The Beginning Of My Journey

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Jimbruski

Today I went to my first appointment with prominent Peyronies physician, Dr. Lue.  He carefully listened to my story of my Peyronies and also ED.

An examination followed including ultrasound.  He was able to see significant plaque at the base and along the left side of my penis resulting in a left lateral bend of roughly 75 degrees.  

We also discussed my ED, and length of time experiencing ED.

After additional examination Dr. Lue offered the following as treatment options:

1.) Increase my Cialis dose significantly to see if I can in fact get a good erection.

2.) If the Cialis works then Dr. Lue felt that additional Xiaflex treatments would help my Peyronies significantly.  If the Cialis did not help then why go through Xiaflex treatments to get a straight penis not capable of intercourse.  (He also felt that I could regain my original size if the Xiaflex worked.)

3.) The third option would be penile implants.  If the Cialis does not work and Xiaflex is not an option then penile implants would address and cure both.  Implants are successful but do carry their own set of issues.  


So those are my options.  I look forward to your comments and input.

In defense of this site, I went into this appointment fully armed with knowledge and courage thanks to you people.  Nothing Dr. Lue said was new or a surprise to me.  Thank you.

Dr. Lue is an exceptional physician.  He is a Peyronies icon and for those on the West Coast of Amercia he is the guy to see.  And he is hilarious, absouletly hilarious.

Thanks,

Jimbruski  

NeoV

Thanks for the report. He seems very optimistic and I'm sure you appreciated that. On the down side, he does seem to advocate only drugs and Xiaflex (which very well may work). An implant may be a good solution too.

I'm glad to hear he could identify the plaques. What do you think you'll do next?

I wonder if he has stopped favoring pentox in recent years.

Jonbinspain

Jim;

The Cialis is a good idea. As you say he wants to see if you can get and maintain an erection. Before my surgery, I was checked for blood flow in and out of the penis using a scan.

If you cannot either get or maintain an erection with the aid of say 20mg of Cialis,  then you obviously have severe ED. This could be caused by venous leakage or even corporal fibrosis. Both of which are hard to deal with.

If it comes to it, think carefully about Xiaflex. It's very expensive, and as Dr Lue said IF it works!..

Jimbruski

NeoV and Jonbinspain,

Thanks so much for the input.  The great thing about this site is that you can ask for help and receive it from people around the world who really care.

NeoV-  Yes , Dr. Lue was very optimistic.  We didn't even talk about Pentox.  The ultrasound enabled him to exactly identify the plaque location which he will inject if the Cialis works.  Along with the Xiaflex he wants me to do a lot of stretching which will help break down the plaque and give me back lost size.

Jonbinspain-  I did ask about venous leakage and he wanted to see if the Cialis worked first.  I guess if there is venous leakage or corporal fibrosis I would still be looking at implants .  Dr. Lue is checking my insurance to see if the Xiaflex is covered.  If not......well we'll cross that bridge when we come to it.  

Pfract

It's always nice to see when one has a pleasant experience with a physician. I was close to Dr Lue, but I went to San Diego, to see Dr Irwin Goldstein, of SDSM. He too, was not a big fan of pentox. Although I went there to seek help on an issue different from yours (penile fracture). Try to see what happens with cialis, because the implant route can be a harsh one sometimes...  

Jimbruski

Thanks pfract,

Yes, I hope the Cialis works.  Implants, although an option, are a last ditch decision.  There's no changing your mind after that surgery.

I'll post more as I experiment with a high dose of Cialis .

Jimbruski

Jimbruski

Well, I've tried two rounds of high dose Cialis which has produced a mild erection both times.  I also added Citrulline to the mix.

The erection is probably good enough for intimacy but Peyronies won't allow this so.......I'll give it a couple more rounds then decide on Xiaflex or Implants.  At this time I'm leaning toward Xiaflex.

I appreciate any input on ways of producing a stronger erection.  I am also, per Old Man, using VED regularly.

Thanks,

Jimbruski  

FriskyDingo

Horny Goat Weed is known as the 'natural' viagra. When I used it pre-peyronie's it worked too well. I mean girls who I usually would never look at I was suddenly drooling over. And my erections were intense and occuring at the worst of times... all the time.

I dosed at 10% iicarins per 1000mg tablet. I took about 5 days to kick in, which is normal.

Jimbruski

FriskyDingo,

Well I tried the Horny Goat Weed and although there wasn't a great difference in erections overall there was a noticeable difference in nighttime erections.  This was however a good sign and I will continue with the supplement.  Thanks for the suggestion.  

Regarding the Xiaflex injections, I'm still waiting for the insurance to approve the procedure.  

Jimbruski

Jimbruski

Well, it looks as if there will be no Xiaflex injections.  My erection quality doesn't warrant straightening my penis if it will be of no use after straightening.  Thus,  I am looking at an implant.  The implant, as the Dr described it, will serve as my bionic erection and also straighten  the Peyronies.

Any comments or thoughts are certainly appreciated.

Pfract

Well... was that what the doctor told you or you have tried other medications and therapies?  

Jimbruski

Pfract,

I've tried Viagra, Cialis, traction, VED, supplements and most recently high dose Cialis (40 mg).  Nothing works and it's the pits but that's how it is.  

However, I appreciate your response as it makes me rethink everything......  Yes the doctor recommended this if the high dose Cialis didn't work.

Jimbruski

Pfract

Sucks... That's what it is..  Now you should start looking for a senile implant surgeon that you are pleased with, and search all the information possible... I noticed you are on FT too?

Jimbruski

Yes pfract, sucks it does.  But it is what it is.  

I am on FT.  I'm trying to collect all of the information I can on implants.  I thought I was going to just be dealing with peyronies but this implant deal was a bit of a surprise so I've had to change direction.  The surgeon, Dr. Lue, recommended an AMS700CX implant because it helps guys with plaque or fibrosis issues, such as myself.

Have you experienced implant surgery?  I'd appreciate your thoughts!

Thanks,

Jimbruski

Pfract

No, I had penile fracture and I have ed now. I am considering travelling the implant route also... My story is posted on a thread on this board, somewhere. As for my thoughts on your situation I need to come back tomorrow with more time to give you a proper answer.  

Jimbruski

Looks like Dec.1 will be my surgery date for an implant to cure both ED and Peyroniees.  I'm very apprehensive and yet excited at the same time.  Will send updates as the time approaches.

Jim

Jimbruski

Well, its official.  I'm part of the implanted bionic brotherhood.  Surgery was yesterday at 11:00.  Woke up from surgery to just a slight dull pain but nothing serious.  The nurses couldn't believe that I had so little discomfort..  I ate a good lunch and drank plenty of water.  I do have a catheter which will come out tomorrow but again it causes me no uncomfortable feeling.

I did take one pain pill to be on the safe side but nothing since.  What little pain I did have is slowly diminishing.

I'm writing this at 02:00 because I'm so excited that the procedure is over and I'm feeling so well, but I'm not going to get too cocky and say that I will be pain free.  I'm not that naive.

To my knowledge the doctor put in an CX and the procedure was done scrotially.  Dr.Lue assured me that the Peyronies and implant would straighten out the Peyronies.  Since Im all still bandaged up I can't verify that but I will report that to you as soon as I find out.  Hi also confirmed that there would be no size loss.

That's all I have to report for now.  I will continue to report as the healing process begins.

My thank to all of you for your support, prayers, and well wishes.  This is truly an amazing site!!

Jim

james1947

Wish you fast recovery and happy usage ;D

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Jimbruski

Day 2:  The day started at 0600 when a team of three surgeons came into my room to see how I was doing.  These same three surgeons were in the operating room during my surgery.  Bandages were removed to reveal heavy bruising and on my penis and scrotal area.  But still no real pain to speak of.  The catheter was removed and I was left to drink plenty of water so that I could pass the piss test and leave the hospital in time to meet with Dr. Lue in his office.  

Dr. Lue examined me and was very satisfied with the outcome.  His instructions to me were to shower daily but only let water run over the groin area.  No scrubbing with soap, and to come back in five weeks for activation.  Dr. Lue installed the CX model because of my Peyronies condition.

My wife and I left Dr. Lue's office and began our journey home.  We live about 260 miles from San Francisco.  The ride home was uneventful except for one stop to grab a bite to eat.  It was then that I realized that sitting in a car for two hours really made getting out of the car difficult. It was like I just couldn't stand up without a lot of pain, but we finally made it and I took my second pain pill.

The remainder of the ride home and that evening were fairly easy.  My penis is swollen some and the scrotal sac is bruised.  Using a public restroom was my challenge for the day and now I understand going into a stall instead of using a urinal.  Had I not learned that little piece of information from FT I would likely have peed all over my shirt.

More to come..................

Jim

LWillisjr

Jim,
I remember why you first joined the forum and the journey you have been on. Very hopeful for you and praying for a great outcome with the surgery. You expect your bruising to increase even for the next day, and can take 7-10 days to go away.

As I have said many, many times...... Be patient, take it easy, follow the doctor's orders, and be patient for full healing to take place. Looking forward to your 'activation'  ;-)  
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Jimbruski

Days 4 and 5:  Both of these days are identical.  Absolutely no pain and I up and doing things as if I had never had the procedure done.  No heavy lifting though.

I am of course aware that there is swelling and bruising which seems to be getting better each day.  I've been getting in some walking and take regular rides in the car doing errands.

Because of the distance between myself and Dr. Lue, today I will make an appointment to see my local urologist for a checkup.  He will then communicate with Dr. Lue on his findings.

Also, I forgot to add in my previous posts that my implant was an AMS CX  18+3.5 cm.

My penis went from 90 degrees left with Peyronies, to dead straight with this procedure.  However, until activation I'm unsure of what it will be with an erection.

If you are suffering with ED and Peyronies please consider this as an viable option.  I'd be happy to answer any questions you may have.

Jimbruski

Lucketts



Lots of luck with the healing process and getting back to normal, Jim.  You couldn't have picked a better urological surgeon than Lue.  Seems that 1/2 the research articles written on peyronies and treatment either bear his name or Levine's.

Jimbruski

Day 8:  Today I returned to work with no discomfort or other issues except for the itching which began yesterday.  I just keep sneaking a scratch now and then and it feels soooo...good!  The itching is not too bad right now but I'm sure it will make me crazy before the hair is all grown out.

The swelling and bruising of my penis and scrotum are almost back to normal.  A few tender areas still exist but I only notice them if I touch the area.

I'm already really getting anxious about the activation date of Jan. 6th.  Can't make up my mind whether I should take a pain pill on that day, as some of you have.

Will return with more updates later.....

Jim

Jimbruski

Well I'm 12 days post surgery and I feel GREAT!!  All of the bruising and swelling are gone and I have no pain.  The incision is healing nicely and shows no sign of infection.

I'm still getting acquainted with the pump, but by doctors orders will not mess with it to much until activation day.  I know that this is different from what others have been told and I don't know why the difference.  I do know that the pump is sitting nicely in my scrotum.

My experience in public is pretty much like what others have reported.  Some glances from people who have "noticed the stiffy", as the semi-erection the Dr leaves you with during healing makes its presence.

I still have four weeks to go before activation.  I know i'm going to get anxious but also know that I must be patient.

More to come......................

Jimbruski

14 days in:  

I'm at two week post surgery and time for my first checkup.  Because of the long travel to San Francisco and Dr. Lue, I opted to have my local urologist perform the checkup.  The checkup went smooth and the doctor was surprised at my lack of pain or discomfort.  All in all everything, the incision, absence of peyronies, and bruising/swelling, looked good.

I've finally graduated out of the jock strap and it feels good to have the junk hang free.  Sleeping is a bit tough as I'm typically a stomach sleeper so the nights are not as restful as normal.  Sleeping on my side is the best method so far.  

The next goal is to make it to the activation date without wanting to try out this new toy.  Just can't wait.

Do I have any regrets so far................, not a single one.  I am completely pleased with the entire process and outcome.

To see my penis straight feels so good.  To those suffering from ED and Peyronies, please consider this as an option.  I would do it again in a heartbeat!!

JohnWright

Congratulations! Yeeeeeehaw!

John

skunkworks

Detailed journals like this are a huge gift to the forum, thanks very much for doing this.

Further down the track, some pre and post erect length stats would be of great interest to those considering an implant.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

Jimbruski

Thanks JohnW and skunkworks for the nice thoughts.

I will certainly include pre and post surgery size differences.  I'll have to wait for activation before I can accurately determine post op size.

Thanks again,

Jim

nemo

I'm almost as excited for your activation day as you are! Can't wait to hear the report, and I suspect - good news!

Again, thanks for sharing your story - it gives hope to all of us, especially those with very difficult to treat cases.

Merry Christmas,
Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

Jimbruski

I'm eagerly awaiting my activation date of January 9.  In the mean time I'm still walking around with a little stiffy, pointing straight out, no peyronies and visualizating what it will look like fully erect.  I'm hoping for a good solid, every time, 6 inches, but strangely I'm not to worried about the size.  A straight erect penis is good to me.

Will post again on the 9th or 10th with the results of the "all up test" (activation) along with some pre and post size information and hopefully the ultimate test results,  My wife is eagerly waiting also.

Jim

Pfract

Hey Jim. Shouldn't you keep your penis straight up on the recovery? Or it's just on the first days?  

Jimbruski

Pfract,


My surgeon never said to maintain any certain position during healing, however the jock that they have you wear for the first two weeks after surgery certainly favors an straight up position.  It was also the most comfortable position for me.  After the first couple of weeks, when the swelling has subsided some, it feels comfortable to let it seek its own position although the straight up position, with clothes on, was favored for me.  With loose fitting clothes on or nude its straight out 3:00!!

I appreciate the question and your interest!  Are you headed toward an implant?

Jim  

Pfract

Oh boy..  That's a tough one. Lots going on I'm my life right now, and it's being hard to get those 150 bucks for the monthly cialis. At the same time I am yet to go to America to see either Dr Eid or Kramer and I am sort of ignoring the problem for some time to recoup a bit mentally. I am also pissed at several things on FT forum that I doubt will change in the near future, even though I tried. Also... I am thirty so I will need several replacements throughout my life? Also... The question of: maintaining size, using traction and VED to retain or regain size, and recovery seem somewhat confusing to me.

I don't know if this post feels confusing, but I think it is. I apologize. Feeling down a lot and I guess I've mixed several things on the Post. :/

Jimbruski

Pfract,

Sorry to hear that you're feeling down.  Definitely take the time to get your thoughts together.  Your posts and guidance are ones I pay close attention to as I trust your opinions.
PM me on your FT concerns.

Take Care,  

Jim

Jimbruski

Well guys, today was the "All Up" activation test.  The moment of truth.  The doc pump the implant ten times with zero pain....., and Yee-Haw did I like what I saw.  I'm at 5.75" and not fully inflated.   I'm plenty happy with that and did I mention.......Yee-Haw am I happy.  

Gotta go find my wife............!!

I'll report more later.........size, loss or gain, etc.

Jim

Pfract

That is so awesome to know!!!!! Congratulations dude!!!!! :D  

Jimbruski

Thanks pfract!!  It is a good day!! :D

Jimbruski

So, to recap:

I came to this site about a year ago because of my Peyronies.  Peyronies came into my life about 2 years earlier and though it was a concern I chose to just live with it.  After all I had suffered with ED for about seven years so intimacy was not a big part of my life.  I had a bend of about 75 degrees left and slightly upward.  I had already gone through three rounds of Xiaflex treatments with no improvement at all.  At that point my local urologist, Dr. Brett Lebed, referred me to Dr. Thomas Lue at the University of California at San Francisco.  Dr. Lue is a renound surgeon and expert in the field of Peyronies.

My first visit with Dr. Lue was extremely enlightening.  Although there was no doubt in his mind that he could cure my Peyronies without an operation, he was more concerned with the ED.  After all, he said, "whats the use of curing your Peyronies and giving you a straight penis if you won't be able to use it for intimacy".  An implant would cure both issues.  At that point he concentrated on the ED.  

We began ED treatment by addressing everything that I had tried prior to seeing him,  VED, pills, and psychological counseling.  None of these worked.  Injections were of no interest to me so I didn't try those.  I had had no nighttime erections or morning wood in years. Dr. Lue put me on 40mg Cialis to see if that would produce an erection, but it did not.  Dr. Lue changed his focus, after first speaking with me first, to implants.  

I began to follow two forums, The Peyronies Forum and the FT Forum.  The FT forum focuses more on ED issues and implants.  I began to educate myself regarding implants as a solution to my situation.  It was not long before I knew that an implant was in my future.

I scheduled Implant surgery for December 1, 2016.  This gave me several months to further investigate implants and get answers to the many questions that I had.  

1). Is this a common surgery
2). What are the success/failure rates
3). What are the long term affects of implants
4). Is this a painful surgery
5). What about recovery time
6). What are the possible complications
7). Did I have the right doctor
8). And more questions not listed here.....

Other than the fact that the implants only last 10 - 15 years, then need to be replaced,  and that there are a small percentage of failures of parts of the implant, there were really no concerns, and I felt comfortable moving forward with the procedure.

December 1 arrived and I was wheeled into the operating room.  I was so confident that I had done my homework on implants I had no apprehension about my surgery.  Next thing I knew I was waking up in recovery.  It was that quick to me but the operation took about 1.5 hours.  I was implanted with an AMS 700 CX.  The CX is the model used to help straighten out the Peyronies.        

At this point I need to clarify some necessary information:

Pre- peyronies I was 6.25" with a 4.75" girth.
After years of ED I had atrophied to about 5.5", with the girth around 4.5".  I stayed the same size throughout my bout with peyronies.  During peyronies I began to use a VED regularly in the hopes to save further size reduction.  So, going into surgery for my implant I was 5.5" with 4.5" girth.

During recovery I had absolutely no pain (no doubt still under whatever the Dr gave me during surgery).  Catheter in, I'm wheeled into my room for my evening stay at the hospital.  I slept like a baby that evening and woke about 5:00 the next morning to some minor pain.  I took one pain pill and waited to check out.  I had an appointment that same day (the day following surgery) to see Dr. Lue.  This was also the first time I had seen my penis since before surgery.  There was some bruising around the entire scrotal, penis area, but still no pain to speak of.  Mine was a scrotal incision and so some scrotal swelling was expected.  There was no sign of Peyronies!!

Following my Dr appointment my wife and I loaded up for our 275 mile drive home.  The trip was relatively easy except for our one stop to use the restroom.  After surgery the Dr usually leaves you with a 30% erection to aid with healing.  That along with some swelling left me with one direction in which to pee........3:00!!  There's a Red Robin in Morgan Hill, CA that day with pee everywhere, sorry.  I tried to cleanup best I could.

Finally arriving at home I was surprised that the long car ride added nothing to the mild discomfort I had felt since surgery.  I did in all fairness take one pain med for the ride home.  I'm a stomach sleeper so that nite was a little uncomfortable sleeping on my side but I got some good rest and woke the following day, still with no pain, showered and went about a normal Saturdays activities.  No heavy lifting though.  I didn't return to work until Wednesday of the following week even though I could have worked on Monday if necessary.  By Wednesday all swelling and ninety percent of the bruising was gone.

For the following month I continued to heal and still, experienced no pain.  On January 9, 2017 under Dr. Lue's permission (because of the distance I would have had to drive to see him) I saw my local urologist and together we activated my implant.  I was a bit clumsy with the implant at first but the activation was a success and I began to pump the implant until the bulb became firm.  I did this every night.  My erections were great and I was very pleased with the outcome.  My new measurement is 5" length and 4.3/4 girth. So, I had lost 1/2" by going with the implant and I wasn't crazy happy about that but I had a working penis that gave me an erection whenever I wanted for as long as I wanted.  There is certainly something to be said for that.
Would I do it again.  Given the same circumstances, you bet I would.
i hope this long read helps others in the same situation.  Feel free to ask questions or PM me if you'd rather.

Jim

james1947

Jimbruski

Thank you for posting about your experience :)
You post will help many that may want (and can) go on your way

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Jonbinspain

Jim;

Very well laid out.

All surgery is a last resort, and particularly the implant route.

Very glad to hear that it all went so well for you and that you're happy with your result.

PeetyPeet

Hi Jim, Great post and I'm also very pleased to hear everything has gone well for you. Just a quick question:

Quote from: Jimbruski on January 16, 2017, 06:27:00 PM
Dr. Lue put me on 40mg Cialis to see if that would produce an erection, but it did not.  

Did you mean to write 40mg? My understanding is that 20mg is the limit for a single dose of Cialis. Indeed if you did take 40mg, did you suffer any side effects?

Many thanks

Peety

Jimbruski

Thanks PeetyPeet,

Yes, the dose was 40 mg. Dr. Lue wanted to be absouletly sure that Cialis would not work.  There were no side effects.

Jim  

Pfract

Jim.... It was so nice to follow your diary here and see your successfull outcome. I hope you enjoy it much, for the next years! Best of luck with it, and don't abandon us yet haha

Jimbruski

Thanks pfract,

Thanks for being a consistent voice of reason and support.  And no, I won't be going anywhere.  I'll be here, in the background, helping if I can, while still continuing to learn.

How's your project coming along?

Jim

Pfract

It's not. I oscillate between doing something and telling everybody to go F themselves. The thing with FT is that no matter how many times you try to have a discussion and question things the tune is always ''women don't care about size and my penis works again and that's great''. So I guess you just end up be better up reading, taking it with a grain of salt and move on. Maybe tomorrow I re-motivate, but today I am pissed. Don't want to ruin your thread though.

Thanks for the kind words.  

FriskyDingo

Nice post Jim,

I am probably getting an implant with Dr. Kramer or Dr. Eid in September. Figuring out the logistics right now.

Please let us know how everything progresses. If you dont mind, will you describe the quality of your sex life post surgery once you are ready for it?

Thanks

Jimbruski

FriskyDingo,

Congratulations on your decision to go the implant route.  If you have exhausted all other choices and an implant is your only option then I can almost guarantee you will love it.  Your two choices for surgeons are the very best in the business so half the battle is over for you.

Regarding my sex life after implant....lets just say it feels like I'm a young man again.  I can go for as long as I (or my wife) need or want.  I can pump the implant to a soft erection or a rock hard erection or anywhere in between any time I want.  Rock hard is really too hard for intercourse, but its fun to play around.

If you have questions about the implant process or selection of implant types just let me know.

Jim

Jimbruski


Today is day 74 post implant surgery.  I am still extremely happy that I chose to have an implant.  Since surgery I have not experienced one day of discomfort, one day of questioning my choice of surgery and not one day of unsatisfactory sex.

I never experienced any of the surgeries commonly associated with a cure for Peyronies, so I have nothing to compare my implant surgery to, but my surgery was so easy I wonder why it isn't talked about more on the forum, especially among those with ED.

My wife and I throughly enjoy our re-born intimacy.  It has truly been amazing.

Regarding size, I am now exactly where I was pre surgery.  I lost no size.  Initially I had lost 1/2 inch but I have since regained that.  

My Peyronies is completely gone.  My penis is straight as an arrow.  

Anyone considering this type of surgery and wanting answers to question you may have, feel free to ask away, either on the forum or by PM.

Jimbruski

james1947

Thank you for the post Jimbruski

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Pfract

 8) Success stories are what we all like to read, and i am so happy to have been able to follow this one right from it's beggining here on the forum. Best of luck with it, and i hope you get to enjoy it much! :D not to call you old, but a lot of men your age are not enjoying the same level of intimacy that you with their wifes... :))