Thread for Guys in Xiaflex Trial - Currently or Previously

[Knight]

Good post Nick77! Thanks for sharing your experience and hope! Good luck with round 2!

[james1947]

Thanks for the post Nick.
It will help others in Europe, as the information is very limited.
What about the payment?

James

[jc961]

Anyone not had any change after the first shots...but did have positive changes with the second series or third?

[james1947]

jc961

You should spend some time reading this board and you will find the answers

James

[jc961]

@james1947 I have read the boards in the past...but I don't have time (as I'm sure most people don't) to go back through every post every time I have a question! It's a lot easier and quicker to ask and receive an answer. I have the second round coming up in the AM and was asking to see what my expectations should be.

[Knight]

I am in the same boat. I don't think I have had any benefit after round 1 and also have round 2 coming up in a couple weeks. I think your question is excellent and I don't recall if there have been any similar accountings from guys who have gone through it. It seems to me that most have had thier most dramatic improvements after round 1, but I dont remember anyone saying they didn't get any results until the 2nd or 3rd round.

Good luck!

I hope this round is very successful for you!

[james1947]

jc961

You don't have time, but expecting others to find time. Nice.

James

[jc961]

@Knight Thank you for your feedback! I start round 2 Tomorrow so I will keep everyone posted!


@james1947
I would expect the answers from a moderator of this sight to be a little NICER! If no one answers me, then so be it! But I don't need the negative vibes that you are showing. It's bad enough we all have to deal with this horrible disease! I thought this site was to HELP each other. Please let me know if I was mistaken!

[Mending the Bend]

Anyone not had any change after the first shots...but did have positive changes with the second series or third?

I'll take a stab (pun intended) at this one. Before my Xiaflex shots, I had bilateral curvature - roughly 40 degrees lateral and 40 dorsal. I experienced a big improvement in lateral curve immediately, but my dorsal curve didn't see any reduction in curve until the 3rd or 4th shot. Granted, we were targeting the lateral aspect of the curve initially, and I was pretty happy with those results. But nonetheless, I had no observable improvement in upward curve after a few shots. Since then, though, it has been reduced by about 50%. Hang in there, and keep up with the modeling and traction. Those are important.

[liber]

jc961

You don't have time, but expecting others to find time. Nice.

James

james good manners costs nothing. people enter this very complicated forum (olive oil, prp,saw palmetto .... nice!) for support not to be put down.

[Timdvm]

Hey Guys.  Anyone had more than the 4 xiaflex series?   I completed the series and still have a palpable plaque.  I initially had a large plaque along the top, wasting at the plaque and lack of rigidly after the plaque area.  I saw some improvement with the xiaflex but wondering if the expense is worth going past the 4 rounds  - any thoughts would be apprediated.  

[hope4all]

You may want to Private Message PMRT, or read his posts.  I think he's had 6 rounds of shots, maybe more.  

[IhatePD]

Hello everyone, I just want to let you know that I am going ahead with Xiaflex with my first round of injections tomorrow and Thursday.  My doctor is Dr. Metro in Norristown PA.  He was part of the trials and when I saw him about 6-8 months ago, he was presenting to a group of urologists the following day.  He told me then that he wants his patients to use traction with the other modeling procedures recommended with the Xiaflex treatments.

It seems that since then, others on this site have also been told to use traction.  I plan on bringing my traction device and using it immediately after each injection.  He told me that the best results he has seen were with patients that did traction 2-3 hours per day with the Xiaflex.  Those that did not, got less results.

I use the Vac3 extender and I bought a "peyronies" modification that stretches the penis over a bar in the traction device, further stretching the plaque for someone with an upward curve.

My official measurement is a 40 degree upward curve with some distal narrowing.

I will keep everyone posted.

[hope4all]

Best of luck IhatePD! Keep us posted on your recovery and early results.  I've probably seen a 10 degree improvement from my first round of shots, from a 50-60 degree upward curve and some of my girth has returned on the left side.

I'm going for my 2nd round at the end of Feb.  Good luck again!
hope4all

[IhatePD]

Update:

I had my first round of shots over the last two days.  After the first shot, I did traction that night for two hours without any pain or swelling.

After the second shot, I asked my doctor why he wants me to wait till Saturday to do the traction and modeling and he said that during the first day or so there is an increased risk of rupture. I wanted to do the traction after the second shot but decided to hold off.  I will probably do some tonight.  I don't feel sore at all and very little initial swelling.  The doctor gave me an ice pack to wear after each shot and it seemed to work.

The second shot hurt more than the first.  The angle was different, he injected me in a plaque/chord starting from the glands and injected towards my torso.  The first shot was latterally in the same area but from my right side across my penis.  The second shot seemed to take longer as well.

I will do at least 2-4 hours per day of traction starting with two hours tonight.  I will be very careful as I would rather need another round of shots verses a ruptured penis.

So far, no brusing and no pain.  I am very surprised about the no brusing as I tend to easily. I had an erection last night and it seemed to be about the the same bend. I did not do modeling per my doctors instructions.

Question to those who have experienced positive results with Xiaflex: how long was is before you started to see results?

[pointedly]

@IhatePD:

I didn't notice any significant improvement in curvature until injection #6.  Here is what I did for modeling:

Injections 1 & 2 - Standard pulling for 30 seconds with straight pull, immediately followed by straight pull & down bend, 6-7x/day.  Dr. Trost also recommended traction, but I didn't do it until 3-4 days post injection.

Injections 3 & 4 - Tried "premodeling" for each injection by wearing traction for the 1 hour drive to Mayo Clinic.  Wore traction on the way home both days & did it again each night for an hour or so.  Also continued with hand modeling as described above.

Injections 5 & 6 - Traction on the way home each day.  On the way home after #6, I felt a slightly sharp pain after a half hour of traction and felt something "let go".  It felt like the device had slipped off, but I looked down and it was still in place - I think it was the plaque breaking up.  My first erection after the swelling disappeared, I noticed that I was probably 45 degrees vs. the 69 I started with.

To answer your question in your last sentence, I saw very slight (emphasis VERY SLIGHT) improvement in curve after 3 & 4, but the pain I was experiencing with any erection, diminished after 1 & 2.

Injections 7 & 8 - Today is Sunday, # 7 was Thursday and #8 was Friday (2 days ago).  I swelled very badly on Thursday after traction on the way home.  I wrapped the unit in gauze that night so the injection could be done the next morning.   Friday traction was EXTREMELY DIFFICULT because the device kept slipping off due to the previous swelling.  It was disappointing because I was hoping something would "let go" on the way home,, like after #6.

I never try to gauge results until a week or so, post injection.  I think the swelling at the injection site probably expands the plaque and makes the bend less severe.  Do what you are comfortable with as far as traction.  What you and I and everyone else getting Xiaflex injections amounts to nothing more than an "extended clinical trial."  I waited until some of the early patients got injected after FDA approval.  I knew that by the time I got my first injection, that Dr. Trost could tell me what his patients with the best results were doing for modeling.

Does your doctor give you that same info?  What the patients with the best results have done for modeling?  AT A VERY MINIMUM, I would do the hand modeling after each injection.  The drug is most active for 1-2 hours, post injection.  It's a golden moment to have plaque be broken up.  Dr. Trost has also indicated that the 24-48 hours after the injections are critical for modeling.

One thing I always do is use hot packs prior to traction (except immediately post injection) since I think it warms up the muscle before making it "work".

Hang in there.  You will see some results.  Be smart, but aggressive with the modeling.  I would not try anything new, immediately post injection.  I think it's a mistake to add tension or try a new length with a traction device, immediately post injection.  I, emphasis I, am comfortable applying the same length of traction that I have worked up to for a week prior to the day of injection.

Talk to your doctor before the next round about modeling's relationship to results with his other patients.  If he seems unsure, ask him if he would consider talking to Dr. Trost or his assistant Josh at Mayo - Rochester about their opinions.  We are not operating in a vacuum here - this is a forum for sharing experiences, ideas, etc.., about a disease that is difficult to treat and overcome.
 Doctors are the same way (or should be) and I KNOW that Trost would be eager to share ideas and info with his colleagues.

[IhatePD]

pointedly,

Thanks for the info.  My doctor said that his patients that did traction experienced the best results, 2-3 hours per day.  I am doing at least 6 hours per day starting last Saturday, 48 hours after my 2nd injection. I am getting up very early to get 2-4 hours in before I leave the house and then finishing at night.  The Vac3 extender helps a lot.  I couldn't use a strap traction device for that long a time.

I am not really seeing any change in my upward bend but my distal narrowing has improved a little, enough so that my girlfriend saw it first.  I know I was supposed to wait 2 weeks before sex but I couldn't wait and had sex Saturday, 9 days after my 2nd injection.  I was VERY CAREFUL and never inserted my penis all the way, just played in and out with a few inches only. No pain and no damage.  My girlfriend has our 2 week mark ready to go.  I told her we still need to take it easy as this is all new and I don't know what might happen.

My doctor felt I should wait until 48 hours passed before using traction as it increases the risk of rupture.  I really want to use it right away and might do so  on my next round.  I agree that the traction length right after the shots should be the same as you used leading up to the injections and not be increased. I use a relatively strong amount of traction and I get sore where the base of the traction device presses on the skin at the top of my scrotum.

I will keep up with the traction and will start adding the VED as well.  I will keep everyone posted on my progress.

[yyy]

Guys an important question

I had just one xiaflex injection in December.

I can't understand how you can wear an extender the same days. In my case, once the anesthesia was gone, I started to feel some terrible pain and I could not use the extender until day 4th.

So when exactly are you using the extender? Immediately after or some hours after?
Don't you risk a penile fracture by using a device so soon?
Thanks  

[james1947]

Not an answer to your question yyy, but when and where you got the injection?
I know you was searching for a doctor back in November 2014.
What are the results?
Why you got just one injection?
Please let us know.
Not connected to the subject, thank you for proposing me the Avanafil back in October. I miss your post.

James

[yyy]

Guys it's important, please reply

James I had one injection which helped me a little for rigidity but not for the bend

[kdb123]

Hello,
I am very sad to report that I am one of the victims of the xiaflex causing a corporal puncture and penile fracture. I am crying as I am writing this. On 3/31/15 dr Conners at mens health in boston did the modeling after 3rd round. He killed me and on the way home my penis erupted. Blood everywhere. Conners completely dismissed my complaints of pain during rounds2 and 3.  He said its normal and to grin and bear it. His modeling was so vigorous and strong that he broke my penis.
I was in hospital for 2 days. Now I have gone to a reconstructive specialist.
He says I for sure have hole internally. Conners still refuses to admit it.  Now since Conners missed it, can not do surgery to fix it. Must wait.  Too risky for surgery today. Too much bleeding.
Now my new specialist has ordered me off my feet so bleeding does not get worse.
I am lost and hurt. My poor wife is so supportive, but it's taking its toll.
Worse than a nightmare...

[james1947]

kdb123

I am with you from all my hearth and wish you passing this bad time as soon as you can.
I always said that in my opinion the success of Xiaflex depends on the doctor capability, same as the horror stories we have on the forum.
I updated the doctors list with your report on Dr. Conners, at least other members will not do the Xiaflex with him.
Wish you recover soon and the new specialist will find a way to help you

James

[kdb123]

Thank you James.

[hope4all]

kdb123, I am heartbroken for you. There are no words, I'm glad your wife is there to comfort you.  Thank you for sharing your experience. I just wrote a post on another thread that said we are all basically still in the trial phase even though it is approved.

I know you are suffering right now, but when you begin to heal, will you consider contacting Auxilium or US Bioservices? The FDA? The more people that share their experiences, good or bad, with the FDA may help change the treatment.

Let us know how you are progressing.  
hope4all

[kdb123]

Thanks hope,
The situation gets crazier. Conners and his partner kecker are confident i do not have a fracture or puncture. Dr vanni a reconstruction specialist says he is pretty confident at this point that i do.
I am stuck in the middle.
I am actually thinking of finding another uro as well.
For now, vanni says total rest and kecker wants to compression wrap to make me a little more mobile.
Trying to take it one day at a time....
K

[kdb123]

I have also reported to fda.  Will also report to auxillium.

[Ive]

Dreadful news kdb123.

All best wishes from the UK.

[IhatePD]

kdb123 I am so sorry to hear what happened to you.  Please keep us posted on your progress.  Iam hoping for the best for you.

I went for my second round of Xiaflex injections last week.  My doctor - Dr. Metro in Norristown PA does not do the modeling.  He told me that after each round of injections on a Wednesday and Thursday not to model or do traction until 48 hrs. later on Saturday.  On my second round last week, I decided to do the traction - 4 hours each day starting with the first injection. Nothing too crazy just enough to keep it stretched.  I did not do the modeling when erect.  That gets me nervous. I got a little bruising this time around from the immediate traction but I think it is breaking up the plaque at a faster rate because of it.  I also had sex last Saturday - 9 days later instead of waiting 2 weeks.

I realize that it is not smart going against the doctors instructions but I do not feel that I am hurting myself with the traction and quite frankly I just couldn't wait on the sex part.  What happened to kdb123 will make me a little more cautious on the next two rounds.

So far, I am getting noticeably fuller where I had distal narrowing but not much reduction on the curve.  My girlfriend says that I feel thicker and still wants me to keep the curve as it "hits places no one has ever hit before."  I still want it straight, it freaks me out when I see it bent and having her on top or from behind require great care. I will take an erect picture before the next round and have the doctor give me the degrees remaining in the bend.  My starting point was 40 degrees.

[yyy]

I also had an incredible pain during the injection which seems not normal to me. Maybe he did inject into the corpora, I don't think I will continue for the moment

[hope4all]

Hi, kdb123. Man, sounds like a lot of CYA going on up there in Boston from your providers.

Thank you for reporting your experiences to the FDA and Auxilium! I will be doing the same once I'm done with the treatment.

IhatePD, it sounds like you and I are in the same boat when it comes to "going off label" with this treatment...within reason of course. I've done (light) traction immediately following my injections. I started that in my 2nd cycle of shots and continued with this 3rd cycle i'm currently in. After my 5th shot Wednesday morning I immediately noticed a hematoma which meant to me I was going to see some serious swelling and bruising pretty quickly. Sure enough, within hours it started, to the point that my doctor decided to delay the 2nd shot until next week after seeing the redness/bruising/swelling when I went today for the 2nd shot in this cycle.

My doctor doesn't do the modeling just like yours doesn't IhatePD, so the mild traction is a replacement for that. It's probably increased the bruising for me, but I'm fine with that FOR ME. I do not promote this for anyone else, it just feels right for me. My plaque is 6 years old and isn't getting any softer so my approach is to straighten it when it's softest. I'm very careful when I get nighttime erections not to go too far in the straightening exercises, for fear of rupture.

The way the in-office modeling is described in the REMS I would imagine it would cause serious discomfort while performing it and serious bruising afterwards. I can't imagine having someone model my penis in its current state without a sedative of some sort.  

[kdb123]

Hello all,

Here is an update that is quite graphic in one part. Do not read on if you are not prepared for a very difficult image:

So the major difference between dr Conners and dr Kacker at mens health boston and the penile reconstruction specialist dr vanni at lahey clinic is the following:

'WARNING'

When I had the horrific incident on 3/31 when my penis basically erupted after the 3rd round of modeling, when I was in emergency room dr Conners came into examine me.  Conners claims that while my wound was open he could feel and see inside and is very confident there is no rupture or of corpora or tunica. He stuck his finger inside to feel around. Dr. Vanni does not think this is the case. He thinks  i do have a fracture/rupture/hole or whatever you call it.
Since I do have some erection action which I try to keep down at least now, Conners and Kacker thinks this is further good evidence that there is no fracture.

Conners gave me the name of vannis partner to go see at Lahey. He is dr Bennett. He does the xiaflex shots for lahey.  Conners would like me to see him because he is familiar with xiaflex and vanni does not do the shots.  I hope to get an appt w him ASAP.
Also Conners gave me another Uro, dr munarriz at boston medical center to go see.



Obviously still need  rest and a lot of time. Still on roller coaster but these guys were confident. Let's see why the two new guys say  

[kdb123]

Great news for me today. MRI showed no holes or penile fracture. Now both uros agree!
At least surgery is off the table.
Now a long healing process which will keep me off my feet for awhile and then really taking it slowly.
All in all, I am feeling very lucky today. Thanks for listening.
K

[james1947]

Good news kdb
As we always are saying, the diagnosis MUST include an ultrasound, definitely MRI can show even more.

James  

[hope4all]

kdb, I'm relieved to hear this, it's great news! Once you're healed from this setback perhaps you should pass on the in-office modeling.   I wish you a very speedy recovery so you can get back on track!  Take care.
hope  

[Neverheardofthisb4]

Moderated your post (James) as you have posted exactly the same post on:
FORUM XIAFLEX RESULTS - Peyronies Society Forums
Double post is not allowed on the forum.

Summary: Procedure was reasonably free of pain;
penis looked like roasted hot dog for a week and the reaction to the injections is 95% better after 3 weeks. However, the curve did not budge. My diagnostic ultrasound showed substantial plaque within cavernosa as well as in the tunica.

[james1947]

Neverheardofthisb4

This is the only session Dr. Lue is planning?
Usual treatment is 4 sessions.

James

[Voglin]

Neverheardofthisb4, quite a few of our guys on the trial in the UK got negligible improvement or no change at all after round 1. All our doctors, and I have seen it on this forum too, say the best results come after cycle 3 and/or later.

[trouble with the curve]

Hello All,

Have had Peyronies Disease for about a year. Went to a local Doc who told me to take Vitamin E and maybe it would go away.
Decided to seek another doc and now I am getting ready for my first xiaflex shot next week. Have been reading everyone's entries and I must say I am a little nervous.

Planning on sharing my results here and what the doc has to say.  

[james1947]

trouble with the curve

Wish you good results
Don't forget to update your results at:
FORUM XIAFLEX RESULTS - Peyronies Society Forums

James

[trouble with the curve]

Hi Guys,

Finished 1st shot yesterday. Will post results over on results topic.

Everything seems to be moving very fast from 1st DR. visit when I heard of xiaflex. Less than a month and I am having treatment. Thought I read here earlier of a doc in Burbank Ca. USA who had a great deal of experience with the treatments.
Could someone provide his name?

Thanks much,
Trouble

[hope4all]

Hey trouble wtc, I've seen Dr Gelbard's name on these boards several times. He's in Burbank.  I'm not endorsing him, might be worth a search on this site to see who has mentioned him and what experiences they have had.  

[trouble with the curve]

Hope4all,

Thanks Brother.

TWC

[james1947]

johnlee

Thank you for posting on FORUM XIAFLEX RESULTS
What make you to think that:

It seemed I received distilled water instead of xiaflex in the 2nd cycle.

Did you told the doctor about that?

James

[johnlee57]

James,

I haven't had a chance to tell my doctor that the second cycle made no improvements. I will be seeing him in end of May and I will tell him.

Thanks.

[IhatePD]

I had my 4th round of Xiaflex shots yeaterday and the day before. My doctor told me that based upon new data, he wants me to use traction for one hour each evening that I got the shots as opposed to waiting 48 hours from the second shot.

I do not recommend that you do what I did but here is what I did.  I did traction for two hours both days as soon as I got home, about one hour after each injection.  Last night, the same day as my second shot I had sex with my girlfriend. Very slow and very careful, missionary position for about 15-20 minutes. When I say careful, I mean very careful on both our parts. No damage whatsoever.

Do not think I a recommending this, I am just reporting what I did.  I have always lived on the edge and I am very aware of where I am with Peyronies Disease.

After three rounds of the Xiaflex, I see some reduction in my dorsal curve but I have not measured it yet.  I go back to my doctor in six weeks for and induced erection and measurement using a protractor so I will have results then.  I definitly see thickening in the distal part of my penis which had narrowed from Peyronies Disease but I am not back to where I was.

My girlfriend says she can feel the increased thickness and she loves the dorsal curve as it hits her G spot.  I am still freaked out about the dorsal curve so I am determined to get rid of it.

[nemo]

Man, you are very literally flirting with disaster.  It's going to be hard to have sympathy for you if/when you have a corporal rupture.  It's your penis and your life, but to so willingly fly directly in the face of explicit directions from the manufacturer NOT to have sex while you're receiving the shots ... well, it's your life. I know you think you're being "careful," but I guarantee you, no one who ever broke their penis thought "I bet on this next stroke I'll break my penis."

Nemo

[IhatePD]

Nemo, I can't disagree with you and I don't recommend that anyone should do what I did.  I have held off since and will wait my full two weeks before having sex again.

Just because I got lucky this time doesn't mean I will be next time.

[TonyStark]

Hello Everyone,

   This is my first post but I've monitored this board for years. Three weeks ago I had my first round of Xiaflex and wanted to talk about my experience thus far. My curve was tough to measure because it was right at the glans, but I estimated around 30 degrees. A bigger issue for me was sensory loss due to the plaque covering the nerves in that general area; at least that is what I presumed. This caused a dull feeling in the area where I lost the throbbing sensation during erections and while it didn't affect urination it did lessen the sensation of urine flow. That being said the sensory loss was by far a bigger problem than the bending, but I wanted to resolve both.

Round 1
Day 1
I received two injections in the largest plaque. Most of the bruising came from the doctor squeezing the area to expose the plaque so the Xiaflex could be injected. He did wrap the area and told me to keep the bandages on for about 4 hours. This seemed to help reduce the swelling. Not too much discomfort at this point.

Day 3
Now I went in for the second set of injections. These were pretty rough. I was feeling the pain from the first round by now and the bruising was really starting to show. This time he injected the smaller plaque that was near the north end of the glans. This one was more difficult to inject because the plaque was small and very dense. Fortunately, the doctor has performed over 50 of these procedures and was able to inject the plaque without much problem. Which was a relief because just stretching out in a flaccid state was very painful at this point. Again, he wrapped it up and I went home. There was significant bruising when I removed the bandages this time. Swelling was also present but not too bad. Mostly black and blue over the whole shaft.

Day 5
Went back for the molding procedure this morning. By now I'm swollen and solid lack and blue. The head was the only section that resembled a normal color. However, it sounds like the typical experience from what I've read on this forum. Pain was not bad if I just left it alone but I needed to do the stretching which was painful.

3 weeks after first injection.

All of the bruising and swelling is gone. The bend is hardly noticeable. If I had to measure it I'd say less than 10 degrees. The area is fuller now when erect and resembles the shape it was prior to peyronies. The sensory loss has improved but is not fully recovered at this point. If I had to gauge it I'd say 50% restored. I suspect that's because there's still a small amount of plaque in the area. I noticed the improved sensation during urination and during erections. I've refrained from intercourse even though I'm past the 2 week restriction. This is mainly because I still have some soreness after erections and I don't want to do anything rough yet.

I'm debating on whether or not I should go in for another round. I think dissolving the rest of the plaque might restore a little more sensation. As for the curve I don't expect to see much difference. It's reduced enough now where I'd have to point it out to a woman and even then they probably wouldn't notice, or care. Much of my decision will depend on when the post erection soreness resolves. The erections are fine but the area is tender for most of the day if I maintain an erection for several minutes. I have a follow up with the doctor in a couple weeks. I'll see how I feel by then.


I hope you find this information helpful.
My physician is Dr. Rafael Carrion. I'd highly recommend him for anyone in the Tampa Bay area.

[pointedly]

I have not posted any updates in this thread since my 8th injection from February of this year.  I went back to Mayo about 6 weeks after the final injection for measurements.  With erection, I was measured at 45 degrees after starting with 69 degrees.  My pain has been lessened in both a flaccid and erect state, and my hourglass indentation is completely gone.

I was approved for more injections by my insurance company, so I went back in June for #9 & 10.  I just received injections 11 and 12 this week and was met with quite a surprise.  I am not sure if any of you currently receiving injections are having this new twist in the procedure or not.

The PA told me prior to #11 on Wednesday that they have begun to induce erection prior to the Xiaflex injection for those who have plaque 2-3 cm or more from the shaft/glans intersection.  Their reasoning is that instead of making an educated guess about where to inject, the erection allows a more precise location to inject the Xiaflex.  Here are two observations that I have from the last two injections.

OBSERVATION #1 - I had SIGNIFICANTLY less swelling from these two shots than from any of the previous series or individual injections.  My guess, if I had to make one, is that there is less "collateral" damage to capillaries, veins, tissue, since the majority of the drug is going into the plaque.

OBSERVATION #2 - I have had more than 50 total injections into my penis between Verapimil and Xiaflex.  These two were EASILY the most painful.  I have two theories on this - the erection caused the plaque to be more sensitive OR the injections were more "on target" into the sensitive plaque.

If you read my post in this thread from Feb 15, you can read the procedure that I use post-injection for modeling and for traction.  After injection #12 on Thursday, the traction device kept slipping off on the ride home.  Frustrated, I grabbed the head of my penis with my thumb and index finger and pulled straight for 30 seconds.  I would then let it rest for 30 seconds and then use a different technique for the next 30 seconds.  On this second pull, I used my thumb and the side of my middle finger, and twisted the head down at about 90 degrees, while maintaining a "pull".  The middle finger acted as a fulcrum under the location of my plaque.

After doing this for about 10 minutes, I started having a sharp, precise pain in the location of the plaque while I was doing the "fulcrum pull".  I kept the same pressure on, fighting the urge to stop, and felt a slight increase to the angle of the head.  I believe that this was the plaque tearing.

I am now 2 days post-injection #12 and have been applying traction twice a day for an hour minimum, plus doing the same pulling techniques 3-4 times per day, with 4-6 of each pull.  I am very anxious for the swelling to go down so that I can see if there is any further reduction of curvature.

Pointedly

PS - I think that this is a great forum for us to share ideas and experiences that have to do with the treatment of this disease.  I have said before that those of us who are getting Xiaflex injections are essentially part of an extended clinical trial.  We also are blessed to have moderators who are both helpful and extremely patient.  I would make a poor moderator and here is why:

I have taken the time to help others as they have helped me.  I am typing away tonight while my wife asks me if I am "posting, or writing a book."  I felt as though I have wasted my time with someone who I directly helped, who also felt it necessary to point out more than once that he ignored the Xiaflex protocols and had intercourse almost immediately, post injection.  Info like that is neither instructive or necessary.  I have been in many locker rooms in both high school and college sports and was never impressed by what amounts to "locker room talk".  I am less impressed as an adult...

[Stabler]

Pointedly,

I am not so sure that you would make a poor moderator , the fact is I think we all moderators and members like have days of feeling frustrated or defeated when trying to help or offering advice to those who simply wont take it. That being said, every time we come in this forum and every time we offer our help, there is always going to be someone it DOES help, maybe not that day that minute but someone will come along and need the advice you gave. Those of you who have the experiences with the treatments and the long standing diagnosis of Peyronies are the best moderators because you can give first hand advice from experience, its not a moderators job to MAKE someone take the advice, its only our job to be here and offer what we can when we can.

So don't be so quick to count yourself out.

Hugs Mamma