66% improvement in curvature is amazing when you think about all the other treatments that have been tried in the past.
James It might be a good Idea to start  a new thread based on Ursus initial data and only add new data as it comes in from the other members. Just a tabulation no other info on that thread. This way we will have our own database where others who may be considering this treatment can get an idea of the effectiveness of this treatment.

[nemo]

Again, I'm going to take the contrarian approach here, as I believe it has a valid place in this discussion, especially considering the high cost of this treatment in the US.

Before we declare that Priapus/PRP injections have a "66%" success rate in reducing curvature, let's qualify that rather impressive statistic.  Let's recall that some of these self-reports were supported with images that caused debate as to whether there was actually any reduction in curvature present at all.  Hand-in-hand with this is the "56%" size increase - let's assume this is from fluid swelling, which would make sense when injecting a volume of blood/fluid into the penis.  It would stand to reason that such swelling would appear to reduce curvature - operative word being "appear" to reduce curvature.  

My point is only that distilling forum members' self-reporting down into percentages can be misleading. Relying on self-reporting is necessary, absolutely - you guys are indeed the brave guinea pigs with Priapus.  But we can't overlook the method by which this "66%" was arrived at.  If I were to read this stat table, as a new Peyronies Disease sufferer, I'd burn rubber getting to the Priapus doc.  As always, the devil is in the details.  

The most encouraging aspect I've seen from any of this is James's report that his plaque was softened by the shots and at one point, as I recall, non-palpable. Would like to hear how he's doing in this regard currently, but as I've contended from the beginning, until someone can have a scan that conclusively documents a true plaque reduction following these shots, I think we're dealing as much with "perception" as we are "reality" - and that can easily be misleading statistically.  

Nemo

[UrsusMinor]

If I were to read this stat table, as a new Peyronies Disease sufferer, I'd burn rubber getting to the Priapus doc.

That is, in fact, what I'm doing. Except I'm taking a plane. I will have before and after pictures--taken in profile (my curve is dorsal) with a bone-pressed ruler and the camera at a set height and distance. Alas, no ultrasounds.

You're welcome to be as contrarian as you like. I think it's a useful role.

The reason I compiled that table was for my own information, because I wanted to see how many people had reported improvements in particular parameters. I have followed the individual posts with great attention, but I found that I still wasn't sure how many people reported one kind of effect and how many reported another kind of effect. My impression was that more people had reported improvements in ED than actually did; my impression was that less people reported improvement in curvature than did.

There is nothing 'misleading statistically' about any of this. Those are exactly the percentages of people who reported improvement in those parameters. You are free to question whether the improvements were real, but the statistics are the statistics.

If I encountered this table without the totals and percentages, the first thing I would do is tally up the numbers and calculate the percentages. I actually think that most of the members here are capable of calculating percentages.

We are assuming here that forum members, new and old, are savvy enough to work with VEDs and traction devices (both have real risks). We assume that they are smart enough to handle the risks of taking off-label prescription drugs--or even the risks of buying and consuming drugs without prescriptions. We assume that they are clever enough to sort through advice--which are only opinions--about which urologist to visit.

But apparently they can't be trusted with a percentage?

[nemo]

"There is nothing 'misleading statistically' about any of this. Those are exactly the percentages of people who reported improvement in those parameters. You are free to question whether the improvements were real, but the statistics are the statistics."

Yes, exactly. That's precisely what I was saying. The chart depicts (accurately, I'm sure) self-reporting.  I was simply emphasizing that such self-reporting is itself often caught in a balance between perception and reality.

I wish you the best in your treatment and do look forward to your documentation of it. Believe me when I say I hope you make my jaw drop — you may find me on the plane next time!    

Nemo

[james1947]

I think I expressed myself wrong, form there the wrong understanding of the plaques softening reason.
The plaques, I am sure were softened by my long time treatment that the main components were:
VED - 30 minutes daily, 3 years with some breaks for up to one month.
Pentox - 3*400 mg daily for 18 months. Had to stop some 6 months ago because it weakened my immune system.
Low dose Cialis - 4 mg daily (approximately because is difficult to cut the 20 mg precisely)
What I mentioned is that the plaques were calcified (according to three urologists) and felt very hard before.
The doctor that administered the PRP penetrated very easily the plaques because they were softened already.
I will mention again that the temporary gains were after the first shots of just 4.5 ml and I didn't used VED in the first week after.
I had no any gains after second shots, 9 ml and using VED immediately after the shots. Used the VED just some 5 minutes because blood started to leak from the injections places.
I know that most of the people using VED immediately after the PRP to spread the PRP. In my case I think it was batter not using VED for one week.
Next time I will not use VED after the injections for one week.
Sadly for me, the curve, bend, length lost, girth lost and ED are same as before the PRP shots.

James

[Litani]

It would be interesting to know how many people from that chart have calcified plaques. Maybe priapus does not benefit people with calcification similar to xiaflex.

[UrsusMinor]

That could be. I also wish we knew how old everyone was, and how long they had Peyronie's.

It's not clear, though, that Xiaflex doesn't benefit people with calcification. All we know for sure is that they were excluded from the drug trials. But that's not surprising: the company wanted the best possible results, so as to win approval. In addition, it would have complicated the trials and statistics, as they would have had to subdivide the population into calcified and non-calcified.

A couple of forum members have reported they read it is being used on calcified plaques.

[james1947]

I will check it, but I think my plaques are not calcified anymore.
Otherwise was not so easy for the doctor to inject directly into the plaque with the thin needle.
As I have posted, I am 66+, Peyronies 5+ years.

James  

[UrsusMinor]

That's interesting indeed, James!  

[UrsusMinor]

Well, I had the shots two days ago. First, the good news: My total bill was $1,200. So prices are definitely coming down.

The Total Male clinic in San Jose is a great place. The staff is casual, but savvy and experienced with all things related to your penis. The tone of the place is a little different from your average doctor's office; more like being here on the forum, where very personal things can be discussed without any discomfort. Jason Sachman is a great guy.

The needle and syringe they use to draw blood is effing HUGE. Since they want at least 10 ml of PRP, they need to take considerably more whole blood than that.

While they were spinning it down, I rubbed the numbing cream on myself, and then the three of us--there were two doctors for the procedure--we looked at the picture of my erection which I had brought and they tried to sort out the details of what was happening. My curvature is out just an inch or two back from the glans, and in that area there is some baggy skin where things no longer expand properly; it made it obvious where the loss in length is.

One of the interesting things about this clinic is that both docs have had the shots, just so they know exactly how it feels. (In fact, one of them has had the shots twice, once without the numbing cream "to see if it made any difference." The answer, was, yes, definitely--don't do this without the cream!)

Once I lay down on the table they messed around with my penis, trying to understand the distribution of the plaque. I have a thin, symmetrical shield-shaped plaque (sort of like a fingernail, if that makes sense) that is easy to find. But they spent more time fiddling with the two long cords that extend from the plaque up toward the glans. I had felt these before, but assumed they were veins or something. They told me that they were definitely fibrous growths, and one of them said that he thought those cords, rather than the flat plaque, were the major cause of the curvature--he described them as acting like the reins on a horse, pulling the horse's head back.

Anyhow, I ended up with 12 ml of PRP solution, and they used it all. My plaque turned out to be reasonably soft so it could be easily penetrated with the needle. They also gave me shots right under the two cords, a subcutaneous shot of the area where I had lost the most length and girth, and a couple at the base of the glans. I am sorry to say I lost count at some point; it was either 7 shots, or 9.

Afterwards they massaged my penis, trying to move the PRP around in the tissues.

I won't say it was exactly painless, but it wasn't really too bad, considering that they are sticking needles into your penis.

Although I brought my VED because I thought I would need to pump right after, they told me to give it a rest for at least a few hours, or even until the next day. Unlike the logic I have heard several times that the VED is to sort of keep the PRP in the area, I was told that the VED was to ensure that it spreads around locally. They also told me that erections were just as helpful as the VED, so if any popped up they should be greeted with a smile. (As a number of people have noted, their VED protocol is to pump up and hold it at fairly high pressure, rather than our pump-and-relax cycle protocol.)

The worst part of the process for me was going back to my hotel with a numb penis. That just feels all wrong.

There was a little pain afterwards, once the numbing cream wore off. In a few places, I could feel where I had been punctured. Although they told me there might be bruising, I didn't have any.

I had erections that night, and morning wood. Same thing again last night. The curve, of course, is the same as ever.

The main things I have noticed so far are a more relaxed flaccid hang, and a lessening of the chronic pain I have when flaccid. Both are welcome.

They told me not to expect any major changes for at least 3-6 weeks, and that for Peyronie's some of the full benefits may not be seen for 5 months. They also told me what I have heard here a thousand times (it ought to be the PDS motto), "Blood in the penis is good."

So, now we'll see!

[NeoV]

Keep us informed Ursus, wow 1200 dollars is great!

I am relieved to hear that think they found your plaques. I am dying to know if I have plaques, or just crazy messed up veins. Mine also are like reigns that wrap around my penis and pull on it from the underside.

I'm also happy to hear that the doc and the team are good guys.

As for your results, I guess only time will tell. If it does work via all the stem cells and stuff, I guess it makes sense that it should take several weeks. You've been brave Ursus, really hope this helps!!!!!!!! Now it's time for you to let the PRP magic (or not) work so sit back and relax

I'll most likely be getting those shots soon as well

[fredjones]

I'm seeing Jason next thursday...nice to have info on them even though i've chatted with him several times.  when you say that you had erections that night and morning wood, had you not been having them and is this, you believe, a outcome of the shot?

[UrsusMinor]

Hi, Fred--No, I have night erections and usually have morning wood. I was just a little surprised to have them so soon and so forcefully just a few hours after having my penis repeatedly pierced with a needle. I figured Mr Happy would probably want the night off. (Not to get too graphic, but they were unusually stiff, too--the kind you can hang bath towels on.)

I'm not sure if it had anything to do with the PRP, or if my penis was just celebrating having survived being stabbed.

Neo, I'm sure they will have some opinions about what is going on inside there. These guys seem to know their way around penises. I suppose that makes sense. Normal urologists have a lot of body parts to worry about (including female ones). I guess these guys spend a lot less time on bladders and urethras and infections and whatnot, and spend a lot more time on penises!

As to stem cells, they were actually chatting with me about that: they both think that the optimal therapy in the future may be PRP plus stem cells, injected at the same time.

Since you have a number of unusual thoughts about Peyronie's, I expect that you will have fun chatting with them.

[Douglas Hall]

Fascinating! Thank you for the update Ursus, hope this treatment gives you
maximum benefit!

Did the doctors tell you more about the origin of the fibrous cords?
Are they common in Peyronie's Disease?

I feel as though I may have similar tissue.

[Thisismyusername]

I'm going to have to agree with Nemo on this one.  I have to say that based on the pictures I've seen I haven't been impressed with PRP.  I also think that self reporting is extremely unreliable.  I haven't seen anything that I would call "objective" improvement from PRP.

I will also say that I received a corticosteroid shot into my penis for the purpose of getting rid of pain and I noticed that it hung fuller and I had less hard flaccid for a few days, and I had less penis pain for a few days.  I attribute the fullness to fluid build up and the reduction in pain to the anesthetic used.  After a few days both these effects wore off.  By default I assume that other people who have similar experiences from PRP are having them for the same reason.  And it seems that PRP tends to keep the penis swollen for longer resulting in an "increase in size" although in my opinion not the kind of increase in size that I would personally want.  

With that said I'm grateful for people who are reporting honestly about their experiences with PRP and especially those willing to post pictures.  I just have to say that I'm not seeing any clear benefit to the procedure at this point.  And it is expensive, and of course involves a needle in the penis which always carries some risk of aggravating things.  

[UrsusMinor]

Douglas--

The docs said nothing about the origins of the cords, but they didn't seem to think they were especially unusual.

They did seem to think that they were one of the major causes of the curvature.

I've heard a few other members mention similar cords, but I haven't heard any of them say anything about their urologists mentioning it. Puzzling, huh?

[Douglas Hall]

Ursus,

The PA who did my Doppler noticed mine, and thought they were causing my indentation.
However, my Urologist did not mention them at all.

So, yes, puzzling is a great word to describe this disease!

[james1947]

I have stated in the past that my cord like plaques was detected in ultrasound by three different urologists.
All of them were in opinion that this cord is causing my upward banana shape.

James

[UrsusMinor]

Thisismyusername--

I haven't seen that many pictures from different people after PRP. (A lot of pictures from one person, I think. Are there several people who have posted before-and-after? I don't seem to be able to find the thread in question anymore!)

If I show any improvement, I will at least have a standardized before-and-after. I don't think I'll bother to post pictures if nothing happens!

As to the cost, what is 'expensive' is a matter of opinion. PRP is expensive compared to, say, a bottle of CoQ10. My cost was $1,200, which is about the co-pay on one round (of the four recommended rounds?) of Xiaflex.

If you look at cost-benefit ratios, I guess anything is expensive if you get no results.

I don't even know how to evaluate the cost of something where you pay a lot of money and risk major side effects.

The few things that have firm scientific evidence on their side either don't have high success rates, or are accompanied by serious side effects--or both. Basically, we're screwed.

[NeoV]

How's it hanging Ursus?

Anyone else who had it done have any comments?

[IhatePD]

Hello All,

I just want to give everyone an update since my Priapus shot. Unfortunately, I can't give much information on the state of my penis since the shot. I have been battling a ruptured blood vessel in my prostate and after spending eight days in the hospital a week after the Priapus shot, I have since had to have two more catheters inserted into me in order to urinate since leaving the hospital.

I am currently still using the second catheter for eight days now and I am waiting for the surgical scheduling nurse to call to set up a date to have TURP (trasnuretheral resection of the prostate) surgery. During this time, I did have sex twice followed by resumed bleeding the next day which is probably why I had to have two catheters since the hospital stay.

I never really got a good look at my penis since the sex was rather spontaneous and perhaps too lengthy which may have caused the bleeding. I can tell you that the narrowing on the distal left side of my penis felt fuller when I touched it initiating sex. I really can't tell you how much but I know it felt different. My plaque seems to be smaller but it is hard to really tell with a tube stuck in my penis.

If trauma and Cipro are causes of Peyronies Disease, then I am screwed.  I have had a total of six catheters, one cystoscopy and one cauterization of the prostate since June 24th. Now I am going in for the TURP surgery followed by another catheter.

With all that said, I am very optimistice that I will beat Peyronies Disease. I have never walked away from a challenge and I won't start now. This is my life and I will live it on my own terms, period!

[Thisismyusername]

Ursus,

The two people I remember who documented their before and after with PRP were incautious and mentos.  I'm not sure if there are more people who posted pictures.  

[NeoV]

Hang in there IhatePD, wow what a crazy ride! Like you say, once this is all over just keep on attacking Peyronie's and everything with all you got. I'm hoping the PRP is doing some good work, if anything maybe it will prevent some damage from anything going on right now. Things will be better soon for you I hope. Stay positive and thanks a lot for the details.

[NeoV]

So is there a consensus yet on whether pumping is good or not after PRP? It seems odd to me that two doctors differ on their approach with this. Runnels seems to think pumping is good but another thinks it would actually be bad.. that's quite a difference of opinion, and I sure wouldn't want to mess that up.

[liber]

is there any consensus prp really helps peyronie's.

[james1947]

No, there is not consensus regarding PRP helping Peyronies.
Regarding pumping, my experience was temporary improvements from 4.5 ml PRP with no pumping, no improvements at all from 9 ml PRP with pumping.
I will go with no pumping with the next shots.

James  

[incautious]

James, Interesting that you feel you got better results without pumping. I know that "washout" has been a topic of some discussion with PRP, and as to weather its better to pump or not to pump. If you recall my original post right after I received my shot, I went home and pumped for 2 hours(because I had time to kill) and rolled my manhood in between my hands say every 15 minuets in an effort to evenly distribute the PRP.  Did this help with my results, I can not say, but intuitively, I felt that it was necessary in order to localize the PRP.   It has been 6 full months since I've gotten the shot, and while I have nothing new to report, all the improvements that I have reported, are still there. Quite honestly, if it wasn't so expensive, I would probably get another shot just to see if there were any thing more, since I've seemed to have plateaued out at this time.

[nemo]

I guess I don't understand how pumping would prevent "washout" of PRP or anything else in the penis.  Maybe if one were to pump and hold, yes, but pumping and releasing, if anything, constantly recycles blood through the penis.  

Nemo

[incautious]

 Remember you are not injecting PRP into veins or capillaries but tissue and hopefully in our case plaque, which should take much longer to drain out. After all, when one pumps vigorously, there is significant time,several hours, that things stay engorged. Is that enough time to get things started and make a difference? I don't know.  

[nemo]

But the penis is comprised of essentially hollow or spongy "tubes" - the corpora cavernosa - which engorge with blood to produce an erection. This has to be where the bulk of the PRP resides - in the corpora, in the spongy void.  And each time an erection is produced, the volume within these corpora is replenished/replaced. At least this would be my understanding. There's no way the volume of PRP could be injected directly into tissue like the septum or corpora walls - it has to be within the relative "void" of the corpora itself, I'd think.    

[incautious]

Nemo good question. The following patent, by Biomet Biologics llc, explains how the mechanism PRP would work on the penis. Keep in mind that this patent is for ED, but the principal of using PRP is the same since Runnels also makes the ED claim with his shot..  
http://www.google.com/patents/US20120183519

Biomet was a publicly traded company until it was purchased back in 2007 and taken private. They had sales of around 2.5 billion back then, so they will have much more credibility than the good Dr R.  Since they are private ,numbers are hard get, but if one assumes just a 7% growth until now, they would have sales in excess of 5 Billion US dollars.

[james1947]

I want to mention again that after the second shots I pumped for less than 10 minutes because the blood (injected PRP?) started to get out from two of the injection holes. But continues to pump after getting home (3 hour drive) every day twice.
I don't know why in my case was like that even my blood is sticky and I didn't take my daily 100 mg aspirin.

James

[UrsusMinor]

Well, there are two theories on the table (pumping prevents washout, and pumping can cause washout). The third theory, from my docs, is that pumping is to distribute the PRP into adjacent tissues. They massaged it ("rolling" ala Incautious below), but told me there was no big rush in getting to the pumping, They also said that erections were equally good.

The platelet solution is treated with an anticoagulant to keep it injectable, otherwise it would just be a clot. But I can believe that the platelets have a tendency to clump in the tissues once injected, and need to be persuaded to migrate.

"Washing out," pro or con, never made much sense to me, but I guess there isn't much evidence one way or another. These platelets are not active cells who are going to rush toward the nearest blood stream to try to get into circulation. They are strongly inclined to adhere to tissues, especially damaged tissues. The PRP theory, right or wrong, is that the platelets contain growth and repair stimulating factors. So I can see my doctors' point of view: the problem is to move the platelets from the site of injection to the neighboring tissues.

[incautious]

Ursus , good post. I hope that your results will be positive

[LarrySauce]

Hi all, I am new to this forum but was diagnosed with Peyronies Disease about 18 months ago. After unsuccessful Verapamil treatment with Dr. Mulhall in NYC, I'm ready to give this a shot.

Im aware that there is a list of doctors who administer the shot, but I would rather use one that has administered to one of you who have had positive results. Can one of you let me know which doctor you got your priapus shot from?

Thanks for your time.  

[fredjones]

just an update.  i've talked to a few of you on this site and stated that i do not have peyronies disease but found this as the only site with real life experience with the P shot.  i've researched the shot for over a year and found that you guys here are the only ones i trust with their comments as other places sound like salesmen for a product.  i had my shot a week ago from jason sachman in san jose california.  he has performed the shot for a couple of you here.  he is honest and forthright and charges less than others.  i paid 1120 as i already had a pump and he gave me 80 dollars credit otherwise it would have been 1200.  i've check with others and the want to do test after test and will eventually cost more than 3 grand.  jason has had the injection twice, both times giving it to himself to see how product feels going in and the effects that it may or may not have.  i'm doing it mainly to improve ed and the loss of feeling in my head of my penis.  jason injected more in the head as that is where i wanted more of the improvement.  my wife was there holding my hand.  it did hurt...some....the initial insertion and the feeling of the pro going into the penis...i'd do it again if i do find results happening.  had sex that night and the head hurt somewhat.  no bruising, little pain in the other injection sights.  6 days in my wife noticed that the penis looked larger. no increased feeling as of today but it should take awhile it it will at all.  i did pump before and a few days as i was on vacation.   after one week, i'm 1/2 longer in the pump (which may or may not be accurate). we (my wife and I) will measure width later and see if there is any increase (at the base, mid shaft and the head).  good luck for all of you in fighting this.

[james1947]

fredjones

Good luck with the treatment and thanks for the update.
What you are expecting to achieve with the PRP treatment?

James

[fredjones]

hoping for return of sensitivity.  not having to take cialis.

[incautious]

fred, thanks for the initial observations. As you have mentioned, this is the only site on the entire internet, where one can get, at the very least, real world observations about this procedure. The more people that report their experiences, good ,bad or neutral, helps all of us. I to, as did James see a 1/2 inch increase while pumping within a short period of time. Weather it is real or permanent has been debated. But that is a good thing ,as at least there is serious discussions about this procedure.
As for having sex that day, wow you are a brave soul. I at least waited 3 days lol. You will see improvements in week or two. In my case the sweet spot started around 3-4 weeks. The fact your wife is aware of what you have done is great. She will encourage you to be diligent in doing  the required pumping, which I believe is necessary. Keep marking any benefits you get on the VED tube as this is a great way to chart if anything is happening.  

[fredjones]

incautious...what specifically happened in your "sweet spot" time frame?

[incautious]

Much increased sensitivity. Vast improvement in ED, plus a real reduction in curvature. Your body responds to PRP like an injury. Think of it like you get a cut. It takes days and weeks for the body to heal it, it does not happen over night The same is said of PRP.  

[op]

Injection to penis glans isn't it dangerous? There are many nerve endings, which are responsible for sensivity. To prevent glans damage during injection is impossible I guess... Just curious

[incautious]

actually the injection into the glans didn't hurt at all, if you can believe that. The middle around where the plaque was, well it was a pinch+

[op]

ok, thanks

[UrsusMinor]

larrysauce1--

In a few cases I'm not sure who the PRP doctors were for people on this forum. The two who have done the most treatments for us, however, are

Dr. Kenneth Varano, Philadelphia, PA http://www.drvarano.com/priapusshot/

Dr. Jason Sachman, San Jose, CA http://www.totalmale.com/author/jason/page/2/

I did mine with Sachman, based on geography and PMs from others on this forum, but the people who have gone to Varano also seemed happy with him.

[LarrySauce]

Ok thanks a lot UrsusMinor. Dr. Varano is drivable from where I live so I will give him a call in the morning. I will also post before and afters as I track my progress.