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Author Topic: How many??  (Read 1252 times)

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CurveHasNerve

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How many??
« on: September 14, 2019, 08:31:12 PM »

I have a 45 degree left curve and a 40 degree ventral curve. I have had 3 injections and have seen absolutely no change on either direction. How many treatments does it usually take to make a change? Is this a waste of my time? How many have had this treatment and it worked? What, if any, was the improvement? Any opinions on this, from those who have had the procedure, would be greatly appreciated. Thanks  :)
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Bernie
Age: 48
Ventrolateral Congenital Curve
45° Left, 40° Downward
Looking for possible solutions
So far have tried Verapamil injections which have done nothing.
WV, USA

CurveHasNerve

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Re: How many??
« Reply #1 on: September 17, 2019, 10:39:22 AM »

Tomorrow 9-18-19 will be my 4th treatment with verapamil. Since there has been no improvement from the others, I believe this one will be no different. However, at least I am giving it a good effort before I take any more aggressive action. We'll see how this one goes in a few weeks.
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Bernie
Age: 48
Ventrolateral Congenital Curve
45° Left, 40° Downward
Looking for possible solutions
So far have tried Verapamil injections which have done nothing.
WV, USA

CurveHasNerve

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Re: How many??
« Reply #2 on: September 18, 2019, 11:51:59 AM »

Finished with the forth injection and went the same as the others. But before I went to have it done I talked with the Dr about no correction this far. He said he is having a hard time finding the plaque or it is way too soft. Could this possibly be congenital as I have had both curves since I can remember but the ventral one has gotten worse over the years?
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Bernie
Age: 48
Ventrolateral Congenital Curve
45° Left, 40° Downward
Looking for possible solutions
So far have tried Verapamil injections which have done nothing.
WV, USA

CurveHasNerve

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Re: How many??
« Reply #3 on: October 02, 2019, 03:02:33 PM »

Quick update. Had injection of Verapamil on 9-18-2019. As of today 10-2-2019 there had been absolutely no change in either direction of curve  >:(. Seriously thinking about stopping the injections since the Dr told me that he can't feel any plaque and can only inject where he thinks it would help in the curve.
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Bernie
Age: 48
Ventrolateral Congenital Curve
45° Left, 40° Downward
Looking for possible solutions
So far have tried Verapamil injections which have done nothing.
WV, USA

P47D

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Re: How many??
« Reply #4 on: December 02, 2019, 06:07:56 PM »

YIKES!  Right off the bat from your posts you say that your plaque is not very palpable...neither was mine.  That makes it very difficult to actually get the injections (either Xiaflex or Verapamil) directly into the plaque itself.  Another issue is that, from my understanding and research, Verapamil is best suited for a fairly CALCIFIED plaque that is hard and easily felt.  With my "soft, not very palpable" plaque it was kind of a best guess as to exactly where the Dr/APRN placed the injections.  I think one of the Xiaflex shots "missed" and that caused some really painful and physically detrimental after affects that took many months to heal.  In the end, my 74 degree pure dorsal bend did not respond to any injection therapies...but the Nesbitt Plication was a charm!  Pix posted on the Child Boards to show how well the surgery worked. 

If your Dr. has a specific therapy mapped out, might as well see how it goes for a while.  Think carefully about going for the Xiaflex; it is very expensive and with a soft, non-palpable plaque is sounds like a long shot.  However, if your Peyronies Disease is very stable maybe surgery is the best permanent option, no?  Wish you the best.

-P47D
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Trauma induced 74 degree vertical dorsal curve in OCT 1916 - after 3 years, success with plication.
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