My Peyronies story - diagnosed to treating to surgery

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mike67

Age - 69

Age at onset of Peyronies Disease : 67

My medical history
In September 1987 I had quintuple Coronary Bypass surgery after an Angiogram revealed blockages in 5 arteries.
 My medications :Statins for 20 years
         Calcium channel blocker since 2006  --Amlodipine
         ARB since 2006 -- Losartan Potassium   Angiotensin Receptor Blocker
         Niacin - to raise HDL
         81 mg coated  Aspirin
         NutraSea oil - 750 mg EPA   500mg DHA
         Coq10 UBIQUINOL

To clarify , none of the above are Beta Blockers. My druggist told me that Beta Blocker drugs end with " OL".

Due to symptoms during exercise a subsequent Angiogram May 2006  revealed that the bypassed arteries had significantly increased blockages.There was nothing they could or would do , such as a stent , since it was deemed too dangerous. But my blood flow was good and a MUGA scan  showed a 70% left ventricle ejection fraction , which is very normal. The right ventricle was also normal. He added a couple of additional medications and I stepped up my exercise program and continued to watch what I ate. Thankfully this concentration of effort has paid off for me.

Nothing else to report that is remotely related to my Peyronies.

Very First Symptoms   -
In May 2010 I noticed a rather severe curvature to the right while having an erection. After web searching for " crooked penis " etc , I discovered there was a name for my curvature. Armed with this information , I  took a picture and made an appointment with my Urologist. One look at my photo and he confirmed my diagnosis.
My Peyronies
Disease progression:
In spite of daily VED use , my curvature progressed from about 60 % to a "complex" 90 % right lateral deviation.

Treatments (in order),
Sex pump , daily Cialis 5 mg , then 3 cylinder Vitality VED daily for 1 1/2 years
Ubiquinol 100 mg 2 x daily
Pentox 400 mg 2 x daily then later increased to 3 x daily
L-Arginine 500 mg 2 x daily
Surgery Feb. 2 , 2012 Plaque Incision & SIS Graft plus a Plication.

Doctors,  
My first Peyronies appointment with my existing Urologist ended with diagnosis , get a pump and a prescription for daily Cialis. He told me it went away 50% of the time and that surgery was the only certain method to correct the curvature.
My GP was sympathetic but could not do anything except tell me to see a qualified Urologist.
My Cardiologist was also very interested as he said he had several other patients suffering with Peyronies.

July 2010 Started on the Vitality 3 cylinder VED and continued for about 1 1/2 years. Unfortunately I did not notice any improvement in my condition after that time .  

October 2010 I obtained a referral for a Peyronies specialist in Toronto after web searching for " Peyronies Specialists in Canada ".    
He prescribed Pentox and L'Arginine. This regimen advocated by many knowledgeable members on this Forum.
 Psychological Stages,
   Surprise , depression , tears , what now , let's get this fixed

November 9 , 2011  
 I decided against Verapamil injections . I was advised that there was a success rate of about 60 %. I felt I didn't want to spend the time involved , waiting for several more months for something that may not succeed. After explaining the possible side effects , my Toronto Urologist  said that he could offer me " a significantly straighter penis " with surgery. He told me to keep in touch by email with any questions , view his YouTube clip that shows his  surgery and decide which course I wanted to take.

December 14 , 2011 I met with the doctor and decided to book surgery. He said Plaque Incision & Graft , using a SIS graft would be best for me. He advised that since I had a severe curvature , Excision would require "digging" too deeply and disturbing other parts thereby increasing the possibility of Erectile Disfunction. Surgery was booked for February 2 , 2012.

Surgery
Thursday Feb. 2 , 2012 [/b] I had Plaque Incision & SIS Graft under a general anesthetic . My surgeon / Urologist was Dr. Ethan Grober  at Mt. Sinai Hospital in Toronto.
The initial artificial erection during surgery showed that I had a significant 60 to 70 degree right curvature with a hinge like effect.   A second induced erection showed  my penis was significantly straightened with just a slight residual right curvature . They took care of this with a small left  plication.So I actually had Incision with Graft plus a plication. My doctor told me that the final artificial erection showed a very functional straight penis. My plaque was not calcified. Surgery lasted about 2 hours.
In the recovery room at about 2:00 pm I was able to urinate. Otherwise they would have to reinsert the catheter. I was kept overnight  and was very closely monitored. Ice packs were placed in the area 20 minutes on / 20 off throughout the day & night. Pain med given every 6 hours.

Friday Feb 3/12 :
Went home Friday morning . Dr. Grober had seen me a few hours post op on Thursday and explained everything that they did to me during my surgery.
 I went home with pain pills which I took 4 x daily til Sunday then cut back to 1 x 3 per day. He also gave me a Rx for a 5 day dose of antibiotics to ward off any infection that may occur. Ice pack applies throughout the days.

 Saturday Feb 4 :
During the night I had to loosen the elastic wrap as it was causing a bit of a problem urinating.
I removed the bandages in the shower on Saturday morning. No pain except the uncomfortable feeling from my swollen penis. Also bruising and normal residual swelling around the tip stitches. Alopurinol is to be applied 2 x daily for 7 days.
No exercising or heavy lifting for 2 weeks.

Sunday Feb 5 :
Still badly swollen around the glans stitches. I sleep between two pillows , on my back , so as not to lay flat on the penis and upset the graft. It is easier to walk around the house but urine flow is still slow. But flowing! Getting stabs of pain in the tip. Four days of strong pain meds left me terribly constipated this morning , in spite of taking a softener. That out of the way , things were better afterwards.
Cut back pain med to 1 x 500 mg every 6 hours. The swollen tip aches.

Monday Feb 6 - day 5 :
Bruising starting to recede. Glans still largely swollen , which is normal.
Stopped applying ice packs during the day. I stopped taking doses of the pain killers Tuesday night.
  Instructions are to wear tight fitting undies and place the penis upright to my belly button to reduce swelling. I also placed a folded kleenex there to see if there was any residual bleeding. There were just drops at various places along the stitching. This stopped after about 10 days post op.
Still using ice packs several times daily.

Wed. Feb 8 :
Six days post op I had my first night time erections Wed. night. One at 2 am , the other at 4 am. Very painful. I stayed up after the 4 am erection. I saw that it was straight.  
Anticipating a painful erection recurrence, I took a sleeping pill the following night , as well as 2 of the pain tabs. I didn't wake up til 6:30 am today and felt nothing. I then started taking 1 pain tab at bedtime for about 5 nights. This releaved much of the pain I might have experienced with the erections. But they were still uncomfortable.
My penis was still swollen but looked & felt better as each day passed. Applying ice pack periodically. More for the Glans at this stage of healing. Developed pain in my thighs which lasted about 5 days. Probably from lack of activity.

Sat Feb 11- nine days post op :
Still having several straight night time erections. Not too uncomfortable.

Tues Feb 14 :
glans swelling continues to recede. Still taking 1 pain med at bedtime for erections. Uncomfortable but not painful.

Thurs Feb 16 :
No pill. My 3 erections were somewhat painful.

Friday Feb. 17:
Took Tylenol # 3 . Three erections . last one at 5 am was painful. Noticing a slight curve .

  We continue for the next several days as before. Swelling in glans has receded  much more . The stitches have not completely disolved yet.  

Friday Feb. 24 : Three wks post surgery appointment
     I had a very thorough meeting with my surgeon. He looked at it and showed me how to gently massage the graft 2 x daily for a few wks. so as to assist in the healing process. Also begin daily 5 mg Cialis , take Pentox again for a few wks. and restart using the VED in about 3 weeks. Full erection with full dose Cialis for sexual activity. Important not to force entry with a less than full erection. Injury could result.

I am now seeing a slight bend again but the massaging of the graft , VED and natural healing process should correct this.  Everyone's body heals differently and perfect outcomes cannot be guaranteed . But my surgery did correct a very complex 80 degree curvature.
It remains to be seen what develops as time goes by.

March 1 : 4 weeks post op:  
   
The Cialis is producing good night time erections. I have developed a residual curvature post op of about 45 degrees. Rather than going back to using a VED regimen , my surgeon has strongly recommended starting on a traction device. I ordered the Fast Size from Mike Hays at USPhysioMed in California.

March 22/12
Traction device arrived . I have started slowly at a rate of 1 - 2 hours per day  and will build on that according to the schedule described in the instructions.
I am also maintaining a daily dose of 400 mg PENTOX 2 x daily plus the nightly 5 mg Cialis which I take every other night. I am still massaging the graft 5 minutes 2 x daily.
My penile sensitivity has not yet returned but this will take time.

April 2012
Some sensitivity has returned and I have advanced to being on traction for 4 hours per day. I do 2 hours in the morning and 2 hours later in the day. For now , that is all I can handle. Waiting and hoping it will prove helpful.

May 26 , 2012  
  I am now at the 2 month completed mark of using the Fastsize Traction device , as recommended by my surgeon as a post surgery regimen. While my Incision / graft surgery initially straightened my 90 degree right bend , I did develop soon after , a residual 45 degree bend. I believe the traction is showing improvement and I will continue to try staying with my 4 hour per day use of it. My next follow up appointment is 2 nd week of June so I hope I can show him that it is working to straighten the bend.
I have read here that traction is a necessary post op procedure to help mobilize the graft and to make sure it remains in place and functions well.

May 31/12
 I believe I can safely state that the traction has definitely improved my residual bend. There is still a slight bend but comparing my progressive photos to yesterday , it is getting better.
 I am still continuing with 2 x daily Pentox , 1 x daily L'Arginine & Ubiquinol. As well , taking 5 mg Cialis every 2 or 3 nights.

June 13,2012
I had my second post surgery appointment with my surgeon/ Urologist. I am progressing well . The SIS graft is flat , which is good , and in time , will be absorbed by my body tissues , completing the healing process.
 I was advised to continue with Traction for another 3 months. It appears to be working and erections are good. A little discomfort , not quite painful , when I experience the odd really hard night time one. Like this morning.
 It was suggested that further down the road , a small Plication " tuck" would help with further straightening , only if required. It would not involve degloving of the glans.
 Continuing with 2 X daily Pentox , 1 x daily L'Arginine and 5 mg Cialis , which I take every 2 / 3 days.

Sept. 8 , 2012
 Just as an update - I had my 7 month follow up appointment post surgery with my Urologist/Surgeon last week. I have been using the Fast Size traction device for almost 6 months , having started on March 23/12.
While I was getting 4 hours daily useage , I have to admit to managing only 2 hours lately , most days - and not every day. But I am pleased that my post surgery residual curve had receded to the point that many of my night time erections are straight - though not hard as a rock. When not straight , they are much improved from post op.
 I am now using a Testosterone Gel - ANDROGEL. Started this just yesterday. My PSA is 1.8 and will be closely monitored.
Not much else to report at this time. If anyone has comments to offer on ANDROGEL , side effects and results , I would be pleased to hear from you.

Jan 31 , 2013
I guess it's time for an update. Next week will mark 1 year since my surgery. I have taken myself off of Traction useage. My doctor , at last appointment in December , suggested I should use it only if I feel it necessary. I believe that my situation has improved as far as it will go so have discontinued Traction. Penile curvature is now minimal and I credit this to the surgery and subsequent use of the Fast Size Traction  device. I also stopped taking Pentox last November acting on my uroligist's instructions.
I am still on Testosterone gel and so far , no side effects. My PSA went up slightly but of no concern. Presently ( November)at 1.64 - up from 1.36 in April.

May 13,2014
I notice that there are quite a lot of views to my history so I am hoping that some of those members have benefitted from my experiences. And as such I feel a footnote at the 2 year marker from surgery is in order.
I can still safely state that my surgery was a success in treatment of my very acute bend to the right. I am no longer using traction or any other of the earlier treatments.
I do have a very slight bend straight in front but it is nothing that is interfering with activity.
I am still available to any member that may want to contact me. I am very grateful to all those who helped me through the initial traumatic months of treatment and subsequent surgery.

April 5 , 2016
Almost 2 years since my last post. I am pleased to report no worsening of my condition. The situation is pretty well as it was reported May 2014. Thank you Dr. Grober.
I am glad that I have been able to assist several Canadian sufferers from time to time with whatever information I can provide.
November 17 , 2020
Just as a further update.  I see many views of my story so I hope I have been able , through my story , to help some people. I am doing well. The severe right angle bend to the right prior surgery is still corrected.
The only residual issue I have now is that I get a slight bend straight up center during an erection. It begins at the base.
I have had a few members contact me from Canada and will do all I can to help anyone who reaches out.
Thank you to all here past and present that helped me through my ordeal.

This from 2012
I can't say enough good things about Dr. Ethan Grober and his team. Everything went smooth. He is quick to respond to all my questions . A congenial and emphathetic doctor.

I am very grateful to the many members who contacted me , wishing me well , prior to and after surgery. It meant a lot and for that I thank you.

Please PM me if anyone wants to ask me anything about my surgery and outcome.

Mike
   
Mikey

JR678

Hi Mike, my name is Joe from Toronto. I have my first consultation with Dr. Grober in November. Thanks for sharing your story. It truly put me at ease knowing the full process of what to expect with the surgery option and the time tested result. I am now quite excited about the surgery route. Grober seems to be the best person to trust with this issue in Canada.

Can I ask two questions: If you had it to do again, would you have went straight to surgery instead of the initial med protocol? I would rather go right to surgery and wonder if you had also discussed this with Dr. Grober and if it was an option.

Secondly, did you lose any length when it was all said and done?

Thanks again Mike!!    
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