What to expect from Xiaflex

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agent0

what im really hoping for xiaflex is too get rid of scar tissue allowing my nerves to communicate so i wont be numb anymore. cross your finger! and pray to god

james1947

To cross fingers can't make any Peyronie's like damage!

Regarding pray to God, I believe always helping :)
To make any of the treatments for Peyronie's it may help also.
My father was saying:
Help yourself and God will help you!

James
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

agent0

indeed james1947, i believe xiaflex will help us all.

i just hope that i dismantles and disintegrates the scar tissue that plaguing us all.

agent0

so i made an appointment with my urologist on the 20th, and im going to ask him if he thinks i have sepital peyronies, if xiaflex will give me my nerves and sensitivity back, and when its going to come out? and how much itl cost.

and il probably get another prescription of pentox.

james1947

agent0

Keep updating us after visiting the uro.
All of us are interesting in any peace of information from a specialist.
How are you pleased in general with his knowledge and attitude?

James
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

agent0

so i found another site, about peyronies causing numbness from scar tissue.

http://www.ncbi.nlm.nih.gov/pubmed/1668968
http://radiopaedia.org/articles/peyronies-disease

1st one is really old from 1991 though

my urologist is alright hes been with me since the injury. he knows about xiaflex and he knowsi have scar tissue and numbness.

agent0

so got good good news yesterday at the urologist office.  ;D

i dont have any nerve damage

the urologist said the reason that my scar tissue isnt showing on any of my test is because its too small to show, but he can feel the scar tissue and see that its really deep. he said its possible that the scar tissue is the cause of my numbness. but since the scar tissue is so deep the xiaflex injection could cause serious complications, but its a risk im willing to take in order to feel again  ;D

james1947

agent0

Good news indeed.
Are you doing some preventive treatment in mean time not to let the disease to progress until the Xiaflex will be available?
Like PAV cocktail and VED?

James
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

agent0

nah the scar tissue is pretty stable. its been 6 years already so there wont be anymore progression of the disease.

at the moment i just need to stay sane and wait for xiaflex.

agent0

do you guys think xiaflex will work for really deep scar tissue? i asked my doc if the scar tissue maybe septal and he said "it could be".

bummedout

hope so, part of one of my plaques is deep within me
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agent0

does anyone else have decreased sperm volume because of peyronies? before peyronies my semen volume was so much and i used to shoot like crazy. now i barely shoot at all and my semen volume is so little

agent0

is this because plaque is pushing in the urethra?

james1947

agent0

As I have answered your PM my private opinion:
Your doc answer "it could be" is same as I will answer "could be life on the Mars".
Doctors answers should be more precise and with good explanation why they think so or so.
He can check if the scar tissue is septal.

Regarding
Quotei used to shoot like crazy
Peyronie's effected me also. Regarding semen quantity, I didn't observe difference.
I don't know your age, but age is also a factor, when I was younger (now I am 64)
Quotei used to shoot like crazy
, then the distance decrease during the years.

Regarding treatment, even your scar tissue is stable, some treatment may help. You never know how or when it will flare up again. This is Peyronie's.

James
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

agent0

wow i really hope xiaflex will give me my sensation back, im so sick of being numb.


so if xiaflex destroys plaque and collagen and scar tissue is made of collagen then it should work right?

Ben

At first my only symptom was numbness and the distal segment of penis which seemed "dead". Then came the plaque, the curve, Erectile Dysfunction, etc...

Before the trauma, I could have a hard on just rubbing my penis, without any mental or visual stimulation. After the trauma I had to be really aroused to get some engorgement.

I too hardly cope with numbness. Maybe you can try traction, it can be useful for you. As for Xiaflex no doc or patient can tell how it will work for you, the only way is to try it and see what will be happening.

agent0

Quote from: Ben on May 26, 2012, 02:26:00 PM
At first my only symptom was numbness and the distal segment of penis which seemed "dead". Then came the plaque, the curve, Erectile Dysfunction, etc...

Before the trauma, I could have a hard on just rubbing my penis, without any mental or visual stimulation. After the trauma I had to be really aroused to get some engorgement.

I too hardly cope with numbness. Maybe you can try traction, it can be useful for you. As for Xiaflex no doc or patient can tell how it will work for you, the only way is to try it and see what will be happening.



yeah thats exactly how i feel right now like a numb, disconnected penis. yeah we are the same ben. i cant take this numbness i try to be optimistic about xiaflex but then i think to myself that iv been numb for 6 years... my family tries to help me and tell me that xiaflex will give me my nerves back but they actually dont know either. it helps to cope though, till xiaflex comes out. it feels like i have a fighting chance. i need xiaflex to give me my nerves back. i cant be numb anymore.

Ben

Agent0 so like me you do not have Peyronie disease which is scar tissue on top of corpus cavernosae, but a closed fracture of the penis. Most of the time a penile fracture is really visible with a huge bruising, but sometimes, there is no blood collection. But the sequel of thoses untreated fractures are the same.

I was wondering for months if implant would be ok for me, but one thing surgeon don't tell you is that your body will fight against the implant (a foreign body) surrounding it by a lot of scar tissue. The second implantation, if possible, is really tricky due to a lot of scarring. Even the mecanical pump seems affected since scar tissue surrounds it because as the tubes it is perceived by the body as a foreign thing.

I realy hope xiaflex can help all of us, but I think it will be better for true peyronie than for penile fibrosis. But anyway we'll try, we don't have so much to lose.
Best regards from France - benoƮt

james1947

Ben

I don't have yet implant but from what I read on the forum and other Internet sources they are living the implat half inflated after the surgery not to let the scar tissues to shrink back the penis.
They are also giving a regime of exercising to  prevent the formation of the scar tissues.
Also the constant usage don't let the scar tissues to be rigid.

I hope someone with implant will jump in and will say something from his experience.

James
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

agent0

hmm i dunno ben from the mri and doppler ultrasound my uro said there is no visible sign i had a penile fracture, but sometimes i dunno because i remember at the time of the injury i had a really sharp pain and heard a crack. i dont know anymore..

i think an implant is out of the question for me. even though if i get a implant that dosent mean il be able to feel again. i can get erections, but i cant hold them sometimes because i just cant feel flaccid or hard.

james1947

Agent0

Your doctor can see some plaque in the MRI and ultrasound? Maybe the fracture is not visible but you may have a scar tissue in this place.
If the doctor can't see the scar tissue, where he will inject the Xiaflex?

Regarding numbness, I still have but just mild. I think the Pentox, low dose Cialis and VED solved my numbness partially.

James
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

agent0

Quote from: james1947 on May 30, 2012, 03:52:57 AM
Agent0

Your doctor can see some plaque in the MRI and ultrasound? Maybe the fracture is not visible but you may have a scar tissue in this place.
If the doctor can't see the scar tissue, where he will inject the Xiaflex?

Regarding numbness, I still have but just mild. I think the Pentox, low dose Cialis and VED solved my numbness partially.

James


no my doctor said he cant see plaque in the ultrasound or mri because the scar tissue is too small, but he said he can feel it and its real deep. if i had a fracture regardless or not i have scar tissue there, but according to the test it says "there is no sign of a penile fracture". he can feel the scar tissue so im guessing he can inject the xiaflex there.

yeah my numbness is pretty bad i pretty much cant feel anything there on the underside. im hoping the xiaflex will cure me of this numbness. its hard to focus on anything in life when your penis feels dead all the time and its really numb and uncomfortable.

Mathias

Has anyone of you had already any contact with XIAFLEX and can give us his experience with the treatment?

Luciano

Quote from: Mathias on June 04, 2012, 12:14:29 PM
Has anyone of you had already any contact with XIAFLEX and can give us his experience with the treatment?
well in this topic the people that posted were part of the trial. go back a page or 2 and you can read their experiences.
http://www.peyroniesforum.net/index.php/topic,1458.0.html

Luc

peter123

So much nonsense in this thread. They need a placebo group bc the needling might cause improvements on its own. And similar results were optained with other deformities like central or hourgkassijg in later trials.its not a conspiracy
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.