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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: Introducing myself  (Read 1786 times)

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mylesd

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Introducing myself
« on: February 04, 2014, 06:50:47 PM »

Hello PDS members,

My name is Patrick.  ( age 53 )
I discovered my condition in October and after the initial panic and subsequent reading of the somewhat limited knowledge of this condition, I found this forum. 
I still have much to research here so this is just the intro.
I got a physical in Jan, and was referred to a highly respected urologist here in Boston which I saw today.
In my particular case, I have a divot,if you will, on the left side half way up from base causing left hand curve.
My visit was surprising. This urologist was incredible. After viewing a few pictures I had taken, he explained more about the condition and how common it was.
( I've only seem to have read that this was UNcommon )
He told me about Xiaflex and he thought I would be at the top of his list for this treatment but there were still hurdles to jump ( Insurance coverage, etc).
I'm both excited and petrified.
I will start searching this forum to educate myself and learn of other experiences. I need to seek others opinion before this treatment if it becomes available.
Thanks for listening.
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LWillisjr

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Re: Introducing myself
« Reply #1 on: February 04, 2014, 09:06:26 PM »

Sorry you have to join our club. I hope you find us to be an open, honest, friendly, compassionate, and supportive group of fellow sufferers.
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Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
65y/o  13 years Peyronies free
My History

mylesd

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Re: Introducing myself
« Reply #2 on: February 05, 2014, 05:04:43 PM »

Thank you LWillisJr,

I never realized the extent and various degrees that this condition can take until coming here.
Before I discovered this forum, I thought I was one of a rare few who developed this deformity. I strongly commend the men here for sharing their experiences.
It helps to know you are not alone.
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james1947

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Re: Introducing myself
« Reply #3 on: February 06, 2014, 04:19:09 PM »

mylesd

The doctor didn't talk with you about any other treatment except Xiaflex?
He didn't started you on any treatment?

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

mylesd

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Re: Introducing myself
« Reply #4 on: February 06, 2014, 08:38:23 PM »

Hi James,
No, he didn't recommend anything else. I didn't ask about any meds but did inquire about any sort of traction device ( not sure of the name). He thought there might be a danger of penile fracture.
I did wonder the next day why nothing else was offered but when he examined me and saw pictures I provided , he immediately thought I was a good candidate for his trial if he can put it together.
He thought that would be my best bet. My condition, although huge to me, may be considered a good fit for Xiaflex.( not too severe ?) I should hear more from him this week or next. I do feel he is a well respected urologist here in Boston and was very knowledgeable about the subject and already trained to administer the treatment. I guess I was overwhelmed on this visit and probably needed to ask about more options. He jumped right on the Xia and that was that.
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james1947

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Re: Introducing myself
« Reply #5 on: February 07, 2014, 02:23:31 AM »

mylesd

Until you will get the Xiaflex injections (who knows when?) I am proposing you to start on:
Pentox, low dose Cialis, Ubiquinol and VED. Do it sooner than later.

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

soul09

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Re: Introducing myself
« Reply #6 on: February 25, 2014, 10:39:13 PM »

Mylesd:  Great to see a fellow Bostonian on the forum, though I wouldn't want anyone to get this!  Please keep us up to date on the progress with your urologist.  Would you mind sharing who your urologist is?
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mylesd

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Re: Introducing myself
« Reply #7 on: March 31, 2014, 06:49:51 PM »

Hello soul09

I'd like to pose this question to anyone out there ( I doubt many will see it)
My first and only appt was in Feb  when I was diagnosed with Peyronies Disease as it was obvious. Again, my uro is respected and is very interested in Xiaflex but he will
only proceed if there is significant interest and of course Ins will cover it ( Is that ever going to happen?). In his mind, there are no other options that would be effective.
So after almost 2 months, I'm not receiving any treatment. Are there any other Peyronies Disease patients here that are not taking any meds or using any device ?
My left curvature/divot has not changed and I'm not in any pain but am wondering about No treatment. Like I said, my uro is very knowledgeable on Peyronies Disease and he thinks that
Taking lots of meds or using any device could possibly do more harm than good until Xiaflex is covered.
Anyone else?

soul09: Not really comfortable naming him unless I ask him but the office is at  Brigham & Womens Faulkner
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BoatFool

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Re: Introducing myself
« Reply #8 on: March 31, 2014, 07:59:23 PM »

mylesd,

My situation is very similar to your's, I am not taking any meds or using any device.  My bend has not changed and I'm not in any pain.  I tried the Verapamill shots but they didn't help with the bend but my pain did stop during the shots and has not returned.  My urologist also didn't feel that any drugs would help and that Xiaflex was the next thing to try if I was not ready to have surgery.  From what I have read on this forum, I don't think the drugs are likely to help me enough to put up with the side effects.  I have not ruled out Xiaflex but thinking surgery might be the better option for me.   
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mylesd

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Re: Introducing myself
« Reply #9 on: April 01, 2014, 07:54:26 PM »

Thanks Boatfool,
I appreciate the feedback. I know from reading here that there are so many different ways in which Peyronies Disease has affected different men. I can appreciate what course of action each man takes. In a world that places so much importance on discovering new drugs to keep a man erect ( and all covered by insurance), I'm at a loss as to why so little is being done for this somewhat debilitating condition. I wish you the best if surgery is the option for you. It was important for me to hear from someone in the same boat (so to speak).
Thanks man
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james1947

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Re: Introducing myself
« Reply #10 on: April 01, 2014, 09:12:25 PM »

This topic is locked
mylesd, please open/post specific questions on the adequate 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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