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thethom

Hello Forum members.
I am new to this board and have been reasonably sure of my Peyronies disease for about a year now. The condition of the upward bend is between and 60 and 80 degrees, strictly an eyeball
measurement. My vitals are  67 years old, excellent physical health, non smoker, retired land Surveyor and revitalized musical career as result of more time to enjoy my passions.
I did have total knee replacement 5 years ago (both knees) and continue the physical therapy as a matter of exercise routine to stay healthy and alive .. :)
My first visit to my Urologist here in Salem, Oregon suggested I wait 6 months to see if the condition stabilized or increased. It did increase but has stabilized to the numbers mentioned above.
After a second and third visit to my urologist, a Xiaflex injection therapy was prescribed but after reading more about the procedure, I declined because
1) The doctor never did a ultrasound or examination of my penis to correctly locate the plaque, IMO.
2) I read Xiaflex is not wise if you have Plaque surrounding the urethra, which I believe may be the case since my angular bend is straight up. Feeling around while erection is present and since the angular direction is opposite the side where the plaque exists, that may be the case.

In any case, I don't believe the doctor did adequate exam to diagnose my condition.  
I have been unable to have normal sexual relations for almost a year now because of the uncomfortable painful feeling  while insertion takes place which causes the erection to disappear.

I am searching for answers on Xiaflex effectiveness and anyone's experience with Oregon Urologists that may help me in living with this disease so I may be able to enjoy that aspect of my life once more.  
Thank you to all
TW    :)

Tychy

Hey thethom, welcome!

1) you are right. Ultrasound before invasive treatment
2) if the plaque is on the top, the top will be shorter due to scar tissue contracting the penis, leading to upward curve. Downward curves occur when the bottom of the corpus Cavernosum is affected. Peyronie's of the corpus spongiosum (? / the urethra part) is imho either really rare or just not possible.  

thethom

Tychy;
Thank you for the reply. And your knowledge about plaque location. My curvature is definitely upward. I have an appointment scheduled with a new urology clinic in a few weeks that is reviewed as a "Sexual Health Clinic". I am pretty sure that the Peyronies Disease has stabilized so I am ready for a aggressive solution.
Thanks again for your feedback'
Regards;
Thom

Tychy

No problem, crossing thumbs. Report back on any changes :)

LWillisjr

Quote from: thethom on July 08, 2017, 01:05:04 PM

2) I read Xiaflex is not wise if you have Plaque surrounding the urethra, which I believe may be the case since my angular bend is straight up. Feeling around while erection is present and since the angular direction is opposite the side where the plaque exists, that may be the case.


If your curve is upward, then your plaque should be on the top of your side of your penis. The urethra runs along the bottom side.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

thethom

Thank you. I certainly hope that is correct and from further reading, appears you are right. I think I had it backwards in my first post. Still, I intend to push for the ultrasound for total picture. If I am getting a "local" solution, you would think the "specialist" would maximize the accuracy by precisely locating the plaque deposit.
Regards
:)
 

OKJon

I'm near Salem Oregon as well, and I'd sure like to hear from you:
Did you find a Doctor you'd recommend ?

I don't much like the idea of Xiaflex, but my upward curl has become pretty limiting.

There is a Naturopathic Doctor up in McMinnville who does the Gainswave sonic treatment -  but I've yet to see a really positive posting about the shockwave treatments.  

I've had the condition two years already, and although I don't get the pain with erection anymore, it seems to be getting less flexible.      I know your last post was over a year ago...  I hope this message gets to you or another Oregon member!
Otherwise, does anyone else know where to go in the pacific northwest ?

TDix

Welcome to the not so popular club, but we accept you with open arms.  I did not get an ultrasound either, as my plaque is pretty cut and dry and visible when tightening the skin.  I went for it and am in the first rounds of Xiaflex.  Any experiences I have I am sharing in my thread.  I hope you find a doctor you gel with.  It makes a huge difference
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Monty

Hi, sound like a case for Traction or VED maybe both with manual stretching and massages.
71 UK, ED from 2011, unable to get full erection, Peyronies Disease from  2015 acute bend to left, VED & hand traction + 20mg of Tadalafil twice a week, or when i'm feeling lucky, forum member November 2017. Fav Film&Song, TheGoodTheBadThe Ugly. A Day in the Life