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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: First post and comments of xiaflex treatment  (Read 1856 times)

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JonInOH

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First post and comments of xiaflex treatment
« on: July 19, 2018, 08:24:06 AM »

Thankful for this forum.  I'm 63 and have had a pretty significant curve for 12-18 months.  Was "officially" diagnosed earlier this year and have started on the xiaflex injections.  My angle appears quite severe to me.  I would say 90 degrees because when I am hard and standing up my curve points straight upward to the ceiling.

How do guys know how many degree angle they have?  Is it something that is just estimated or is it a measurement made by a medical person?

I am half way through the entire xiaflex process, which I expect will end in October.  I haven't noticed an improvement but the urologist said that wasn't uncommon on at this stage of the game.

I have a very understanding and cooperative wife of 43 years.  Although at the beginning of this when we were considering whether to move ahead with the xiaflex treatment she questioned whether it was worth the cost.  That was a bit hurtful.  We were told that the entire xiaflex regimen would cost $20,000.  But after the xiaflex company applied their discounts (seems like a shell game to me in terms of how much they say it will cost and how much you end up paying) and we met our deductible it hasn't been that bad. 

Eager to see whether this truly helps.  I have some pain with intercourse but I find I want it so badly I put up with the pain as the overall pleasure trumps the pain, if that makes sense.

I take the time to pleasure my wife orally which, I think, helps her have the patience to work with me and find the right angle and try to get everything in place when it's "my turn."

Anyway, thank loads for this forum.  Wishing all the best for everybody here.
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betterbend

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Re: First post and comments of xiaflex treatment
« Reply #1 on: July 19, 2018, 09:17:21 AM »

I go my measurement by my doctor on my second visit.  He induced an erection and did an ultrasound scan to confirm the plaque, confirm the state of calcification, & blood flow.  Also it set a baseline for the mid term assessment for Xiaflex efficacy.  Unfortunately for me my Xiaflex results were minimal at the mid term (4 injections).  Did your doctor do any of these tests prior to Xiaflex treatment?  If he did he may have a measurement for you.

Anyway, you are dealing with this in a positive way with your partner, which is so important.  Are you using traction or any supplements like CoQ10 or L-citrulline?  Rx drugs like Cialis or pentoxifylline? 
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55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

JonInOH

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Re: First post and comments of xiaflex treatment
« Reply #2 on: July 19, 2018, 12:34:46 PM »

Not using any traction or supplements but always use Viagra and have been doing so for 10-12 years.  He did induce an erection in the exam room (although not a "bedroom level" super hard one) and took some readings.  He verified the presence of plaque but didn't seem to measure degree of angle.  I should ask him about it next injection.

Many thanks for the encouragement!
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betterbend

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Re: First post and comments of xiaflex treatment
« Reply #3 on: July 20, 2018, 11:34:14 AM »

I would guess then he is only recommending hand modeling?  There is a lot of research out there that traction for a minimum of 2 hours per day during Xiaflex therapy is the most effective way to get results, you can still hand model too.  Even though your doctor has not recommended traction you should check it out.  Many of the people on this board know more about treating Peyronies than the average urologist, so its really up to you to be up on the disease. 
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55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

james1947

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Re: First post and comments of xiaflex treatment
« Reply #4 on: July 21, 2018, 11:04:28 PM »

JonInOH

Wish you good results and please continue to update us :)

James

Topic moved by moderator to the Xiaflex board to have continuity as in the introductory board topics will be locked after 10 posts
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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

TonySa

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Re: First post and comments of xiaflex treatment
« Reply #5 on: July 22, 2018, 11:24:56 AM »

So if you curve upward, take a picture from the side.  Then from the picture draw two lines, one through the normal line of your dick (as if it doesn’t turn) and a second a line through the part that isc urved.  Where they intersect measure the angle with a protractor.  There are better instructions here:  Instructions for Measuring Curvature - Peyronies Society Forums I f you have a computer program that can draw lines on a pic and overlay a protractor so you can get a pretty consistent measurement.  See my pics as an example. http://www.peyroniesforum.net/index.php/topic,9065.msg94793.html#msg94793
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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.
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