Xiaflex vs surgery

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Crooked in the South

Sorry new to this group and not much time to research through all the post. Have procedure next week (I think LOL). I went to the Mayo Clinic for Peyronies Disease. My curve is 85 degrees up and 20 degrees to the left and is hour glass shaped. I'm not sure of the rules on here so I won't name the doctor but he does a lot of xiaflex cases. He says I would be in his top 5 worst cases he has seen but he thinks he can treat with min of 8 injections of Xiaflex and that I will prob still have to have surgery to put a graft in to stabilize. I have excellent circulation (he was kind of amazed) and can still get an erection. I saw another doc in Nashville who is highly recommend and he suggested surgery and forgo Xiaflex but it will involve fore shorting etc. I hear the injections are painful but I tend to lean towards the least invasive first and if it doesn't work then there is always surgical option. Both these doc are well know in urology. Any thoughts comments wold much be appreciated!  

TonySa

Sounds like a good plan, maybe add pentox, low dose daily cialis and traction to xiaflex.
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

 I was treated by the Dr and his team at Mayo. They know what they're doing. Did he mention traction along with the injections?  
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Crooked in the South

Yes had my first treatment today. I purchased the RestoreX and they are going to teach me how to use it tomorrow when I go back for second injection. I tried to do some modeling several times today but it was painful and I was a afraid to really get aggressive like they told me to.  

WhatNext81

We are kinda crossing in threads. Ha! Awesome! They'll get you all set up with the device and give you some pointers. You mentioned being nervous and not retaining info. The device might seem confusing under stress, so ask about you aren't clear on to be noted. It's a lot easier in the office.  
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Crooked in the South

Yes we are crossing threads! They sowed me how to use it and actually put it on me for just a min before my second injection. I had the injection and had it on within an hour!

WhatNext81

That's awesome! Glad to hear that. I'm curious if you notice this since you're undergoing xiaflex and using RestoreX. I was one of three of his patients when I started that was doing both. Anyways, the first five days post the second injection, I was able to get a better and more comfortable stretch while using RestoreX. I realize you're new to the device so you're not suppose to go at it as the instructions advise you to ease into it. Maybe not this cycle but next?  
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Crooked in the South

Sorry for late reply but I didn't just go to the Mayo for Peyronies I had other issues that led me there. I have an autoimmune disorder where my immune system attacks my vascular system (could be the reason I have Peyronies). Long story but when I go its usually for the entire week and it takes a few days to get over it.

So after my second injection on Thursday I got pretty aggressive with the RestoreX. I know I used it 30 min (15 just straight stretch and 15 opposite direction of curve) that night. Due to my pecker being wrapped it was actually easier than hand modeling. Around 5:00 am Friday morning I got a nocturnal erection that hurt enough to wake me up. My first reaction was to flex (I guess a kegel would describe it best) and was really involuntary. Good lord the pain I felt caused me to leap out of bed and left me in a cold sweat. The pain subsided and I went back to sleep. I was ok the next day continued to use RestoreX and hand modeling with no problem. Over the next few days I have come to the conclusion that what happen was I broke the plaque on the right side. Remember I have 85 degree up and 20-30 to the right with hourglass (more like a Curly Q).

As the days have gone on I have gotten more aggressive. Today I used it 15 min on straight but with very little black showing (for those reading this that don't use this device thats means a very high level of tension). I then re-adjusted over the next 15 min bending in the opposite direction of the biggest curve and the last 5 min I had it at 90 degree curve with almost no black showing.

I can tell you this if I am urinating and don't hold my pecker I would have to stand side ways and piss.If I didn't I would piss on the wall, the person to my right etc. Dr Trost told me I was in his top 5 worst cases (maybe top 3) and will prob need at least 4 series. But I can now take a leak and not have to hold it and piss straight ahead like I use to and that was within 48 hours o my 2nd injection. This is why I think the plaque ruptured it was on the right side and is what I believe made me to piss to the right.

I have not had another erection or at least it didn't wake me up. So it will be interesting to see what happens when I do. I plan on using the RestoreX again tonight before I go to bed for 30 more min (total an hour for the day for the first time). I will keep you updated on how it goes!  

TonySa

Amazing to have progress after second injection!  Congrats  
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

That's awesome! Hopefully things continue to go well. Do you mind me asking what the autoimmune disorder is? What symptoms were you having that lead you to have it checked out?
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Crooked in the South

Not at all its called Behcet's disease.  Its a rare disorder that causes blood vessel inflammation throughout your body. I recall the first time I got sick I was 15 took till my late 40"s to finally get some answers as to what I had. Its not something they would ever be able to do a study on if it contributed to Peyronies as there just aren't enough men that have both to do it and it would cost companies loads of money to do it.

My first trip to Mayo was in 2009 for treatment. I have been medicine free through diet and exercise up until Sept of last year. I developed a CVST (which is a rare stroke) which is consistent with Behcet's. I have Peyronies since about that time but it went away awhile. 2 years ago it came back with a vengeance. I have been in medical device sales and mgt for close to 30 years so I did my research on all doctors including Trost. Dean Knoll (sp) in Nashville came up a lot and I went and saw him in 2016 and he told me xiaflex would just take to many injections and might not work (no ultrasound) and recommend surgery. I just couldn't get myself to do it though. I kept researching xiaflex and tracking the data. I saw Trost in Feb when I went to get the blood clot checked out. He did an ultrasound and my plaque was not calcified (think thats the term) and I would be a candidate for xiaflex. He said he thought he could do it and that their data is really looking good using it in conjunction with Restorex. I asked him if I was the worst he had seen and he said no he had used xiaflex on someone with 120 degree bend (if I recall correctly). I still might need a graph to add support to the sides. But that should not involve for shorting.

I used Restorex this morning 15 stretched straight with very little black showing. Let me say I work up to this maybe a min on first notch then expand. I try and get the most tension I can for at least 7 min (10 preferred). then I take down the notches and bend it opposite of the curve. I start out not under tension but once I get use to it I release the tension. I keep working my way up. Today I was able to get 120 degree turn with no black showing (I believe that is 7-10 lbs of tension if I recall correctly.

I'm not sure if Im doing the right thing or if it will even work. I have not had penetrative sex in 2 years and I hope this works. As I said in earlier post I have pee'd to the right for 2 years, now I pee straight which gives me hope!  

WhatNext81

Wow. That sounds like quite the journey. Dr Trost and his team are great. Just as the team at pathright medical. I believe the max tension on RestoreX is 7lbs. But, either way, it sounds like you're off to a great start! I hope things continue to improve for you.  Keep us posted.
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curved

Guys... admittedly apologize up front if this is posted in wrong place but I felt it important to offer my 2 cents on xiaflex. Here is my perspective/ bottom line. If you cannot comfortably have intercourse with your current condition then you should absolutely consider xiaflex.  If you still have an ability to have sex, albeit it different and not exactly the way you want... given the disease, then consider VED and traction first.  Follow the advice on this board in terms of supplements and VED/traction protocol.  You may be one of the fortunate that sees remission/reversal early on.  

Xiaflex can help but it is not a cure.  I had 4 rounds (8 shots) over 6 months and had great results... went from 40 degree downward curvature to 10.  But I had significant side effects.... several hematoma which were very painful.  Additionally I developed even more scar tissue.  I know this sounds counterintuitive... xiaflex is supposed to reduce collagen and allow normal healing to take place.  In my case it reduced my downward curvature to almost normal.... but within 3 months I developed a 15 degree upward curvature and have even more plaque.  I have lost approximately 1 inch in length because of the disease... which I would not say was because of xiaflex but if peyronies is a wound disorder (meaning your body acts abnormally to fixing an injury) then injecting anything into your penis could cause more "wounds" and exarcibating the issue.  This is what has happened to me.  I have more scare tissue (plague... calcified) now then before xiaflex but I am able to have sexual relations albeit with a shortened penis.  I wish I could share with everyone that xiaflex was "the answer", but in my case it was not.  But again, it has allowed me to have a sex life when prior I could not.

BTW... I have done the PRP shots and I found them worthless.  I also tried the gainswave/Eswt and it was very painful for me when it hit my plaque.  I wouldn't necessarily dismiss the ESWT and there are some some studies indicating its efficacy but it didn't work for me.

I am currently trying the H-100 topical cream but I am in the stable phase so there is no reporteded help for that protocol.

I haVe found some early relief on my hourglassing with VED and restoreX...but I am only a month in.

I will focus my efforts on restoreX and VED over the next 3 months and post my results.


Guys... best to luck to all... and thank goodness for this forum which continues to give me hope
51 yrs old; diagnosed 3.5 yrs ago; 90 degree upward bend
But I had no ED
tried all pills, VED, traction, Xiaflex PRP, ESWT, H-100 & stem cells; IF diet. implant surgery with Dr. Eid 3/28/19
to correct deformity - 20 CM Titan 2cm RTE / 1 cm RTE