Re: New Member - Story/Treatment/Looking for advice

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

Angelfiire

Hi everyone, I would like to start by thanking everyone involved in making this forum a reality as it has served as a valuable resource to myself and countless others who suffer from this terrible affliction. I would also like to thank everyone that has taken the time to share their stories and provide support as well! Over the past 2.5 years I have trolled through this forum as a spectator, not really knowing how or when to jump in. Now I feel is the right time.

My personal details: I am 39 years old and I have been suffering from Peyronies for 2.5 years. I am Canadian and live just outside of the Toronto area.

Now to share my experience/treatments to date:

I first discovered painful erections approximately 6 months after my wedding night. Without going into specifics, my wife and I celebrated our nuptials with a blissful 4+ hour marathon, which resulted in trauma to my penis. To this day, I don't know how the trauma happened exactly but it did.

When I started noticing the uncomfortable erections, I thought they were the result of a prostate or urinating tract infection.  After an unsuccessful round of antibiotics, I was referred to a urologist who opted to perform a cystoscope to determine if I had any abnormalities/blockages. At no point did he mention that the problem could be Peyronies. After roughly a year past my initial symptoms surfaced, The curvature started becoming prevalent.

Through my own research/stumbling across this forum, I made the determination that I was suffering from Peyronies. I went back to the urologist who then educated me about Xiaflex injections and then referred me to another Urologist in the Toronto area, Dr. Richard Casey. I had to wait several months to see Dr. Casey, so in order not to waste time I did an extensive amount of research. I ended up ordering a Size Genetics traction device (which I have never been able to get to work properly to this day!) I went to see a Naturopath who made up a topical ointment for me (to be applied twice a day) which include 10% Lugols, 20% DMSO, 3% Vitamin C mixed in Lipoderm. This was recommended along with Castor oil packs 3 times a day. The naturopath had apparently treated one person successfully using this treatment method. She was also a personal friend, so I opted to give it a chance. I can't speak of the creams efficacy as I was in my acute stage. I also tried various types of digestive enzymes (which weren't effective for me).

By the time I had my first appointment with Dr. Casey my Peyronies had finally stabilized. My deformity included a dorsal curvature of approximately 50-55 degrees. I also had a small amount of the hourglass formation on the right side of my penis. At this point intercourse was very tricky. My wife is extremely petite and found the curvature to be very uncomfortable. At no point in my life had I experienced erectile dysfunction...though trying to have intercourse with this curvature had made me self conscious and psychologically, I found it hard to focus on getting aroused and maintaining a strong erection.  This was further complicated by pain associated with my erections.

When I first met with Dr. Casey, he mentioned that the Xiaflex treatment was the best way to go. He recommended 1 injection per month for 8 months as well as daily stretching (3x per day in 30-60 second intervals). I was also told to abstain from masturbating as well as intercourse with my wife and was then asked to sign a waiver stating that I would abide by this protocol. I knew this would be difficult as I sleep next to a beautiful woman every night, but it was a no brainer! I am self employed so unfortunately I had to pay out of pocket for the injections. I also had to pay for the administration of the injections and an initial assessment. This was a huge financial output that coincided with me building a house without a mortgage at the same time. But, let's be honest....none of us can put a price on correcting this problem.

During my consult with Dr. Casey, I was told that he had treated approximately 70 men and that all but one were fixed to a satisfactory level after 3 injections. Well, I'm very sorry to announce that I am now the second patient to not be fixed after 3 injections. I have had 7 injections in total and would say that my curvature has been corrected by 5% (this is me being modest).  I opted not to have the 8th injection as I feel I should notice a significant difference by now (If I am wrong and others feel I should have the 8th, please let me know!) throughout my injections I was told to be patient (again, as we all know this is easier said than done). I was promised that if the Xiaflex was unsuccessful, plication surgery would be the best course of action. I was also told that they would possibly attempt removing some of the scar tissue from the erectile bodies before trying plication. When I said that I was halting the Xiaflex and wanted to open the conversation about surgery I was then referred to the Professor of surgery from the University of Western Ontario, Dr. Gerald Brock. Dr. Casey essentially dropped me (which honestly bothered me because I had built a good relationship with him and to be honest he made me comfortable).  I spoke to Dr. Brock's receptionist this week and found out that there is a year long waiting list, just to see the man.

So that takes me to right now, writing this intro. I felt this was the time to do it because, I have been suffering for the past 2.5 years with this horrible condition! I am such a fortunate person in so many ways and I never lose sight of that. I am married to an absolute angel. My wife is the love of my life and the best supportive partner I could ever have hoped for! We haven't had intercourse in over a year and this is the hardest part for me. All I want is to be intimate with my wife. I am an extremely positive person, but I can honestly say that Peyronies has been the most challenging experience of my life. I fight every day to stay positive, to stay focused on other important matters...but the truth is, Peyronies has been a permanent dark cloud over all the positive. It overshadows everything. I'm sharing my story because I'm a firm believer that no one should ever suffer alone and that as race we will always be stronger united and together supporting one another.

Thank you for taking the time to read my story. In conclusion I would like to state that I am determined to fix curvature and move on past this nightmare!  I am not prepared to wait a year or more to meet a doctor that I'm not sure is the best surgeon to treat me. Dr. Brock may be the head of surgery for urological problems but that doesn't mean he is the best suited to treat Peyronies. I am not rich by any means but I am willing to seek out private healthcare in Canada or the US to get the best treatment. If you are able to offer some insight into doctors that are best suited for plication surgery, PLEASE reach out and let me know.

Again, thank you very much for reading my long-winded rant. If I can ever offer support or anyone needs someone to talk to, please reach out.

Wishing each and every one of you a successful recovery!!
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
age, date of onset, symptoms, treatments tried,
relationship status, etc
** You will waste less time and get better answers **

Benjamin62

That's quite a story...so sorry for you to suffer this as a newlywed.
I'm am going to have Plication done in the next few months.  I can tell you I have personally spoken to three excellent surgeons in the US.  Lawrence Levine in Chicago, Joel Gelman in Orange County and Brian Christine in Alabama.  I would suggest googling Gelman... on his website there literally is a button called ask the Doc.  When I put in my info... he actually called me within hours.  
Everyone on this forum seems to like him... and he really cares and will offer good info.
I going to see Brian Christine... not as widely known on this forum but does about 5 Plications a month... but look at his You tube channel...
Brian Christine MD ... specially video entitled "magic in the operating room"... shows the full procedure .  The reason I am going to speak with him in the next few weeks is he will also do Extra Tunica Grafting to correct the hourglassing...something he trained with a surgeon named Tom Lue of California.   Hope this helps and gives you hope.  These guys will all tell you... it's treatable!  
If you want answers, Please help us by filling in your signature block

Click here for Directions

TDix

If you are interested in excision and grafting, my doctor, Dr Faysal Yafi at UCI, is an amazing doctor.  If you are looking for something closer to you, Dr Yafi recommends Dr Serge Carrier at McGill in MontrĂ©al  
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Angelfiire

Thanks so much for the information. I emailed Dr. Gelman and ended up speaking to him directly within an hour. He gave me a lot of valuable information! The cost of treatment is 18k (approx). Which is pretty costly for me as I just finished paying for a full round of Xiaflex. Interestingly enough Dr. Gelman told me that in his opinion Xiaflex is nowhere near as effective as people are led to believe (I wish this would have been communicated to me by my own uro).  I believe that plication is the best option for me and I want the best surgeon available!! I would really like to chat to someone who has gone through the procedure with Dr. Gelman if possible.

Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
age, date of onset, symptoms, treatments tried,
relationship status, etc
** You will waste less time and get better answers **

TDix

No worries.  It's ultimately your choice/your body/your life.  If you are adamant about Dr Gelman, go for it.  I actually was going to go with him until I found out he didn't take my insurance.  Good luck to you bro!  I know Dr Yafi isn't on the list here and I seem to be the only one who has gone to him.  If things change I am open to any questions as is Dr Yafi
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Angelfiire

Thanks Tdix,

I will definitely reach out to Dr. Yafi as well. Would you mind telling me why you opted for the grafting? Dr. Gelman told me that the decision was completely up to me as to whether I had grafting or plication. He told me he prefers to not but something foreign into the penis and believes the plication option is better.  I was concerned about grafting due to possible complications....just curious about your experience/thoughts. Thanks for taking the time to reply!  
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
age, date of onset, symptoms, treatments tried,
relationship status, etc
** You will waste less time and get better answers **

TonySa

One difference is potentially no loss of length w grafting, but always loss of length w plication.
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.

TDix

For me it was extensive calcified scarring.  I could have gone with plication solely but due to how much scarring I had that had calcified dr Yafi and I agreed some of it needed to be removed
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE