"Success - Accounts of improvement in deformity/erection" NOT FOR DISCUSSION

[Jackieo]

Update by JackieO
I was encouraged to post my recent improvement.  I hope this is viewed as encouragement to "others"  suffering from this disease and I personally wish improvement for all of you.  I have been plotting my improvement over several months and will attach a sketch (trace) as evidence of the improvement.
My case:  57-years old, living in Seattle.  I suffered a tennis injury and had Achilles Tendon surgery in February, 08.  About 6 to 8 months later I noticed a change in my erect penis.  I noticed a reduction in length, girth, and a gradual curvature to the left.  No bumps.  No indentations.  It was/is my belief that I was tangled in the hospital gown will lying on my stomach during the tendon surgery...at which time I must have cycled through an erection (or two) and was confined by the gown (*).  I have never experienced any rough sex or any specific sexual "incident" that led to pain or discomfort. 
I have tried to maintain a good diet and have tried to adhere to a regular exercise program.  My diet is healthy-heart w/ an abundance of protein (unfortunately, I am allergic to all fish and seafood).  My diet is low in flour, sugar, etc.
I am on Potaba (12 pills daily), L-Arginine, and Cialis.  And, I use the 3-tube VED on the 26-week program.  I am currently beginning week 20.  I take many supplements (which I have previously listed on this forum).
The following statements refer to the attached drawing: 
The dark base-line outline (center) is what I know my erect penis measured years ago.  The lightest dashed line (leaning far left) is my estimated "extreme" worst curvature which occurred between 11/08 and 03/09.
The two dashed outlines in the middle show the progressive improvement in the correction of my curvature.  One was traced on 6/15/09.  The other was traced on 7/20/09.  I am over-due for a new measurement.
I have experienced an improvement in regaining length and I have regained all, or most, lost girth.  These improvements have been noticed by my partner and that has been a big boost to my ego.
When the disease first hit I tried to avoid having an erection (thinking each time was more damaging).  But,  I found this forum and became aware that "erections are good".  First and foremost, I attribute any gain I have had to the VED...supported by the simple PAV program.  I am thankful to the diligence of "others" posting information on this site.
Also, Thank-you to Hawk, Old Man, Newguy, Cowboyfood, and many others for being there for me.
I previously posted how I established the base drawing for my "record".  If anyone needs clarification give me a pm. JackieO
(*) Is there a doctor in the house?  I talked to two Orthopedic Surgeons who both confirmed that my hypothesis (being tangled in the hospital gown while lying on my stomach during surgery) could easily have been my "injury".  They said it is a situation which has never (to their knowledge) been addressed and should be addressed at a national level (within their professional practice).

[JPRHenry]

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 proceedure 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, I believe 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 publically 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 a 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, this Peyronies Forum is the most valuable sharing and sounding board I have ever encountered. My updated post is twofold,...  One it to share my expereince with all of you, but most of all to reinforce what a wonderful site this 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

[jackp]

... WOW Normal Again. 

I was at my local urologist Friday with a prostate infection. This is the first time I have seen him since my implant. During the exam he checked the implant and was amazed at the success. He told me again that when his patients have special conditions he sends them to the best doctors.  For you that was Dr. Levine, mine was Dr. Milam.

Do not get me wrong surgery has its place but after all else fails. Surgery is the final option.

I will never be cured of peyronies, ... Now my peyronies has been put in its proper place on the back burner of my life.  Like you I found this forum about a year and a half ago. Just because I found the treatment that works for me does not mean I will leave this forum. I was given to much help by Old Man, Hawk, Tim and others and any way I can help others with my same condition I am glad to. I have talked to a lot of guys by PM and on the phone who have a lot of questions which I was glad to answer.

What I mean by "I will never be cured of peyronies". 

I have had peyronies for 14 years now. I am lucky in a way that about 18 months after the onset my curve straightened. The first side effect was I lost 1 1/2 inches in length. The other side effects were ED, loss of night time erections, venous leakage and corporal fibrosis. These made me 99.9% impotent. The VED helped but the venous leakage was so bad the tightest Osborn ring would not hold a lot of the time. After every thing failed I opted for an implant.

I still have the peyronies scar on top of my penis and that prevents stretching back to my normal length. So. Peyronies treated but not cured.

Jackp

First paragraph deleted to keep with the topic of this thread (full post remains under the surgery topic)
Hawk

[Hawk]

I repost this here from the "Our Histories" topic

I have been dealing with peyronies since Feb. of 2006. The peyronies progessed until my penis was bent at a steep downward angle and curved to the left. I was told that I was lucky that the condition had stopped where it had and that I should "keep an eye on it." I then read a post by,  I think it was Hawk, that spoke to 1000 mg. of vit. E, Pentoxiffylli 400 mg. and hot water soakings. In may of 2006, my reluctant urologist agreed to prescribe the drug and let me try it. He was skeptical.
In  July of 2008, he was surprised to find that my plaque had faded away in some areas and was  gone in others areas. He reluctantly said that he "may" tell others of the results. Today 11/5/08., my condition has greatly improved. I still have a  bend downwards but not very steep, and some small pieces of plaque. (which are fading) However my shaft is much fuller with a healthy blood flow. I continue to take Pentoxifylli 400mg. twice a day and use hot water soakings. I believe that peyronies is, in my case, not unlike a sport injury. It has taken a few years for me to have recovered this far. I want to thank all of you for your help and advice.
I just want to encourage everyone to keep up your hope. It may take time, but I know that positive results are possible. Thanks for this site and the hope it brings.

[lwillisjr]

I just read a post somewhere that we don't have enough people posting in this thread on "Accounts of Improvement". I have to admit I missed this one as I normally look at the more current topics.

I for one feel extremely fortunate. I'm now 8 weeks post surgery and feel like that I have conquered Peyronie's Disease for now. I've created my own web site documenting my story and it is starting to get quite a few hits.

http://home.comcast.net/~lcwillisjr

I also try to keep my log updated in the "Meet the Members" thread.

[Old Man]

Angus:

Glad that you benefited from using the VED. For me, after many and varied so called treatment/therapy did absolutely nothing toward helping with my Peyronies Disease, the VED finally did the trick.

I even had X-ray therapy to the tune of 45 3 minutes bombardments which did nothing. Tons of potoba (paba), verapamil injections which gave me a nodule and/or plaque with each are a few of the things that were tried. But, none of them worked. No oral meds ever seemed to do any good.

Old Man

[Angus]

Years with Peyronies Disease: 15
Early treatments: Potaba (didn't work, made me sick), one steroid injection by uro into the plaque. No improvement years after injection.
Treatment that worked for me: The VED. I have made a total of three VED's in varying tube sizes. I used these along with something very similar to the 26 week protocol and suggestions from Old Man for almost 18 months, rarely missing a day without use. The left 45 degree curve slowly improved to 10 degrees or less within that time. The only supplement I took at this time was L Argenine. Erections became fuller and stronger, and as a result of the reduction in curve, there is less chance of any buckling or accidental bending.

[myrddin]

I had my latest checkup recently with my Urologist (Dr. Culley Carson, UNC Chapel Hill) and was able to report some improvement, so I thought I'd share the same info with my friends here too.

I've been on Pentox almost 9 months now, maybe it takes that long for it to kick in or something. (?)

Background:
At 2-3 months of Pentox, my condition (upward curve) continued to worsen slightly, and had developed a slight left-sideward deviation as well.
At 4.5 months of Pentox, my condition had stablilized but not improved.

Now at 8.5 months, I can definitively say that all sideward deviation is gone.  My unit's perfectly centered when erect.  The plaque on the side (where it used to curve left) cannot be felt anymore.  Also, the upward curve is, in my subjective opinion, not as bad.  Visually it does not seem as sharp an angle as I remember it was a few months ago.  Intercourse has been easier lately and my unit does not seem to be as easily bendable, at the point of the curve, while erect.

All of this improvment has just occurred in the past 2-3 months.  It may be just due to the Pentox, but I had also made a few changes in my Oral Supplements at that point in time.  I replaced Arginine with Sann Vasoflow and tried a month on a PPC (Polyenylphosphatidylcholine)/SAMe regimen. 

Now, FWIW, my current oral intake list looks like this:

On empty stomach:
Sann Vasoflow (2 pills per day)
ALC (500 mg 2x/day)

After meal:
Pentox (2 per day)
Now Foods Gamma-E Complex (2 per day)
Jarrow PolyPC (1000mg 2x/day)
RxOmega-3 Factors (1x/day)

[George999]

My peyronies experience started back in March of 2004.  The first symptoms were lots of pain that extended from the tip of my penis all the way back to the prostate and bladder and was accompanied by an urge to 'go' all the time.  I was first diagnosed as having some sort of urinary tract infection, but then the deformaty began to appear with subsequent errections.  The distal inch of my erect penis became somewhat flatened in such a way that my urethra became very prominent.  Along with that phenomenon, I noticed a very hard, almost metallically hard lesion at the end of my flacid penis under the glans.  I eventually went to a urologist in the late fall of 2004.  He made the peyronies diagnosis and put me on 800ui per day of "all together now" Vitamin E!  The (synthetic) Vitamin E proved fairly useless, and the next thing that happened was that I developed a "band" or constriction at the point where the normal tissue met the abnormal tissue, if you know what I mean.  This created somewhat of a hinge effect at the end of my penis, which led to a new injury which pretty much turned the whole end of my erect penis to shrunken pulp along with causing a lot of pain again.  As that was beginning to heal (in terms of the pain relenting) I happened to get a natural vitamin E to take at work along with the synthetic I was taking at home.  I immediately noted some small degree of benefit.  Sometime during this period (around March of 2005 I began taking aloe vera which seemed to help some with the peyronies)  After months of slow improvement, and lots of research, I took Peyronies Disease Institute up on their challenge and bought some of their full spectrum E.  I don't remember exactly when that was, but it produced a large and noticible improvement in my peyronies.  My experience with the aloe vera and the full spectrum E led me to really get into the natural supplement area and really examine the different legitimate peer reviewed research going on there.  I am now taking a long list of supplements and herbs and the peyronies is getting steadily better with the original plaque hardly detectable any more, and the band completely gone, and the end of my penis more normal than at any time from the beginning of my experience.  There is still room for more improvement, but on the whole, I am extremely satisfied over my gradual and persistant progress.

Things that I have considered beneficial:

Aloe Softgels (2 per day)  (Anti Inflamatory)
Full Spectrum 400IU E from PDI (2 per day) (Anti Oxidant)

Things that I believe might be beneficial and am taking as well:

Neprinol (1 per day) (antifibrotic)
Fish Oil (1 per day) (anti-inflammatory)
Vitamin K2/D combo (1/2 per day) (to counter Vit E blood thinning effect)
Quercetin/Rutin (1 per day)  (to strengthen vascular system)
Vitamin B6 (1/2 per day)
CoQ10 (1 per day) (to benefit vascular system)
Natokinaise (1 per day) (anti-fibrotic)
Time Release Vitamin C (6g per day)  (Anti-Oxidant/Vascular support)
Horny Goat Weed (2 per day)  (PDE-5 inhibitor/NOSe support)
Korean Red Ginsing (1 per day) (PDE-5 inhibition/NOSe support)
Baikal Skullcap (1 per day) (NOSi inhibitor/antifibrotic)
Pygnoginol (1 per day)
Arginine/Lycine/Proline
Maca (2 per day)
Garlic (2 per day)

- George

As of 11-15-06, I have eliminated, at least temporarily some of the supplements for various reasons, and am concentrating on the remaining ones that I consider safest and most effective for me.  At this point I am no longer taking Aloe, Neprinol, Korean Red Ginseng, Baikal Skullcap, Lycine, or Proline..  I have modified my intake of Vitamin B6 (I now take a B-Complex once a week instead), Horney Goat Weed and Maca (I now take more of both), Arginine (I am taking less).  In place of the generic Pygnoginol I am using Flavay, a the original French OPC/Pygnoginol formulation that has significant positive research behind it, but, like Neprinol, costs a king's ransom.  But I am making headway.   A few weeks ago I experimented with using 1600IU of Vitamin E daily balanced by the K2/D3 combo.  On at least one occasion during that period I achieved a 'perfect erection' with no apparent deformity.  I plan on trying that again in a few weeks with a pure K2 formulation (too much D3 bothers me a bit) and may extend it out to two weeks to see what that achieves.  Yesterday, I spent over an hour on the treadmill combined with various combinations of HGW, Maca, and Arginine, along with carbs in the form of fruit juice and fruit cocktail.  I probably consumed around 10 capsules of HGW and 12 of maca along with a very small amount of Arginine, and last night I experienced for the second time an erection without the usual deformity.  So I know I am closing in on this.  Whether I can find a solution that will last is an open question, but I know I am close and the two things working best for me right now are the full spectrum Vitamin E and the HGW/Maca/Arginine/Aerobic Exercise/Nitric Oxide combination.  I feel really good about the Peyronies, I wish I could make the same kind of headway with my hypertension.

- George

[ComeBacKid]

I've had peyronies disease now for 7 years, it was the result of a soccer injury when I was 15.  At first I just had slighlty weaker erections and not much bend at all.  I saw a very slow worsening over time, but most recently a huge loss in size, and a much sharper and distinctive bend of about 35 degrees to the right, with a slight twist from the base.   I really didn't see any improvment until I started taking the pentox about 2 weeks ago.  The improvement has been in straighter and fuller erections, and a fuller flaccid penis, the elasticity seems to have returned somewhat as well.  I was on the trazodone before this and still am, that seemed to help with the erections, but the pentox now has really improved my erections.  It can still be hard to maintain an erection without some kind of constant light stimulation, but the fullness and resolution of the bend has been a ray of light for me.  I'm currently taking 400mg of pentox 3 times daily with food.  I'm also taking L Arginine 1000mg twice daily, trazodone before bed at a 25mg dosage, and doing the VED workout daily.  I was doing everything but pentox for awhile (months) and noticed small improvements, the pentox has seemed to help a lot with blood flow, you can also tell the tissues are more flexible now, and not so hard.  Tim has posted a good piece on exactly what pentox does, I have not yet gotten to read it all.  I wanted to make everyone here aware of my solid improvments from pentox, it costs about $55 per month, but I will continue taking it I think it is worth it. I can't say whether my erection improvment is permanent or not, but as long as I can take pentox I will continue to do so.

ComeBackid

[Liam]

This area is NOT for posts about improvement in pain since that is universal.  Also do NOT post about reduction in plaque size since that is also typical.

This area is ONLY for posts about actual improvement in deformity and function (bend, dent, curve, erection, buckling).  Please be as specific as possible: How long did you have Peyronies Disease when you began to see the improvement?  What actually improved?  How much did it improve? What treatments did you use and when?  What is your gut feeling about the improvement being related to spontaneouse improvement or the result of some treatment?  State whether improvement in functional erections seems permanant, or if it is the result of ongoing use of a prescription or supplement.