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Author Topic: Complications from Xiaflex – instability, pain, and worsened curvature  (Read 545 times)

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JohnS

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I developed buckling—structural instability—at the site of the Xiaflex injection after my first (and only) injection (in October), and I still have that buckling 3 months later. (I had—and have—leftward and upward curvature; the injection was made into the left side of the shaft, about a 1/3 of the way from the base).

I was examined by a new doctor earlier this week, and he said that the buckling makes it dangerous for me to have sex—that I risk further injury—and that I will need to have surgery (he indicated the surgery would be a “modified Nesbit” procedure, along with a graft on the other side, to fill in some narrowing on that side). I didn’t have any buckling BEFORE the Xiaflex injection, and had been able to have sex without difficulty. He said that I should not have been injected with Xiaflex, because my scar tissue is very old (20 years old), and Xiaflex is not appropriate in that case.


* Has anyone else experienced buckling after Xiaflex?

* And has anyone had Xiaflex injected into scar tissue that they had for a long time?


I am hoping that the buckling might get a bit better over time, but the new doctor didn’t think it would.

(I should say that I followed the post-Xiaflex-injection protocol, I have been using Restorex, and I have not had sex since before the injection—so the buckling was not caused by post-Xiaflex blunt trauma.)


Here is my history with Peyronie’s disease, with Xiaflex, and with Peyronie’s doctors:

I was diagnosed with Peyronie’s 20 years ago, at age 24. I didn’t seek treatment until October 2020.

In October I was injected with Xiaflex. I experienced the following side effects in the first week after the injection:

(1) oozing blood from the injection site for 5 days,
(2) significant bruising,
(3) pain,
(4) contraction of the penile tissue,
(5) worsened leftward curvature (from 30 degrees to 45 degrees), and, most concerning,
(6) buckling/collapsing to the left at the injection site.

The bruising went away after a week, but the pain and the buckling have remained.

Two months later (in December), I saw a second doctor. Doctor #2 examined me and did an ultrasound on the penis first in the flaccid state and then later in the erect state. He said that I don’t have (and presumably didn’t have) any plaque where the Xiaflex was injected, and that it was wrong of Doctor #1 to have given me the injection. He said that I do have narrowing and indentation on the left side of the shaft, but not plaque. He recommended a series of Verapamil injections, because he said that these were what worked best for narrowing and indentation.

I wasn’t sure whether to go ahead with the Verapamil injections, so I consulted a 3rd doctor. Doctor #3 did an ultrasound on the flaccid penis, and he also said I didn’t have plaque on the left side, where the Xiaflex had been injected. However, he said that Verapamil wouldn’t do any good, and that, for the pain that I was still experiencing, I should have a Dexamethasone (steroid) shot. I was reluctant to have that, but he said that if I waited, it could be harder to treat the pain later. So he gave me the shot.

Finally, yesterday I went to one more Peyronie’s specialist (Doctor #4). This doctor (who is the one that I mentioned at the beginning of this post had told me I needed surgery) also said that I should not have been given Xiaflex, but his reason was totally different: he said that I DO in fact have scar tissue on the left side of the shaft—and he showed me where it is (though he didn’t do an ultrasound)—and he said it is because the scar tissue is so OLD that I shouldn’t have been given Xiaflex. (He also said that the upward curvature is due to the same scar tissue as the leftward curvature, that they are not separate). He said that I will need surgery, because the leftward buckling—which, again, I didn’t have before the Xiaflex injection—puts me at risk of further injury if I have sex.


My conclusion about what happened with the Xiaflex injection is the following:

I had been told by a different doctor that Peyronie’s scar tissue softens over many years, and this information—combined with the fact that I know that Xiaflex itself softens the scar tissue, and combined with what Doctor #4 told me—leads me to think that the (very old) scar tissue running along the left side of the shaft was very soft (the opposite of hard plaque) at the time of the injection, and that the Xiaflex further weakened/softened the particular area of scar tissue that is at the injection site itself. I think, then, that it is this further softening from the Xiaflex that created the buckling, the structural instability, at the injection site. My body has not been able to “fill in” the area that got weakened by the Xiaflex injection, so as a result, the penis collapses (to the left) at that site.

* Does this seem like a reasonable conclusion to draw?

(As to why the left-lateral scar tissue that Doctor #4 identified didn’t show up on the ultrasounds done by Doctors #2 and #3, I’m guessing that if the scar tissue is extremely soft, it doesn’t show up as plaque on an ultrasound.)


The 4 attached photos are:

(1) split-screen photo showing before Xiaflex on the left [about 30 degrees leftward curve] and 2 months after Xiaflex on the right [about 45 degrees curve]

(2) closeup photo of the area of buckling and narrowing, 3 months after Xiaflex

(3) photo from the left side, 3 months after Xiaflex

(4) photo of flaccid from 2 days after Xiaflex


Thanks!

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JohnS

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Re: Complications from Xiaflex – instability, pain, and worsened curvature
« Reply #1 on: January 27, 2021, 03:54:16 AM »


I meant to attach these photos as JPG files, not as PDFs. Sorry about that.
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Whyisthishappening

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Re: Complications from Xiaflex – instability, pain, and worsened curvature
« Reply #2 on: January 27, 2021, 04:58:39 AM »

try shearwave elastography for better diagnosis
 buckling effect might diminish with time why don't you try dmso
 also is it ok to have surgery after a recent injure i mean you could still be in active phase?
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alc ,vitamin e, propolis,pde5,NAC,nsaids,olive oil massage,nsaids,aspirin,essential oils cockteils,keto,IF,green tea,coffee

Bud luck

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Re: Complications from Xiaflex – instability, pain, and worsened curvature
« Reply #3 on: January 27, 2021, 12:01:45 PM »

I have exactly the same area injury, your penis looks exactly like mine, in my case was due to a Trimix injection. Do you have buckling when is erected?, my penis doesn't buckle when is erected. Do you have problems with erections?. Before do the Nesbit surgery, read about it, is because I read some men reporting worst erections after the surgery. I still have sex with the girlfriend, I have to take Cialis.
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My first symptoms started 18 months ago
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My Erectile Dysfunction is getting worse
I have a girlfriend

NeoV

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Re: Complications from Xiaflex – instability, pain, and worsened curvature
« Reply #4 on: January 27, 2021, 06:33:00 PM »

Are you doing traction afterward? Dr. Trost seems to think that this is essential (by hand).

I don't know if I trust that new specialist of yours, seems kind of odd to me to say you would need surgery.

Bud luck

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Re: Complications from Xiaflex – instability, pain, and worsened curvature
« Reply #5 on: January 27, 2021, 09:34:56 PM »

There is a surgery for our problem, is the extra tunical grafting, they say is safer than the incision and excision used before.
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My first symptoms started 18 months ago
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My Erectile Dysfunction is getting worse
I have a girlfriend

GaussRifle

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Re: Complications from Xiaflex – instability, pain, and worsened curvature
« Reply #6 on: January 28, 2021, 06:16:09 AM »

First of all, continue traction. It is possible that what you describe has happened but human bodies are very adaptive. Keep doing traction for atleast 6 months before you go for surgery of any sort. Secondly, if you get grafting for narrowing or buckling, consider the newer extra tunica graft like bud luck mentions. Satisfaction rates are high.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

Kobegianna

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I’m a little confused. You were diagnosed with Peyronie’s 20 years ago and it seems like your before picutre albeit alittle curved to the left seems pretty good. You went 20 years without seeking treatment. How come now you decided to try xiaflex? Were you in pain? Did it start curving more? Becaus you penis looked fully function and barely curving to the left
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections
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