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[norcal1970]

Hi All,

Just had my initial visit with Dr. Sweet in Roseville, CA,  Sutter Medical Center.  She is a local  X specialist.  Has done it 1000's of times.  She measured my curve to be 65 degrees after edex induced erection.  She said each injection of x is about .4mg.  The first injection breaks up the plaque and each further injection she has to identify which chunk to attach.  On avg 5 degrees improvement per round and only a few patients got insurance approval for a second round of six shots.  So 30 degrees improvement is best case scenario on average.  And pretty much all her patients see improvement accept the ones that quit early on.  I asked her about restorex and other stretching methods and she said it does not help.  Only hand modeling during the six weeks after each shot does anything.  Girth takes years to come back if any due to the lack of circulation while the plaque interfered.  Most time the girth never comes back.   She does not use lidocaine to numb before injecting X bc it causes more damage than good.   I hope to get approval in the next month.   

Anyway, I am requesting any feedback on to the info above.  Is it accurate.  Has anyone experienced different outcome. Should I be doing something other than what she recomends. Thanks!

[Bud luck]

The girth doesn't come back?. I will try Hydrulonic Acid for girth

[john.doe.550]

norcal1970,
sorry I didn't see your post earlier. Perhaps you have began treatments.  Anyway, I'll share thoughts based on my own experiences in SoCAL. I have dorsal curve and it's very bad.  Plaque runs the entire length. Prior to xiaflex, there were two masses below the plaque. 

Dr. Sweet said, "...first injection breaks up the plaque..."
With my injections, the first one sometimes softened plague.   

Dr. Sweet said, "...each further injection she has to identify which chunk to attack."
With my urologist, we have taken two different approaches for what is targeted. The doctors are taught to inject at point of maximum curvature. However, we first targeted ball-like masses that had formed in two different places. The larger one, located in the middle, was stubborn, but eventually was completely dissolved. The smaller one, located behind head and down to glans, dissolved more easily.  We targeted these masses to give me better conditions for future plication. Then, we started targeting curves. I have two big ones.  The laminar plaque causing curves is pretty thick. The tile-like plaque behind head was one point of curvature.  The injections decreased size and thickness of this "tile."  Now, this curve is much improved.  We've just started injecting into the point of max curvature in the lathe-like plaque running entire length. It is not as wide and thick as the tile-like plaque was.  The first injection into this section caused the plaque to become more pliable / flexible.  I'm optimistic that today's 2nd injection into this area decreases the plaque to some extent. 

I've had many injections.  Sometimes it seems like nothing happens.  Other times, plaque dissolves within 1 to 2 days.  More recently with the tile-like plaque continued to improve over two to three weeks.

Dr. Sweet said, "...Only hand modeling during the six weeks after each shot does anything." 
My experience is that modeling (stretching / physical therapy) is crucial.  Throughout my first 1.25 yr, I never failed to do it 3 times per day.  After this, the xiaflex injections began working better and I've continued to model no less than 2 times per day.  Sometimes it seemed to help material move about and also sometimes it felt like things unkinked.  I drink a lot of water pretty much every day to help fluids move, too. 

Dr Sweet "...does not use lidocaine to numb before injecting X..."
My doctor does not numb it either. He told me it didn't help that much and it caused more irritation and swelling for some people because it was 2 injections instead of only 1.  I don't regret not using numbing.  Yes, sometimes the injection hurts.  Sometimes it doesn't.  With the very 1st few injections, I'd get a little bit sick from the xiaflex.  Sick means itchy, a little bit of fever, little bit of headache.  I'm pretty sensitive to chemicals.  However, several injections, it no longer made me feel like this.  Sometimes I get a lot of swelling and sometimes I get none. Sometimes the swelling is so bad, I do not want to move.  Other times, the swelling is not a bother and I ride my motorcycle off road on mountain trails.  In the beginning, there was also some internal bleeding.  This has not occurred in a long time.   At least for me, swelling and accumulated blood goes away pretty fast.  Like I said, sometimes I get no swelling.   

Best of luck to you

[john.doe.550]

norcal1970,
failed to answer first question. You asked about injection amount.  The mixed xiaflex volume in my injections is either 2 or 3 cc.  I think the xiaflex concentration is between 0.4 and 0.6 mg.  Did you know the doctors receive it in a powder form? They mix it with high purity water before use.  The doctor cannot let the loaded syringe sit about unused for very long. IF they let it sit for more than 20 minutes or so at room temperature, it begins to harden within the syringe. One time, an inexperience tech mixed it up before my doctor told her to.  The doctor began injecting it, found it difficult to push the plunger in, and concluded the mixture began to harden. The technician mixed up a new batch for me. The doctor said upon injection, "This is much better," in reference to the ease of injection.

Sometimes the needle is placed in really thick plaque. This makes it difficult for the doctor to inject the xiaflex. At worst times, we've seen the plastic plunger bend a little bit.  My doctor gives a lot of xiaflex injections and stated that this literally made his fingers and hands stronger.

Oh, here's a tip my doctor had that works really well. Xiaflex mfg says get the 2nd shot 1 to 3 days after the first shot.  Many patients, myself included, were still swollen and/or sensitive within these 1 to 3 days.  My doctor schedules the 2nd shot 1 week after the first.  By then, everything is pretty good and I can take it more easily.  This is his regular practice with his patients.  Waiting the additional 4 to 6 days has not seemed to diminish the xiaflex effect on plaque. I say this because sometimes we've had really great results from the 2nd shot.     

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