Jackp - Updated 8/23/09

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Age 66

I have had peyronies disease for 14 years. (1995)

My first symptom.
Penis curved up form plaque just behind the glans (head).

My Peryonies Disease progression, Treatments, Doctors, Psychological Stages, observable changes.

The history is long. All my problems are from the pryronies in 1995. If anyone has questions just post on the proper forum or send me a PM.
Urology History

            1947 Age 5, Tonsils removed and circumcised.

1.   1972 Vasectomy with removal of a cyst from my scrotum.

2.   1975 Severe prostate infection that took over a year to overcome.

3.   1988 Mild Erectile Dysfunction. Family doctor would not check testosterone level but did check PSA .5. Lower sex drive made me believe my testosterone level was low.

4.   1995 Peronies. Went to Dr. Shappley with prostrate infection and had him check the penile curve that had recently occurred. He said I had Peronies. Put me on 400IU of vitamin E three times a day and Potaba. Curve went away in about 18 months.

5.   1996 First noticed loss of penile size. Lost approximately 1.25" from approximately 5.5" before Peronies.

6.   1996 first TURP for prostate. 9/1997 second TURP. Did not like the effects of the prostate drugs Dr. Shappley put me on. Caused fatigue, and other symptoms. Started Saw Palmetto and stayed on it until the January 2008.

7.   9/1997 Asked Dr. Shappley if he could do anything to fix the effects of Peronies. He said all he could was make a girl out of me. He was joking but I knew there was nothing he could do.

8.   1996 Started on testosterone replacement therapy (TRT). The first few months Dr. Shapppley had me on shots and then changed to gels. I told him the gels were not working. He said. "Jack lets get the old balls working."  Stayed on gels for years. Made my blood thicker and arthritis doctor did not like my thick blood.

9.   1998 Erectile Dysfunction worsened. Dr. Shappley put me on Viagira the second week it was on the market. Little Help.

10.   2004 Scope of bladder after prostate infection to see if I had anything in the bladder causing problems. All he found was some infection that finally cleared up after switching off Cipro.

11.   2004 Had tried V, C and L for Erectile Dysfunction. Little help. On a trip to Mexico Dr. Shappley suggested I try Uprima that was not available in the US. The combo with Levitra help a little.

12.   2004 Had a Color Doppler. Erectile Dysfunction had gotten very bad. Had a Venous Leakage. Dr. Shappley suggested I try PGE1 (Edex) No help at 60mg. (Shot and ½). Then his assistant wanted me to try Trimix. Selling trimix out of office for $10.00 cash per unit. Started with 4 units. No help. Went back to Dr. Shappley and saw his assistant again. Got a limited prescription for trimix. When asked where to get it filled said they did not know. When I asked where they got trimix got the run around of like Ohio or somewhere.

13.   2005 Went to Dr. Conrad. It had been almost 2 years and no DRE. PSA was 1.2. After a DRE and PSA and consultation Dr. Conrad gave me a prescription for trimix and told me I could get it filled at Peoples Pharmacy. Tried different dosage, no effect. Went up to the strongest dose Peoples had and a full 10 units. No help.

14.   2006 After discussing my options after the failed attempt at trimix Dr. Conrad suggested an implant. Gave me a video and set up the surgery for late October 2006.

15.   10/2006 Chest pains. Had to have a stent placed in my heart. Dr. Shiakh said wait one year before implant surgery. 12/06 Chest pains again and another stent.

16.   10/2006 Asked Dr. Conrad what can I do for sex. I need help. He gave me a prescription for a VED. Met the rep in his office and started VED. I thought more was better and caused an abrasion. Took weeks to heal.

17.    10/2007 Dr. Conrad attempted to do the implant. During the procedure he penetrated my urethra in the corpora at the head. Surgery aborted because of possibility of infection.  After follow up Dr. Conrad said come back January. Dr. Conrad explained that corporal fibrosis from trying the shots for Erectile Dysfunction caused the instrument to move when he tried to push it through.

18.   10/2007 Dr. Conrad was giving me 300mg of testosterone every three weeks. Not helping. Talking to Dr. Brewer, my primary doctor, and explained the problems I was having he said he would help me with my testosterone. Blood work after 3 weeks showed low 120 on the range. Dr. Brewer said 600 my every 3 weeks. It took 2 shots to get that much. Dr. Brewer at my request changed the shots to 300mg every 10 days. A felt better for the first time I long time.

19.    1/2008 Follow up with Dr. Conrad. DRE and PSA of 1.7. I informed him I had back surgery coming up the end of January. He said come back in 6 months.

20.   1/31/2008 Back surgery. Dr. Fernandez. L4-L5. He also suggested I wait about 6 months before implant surgery.

21.   5/2008 Current blood work for testosterone still shows low. Dr. Brewer has increased my shot to 400mg every 10 days.

4/2008  Went to Dr. Wake the head of The Urology Department at the University of Tennessee Medical School, Memphis. Was less than impressed. He basically tried to talk me out of an implant. When I was through asking questions it was obvious that he did not have the skills I needed. I knew more about peyronies, implants and testosterone replacement than he did.

Was using it all wrong. Applying too much pressure and holding it for a long time. After the failed implant I found the Peronies Society web site. There I was talking to Old Man an avid fan of the VED. He gave me a routine of pump and hold for 10-15 minutes.
I use the VED most days for exercise of the penis. It has helped. And for sex I only pump to about 80-90% erect for better feelings and use an Osborn ring for sex.
The men on the Peronies Society web site recommend the VED for Peronies and corporal fibrosis. This routine has worked for me.
I have a Love/Hate relationship with the VED. It took a while to learn how to use it properly. I hate the constriction rings, I have to use a real tight one and it cuts way down on the feelings. I also have to watch how long I have it on.

May 21, 2008

6/3/08 Appointment today with Dr. Yari Walzer. Normal office check in routine gave the nurse a copy of my Urology History. I had my list of 16 questions.
Dr. Walzer came in the exam room and introduced himself and said "Jack I have read your history and I can not help you. You need to go to Vanderbilt or Texas. You do not need any more problems and I do not need the money. You need a doctor that does at least 100 of these operations a year and in this area doctors only do one or two a month."

We talked a bit more and he suggested that I probably needed the resection surgery on my corpora's. Then he did an exam of my penis.

After the exam we decided on a referral to Vanderbilt and I would hear from him in a couple of days or so. He also offered to do the follow up locally.

My conclusion of Dr. Walzer was that he was honest, upfront and wanted the best care possible for me. Will continue to use him for Urology issues locally.

6/10/2008 Dr. Walzer's nurse Kitty called this morning. Referred me to Dr. Douglas Milam with Vanderbilt. Called this morning for an appointment. Recoponsist said his nurse would call me in a few days to make an appointment.

6/19/2008 Received appointment card from Vanderbilt for 8/22/08 along with Patient Registration forms. Will get medical records from Dr. Conrad and the Hospital to carry with me to Nashville.

6/30/08 Peggy, Dr. Milam's nurse called and rescheduled my appointment for exam and pre-op to July 25th at 1:15.  She went ahead and scheduled surgery for August 14th.  Wants me to fax medical records when I get them along with cardiac clearance.
Peggy said that Dr. Milam does at least 3 or 4 of these a week and that I may not have to have a radical corporal procedure (will be decided at the exam).

7/10/08 I finally received my records form Dr. Conrad. Faxed 25 pages to Peggy at Dr. Milam's office that included one page cardiac clearance from Dr. Shaikh.

7/25/08 Vanderbilt Hospital, Nashville TN a 3.5 hour drive from home. Driving instructions put me right in the hospital. Checked in at the Urology Center was greeted promptly and finished filling out paper work.
In the exam room I met Todd Doran PA-C for Dr. Douglas Milam. We went over my history and he answered most of my questions before I could ask. He explained that they use the AMS 700 LGX and use the pubical approach. He did an exam of my penis and said everything looked good for surgery.
After the exam by Doran Dr. Milam came in and introduced himself. We talked about my history and what to expect and not to expect from the implant. I asked about the other models of the AMS 700 and he said they only use the AMS 700 LGX and are in the process of publishing a paper next year to get all doctors using the LGX. He explained that the surgery was 75 minutes and I would only be in the hospital over night.
Dr. Milam did a stretch test on my penis and showed me how much erection I would have. He explained that because of the Peronies Scar the penis would only stretch so far. I estimate I will end up with approximately 4 inches and normal girth. This is down from the 5.5 inches before Peronies. I told Dr. Milam that so long as I have a useable erection that is OK. He wanted me to know what to expect and that would be all I could get back.  (Note: My wife and I already knew that I could not gain back the size before Peronies. She explained to me that women are more interested in girth than length and that most of the feeling during sex come from girth.). Dr. Milam also said to continue daily use of the VED for exercise and that it would help the outcome, but to be careful not to hurt or bruise my penis and to stop the day before surgery.
Dr. Milam explained that I would see Todd Doran PA-C most of the time but he would do the actual surgery and would be available if needed. Post op will be in two weeks 8/27/08 with Doran and again in six weeks. No sex for six weeks until Doran teaches me how to use the implant. The final Post Op will be with Dr. Milam in 3 months.
Dr. Milam said he had never punctured a urethra and had seen only one other. He assured me that he would take all precautions to make sure the urethra was not punctured and I would have a successful outcome. He said the only complication he could think of was if they could not get a Foley Catheter in because of the previous urethra puncture. I told Dr. Milam I had a catheter with back surgery in January and he said everything should be fine.
After the exam with Dr. Milam I had to empty my bladder for a bladder scan and then to the Nurses office to schedule my appointments and get pre op and post op instructions. Then down to the lab for blood work and anesthesia work up.
I arrived at the parking garage at 12:45 and was on my way home before 4:30. Wait time was a minimum from other experiences and the staff was all professional and I was generally impressed that these people know what they are doing and how to do it.

Posted on Implant Group 8/13/08
As most of you know I was scheduled for my implant at Vanderbilt for tomorrow.

7/27/08 I was eating lunch at the local O'Charleys and cut a bit larger than usual piece of prime rib. With all going on with family and friends I swallowed before I was ready.  The meat stuck in my esophagus just before entering my stomach. Went home and tried everything I knew to get it to go one way or another. NO LUCK.  2:00 in the morning my wife took me to the local ER. They tried twice to get it out. The second try they put me to sleep. Woke up and still there.  They transferred me to the main hospital in Memphis and brought in a Surgeon. Tuesday about noon they put me to sleep again and tried with a rigid scope. No Luck. Seems that I am longer than normal, esophagus that is. They were so aggressive that the doctors collapsed a my left lung and put my heart into A-Fib. Woke up in recovery with a doctor cutting in my side to put in a tube, "called him a couple of bad words." Then they brought in a eart doctor. Two day of hell in the room with at least six (6) IV's. Then on Thursday afternoon back to surgery. The Dr. marked my chest that morning just in case they had to go after it. This time it went through when they put the tube down. Back to hospital room NPO with a stomach pump. I was on ice chips until Monday morning. Liquid diet, did not know so little would make you feel full. Saturday morning (I think) wife and I had a Come to Jesus meeting with all the Doctors. On what to expect. Tuesday afternoon the surgeon and then the heart Dr released me to go home. While in the hospital I asked about the implant surgery and they said postpone it for a couple of months. Had a long talk with heart doctor before leaving the hospital and he assured me that in a couple of months I could get the implant but first I had to get the A-Fib fixed. Went to heart doctor today and the A-fib is much better. Wants me to wait a couple of weeks and if the meds do not fix the A-fib they will shock it back. I've lost 15 pounds. When I came home the next morning I looked in the
mirror and did not see myself. What A Shock. With heart doctors blessing I have rescheduled the pre op at Vanderbilt to October 24 and the implant to October 30. I WANT MYSELF BACK BY THE END OF THE YEAR! If it has not been one obstacle it has been another but come "Hell or High Water" I am going to get the implant.

8/21/08 Epilog: Went to Dr. Shirwany's for my pre op before the cardiac conversion. Nurse checked my blood and that was fine. Went to the exam room and took my BP she said I hear a normal heart beat. She went and got the EKG and sure enough my heart was back to normal rhythm. Dr. Shirwany came in and was almost as happy as my wife and I about not having to do the Cardiac Conversion. For the arrhythmia in the hospital they added Cartia, a calcium channel blocker and Amodarone to the BP meds I was already taking, Ramipil, and ACE inhibitor and spironolactone are my normal BP meds and have controlled my BP well. I told Dr. Shirwany that in my past calcium channel blocker caused me lots of problems and fatigue and not sleeping were the worst. I asked if I could get off the new meds because of the side effects. He said that for now I needed these but he would cut the dose in half. He also said that in mid November after the implant I would ware a monitor for few days and then reevaluate the meds. I signed a release so he could get the records of my last cardiac cath 7/07 and other history from my previous heart doctor. He said after he received these records he would mail me a cardiac release for the implant surgery. In the hospital the surgeons almost killed me. If it had not been for Dr. Shirwany I don't think I would have made it. IMHO

Went to Dr. Walzer for semi annual DRE and PSA. DRE was normal.

9/25/08 Dr. Walzer's office called with results of PSA. Result was 1.1 that is normal. Asked her to send me a copy.

10/15/08 Phyllis with Dr. Milam's office called and wanted to move the surgery up a week. Pre op is now scheduled for 10/22/08 and surgery for 10/23/08 @10:30. Will drive up to Nashville the 22nd and spend the night at.

10/16/08 received cardiac clearance from Dr. Shirwany and faxed it to Phyllis 615-343-9815.

10/22/08 Vanderbilt Pre Op.
Pre op went well, had all my paperwork in order and a cardiac clearance letter from Dr. Shirwany. EKG was normal and cleared for surgery the next day.

10/23/08 Vanderbilt Hospital – Penile Implant
Check in time was 10:30. Went to pre op holding room and had 2 antibiotic IV's. Dr. Milam came in about 1:00 we talked and he said everything looked fine. A few minutes later one of his assistants came in and we talked for a while. I mentioned the previous surgery where the Dr. penetrated my urethra and he said he knew all about it. I believe that Dr. Milam and staff had a pre op meeting and knew my history well. About 2:00 I was taken to surgery and Dr. Milam had a few words and then I was asleep. Woke up about 3:30 in recovery and felt like I had to pee real badly. Had a Foley Catheter and nurse said everything went as planned and the wanting to pee was normal. My wife had meeting with Dr. Milam after surgery and he told her everything was OK but I would be in pain for a while. About 4 or 4:30 Dr. Milam came into the room and said everything went well and he thought I would be well pleased with the outcome. He said I would have some asymmetry because of the scar tissue from the previous attempt but I would hardly notice it. The next morning about 5:30 the catheter was removed. Had a light breakfast urinated on my own and was on the way back to the hotel by 9:00. We arrived home about 2:00.

To say I am satisfied with the results to date would be an understatement. Just the look on my wife's face when I got back to the room told me everything was OK. She has supported me all these years and I never saw her happier for me.

My testicles are black and blue, but that was expected. The pump is in front of my right testicle and I have to pull it down to the center every day. Dr.said it would be easier for me to get to there. I have the AMS 700 LGX. If I am reading the paperwork right I will have an erection of about 12 CM (4.7 inches). If I get a 20% increase over time I will be within ¾ inch of my pre peyronies size. Right now I can tell the flaccid state is larger, no more turtle effect. This is more than I expected before surgery I would have guessed about a 4-inch length. I know size is not everything we have been dealing with peyronies about 13 years and learned length is not where it is with sex. You can adapt to most any size and still have fun.

A better than expected length is credited to the proper VED exercise given to me by Old Man of peyroniessocitey.org. That year of proper VED exercise gave me a better than expected outcome.

11/5/2008 Post Op with Todd Doran, Everything normal. Still sore. Pump is in place so I do not have to pull it down anymore. Advised to remove the strips on the incision the next time I shower (looks good after removal). No tub or hot tub for another 4 weeks. Lifting restriction of 15 pounds.

Had to wait in exam room for about 90 minutes. Nurse came in and said they were having a problem with an anther patient. Offered juice while I waited. Told the nurse wait would be ok I would appreciate it if I had a problem.  Left home at 11:00 and back by 8:30 after stopping for dinner at Cracker Barrel.

12/04/08 Activation: I was at Vanderbilt at 8:30 this morning for my implant activation. Doran showed me where the relief button is and them activated the pump. He then had me pump it up. For the first time in years I had an erection that stood straight out and stayed on its own.
AMS that gave full instructions on how to use the implant gave me an "owners manual". I was advised to pump up the implant 2 times a day for at lest 5 minutes until the next appointment in 3 months. I was told to pump the implant up at least 3 rimes before trying to use it. I now know why the first few times you pump the implant it stings some for a while. When I arrived home I showed my wife the erection and let her feel of it. Feels just like an erect penis of a 20 year old. When we went to bed I pumped it up again. Lying on my back with my penis sticking straight up and hard gave me a feeling of being normal again. The actual measured result in the office was 4.25 inches. I was informed that over the next 3 months to a year I should gain at least another ½ inch. This puts me closer to my pre peyronies of approximately 5.5 inches. The VED was a "gods send" over the last years. After I found the proper exercise for peyronies I gained some size back. Lost about a quarter inch from VED to implant. My Venous Leakage, and Corporal Fibrosis was so bad that I had to use a very tight constriction ring that sometimes did not hold, but I don't know what I would have done without it. I will give the VED a proper send off New Years in a Barn Fire. Took me a long time to get here. In my time I would have had the implant years go. God's time was now. It has been a difficult road but here I am happily lying on my back with a hard on that a 20 year old would envy. I have a "date" with my wife to put it to use tomorrow after noon. Can hardly wait.

12/5/08 Date with wife: All went well still soreness when I pump up the implant and it interferes with feelings. This will all heal with time. Learning curve with use but that is part of the fun,


1/5/09 One-month post activation. The implant is expanding into the head and have gained back some length. The last month has been a learning curve, tried to just not push it. Today when activated to full length there is a little soreness. Sex the last time was great.

There was still some soreness Christmas but New Years it was 98% gone. Feelings are returning. Great sex new years!!!

2/19/09 This afternoon I decided to take a nap. While lying there I pumped up my implant. I kept pumping about 20 times after the bulb got hard. My girth got sore and a little soreness at the glans. Then I noticed the best erection I have had scene the implant. Like my doctor said it takes 3 month to a year to get the LGX to full size. I do not let the soreness keep me from using the implant. It is not that bad. The first few weeks I was real sore, but that is the price we pay for success.

3/6/09 I was at Vanderbilt with Dr. Milam this for my three-month post activation

In the three months science activation my erection has become 1/2 inch longer!!! Dr. Milam said that my implant, AMS 700 LGX, would continue to expand and that most expansion is between 6 and 18 months.

The proper instructions that I received post op, which I followed, has my pump in the proper easy to use location. I mentioned that some implant patients did not receive these instructions and had trouble with pump location. He said that by the end of the year the paper he and his team are publishing would advise all doctors doing implants to use the LGX and give patients proper post op instructions. This is just one of the instructions that patients did not
receive. To say that my wife and I are happy with the implant is an understatement. I must remind those considering implants that it is a choice of last resort after all else fails. My peyronies started in 1995 followed a multitude of problems, low testosterone, Erectile Dysfunction, loss of nighttime erections, venous leakage and corporal fibrosis.

Corporal fibrosis was caused by injection therapy for Erectile Dysfunction. I tell men never put a needle in your penis for Erectile Dysfunction. Some have good luck but most, like me, end up with problems. My one-year follow up is in October. Dr. Milam said I would see better and better results.

I owe a lot of my excellent result to the proper VED exercise I did a year before the implant.

4/3/09 Dr. Walzer, Prostate Infection. DRE and levequin.  This was my first trip to Dr. Walzer post implant. (He is the Dr. that referred me to Vanderbilt). He did a penile exam and pumped up the implant and was impressed at the difference. I had a spot of blood in my underwear and he wants to do a kidney ultra sound 4/22/09

4/22/09 Dr. Walzer's. Kidney and bladder ultrasound. 2 stones in left kidney. Reflection in bladder and slight elevation in urine.  Have to go to the hospital for a flat panel x-ray and a cistocope 5/7 to check the shadow in the bladder. May have to have a lipotripsy for stones.

5/7/09 Dr. Walzer's/ X-rays from 5/4/09 show two (2) stones in each kidney. Scope of bladder found no problems. Prostate enlarged and he wants me to start back on Saw Palmetto. If stones do not pass on there own come back in 6 months and have kidneys x-rayed a week before. Bring old and new x-rays next visit. 11/10/09 1:00 PM.

5/31/09 Had a fever and back pain like kidney stones trying to pass. Methodist Hospital Germanton ER. Waited a long time for doctor to examine me threatened to leave after 4 hours, then I got attention.  CT scan showed. "No acute findings. Bilateral, nephrolithiasis, nonobstructing. 2 on R and 3 on L with largest 7mm on left. Penile prosthesis without acute findings. No acute findings. No Free fluid/air or fat standing.

I was given 2 antibiotics IV, IB for fever and an Rx for antibiotics. And sent home.

7/20/09 Dr. Shirwany's for heart follow up. Every thing looks good. I still have trouble with difficult ejaculation and asked him about going off the diuretic. My research showed that it could be part of the problem and he agreed. He did not see any problem just watch my BP and if it rises increase the Altace. OK to start Saw Palmetto.  Blood work for cholesterol.

8/23/09 My implant was 10 months ago today. The implant continues to expand in length and I have gained back to 90% of my length before peyronies. Sex with my wife is wonderful. I can stay erect as long as I/she desire. With the AMS 700 LGX expanding into the glans (head) I do not have the floppy head that a lot of men complained of before the LGX was available.  Once in a while I still have a little soreness in the glans as the implant continues to expand but the soreness is not bad enough to interfere with sex.

All I asked Dr. Milam for was a usable erection. I got that and so much more. I never dreamed I would get about an inch of length back. Flaccid size is impressive I was never a shower. Now when I look at myself in the mirror after a shower I still say to myself, is that me.