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Author Topic: Xiaflex and RestoreX-Results  (Read 3459 times)

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WhatNext81

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Xiaflex and RestoreX-Results
« on: April 11, 2018, 02:20:53 AM »

I went to Mayo Clinic for my final evaluation just recently. I met with Dr. Trost and went over my progress from my consultation in September, up until now. I started using RestoreX in October. I was instructed to discontinue daily use of traction. He recommended using it once a week or once every other week for only 30 mins for the time being. I was also taken off my daily dose of genric viagra. I've regained 2" in penile length since my consultation. My right curvature of 30 degrees is back to zero degrees. I also had an indentation on my right side, along with some "buckling" on the underside that is no longer present.

To be clear this was my treatment plan:
4 cycles of Xiaflex
RestoreX-no more than 60 mins/day October-April 4th
Hand modeling 5x per day. Each time-30 seconds straight & 30 seconds opposite of curvature.
20mg of generic viagra at bedtime

Over the course of treatment I developed a minor upward curvature. It was noted by Dr Trost at my 3rd cycle of xiaflex treatment. I used RestoreX to bend opposite of the upward curve and it was back to normal within 6 weeks as noted at my 4th cycle.

I am to stay in touch with him if anything changes.
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BadCheetah

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Re: Xiaflex and RestoreX-Results
« Reply #1 on: April 11, 2018, 10:57:11 AM »

WhatNext81,

From what I understand, you are basically cured of Peyronie's.  CONGRATULATIONS!  You're one of the few on this board who has had this degree of recovery.

I have been using Restorex and VED for the last three or four months.  Less than a week ago I received my second injection for the SECOND COURSE of xiaflex.  You got that?  Last year I did an entire course of eight xiaflex injections and this is now my second course.  I have a simple but severe dorsal curve.  Although I didn't measure it, and my urologist sure didn't, I'd estimate that it was 65 degrees at worst and after the first xiaflex course, it's down to 45 degrees.  I guess that is probably the average improvement for xiaflex, but it's unacceptable to me.

I am curious as to why Dr. Trost told you that after xiaflex injections you should limit the use of your Restorex device to once a week or once every two weeks.  I'm aware he has a paper out that says traction does not improve xiaflex results.  (I don't put too much trust in most of the peyronie's studies because they are a small sample size.)  But intuitively, it seems to me that the more stretching you can do when the plaque has been softened by xiaflex, the better the molding and the better the outcome.  Obviously, you can't go hard on it (even though I did) immediately after the injection because you'd be risking some kind of rupture or hematoma.  But a week after the injection, the risk of that has dissipated.

Do you know why Dr. Trost asked you to drastically limit the Restorex use?

As for me, I have very little pain from xiaflex shots and very little bruising.  I started using Restorex THE SAME DAY of my xiaflex injections.  (I know -- that's probably crazy, but I haven't suffered any negative effects from it.)  I had my second xiaflex injection last Friday, today is Wednesday and I've got my Restorex on right now.  That's in addition to VED, daily Cialis and Pentox.

I know that this is overkill, but I have a strong gut feeling that if I go through the current xiaflex course like I did the last one (nothing more than the recommended hand stretches), I'm going to get nowhere.

I can tell you that my dick LOVES Restorex, VED and Cialis.  Although I never measured length, I'm sure I'm way, way up.  My sexual functioning has gone from borderline impotent to as good as it was in my 20's.  It's like -- everything is great other than this ridiculous bend.
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TonySa

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Re: Xiaflex and RestoreX-Results
« Reply #2 on: April 11, 2018, 11:24:09 AM »

Dr Lue, a world renown peyronies exert, insists that without daily traction of 2-3 hours xiaflex has very little effect.
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WhatNext81

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Re: Xiaflex and RestoreX-Results
« Reply #3 on: April 11, 2018, 05:25:46 PM »

Thank you! I'm sorry to hear you're going through a second round. It's not the funnest thing in the world. I'm not sure if there is an end all and cured for life remedy? Maybe others can weigh in?

I had my last cycle of xiaflex in February and used RestoreX up until my final evaluation. Measurements and everything showed improvements greater than I had expected. I saw the biggest jump in improvements at the middle of cycle assessment. So, after my second cycle was completed, six weeks later, when I was there for my 3rd cycle. I am greatful to have fallen under the percentage that responds well to xiaflex.

I came across that paper a while back. When I read that, I was shocked. You know, I went through a phase where I read everything I could google, to the point where it became more stressful than helpful. It was a long journey to get to Mayo.

Xiaflex most effectively aides in stretching out, breaking up, however you want to word it, the plaque, 5 days that follow the last injection of each cycle. Now, traction is still beneficial after that 5 day window frame. I've exceeded that and with great results. I too started RestoreX right after each cycle. After one cycle I had a difficulty with hand modeling, due to an acute blood blister that formed on the underside of the penis head. After 3 days, I was able to wrap it and use RestoreX comfortably . Hand modeling wasn't comfortable as it was difficult to grip the glans with even pressure by hand.  I traveled, so my injections were done two days, back to back within 24 hrs. I had bruising and swelling with each cycle.

My body could not stand pentox. A different uro had prescribed it and I had to discontinue it due to side effects.

The tension RestoreX provides is consistent and controlled. The average force of tension is 6lbs if you're really burying the white line. If you're just past the white line, I believe it's around 3lbs of tension. That being said, after all 4 cycles of xiaflex, with only 6 weeks apart from each cycle, the hand modeling and heavy use of traction, the penis has been through a bit. Some xiaflex treatments had multiple injection points. One cycle , both days, were done on the same plaque location. I was nice and bruised up/swollen from the first injection, then 24 hrs later, injected in the same location. Not fun the plaque was very dense.

Now, given my results, I'm instructed to lay off the traction, keep a watchful eye and if anything changes, I am to contact him, and most likely, I will be able to keep anything new under control by going back to daily traction.
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WhatNext81

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Re: Xiaflex and RestoreX-Results
« Reply #4 on: April 11, 2018, 05:33:42 PM »

Badcheeta-I really hope this time around you see great results. It sounds like you've found a good combo from what your body is telling you. Keep at it. Do you ever take breaks from cialis to see how your natural erections are?
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WhatNext81

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Re: Xiaflex and RestoreX-Results
« Reply #5 on: April 11, 2018, 05:38:33 PM »



Dr Trost mentioned that patients that weren't proactive with hand modeling were the ones who showed little to no difference. I'd imagine that's why traction is highly recommended. It would seem that some think the injections alone break up and dissolve plaque when that's not the case.
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thinkpositive

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Re: Xiaflex and RestoreX-Results
« Reply #6 on: April 18, 2018, 06:58:33 AM »

Can you help me understand the hand modeling?
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TonySa

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Re: Xiaflex and RestoreX-Results
« Reply #7 on: April 18, 2018, 09:27:37 AM »

Xiaflex has instructions, but more frequent often seems recommended by docs.
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

WhatNext81

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Re: Xiaflex and RestoreX-Results
« Reply #8 on: April 27, 2018, 05:49:04 AM »

I was instructed to do it after going to the bathroom. I believe the logic was, it's already out, take 60 seconds. But, I was told to do it 5 times per day. I'm sure more wouldn't hurt as long as done correctly.
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Crooked in the South

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Re: Xiaflex and RestoreX-Results
« Reply #9 on: May 01, 2018, 10:44:57 PM »

Whatnot can you give an update? I have my first injections tomorrow with Dr Trost. Like you I am traveling and will have both injections 24 hours apart.
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WhatNext81

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Re: Xiaflex and RestoreX-Results
« Reply #10 on: May 02, 2018, 02:01:40 AM »

I listed my final results up above. Don't sweat it and try not to worry. Their team is awesome and very good with addressing any questions. You're in good hands. Make sure to wrap it just like they do and to keep it wrapped in the shower! If you have any questions about lodging and stuff like that, PM me. Driving and parking can add up fast. A lot of hotels offer free shuttles. I know the cheap ones! Let me know how it goes.
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Crooked in the South

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Re: Xiaflex and RestoreX-Results
« Reply #11 on: May 02, 2018, 08:55:57 PM »

Sorry about that I see that now. I had my first injection today and like you I had multiple injection points. I tried to hand model like he told me to but I just can't get that aggressive with it like they showed me. It hurts and I am afraid I might injure myself. I am still wrapped and plan to stay that way until I get my second injection tomorrow. I had hard plaque and today was no fun so I am not really looking forward to tomorrows meeting.
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TonySa

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Re: Xiaflex and RestoreX-Results
« Reply #12 on: May 02, 2018, 09:36:13 PM »

I thought the modeling began after the second injection within 3 days?
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Crooked in the South

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Re: Xiaflex and RestoreX-Results
« Reply #13 on: May 02, 2018, 10:16:44 PM »

I was so nervous about the injection that I literally didn't retain a word they told me during the procedure so I emailed them probably about an hour after my first injection. Here is the response:

Yes you should start today. Your goal should be at least 4-5 times per day. Often we recommend doing it everytime you go to the restroom as a reminder to do it, but you can do it anytime. Every time you do hand stretching you will want to pull out as hard as you can tolerate and hold it for 30 seconds then use your finger or thumb as a fulcrum and bend in the opposite direction as hard as you can tolerate and hold it for 30 seconds. These two stretches are the two that you will do at least 4-5 times per day. Also if you have an erection you can bend the penis straight and hold for 30 seconds.

As I stated earlier just to model a little hurts but I'm trying. Probably not being aggressive enough but scares me as well.
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QuackAttack

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Re: Xiaflex and RestoreX-Results
« Reply #14 on: May 02, 2018, 10:51:33 PM »

Crooked,

If you are bending an erection in the opposite direction, usually a nighttime woody, be very light in your force. If you use too much force, you stand the chance of fracture. I had a NTW and when I bent it downward, I heard a little pop, that not only freaked me out but also hurt. I thought for sure I had a fracture and went in a day later to have it checked. My URO said that there wasn't a fracture; however, there could have been what he called a micro fracture of the plaque which he described as beneficial because it shows that the Xiaflex is breaking down the plaque.  Just be very gentile and careful when bending a woody in the first two weeks post procedure.
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WhatNext81

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Re: Xiaflex and RestoreX-Results
« Reply #15 on: May 02, 2018, 11:27:24 PM »

Crooked-No worries and no need to apologize. You made it through day one! Let him know that you aren't retaining some of the info due to nerves. It's super common. They'll write stuff down or type something up I'm sure. This is what they do. It may seem weird or awkward but think about it this way, they see dicks all day with people in the same position as you. This is normal. Be up front about everything, including being afraid of using a lot of force with hand modeling. I was the same way and he showed me the force you can safely apply. That was day two before my second injection, nice and bruised up with some pain. I kept it wrapped as well. For modeling I was shown to use my free hand at the base, above and below my shaft, using two fingers up against my pelvis. It made it much more tolerable for tough stretching. It isn't the most fun thing in the world, but keep in mind that the hand modeling/stretching is a very important part of this equation.

Are you doing traction or ved with your treatments? Tomorrow would be a good time to ask. There was one cycle where hand modeling was super difficult due to a blood blister but I was able to use traction. I feel that helped a ton at that time and throughout the whole thing. It also made me more comfortable with applying more force during hand modeling. Good luck. You got this.
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