JPRHenry - Updated March 25, 2010

[JPRHenry]

Age - 56

Age at onset of Peyronies Disease - 55  

I have had Peyronies Disease for 1.25 Years

Very First Symptoms - My peyronies literally appeared overnight just a little more than a year ago at age 55.  Other than about a 40-45 degree curvature, upward--appearing out of no where, there were no forewarning symptoms or problematic concerns.

Initially, for possibly the first six months there was not what I would term "pain" but a continual sensation that something physically was occurring.   Approximately 6 months ago I made a visit to my urologist.   Although I have known him for years and weighing in for myself the gravity of this "situation" I was stunned at his cavalier attitude and immediate and only suggestion just to call when I was ready and they would get me on the surgery schedule.  

There was no discussion of any potential alternatives.   No discussion of pro vs. con.  No discussion of consequences.   Again, I was shocked that from start to finish, this appointment and exchange probably took less than 15 minutes max.   For an issue that has taken a physical, sexual, mental and emotional toll on me,... this was simply not acceptable.

Where I am today - After going online and doing some initial research, I learned of Auxilium's Xiaflex.  I did call Auxilium, and actually got a return call from one of the individuals directly involved.  I was duly impressed.   At that individuals guidance and encouragement, I have made contact with Dr. Levines office and am hopeful to be considered as a candidate for that study.  I continue to hear positive comments regarding this study and can only hope it is all true.

I did arrange a consultation with Dr. Levine via telephone in March or April of this year.  The conversation was the opposite of my previous in office visit with my hometown urologist.  

Dr. Levine listened, was empathetic, supportive and gave me reason to be optimistic.   The proverbial difference of night and day---a breath of fresh air.  Per Dr. Levine,  I am taking as prescribed, L-Arginine and Pentoxifilline and have considered the traction device as he mentioned.  Any personal comments and suggestions would be most appreciated.

In the meantime I am very, very happy to have found this site and am grateful for the support I have had thus far, and for those of you that have taken the time to actually talk with me.   A price tag cannot be placed on the value of your understanding and encouragement.  

Thank you.



UPDATE: In the fall of 2008, I visitied with Dr. Levine as a candidate for the Xiaflex study.  I did not meet the required criteria.  It was determined my plaque/scarring had begun to calcify.   After much consideration I made the the final decision to proceed with surgery, and then applying for prior approval through my insurance company, rejection, appeals process and finally, approval--my surgery for excision and grafting was scheduled for 9am, Monday, 3/9/2009.

On 3/9 I did have the procedure done.  Two weeks later on the 24th., of March, I flew up and back to Chicago for my 2 week post. op. check.  Everything looks well, Dr. Levine was very pleased with the results. Next Friday will be one month--I continue to mend.  The change(s)  from week 1 to 2 was amazing.  Week 3 as well.  At week 6,. we will move forward into seeing how things are "operatively".   With some anxiety, I look forward to this opportunity.   I know from initial observation, where I had once had a curvature in excess of 60 degrees, it is now gone.  Erections are good, firm , rigid and should continue to improve more as the nerves continue to mend.  Sensitivity has remained in tact.

In late June, I have another visit scheduled with Dr. Levine.  I see no reason to believe why everything will not continue to progress, this story will have a happy ending and when I speak of Peyronies, it will be used in the past tense.

Having said all of this, I will not be leaving the Peyronies Forum.  This site has been literally a "lifeline".  I've "met" several individuals that have been instrumental and a "guiding light" for me.   I was fortunate that early on, I "met" a fellow Dr. Levine patient, who had blazed the trail before me and has been nothing less than a mentor--and take this opportunity to publicly say "thank you".

It's a day by day process, but I can say without reservation it was the right decision for me.  I liken the past two years to pulling a piece of string,.. Beginning with Googling "Peyronies, treatments",.. leading me to Auxillium/Xiaflex, a phone call to Auxillium, referring me to Dr. Levine, The Peyronies Forum, etc.,  As they say "The Rest is History".  A special thank you to HAWK and all the members who have made, and keep this site viable and helpful tool to share and support all people and their families dealing with this  physically, mentally and emotionally taxing  and devastating (I hate referring to it as a "disease") "condition".  I have said, if we all were asked to write a chapter for a book on Peyronies,  all of our "chapters" would probably sound eerily the same---and they would be chapters of frustration and sadness.   Regardless of the individual and different therapies we elect to choose, the Peyronies Forum is the most valuable sharing and sounding board I have ever encountered. My updated post is twofold,...  One it to share my experience with all of you, but most of all to reinforce what a wonderful site The Peyronies Forum is.  Simply the best.  I thank all of you again  for your unselfish support and will do my best to  return that favor when called upon.  

JP

UPDATE:  March 25, 2010

Last weekend I made my one year, post surgery and last up/back trek to O'Hare, the Blue Line, Rush Medical and back on the same day.   One year already, impossible to imagine.   It is simply amazing how fast my nearly 3 year trek and history has gone and how well it all has come out, even from the darkest days.

My surgery has been deemed a success by both Dr. Levine and me.   In the end,...  although not I-beam straight, I'm very pleased.  Still.... strong erections and minimal loss in length.   Physically,  no disappointments.   Equally and as important, mentally and emotionally, I am "fit" again.  I no longer feel defective and am healthy there as well.  

Again, I can never, never, never thank all of the people and this site enough.   There was never a shortage of support or encouragement.   I consider myself fortunate, lucky and blessed.  The only thing left for me to do is to now return all the same to all of you.   My email "door" is always open, feel free to contact me with any of your questions, concerns or if you just need a shoulder to lean on.  I'm here.  

JP