Xiaflex - Do I or don’t I?

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JimLe96

I'm fortunately in the position where I can undergo Xiaflex at London Andrology but I'm concerned of the risks involved and that it maybe a total waste of money as I will have to pay this personally.

Any advice as whether I should go ahead with it?

Age: 24
Congenital curvature.
Noticeable band/nodule about 1/4 of the way up the shaft - diagnosed as chordee
Symptoms: curvature (35-40 degrees)

Frank55

Jim - have you already had a penile ultrasound? If so, has a doctor at London Andrology reviewed the results and discussed them with you?
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

JimLe96

Not yet, but I've been to UCLH and they recommended VED as the NHS does not offer xiaflex.  
Age: 24
Congenital curvature.
Noticeable band/nodule about 1/4 of the way up the shaft - diagnosed as chordee
Symptoms: curvature (35-40 degrees)

Pfract

If you say you have a mild curvature, why not try the ved first and see row it goes?  

Godisreal

Why take such a risk when there's traction and VED available?
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

JimLe96

Is it really that big of a risk? I have been using a VED but feel like there is no or very little improvement. I've been to UCLH and spoke with Dr. Christopher Nim who recommended the SomaErect. As the NHS doesn't offer Xiaflex I feel like I'm wasting my time going to see him tbh
Age: 24
Congenital curvature.
Noticeable band/nodule about 1/4 of the way up the shaft - diagnosed as chordee
Symptoms: curvature (35-40 degrees)

TonySa

Jim, at 30 degrees you are right at the cut off for xiaflex.  I believe the studies show improvement, but not 100%. if you can afford it just make sure the doc is well qualified and does the Injections regularly.  I believe the risk is when you have an inexperienced doc doing the injections.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

jan.schaller1958

Quote from: TonySa on April 02, 2020, 02:17:45 PM
Jim, at 30 degrees you are right at the cut off for xiaflex.  I believe the studies show improvement, but not 100%. if you can afford it just make sure the doc is well qualified and does the u he ruins regularly.  I believe the risk is when you have an inexperienced doc doing the injections.

I got referred to a Kaiser urologist (my US health plan is called Kaiser Permanente- a bit like the NHS, but they cover Xiaflex.   They should, this isn't cosmetic surgery! Peyroines is a disease for Christ's sake), in San Francisco. They only have 2 urologic surgeons licensed to do Xiaflex injections in this area) and he told me 30-45 degree angles are optimal for Xiaflex effectiveness, with traction. Have to wait till May or June to start unfortunately. I didn't get a protractor out to measure the angle but it's between 30 and 45 degrees, not more, not less.  
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TonySa

Def impt to add traction when getting xiaflex to maximize benefits!
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

jan.schaller1958

Quote from: TonySa on April 04, 2020, 12:04:08 AM
Def impt to add traction when getting xiaflex to maximize benefits!
Thanks Tony. Dr. Lue told me after injecting Xiaflex it was like pizza dough. (I assume he's referring to the plaque.) You have to stretch it out to make a pizza. Makes sense, it's just remodeling the plaque. Yeah, Dr. Lue is hilarious.  
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JimLe96

Thanks guys. I have a VED so will that suffice or does it have to be traction?  
Age: 24
Congenital curvature.
Noticeable band/nodule about 1/4 of the way up the shaft - diagnosed as chordee
Symptoms: curvature (35-40 degrees)

TonySa

Might help, but traction has demonstrated better outcomes than xiaflex alone.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

peter123

Quote from: jan.schaller1958 on April 03, 2020, 12:40:21 AM
I got referred to a Kaiser urologist (my US health plan is called Kaiser Permanente- a bit like the NHS, but they cover Xiaflex.   They should, this isn't cosmetic surgery! Peyroines is a disease for Christ's sake), in San Francisco. They only have 2 urologic surgeons licensed to do Xiaflex injections in this area) and he told me 30-45 degree angles are optimal for Xiaflex effectiveness, with traction. Have to wait till May or June to start unfortunately. I didn't get a protractor out to measure the angle but it's between 30 and 45 degrees, not more, not less.


hey man do you know any good Peyronies Disease doctors in Germany? most urologists seem to not know very much about it
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.

JimLe96

Thanks Tony. I will probably arrange a consultation with Dr Raheem at UCLH and see what he has to say.
Age: 24
Congenital curvature.
Noticeable band/nodule about 1/4 of the way up the shaft - diagnosed as chordee
Symptoms: curvature (35-40 degrees)

jan.schaller1958

Quote from: peter123 on April 12, 2020, 05:09:13 PM

hey man do you know any good Peyronies Disease doctors in Germany? most urologists seem to not know very much about it

These docs are good and specifically deal with Peyroines (IPP):

Urologie am Ring
Kaiser-Wilhelm -Ring
50672 Köln

+49 221 125009
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peter123

Quote from: jan.schaller1958 on April 23, 2020, 03:11:19 PM
These docs are good and specifically deal with Peyroines (IPP):

Urologie am Ring
Kaiser-Wilhelm -Ring
50672 Köln

+49 221 125009

oh are these the ones from the YouTube channel?
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.