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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
https://www.peyroniesforum.net/index.php/topic,17819.0.html

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stpetefl

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New member of forum
« on: April 21, 2015, 12:29:41 PM »

Hello all,

I've been lurking here for a few weeks and reading the wealth of valuable information.  So now I'll introduce myself.  Following the format given, here goes -

Age? 63

What did your medical doctor conclude?  My urologist didn't really seem to give a crap about penile curvature.  He said I should take some Vitamin E and learn to live with it if that doesn't solve the problem.

How long have you had symptoms?  It's been about 2 years now.

What are your symptoms?  Curvature and shortening.  When getting an erection, I can see the areas where expansion isn't occurring.  I have had significant shortening as well as the bending.

What treatments have you tried and what were the results?  I have tried oral therapies at this point.  Started off with taking Vitamin E alone to no effect.  I downloaded a paper that suggested taking Unique E in a large dose, coupled with Vitamin C and Vitalzym.  This paper also recommended Thacker's Formula, which I haven't tried yet.  The treatment I'm on might have shown marginal improvement, but certainly nothing worth writing home about.  I've been on that for probably 3-4 months.

Do you have insurance or means to get medical treatment?  Yes.

where are you in dealing with the psychological aspects of Peyronies Disease?  My wife understands that this is causing some issues with me, and we are working to make sure we both enjoy sex without necessarily having full functionality.  But I do miss the total package (so to speak)!

Are you in a relationship? Yes.

It's clear to me that I need to find a urologist who gives a crap about the issue, since clearly my urologist does not.  I searched the forums and saw one doctor at USF in Tampa, but I haven't seen any in St. Petersburg.  If anyone on the forums has a good recommendation in St. Pete/Clearwater that would be preferable. 

It looks as if there is a wealth of good information on the forum and I'll update as I (hopefully) make progress.
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Jonbinspain

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Re: New member of forum
« Reply #1 on: April 21, 2015, 03:14:16 PM »

Firstly, get away from this dinosaur of a Urologist. The man is a disgrace to his profession, from what you've said. If you are in a position to, find another one - quickly!  There is a list on the site.

2 yrs is some time into this, it really should have been treated in the earlier stages. You need, a competent Urologist, an ultrascan to determine the extent of the plaque and if there is calcification.

Vit E will do nothing for Peyronies. Read about all the most highly thought of oral treatments on the site. The first line of that being Pentox.

For the curvature, you can try either VED, traction, or both.

First step, get a competent Uro, not this idiot you've been seeing.
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stpetefl

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Re: New member of forum
« Reply #2 on: April 21, 2015, 05:36:40 PM »

Thanks for the input.  I agree with ditching the dinosaur urologist.  I'm going to get another urologist to take a look at this and request the Pentox so that I at least don't lose any more time on treating this.  I'll keep the forum posted as I get treatment options.
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stpetefl

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Re: New member of forum
« Reply #3 on: April 23, 2015, 10:15:35 PM »

Well, I got an appointment for May 5th with a non-dinosaur urologist.  I'll post what he says and what he recommends.  After visiting this forum, I feel well-armed with information about what should be done next.  Thanks!
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Jonbinspain

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Re: New member of forum
« Reply #4 on: April 24, 2015, 02:20:16 AM »

Yes, it's always good that you arm yourself with as much information as possible  before seeing a Urologist. Very few of them are true experts in dealing with this disease. Many have little or no knowledge, others don't treat it seriously. Or both, as in the case of the one you were unfortunate enough to encounter.

There are medical studies of things like Pentox here on the site. If you think it might help, you can print these off and take them with you to back up your arguments.
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stpetefl

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Re: New member of forum
« Reply #5 on: May 05, 2015, 11:15:44 AM »

I just got back from my appointment with Dr. Zhou at Pinellas Urology in St. Petersburg.  A decidedly different approach than my "dinosaur" urologist.  He did an exam and said that he didn't think my plaque was too bad.  He assumed since I had seen another doctor that I was there ready for injections.  So I gave him a better rundown of my experience.  He also indicated I should bring him a picture erect to more fully be able to see the extent of the issue.  I meant to do that for this visit, but didn't get around to it.

He prescribed Potaba and 5 mg Cialis for a start.  He indicated that if that worked, to come back and they would get me on a regular schedule with that.  Their senior partner apparently really found Potaba beneficial.  He indicated he hadn't seen as much positive from it, but it was worth a try.  The senior partner recently retired, so was unavailable.

Then, he said that if that didn't work, I should not waste any more time with them and go straight to Dr. Carrion at USF in Tampa.  He indicated he is the expert in the Tampa Bay area and is really the go-to person around here.

Dr. Zhou indicated there was no reason today to have to "learn to live with it".  I hope he's right.  I'll keep you posted on the results from the early treatments.  But at least it feels like I'm actually taking some active steps to reverse the condition.

PS - I'm also doing the over-the-counter Ubiquinol, acetly-L-carnitine, and L-arginine.  I just got started on those.
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hope4all

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Re: New member of forum
« Reply #6 on: May 05, 2015, 01:31:37 PM »

stpetefl, I would book that appt with the Tampa doctor as soon as you can. Potaba is old school. Doctor's in the know usually prescribe Pentox along with 2.5mg daily Cialis, to start.  Traction or VED may be beneficial to you as well, especially starting early on before calcification sets in. The 5 mg cialis might be overkill. I would break it in half and take that daily to start. Everyone reacts differently to meds but for me 2.5mg provides rock hard nocturnal erections for me, to the point they sometimes wake me up from sleep they're so stiff. If you have a PPO plan and don't need referrals why not check with the other doctor?  Good luck.
hope4all.
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james1947

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Re: New member of forum
« Reply #7 on: May 05, 2015, 03:00:35 PM »

stpetefl

I will second hope4all.
Make a search for Potaba on the forum, you will not find too many sucess stories.

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

stpetefl

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Re: New member of forum
« Reply #8 on: May 07, 2015, 01:05:32 PM »

I will get something on the calendar with the Tampa doctor.  I'll also take the meds this guy gave me until I see Dr. Carrion.  It could be a while if he's the only real specialist in a large metropolitan area like this.  Thanks for the advice!
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stpetefl

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Re: New member of forum
« Reply #9 on: May 08, 2015, 12:19:15 PM »

So, I dropped my prescription for Potaba off at Walgreens yesterday and went by today to pick it up.  The lady at the pharmacy told me it wasn't covered by insurance (which I suspected) and that the price for a 1 month supply was $471.  WOW!  I told her that I was thinking it probably wasn't going to work anyway, so I'm skipping this step.   We'll see what Dr. Carrion at USF has to say.
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Old Man

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Re: New member of forum
« Reply #10 on: May 08, 2015, 01:02:47 PM »

stpetefl:

Years ago, when I first contracted a case of Peyronies Disease, I was RXd potoba. Over many months, maybe a year or more, I consumed 13 bottles of 1,000 potaba tablets to the tune of 6 tablets 4 times per day. The only effect that I got from that was a constant upset stomach most of the time. Taking them with food was the better way to go to calm the stomach.

So, IMHO, don't waste your valuable dollars on this supplement that does not work for Peyronies Disease symptoms as verified by others on this forum who have tried it as well.

Old Man
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Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

james1947

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Re: New member of forum
« Reply #11 on: May 10, 2015, 08:20:31 PM »

As an introductory, this topic is locked.
Please post/open new topics on the specific boards.


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