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Author Topic: One Knight's Xiaflex journey  (Read 12409 times)

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james1947

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Re: One Knight's Xiaflex journey
« Reply #50 on: December 21, 2014, 04:06:43 AM »

According to Leriche and others that followed him using a scalp and not a needle, the success rate was around 70%.
In my opinion, the Xiaflex will brake more easy small shreds of plaque that a whole one.
So wish you very good outcome this time Knight :)

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Knight

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Re: One Knight's Xiaflex journey
« Reply #51 on: December 21, 2014, 10:59:46 PM »

Yes James, I just hope it doesn't make matters worse. But like I said I have nothing to lose, much to gain and I have to trust my doctor.

Just a quick update. My bruising did continue to increase but it still is nothing like round 1. I've been a little sore since Friday but it hasn't prevented me from being able to do anything. Tonight's the itching is strarting to set in so I must be healing. I'm still too swollen to be able to tell if the plaque has changed but my flaccid hang still curves to the left just as before. Thankfully I haven't had a true erection since the shots so I don't know what my true status is. I continue to stretch consistently despite the slight discomfort and I did traction again last night for about 3 hours. In fact that's what I'm about to do again right now.

Good night my friends.
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IhatePD

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Re: One Knight's Xiaflex journey
« Reply #52 on: December 22, 2014, 05:34:37 PM »

Knight,

How are you wrapping your penis?  Are you using gauze?
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Knight

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Re: One Knight's Xiaflex journey
« Reply #53 on: December 27, 2014, 07:17:43 PM »

Both times the doctor wrapped it and yes he did use gauze. Once I took his dressing off I never put it back on.

I'm still sore, much more so than round 1, but I think it is because of the trauma of the needle breaking up the plaque and all the traction and stretching I have been doing and not really related to the Xiaflex.

No noticeable changes in shape or comfort level. Very disappointed but still moving forward and searching for hope.
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Mending the Bend

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Re: One Knight's Xiaflex journey
« Reply #54 on: December 27, 2014, 10:01:36 PM »

Knight - in addition to traction and directional stretching (away from your curve), are you doing erection modeling? I caution you to be careful when doing this, but I have seen increased benefit from stimulating to a full erection and then straightening out the curve in the penis, trying to hold it straight for 15-30 seconds (or as long as you can keep the erection). Then repeat. I've been doing this once a day at least. In fact, I've reduced the amount of traction and VED to only a few times per week, and I've been focusing more on multiple daily sessions of manual stretching.


Important Caveats:
The Auxilium-recommended protocol calls only for doing this with spontaneous erections. So, please consider the risks carefully.  Also be prepared for this erection modeling to cause moderate pain. The goal is to stretch the plaque directionally during a full erection, but there is a chance that it could lead to a penile fracture if your tunica is weakened. So, if you do it, maybe wait a week post-Xiaflex.

Good luck.
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Knight

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Re: One Knight's Xiaflex journey
« Reply #55 on: January 01, 2015, 03:44:22 PM »

Knight - in addition to traction and directional stretching (away from your curve), are you doing erection modeling?

Yes, I do believe I am completing this protocol Mending. It is now 2 weeks after the second round of injections I am still noticably sore, but again I think it has as much to do with stretching and traction as it does with the Xiaflex. Spontaneous erections have not been frequent, but I think that is due to the discomfort.

My stretching and traction have become so consistent and aggressive that I worry I might be doing too much. But Dr. Trost made it very clear that he wanted me doing at least ten 30 second stretches every day and 1 to 3 hours of traction. The biggest problem has been in the area where the comfort strap holds the penis in the device. I have to strap it down so firmly it ends up sore 24/7 to the point that even grabbing it for a stretch is painfull in that specific area. I still have faint bruising in the shaft and I can't deceiver if it is Xiaflex related or if I am actually bruising myself with the tightness of the comfort strap. This is also very close to the 3 entry sites of the needle used to chip and break up the calcified plaque so this bruising and irritation could be related to that as well. Perhaps it is all of the above, but the point is there is some pain and I worry about future Peyronies complications. None the less to do nothing is not an acceptable approach to me so we will proceed with everything possible. I will fight this condition all the way to an implant if I have too.

I think I do see some improvement in shape but it's limited and honestly hard to tell for sure. With 2 curves and a twist it's not easy to measure things so I left that up to the doctors and they haven't rechecked those numbers since we began this Xiaflex journey. The hourglass and dents are still prevalent and hinging is still an issue.

My wife and I enjoyed bringing in the New Year last night with lots of wonderful foreplay and some very careful intercourse last night at the 13 day post injection mark. A bit premature on the timing but we were extremely careful so I don't think I set myself back. My doctor wants me to wait a month post injection but Auxillium says 2 weeks.

How long are others waiting before engaging in sexual activity?
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Rothko

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Re: One Knight's Xiaflex journey
« Reply #56 on: January 02, 2015, 11:04:12 PM »

Keep the faith Knight.
In terms of implants, we are at least lucky they are an option.  I have bad Erectile Dysfunction with this Peyronies, which you don't.  If the Xiaflex doesn't help with the Erectile Dysfunction, I guess I'm headed for implants eventually too.  In my view, I have no problem with getting them.  I figure I have a good 15 years left on my sex life clock, so what's the big deal.  I see that many men would NEVER consider them, but for me, I see them as a way to maintain spontaneity and dignity.

I had a monogamous relationship for 9 years, which ended six years ago.  Two years after the breakup, I went into a deep depression (was hospitalized), then another two years of continued suffering.  The Peyronies started somewhere in that time, with worsening Erectile Dysfunction (which I mistakenly attributed to Depression and heavy doses of meds).  When I saw the deformity start last April, I knew it wasn't 'in my head', but freaked out even more when I learned about how insidious this condition is.  So here I am now, still out of the game and feeling very low with a nonfunctioning, diseased penis.  I will be patient and grateful to have the Xiaflex treatment.  If the treatment with pills don't work, I will pursue implants.  I have no intention of using injections to get an erection, as my plaque is spread around the base of my shaft, where the injections would be administered, so I'm not taking any more chances with further scarring.  For me, it would be best to pursue implants and keep some spontaneity for sex.  I am lucky that I can pay for them, as I have no doubt my insurance company will find any and every reason to refuse me.

You are lucky you can still have sex, and have a committed partner.  Plus, the fact that you don't have bad Erectile Dysfunction problems will probably suffice with the Xiaflex treatments.  Best of luck and keep us posted on your third round.  I go in for my first shot in a week and a half and will post any progress.  Thanks for your support.
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james1947

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Re: One Knight's Xiaflex journey
« Reply #57 on: January 03, 2015, 03:15:46 AM »

Rothko

Good luck with the Xiaflex and yes, the implant is a viable option if don't have any other choice. :)

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Knight

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Re: One Knight's Xiaflex journey
« Reply #58 on: January 03, 2015, 05:43:06 PM »

Rothko, I was fully prepared to go the grafting and implant route when I started the Xiaflex treatment. My doctor convinced me to try Xiaflex first due to how invasive those surgeries tend to be. He mentioned the loss if sensitivity as being a potential and likely side effect. I'm holding that card in my hand for now but if Xiaflex isn't successful for me I will play it.
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Knight

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Re: One Knight's Xiaflex journey
« Reply #59 on: January 11, 2015, 07:15:41 PM »

This morning I completed a VED session more out of curiosity than anything. I just wanted to see how things looked and to see if it would bother me or give me any discomfort. In the past, for some reason, the VED has caused me pain in the area of my most calcified plaque. This session went very well and I am cautiously optimistic that I may be experiencing a slight correction in my curve(s). My penis looks a bit straighter, thicker and even slightly longer than it maybe ever has. Until now I didn't honestly believe these traction devices could really actually make us larger, and that was never my main focus or intent, but It looks like I was wrong. That being said the length and girth gains are not significant, and I don't know if they are permanent, but they are absolutely noticeable.  As for the curve(s) they are still there but things have changed slightly for the better. In the past when inducing a full erection with the VED  the bend in my penis would cause my erection to run firmly into the left side of the vacuum tube. Not so this time! There is still a curve in there, and it still touches the side of the tube, but it has lessened.

I left all the measuring and stats to the doctors so I don't have any way of determining what percentage my improvement might be but it is good to see change. The numbers don't really matter to me, it's more about functionality. I still have a nasty case of Peyronies and I'm still a bit uncomfortable from time to time but this gives me hope.

Maybe rounds 3 and 4 will produce more positive changes. I think traction and stretching have been very key components in these recent developments. If it continues to go well I'm also going to include more VED work in my physical therapy.

Never give up and never quit fighting back!

Knight
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james1947

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Re: One Knight's Xiaflex journey
« Reply #60 on: January 12, 2015, 06:09:35 AM »

Knight

Your post is encouraging for all of us that have calcified plaques. :)
In my opinion, the 3th and 4th session session will help more. I am waiting fro your next session reports.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Knight

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Re: One Knight's Xiaflex journey
« Reply #61 on: January 12, 2015, 09:08:43 PM »

I sure hope so James.

I'm a bit more discouraged today. I hit traction hard last night and the VED again this morning. Things looked about the same as the day before but at the end of my VED session I induced a full natural erection for examination purposes and I'm still very, very bent with rather severe narrowing and slightly twisted. I'm also a bit sore today so either the traction was to severe or the VED may be flaring me back up again or both.

It's a tough road my friend.
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james1947

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Re: One Knight's Xiaflex journey
« Reply #62 on: January 13, 2015, 12:40:34 AM »

I know Knight that it is a tough road. :)
I added traction some 3 weeks ago to my treatment with the hope it will help.
Just 5 days ago while making traction with the silicon cap and rubber advised by MattFoley in the past, the silicon cup caused separation of the skin from the glans. The separation is close to the urethrae, filled with liquid, now the liquid gone and I am treating with Betadin and antibiotic cream. Very difficult place to heal and I am out of any sexual activity, don't know for how long. :(

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Knight

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Re: One Knight's Xiaflex journey
« Reply #63 on: January 13, 2015, 08:13:55 AM »

That sounds painful and frustrating James. I'm very sorry and I hope you recover quickly and completely.
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hope4all

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Re: One Knight's Xiaflex journey
« Reply #64 on: January 14, 2015, 07:28:21 PM »

yes, that sounds terrible, sorry to hear that.  Thanks for letting us know, I'll be on the look out when I start my traction in a couple weeks. 
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Knight

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Re: One Knight's Xiaflex journey
« Reply #65 on: January 19, 2015, 06:30:04 PM »

I have taken a couple days off from doing traction due to soreness and more bruising. This last time I had significant bruising around the shaft just under the head where I strap down on it to hold it in place and also underneath at the base of my penis into the scrotum which I assume was caused by the base of the traction device pushing into my body. The last time I wore the device I Stretched my penis as far as I could stand it and then pointing it down under a pair of sweat pants so I could multi task and get some guitar playing in without my family knowing what was going on in my pants. The device actually fell off when I bent over to pick something up when the added resistance pulled my penis right out of the unit. I've also been using the VED again so some of this bruising could have been caused by that too, but I suspect traction. I've never really been a easy bruiser but I sure have been getting bruised up allot lately battling this condition.

There is no real point to this post, I'm just noting more possible set backs and side effects with the process. It's really hard to judge how much is enough and how much is too much when using theses traction devices. It does make me wonder what I will look like long term after all this self afflicted abuse in the name of recovery. But I'm not giving up and I will continue to follow orders and stretch as much as I can.
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Rothko

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Re: One Knight's Xiaflex journey
« Reply #66 on: January 29, 2015, 08:07:45 PM »

Knight,
I had a similar experience.  While conducting a training with approx. 40 participants at work, my traction device slipped off and came out of the bottom of my pant leg.  I swiftly scooped it up.  Most didn't notice, but I was mortified.  This condition strips away at our dignity in many ways.  Nonetheless, all of the ups and downs will hopefully level off.  I believe the Xiaflex may not resolve my condition, but may pave the way for a better outcome if I am to eventually get implants. Even still, getting implants brings other fears;  Will I qualify to get them (my doppler shows good blood flow, yet I can't achieve an erection)?; Will the Peyronies and surgery leave me with so little size left that I won't even want to engage in sex in the future?  I just want to escape this problem.  I have pleasant dreams, then wake up into this nightmare again and again. 
A man must be superhuman to survive this living hell.
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KAC

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Re: One Knight's Xiaflex journey
« Reply #67 on: January 30, 2015, 10:34:15 PM »

Knight, do you ever wonder if you're pushing (or in this case pulling) it too hard.  I get nervous reading some of your comments.  I'm taking a break from traction, partly just to feel normal for a bit.  It's been nice.  But I also felt concerned at the numb cold feeling in my glans when I was in traction.  And I wasn't even stretching it very much.  It just seems like those nerve endings are pretty precious (certainly way more than length and to a certain extent more than angle). This is more my own question than me trying to caution you.  But I think if I go back to traction I'm going to go the very slow route--taking a lot of time before applying more tension, and taking lots of breaks.
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