Peyronies Society Forums

Please login or register.

Login with username, password and session length
Pages: [1]   Go Down

Author Topic: New to the forum from Boston starting Xiaflex  (Read 2504 times)

0 Members and 1 Guest are viewing this topic.

Protracta

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 8
New to the forum from Boston starting Xiaflex
« on: December 03, 2014, 11:21:21 AM »

Hello to the forum members. I've learned a lot about the disease from these boards so I figured, since I'm about to be treated with Xiaflex, that I may share my experience to give others information.
I'm 47 and was diagnosed with Peyronies a couple years ago. I have two pieces of plaque just before the head on the top of the penis. I was told to take Glucosamine and L-Carnatine daily. That did nothing. Since the diagnosis it has plateaued and I began seeking treatment. My urologist recommended a Dr. who he said was one of the best in the field. I was going to have surgery but waited for the Xiaflex to be available. On my last visit to Boston University Medical Center I had an ultrasound and was given some information on the Xiaflex treatment. My doctor is Dr. Munarriz. He explained I had an 80° curvature. We discussed the options of treatment and the prospect of Xiaflex use. He believes the Xiaflex injections are my best option before surgery. He explained if we could get enough of the curve eliminated with injections than surgery could be avoided. He could also surgically add a small stitch after the injections which would get us a few more degrees without shortening. His main worry is my age. I'm 47 and have no erectile dysfunction. Since there is a side effect of possible erectile dysfunction he wants to be conservative. He mentioned I'd be using a straightening device along with modeling. I am waiting for my insurance to approve the Xiaflex which he claims is $4K per injection. I have Blue Cross PPO and they pay for everything.
So, I hope I can answer any questions and maybe provide info for others. I know I left out a ton of important details so ask and I'll find an answer.
Logged

james1947

  • Major Contributor
  • ****
  • Country: ro
  • Offline Offline
  • Gender: Male
  • Posts: 6620
  • Age 71. Peyronies from January 2009
Re: New to the forum from Boston starting Xiaflex
« Reply #1 on: December 03, 2014, 06:22:58 PM »

Protracta

Wish you be approved for Xiaflex as it is much preferred on surgery.
I don't understand the:
Quote
surgically add a small stitch after the injections

I never heard about such thing and I am reading everything possible about Xiaflex on the forum and other sources.

James
Logged
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

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 303
Re: New to the forum from Boston starting Xiaflex
« Reply #2 on: December 03, 2014, 09:00:23 PM »

Good luck Protracta! It sounds like your doctor is very wise and thinking outside the box by combining a couple of approaches to get you straightened out. Very interesting! I'll be watching and pulling for you!

Good luck!

Knight
Logged

Protracta

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 8
Re: New to the forum from Boston starting Xiaflex
« Reply #3 on: December 04, 2014, 10:45:22 AM »

Thanks James and Knight for the encouragement.

The stitch he would add was described something like this.

With the Xiaflex injections we hope to go from 80 degree curvature to something manageable. Once we get to what we think is the limit of the Xiaflex can do, we also have the option of surgically placing a small stitch to get a few more degrees, without the shortening or other problems that may occur when having to use grafts and more stitching to counter the curve. I think he means that anybody could have this non evasive stitch to relieve a small degree of curvature. With a big curve you would not get much relief from this stitch. However, if you get some decent results from the Xiaflex, the stitch will add to what the injections had fixed. You may go from 80 degrees to 40 degrees with the Xiaflex and the stitch may get you to 35. Any more stitches or graft would cause shortening and possible Erectile Dysfunction.
Does that make any sense James?
Logged

james1947

  • Major Contributor
  • ****
  • Country: ro
  • Offline Offline
  • Gender: Male
  • Posts: 6620
  • Age 71. Peyronies from January 2009
Re: New to the forum from Boston starting Xiaflex
« Reply #4 on: December 04, 2014, 05:12:08 PM »

Protracta

Thanks for the explanation. His proposal sounds logic.


James
Logged
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

LWillisjr

  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 2977
  • 65 y/o - 13 yrs Peyronies free
    • My Peyronie's Story
Re: New to the forum from Boston starting Xiaflex
« Reply #5 on: December 04, 2014, 09:46:59 PM »

The stitch sounds to me like a small bit of plication surgery to resolve any remaining curvature.
Logged
Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
65y/o  13 years Peyronies free
My History

Protracta

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 8
Re: New to the forum from Boston starting Xiaflex
« Reply #6 on: December 05, 2014, 06:09:45 AM »

LWillis, I believe you are correct. he also gave me a prescription for Cialis even though I have no problem getting erections. I'll put them in a drawer in hopes I get straightened out. Then I'll go on a Cialis bender!

Bad choice of words...no bending.
Logged

james1947

  • Major Contributor
  • ****
  • Country: ro
  • Offline Offline
  • Gender: Male
  • Posts: 6620
  • Age 71. Peyronies from January 2009
Re: New to the forum from Boston starting Xiaflex
« Reply #7 on: December 05, 2014, 06:32:45 AM »

Protracta

Regarding Cialis:
Low dose daily Cialis (2.5 mg if don't have Erectile Dysfunction, 5 mg if have Erectile Dysfunction) taken with daily Pentox and VED, showed improvement in curvature.

James
Logged
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

Protracta

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 8
Re: New to the forum from Boston starting Xiaflex
« Reply #8 on: December 05, 2014, 07:40:01 AM »

Thanks james1947.
I will find out Tuesday if my insurance approved the Xiaflex.

Is that Cialis cocktail (seems the puns are easy on this topic) given post Xiaflex treatment or is it a conservative treatment for minor curvature?


Logged

james1947

  • Major Contributor
  • ****
  • Country: ro
  • Offline Offline
  • Gender: Male
  • Posts: 6620
  • Age 71. Peyronies from January 2009
Re: New to the forum from Boston starting Xiaflex
« Reply #9 on: December 05, 2014, 04:26:19 PM »

The "Cialis/Pentox/VED cocktail" is a treatment that worked for some members and have some support in files in the library. It is not connected to Xiaflex.

James
Logged
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

Protracta

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 8
Re: New to the forum from Boston starting Xiaflex
« Reply #10 on: December 10, 2014, 11:12:36 AM »

I was approved for Xiaflex treatment.  ;)
I have appointments for 3 injections. They scheduled me on a Monday, Thursday, Monday routine. I'll start these on the 8th of January and report back with details.
Logged

james1947

  • Major Contributor
  • ****
  • Country: ro
  • Offline Offline
  • Gender: Male
  • Posts: 6620
  • Age 71. Peyronies from January 2009
Re: New to the forum from Boston starting Xiaflex
« Reply #11 on: December 10, 2014, 04:50:23 PM »

Wish you good outcome from the Xiaflex Protracta.

James
Logged
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

james1947

  • Major Contributor
  • ****
  • Country: ro
  • Offline Offline
  • Gender: Male
  • Posts: 6620
  • Age 71. Peyronies from January 2009
Re: New to the forum from Boston starting Xiaflex
« Reply #12 on: December 12, 2014, 02:23:05 AM »

This topic is locked as an introductory topic.
Please continue the discussions on the relevant boards.


James
Logged
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
Pages: [1]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
14 Replies
4966 Views
Last post March 06, 2017, 07:34:23 AM
by Ben T Dick
5 Replies
1890 Views
Last post November 25, 2015, 08:59:43 PM
by bucfan
5 Replies
1819 Views
Last post February 07, 2018, 11:15:27 PM
by TonySa