Restorex additional info by Dr.Trost - time limits & instruction for lost length

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Chiefy

I received my restoreX a couple days ago.  Due to substantial loss of length following incision and grafting surgery, I couldn't stretch far enough to even get this thing on.  I contacted customer support who provided me with some additional instructions as a lot of guys have the same problem.  I've attached what I received as I doubt I'm alone.  I haven't tried it yet, but seems reasonable.

While their customer support was very responsive, be aware that if you break the seal on the box, you can only return it for 50% of purchase price, even if you didn't use it, as in my case.  
Peyronies for 2+ years.  Have ED for 8 months
Tried Xiaflex, 3 cycles, zero improvement
Had incision & grafting surgery, Feb 2019.  Fixed curve (I think) but resulted in substantial length & girth loss. 
Facing implant as remaining option

Hawk

Below is the response in full I got from Dr. Trost about how long you can safely use the RestorX.  I have communicated with him a few times and find him to be extremely giving and helpful.

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Hello       ,

Congrats on the forum.  I think it has certainly been a helpful resource for many patients, and we link to it on our website as one of only a few recommended resources (and the only recommended forum).

Good question about Restorex.  The short answer is, I don't recommend doing more than 30-90 minutes daily to patients.  Here is the long answer though:

In our studies, we found similar curve improvements among men who used it 30 minutes compared to those who used it for 90 minutes.  We did find that length was likely time dependent, and those who used it for 90 minutes had greater improvements in length compared to 30.

I think it's important to recognize that it is a very different device compared to other traction devices out there, and so, the instructions for use for those devices should probably not be extrapolated to Restorex.  In our experience at Mayo, we did a study years ago looking at outcomes of various other devices (X4, Andropenis, Penimaster, etc.), and we found that there were no objective differences in curve or length improvements among those who used the devices overall, and even among men who used it for 3-9 hours daily.  These results were similar to a study that Wayne Hellstrom did as well looking specifically at Andropenis (which also showed no benefits overall and possible minimal length increases (a few millimeters) even after extended use.

It was actually these studies which led us originally to design Restorex, since the concept of traction is good, but there just hadn't been a viable device out there as of that time point.  Restorex produces a much larger traction force on the penis (roughly at least 6x more in our data), and in our experience, many of the other devices didn't produce any traction at all or any consistent traction when we observed patients using them (since they can't be adjusted as much once in place, which is very important).  I only mention these details to emphasize that it's not an apples-to-apples comparison to suggest that since you can do Andropenis, X4, Penimaster, or whichever device for 9 hours, you can probably do it for Restorex as well.  Since those other devices often don't result in much (if any) actual traction for many patients, it's not a big deal to use them for 6+ hours daily.  However, since Restorex creates much more force, we honestly can't say what might happen for someone using it 6+ hours daily.

I have had patients ask me how long it could safely be used.  The truth is, beyond 90 minutes daily, we just don't have any real idea what the side effects might be.  But up to 90 minutes, we haven't seen any persistent side effects in our data.  Also, we probably won't be able to answer that for some time, since it's really difficult to convince patients to go into a study where they need to do a therapy for such a long period of time (we even had difficult with compliance with the 90 minutes in our original study).  With priapism (a condition which results in loss of fresh blood to the penis), we see permanent penile damage set in around the 12 hour mark.  So, that is probably an example of an extreme extent.  But traction is different since it doesn't cause loss of blood to the penis.  Also, it's hard to know since many people will stop use for a period of time to 'let it rest' before resuming.  But we would never recommend for someone to use it for such an extended period of time.  And we don't know what other type of damage may occur, since priapism and traction are completely different scenarios.

In general, I tend to fall on the side of caution.  As one example, we had a patient at Mayo who read about serrapeptase on the forum and decided to inject it intravascularly to treat Peyronies Disease.  He ended up losing his arm (true, and very sad story).  I have seen dozens of other examples where patients were similarly harmed by reading something on a forum and deciding to do it (I just had two more cases in the past week which were examples of this).  So, I would be cautious, particularly if someone recommends doing something which falls outside of recommendations by Peyronies Disease specialists.

If someone wants to test out a new medication, therapy, or different technique, I'm 100% supportive.  However, it should be done in a controlled scientific setting, where we can get real and reliable data.  If there is a strong enough desire to do a study like this, people can reach out to us, and we'll perform it (we set up a charity to do things just like this via crowdfunding – peyronies.org).  Email me the study you want done next, crowdfund the costs, and let's get it done!


Hope this helps!

Landon
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums