Logistics of Seeing Dr. Trost/Helpful hints

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

richestorags

Folks,

I just got back from seeing Dr. Trost. Incredible experience and results will be posted separately. This is purely to discuss the logistics of a visit:

Airport: Salt Lake City is the closest and is about a 45 minute drive from Orem.

Transport to Orem: There are Ubers, however, I wanted certainty of pickup to and from the airport. City Taxi of Orem did a great job. Not cheap at $150.00 each way but as before, I didn't want to risk waiting on an Uber and scheduled pickups in advance with City Taxi. Ubers will probably be cheaper.

Hotel: The Towne Place Suites Marriott in Orem was excellent. There is a discount code on Dr. Trost's website that saves you $50.00 per night. The room was more of a studio apartment than a hotel room. It had a nice kitchenette with microwave, stove, dishwasher, sink, full size fridge and a surprising array of pots, plates and silverware. The room was clean and modern.

Food: Right across the street from Towne Place is a supermarket (Winco Foods), McDonalds and Taco Bell. NOTE: Winco only takes cash and debit cards, no credit cards. The do sell beer starting at 7:01 AM  ;D

Getting to his Office: It's only a six-minute walk to his office from Towne Place. BUT: you have to cross several large intersections, two of which are highway on and off ramps. People haul @$$ on 800 North and crossing the street took patience and timing.


Scissors: Whether you are checking a bag or using a carry on, plan on bringing a pair of scissors. Why? Dr. Trost first induces an erection, injects and then wraps your fully-erect penis. At first, urinating was no issue but as the erection subsided, I withdrew inside the wrapping and urinating produced a urine-soaked wrap. Having scissors on hand to trim the vacant end of the wrap would have prevented that. I picked a pair up at Winco prior to the second set of injections and was able to trim the  wrap but by then it was too late. I am not a doctor, however, it may be prudent to ask him if it is acceptable to trim back excess wrap to avoid urine sponge syndrome.

Wrapping: Dr. Trost will show you how to wrap. I took a video of the process as to be able to effectively replicate his method. My first attempt was tragic but skills rapidly improved.

RestoreX/Airport Security Dr. Trost strongly recommends use of RestoreX soon after injections. PLEASE NOTE: If you put a RestoreX in carry-on luggage they may inspect your bag and ask  you what it is. A bit embarrassing but forewarned is forearmed. Heck, I checked a suitcase and found a note inside that my suitcase had been opened and inspected on the return trip. The RestoreX box had clearly been opened  ???  :o

Pulling: Dr. Trost recommends daily RestoreX use for a minimum of 30 minutes, however, pulling at 10lbs of force is included in the regimen as well. Here is a contraption I made to ensure particularly precise Peyronie's pulling power. This photo was taken pre-injection.

Hope this helps.  

You cannot view this attachment.


 
-Peyronies Disease onsite 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at 20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence

Sebtp1973

Thanks for the update.

I've taken my Restorex in my carry on bags many times, with my bag going through the X-ray machine, and they never said anything.

I don't bring it in the box. I'm going to from now on, bring it in a zip lock and include the instructional manual in the zip lock, and show them that if it ever does get flagged and they ask what it is.  
57 yrs old.
Pre-Trost treatment, 110 composite curve (75 up, 35 left)
Post-Trost xiaflex treatment, 0-15 degree curve.

Mikel7

Great post and glad to hear you got in to see him!
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

danh

Nice contraption (pic) for measuring the pulling. Can you actually get 10+ pounds on the scale?
age 62. Onset 2010. 30deg to the left
Did ved therapy for 6 mo. Some help. Lived with it.
In 2020, left bend increased 50-60 
Jan 2023 Did some Xiaflex shots w/ Dr. Trost.
Now, slight curve with hourglassing. hardly noticeable.
Pleased with results.

richestorags


Dan, thanks for your note. Yes, I can get to 10lbs on the scale without pain. It's not the most pleasant experience but it has to be done. It's waaaaay too soon to declare victory, however, all of my lost length appears (emphasis added) to be back when I crank the RestoreX to the last notch on the standard rods for straight traction. I might test out the extended rods and see what happens. Today marks three days since the last injections and there have been a few posts that Xiaflex is active for 3 days max. While not fun, there will be a few rigorous "workouts" today.  :)  ;D  ;)    
-Peyronies Disease onsite 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at 20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence

Dorian

Hello,

I sent you a PM as I didn't want to hijack the thread but I'm not sure if you saw that and I have my 1st Xiaflex shot tomorrow. I have this with a local doctor but would like to know more about Dr. Trost's method regarding a few aspects.

1. I was wondering if you could describe the wrapping technique/protocol?

2. Did he recommend Restorex the day of the 1st shot or after the 2nd shot or what exactly?

Thanks and good luck on your results!
Dorian
47
Noticed less morning, and less strong, erections 2020
Noticed dents/groove/hourglassing/hinge near base 2021.
Urologist had me start Pentox, Vit E, Cialis, RestoreX.
I also started VED and all supplements in the guide.

richestorags

Dorian,

Here is a video from Dr. Trost where he describes methods to achieve optimal results with Xiaflex. Every person is different so please take my experience with a grain of salt:

https://www.youtube.com/watch?v=OGREchr1620&t=11s

  • My (unit) was deemed "bulky" by Dr. Trost and more numbing shots were needed than typical patients.
  • Dr. Trost offers nitrous oxide to patients that request it and I had it on day 1. Heck, if insurance is going to pay for nitrous, why not go for it!  :)  ;D I should have gone for it on day 2 as the numbing shots were far more uncomfortable than the Xiaflex injections
  • Wrapping: this is described in the aforementioned video. The first layer is flexible gauze and then a layer of Coban is wrapped over the gauze to hold it in place. It was akin to a well-fitting pair of socks: loose enough to not be constrictive but tight enough to not fall off
Tylenol and Motrin are your friends. Tylenol helps with pain and Motrin helps with inflammation
  • In-Office Pulling: it was made clear that due to my "bulk", a large singular pop was unlikely. Dr. Trost was able to get three small pops.
  • Pulling and RestoreX at home: this is an area where consultation with your doctor will be needed. I was instructed to use the RestoreX 12 hours after the second set of injections but this may be different for other patients. This can not be stressed strongly enough. However, ......HOLY CR@P, pre-Xiaflex I could only get a few clicks into the standard rods on straight traction but post Xiaflfex, off we go! The first injections were one week ago tomorrow and I am now at the end of the standard rods. Pre-injection, I could counterbend to 120 degrees but it was not fun. Getting to 120 degrees is now easy.
  • Side Effects: The protocol used by Dr. Trost is rigorous and he made it clear that pulling and RestoreX were critical to success. I use the photographed device a few times a day to get an accurate 10lbs of pulling tension and am using RestoreX for at least 60 minutes a day. The swelling and bruising is receding but it is still there. The process is more of a hassle than painful as wrapping does not play well with showering and taking a dump. Heck, peeing is no peach while wrapped as I was discharging in all different directions. I finally said "screw it" and urinated in the shower.
  • Bathing: Others have mentioned this, however, I unrolled condoms and pulled them over the wrapped unit prior to getting in the shower. Condoms kept things perfectly dry.
  • I started putting Neosporin on my (penis), particularly on the head as that somehow got chapped?!?!? Hindsight being 20/20 I would have put Neosporin on the whole thing from the beginning and then wrapped the gauze. That is just me and is probably a question better posed to a doctor.
  • Dr. Trost will offer a video consultation at no cost. I made a good-sized donation to his charity, Cure Peyronies Disease, prior to the consultation as he is a professional and my MO is to give back. Perhaps you could go through round one with your doctor and arrange for a video with Dr. Trost prior to round 2?

Oh, one other thing to add some humor: After I left his office, I went to Taco Bell and got 9 Doritos Locos Tacos Supreme. And put three packs of Diablo sauce on each taco. This was not conducive to a pleasant experience and dietary discretion is recommended.  
-Peyronies Disease onsite 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at 20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence

Dorian

Thank you much for answering my questions and beyond. I appreciate your time in putting all this together.

Great thread of information here sure to help many.

Perfect timing for me as I just had my initial shot today with my local doc and will have the 2nd on Friday. BTW, I did have a video consult with Dr. Trost before. Excellent doctor, and human being, all around. Unfortunately, he is not as bullish on treating less than 30 degrees or those with indentations and hourglassing as their primary issues. (I'm sure part of that is Xiaflex guidelines for eligibility.) Otherwise, I most definitely would have traveled to get treated by him.

I do like my local doctor and he has a lot of experience with Xiaflex and also is very aware of what Dr. Trost is doing. (And is a big fan of Restorex.) He was fine with me asking questions and bringing in details, of Dr. Trost's protocol, as I try to get a bit of "the best of both worlds" while addressing my specific situation. You've given me a few more items I will run by him on Friday when I get the 2nd shot.

One last question as I saw in another thread you are, or were, using VED. I know Dr. Trost is not a fan of VED in general but was there any discussion of when you could safely resume using it?

Thanks again and good luck! (Your comment about your post-shot Restorex use sounds very promising.)

Best,
Dorian

 
47
Noticed less morning, and less strong, erections 2020
Noticed dents/groove/hourglassing/hinge near base 2021.
Urologist had me start Pentox, Vit E, Cialis, RestoreX.
I also started VED and all supplements in the guide.

richestorags



Dorian, we did not discuss a VED and commentary I've seen on this board and elsewhere recommends against using one in conjunction with Xiaflex treatment. Last night I had an erection, blew up like a balloon and am now wrapped again. Oh well, two steps forward, one step back. I may have been too aggressive with the RestoreX and will ease up or a few days until things settle down. Xiaflex is no joke.  
-Peyronies Disease onsite 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at 20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence

richestorags

Whoa....things were going well until I went unwrapped the night of 03/22/2023-03/23/2023. An erection caused me to blow up like a balloon....no spit, I was wider than long. Ugly black patches on the underside of my d!ck and a strange soft tissue bulge on the left side. I wrapped before going to bed last night and while the night time erections were uncomfortable, they did not result in inner tube blowouts as seen Wednesday night. I tried to use the RestoreX this morning and couldn't even get close to clamping it without nasty pain. Hand modeling ain't so bad. Perhaps a lesson learned, wrap at night even if you don't think  you need it. Failure to wrap has set me back for an unknown number of days.  
-Peyronies Disease onsite 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at 20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence

richestorags

Partial update: Dr. Trost phoned in a prescription for Indomethacin (anti inflammatory). Swelling from the blowup is receding and the purple blotches are fading. RestoreX use has resumed. Clamping still hurts but it has to be done. My (unit) has what looks to be a dent where the plaque was. I continue to wrap at night as to avoid a blowout from nocturnal erections.  
-Peyronies Disease onsite 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at 20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence

richestorags

Things have calmed down to the point where there is no visible bruising/discoloration. There is still lateral toad-like swelling but this is likely due to the blowout of early AM 03/22/2023. I'm at the end of the standard RestoreX notches on straight traction and am reliably getting to 120 degrees on counterbending. This was not possible pre-injection. Others may have a different experience, however, hindsight being 20-20 I would have continued wrapping for 7-10 days post injection. That is my situation only and yours may be different. Consultation with a medical expert is warranted.  
-Peyronies Disease onsite 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at 20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence

Pfract

It was very interesting to see your device to measure the pulling power of the device. It is the first time I see it being done.

Thank you for sharing it with us. Hopefully it puts to rest the ones with doubt on the stretching strength of the device.  

Sebtp1973


Does Trost ask you to counter bend with Restorex right away, or just straight. Seems like the unit would be too beat up the first few days to counter bend. Also, doesn't the wrapping make counter bending difficult?
57 yrs old.
Pre-Trost treatment, 110 composite curve (75 up, 35 left)
Post-Trost xiaflex treatment, 0-15 degree curve.

richestorags


Dr. Trost suggested full-on use of the RestoreX 12 hours after the second injections. I went pedal to the metal because Xiaflex is supposedly active for 1-3 after injection and I was able to get to uncharted territory on the first use, both for length and counterbending. The wrap actually wasn't much of a factor because it flexed. Now the good part....

I, um, erh, uh, "induced" an unwrapped injection yesterday and my unit appears normal. There is a slight dorsal curve but I had a slight dorsal curve prior to onset of Peyronies Disease. I have placed the second set of injection on temporary hold because of insane business travel and also to see if Dr. Trost thinks we have reached a "one and done" treatment state. Daily Restorex use will continue to ensure that there is no regression.  If it takes another set of injections, so be it, I know what to expect, what to do, what not to do. This was not the easiest journey particularly with the blowout but I would do it again in a heartbeat.  
-Peyronies Disease onsite 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at 20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence

richestorags

Quote from: Pfract on April 09, 2023, 01:58:19 PMIt was very interesting to see your device to measure the pulling power of the device. It is the first time I see it being done.

Thank you for sharing it with us. Hopefully it puts to rest the ones with doubt on the stretching strength of the device.

Thanks. I showed a photo of the contraption to Dr. Trost and he said his Peyronie's patients are very creative when it comes to things like this.  
-Peyronies Disease onsite 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at 20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence

danh

Quote from: richestorags on April 10, 2023, 05:18:49 AMI, um, erh, uh, "induced" an unwrapped injection yesterday and my unit appears normal. There is a slight dorsal curve but I had a slight dorsal curve prior to onset of Peyronies Disease. I have placed the second set of injection on temporary hold because of insane business travel and also to see if Dr. Trost thinks we have reached a "one and done" treatment state. Daily Restorex use will continue to ensure that there is no regression.  If it takes another set of injections, so be it, I know what to expect, what to do, what not to do. This was not the easiest journey particularly with the blowout but I would do it again in a heartbeat.

That's great news. Especially after your incident. (blowout). I'd say your agressive procedure may keep you from getting more injections. Good for you. I only had one round with Dr. Trost, and are very satisfied with my result.
Just think, in a couple more days you'll be able to test it out. Yahoo! Haha.
 
age 62. Onset 2010. 30deg to the left
Did ved therapy for 6 mo. Some help. Lived with it.
In 2020, left bend increased 50-60 
Jan 2023 Did some Xiaflex shots w/ Dr. Trost.
Now, slight curve with hourglassing. hardly noticeable.
Pleased with results.

Sebtp1973

Quote from: richestorags on April 10, 2023, 05:18:49 AMDr. Trost suggested full-on use of the RestoreX 12 hours after the second injections. I went pedal to the metal because Xiaflex is supposedly active for 1-3 after injection and I was able to get to uncharted territory on the first use, both for length and counterbending. The wrap actually wasn't much of a factor because it flexed. Now the good part....

I, um, erh, uh, "induced" an unwrapped injection yesterday and my unit appears normal. There is a slight dorsal curve but I had a slight dorsal curve prior to onset of Peyronies Disease. I have placed the second set of injection on temporary hold because of insane business travel and also to see if Dr. Trost thinks we have reached a "one and done" treatment state. Daily Restorex use will continue to ensure that there is no regression.  If it takes another set of injections, so be it, I know what to expect, what to do, what not to do. This was not the easiest journey particularly with the blowout but I would do it again in a heartbeat.

Glad things are going well for you. What was your starting curve, and what is your estimate of the curve now? Also, did you have any dents or hourglassing, and do you have any now?
 
57 yrs old.
Pre-Trost treatment, 110 composite curve (75 up, 35 left)
Post-Trost xiaflex treatment, 0-15 degree curve.

richestorags


Howdy: Dr. Trost estimated the initial curve at 70 degrees. He and I spoke yesterday to review a a post-treatment photo and he guesstimated it's now 20 degrees. The plan is to use RestoreX for 60 minutes a day for a another month or so and then see where things stand. I had a degree of dorsal curve before the onset of Peyronies Disease and post-treatment curve looks similar so I'm happy. Looking from the top down there does appear to be some hourglassing where the the injections took place. It's not severe. No dents that are readily apparent. That was not the easiest endeavor particularly in light of the blowout but I would do it again in a heartbeat.  
-Peyronies Disease onsite 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at 20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence

Sebtp1973


Wow! That's quite an improvement! Dr Trost is working miracles. His aggressive techniques need to be the new standard. I'm going there next week.  
57 yrs old.
Pre-Trost treatment, 110 composite curve (75 up, 35 left)
Post-Trost xiaflex treatment, 0-15 degree curve.

richestorags


Yes, he is awesome and getting results that are not frequently reported elsewhere. A couple of things:

-He actually measured my curve at 70 degrees on physical exam, it was not an estimate (my bad)
-I went pedal to the metal with the Restorex hours after the second injection. Xiaflex is supposedly active for 1-3 days after injection so I made the most of it. We got three small pops when he did the in-office day pulling on day 2, however, Restorex induces what he called micro fractures in the plaque. First Restorex use after injection, I cranked all the way to the end of the standard rods on straight traction and then got to 120 dgrees on counterbending. I waited 60 minutes and did it again. The next morning was a Saturday and the flight home was on the early side....I got up early and did two similar Restorex sessions before the car picked me up. Aggressive? Yes. Did it seem to work? Oh heck yes.

Suggest that  you ask him about replicating what I did as I am not a doctor and every person is different. Scissors for trimming the wrap after the first injection, cold packs, tylenol, motrin etc were helpful. Good luck and please keep us posted.  
 
-Peyronies Disease onsite 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at 20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence

MRowdy

Thank you for posting your experience with Dr Trost.  Have your excellent results been maintained since the injections 6 months ago?  How long did you need to wait to get into see him? Thanks
55 yo. 2019 lower right indentation, resolved with daily Pentox, CoQ10, Restorex. Came back Nov 2022 with upper slight right curve, May 2023 upward curve started. Since Sildenafil, Pentox, CoQ10, Restorex recent PRP injections & VED.

pdhpt

Many thanks for sharing your 'contraption' photo.  I have not started my Xiaflex injections yet but have been using RestoreX for almost 4 weeks.  I follow the instructions religiously but often wonder if I am truly getting the benefit of a 10lb pull. This will be quite helpful! Your posts are encouraging and I hope my experience will be similar.
Age 62, married
Healthy & active (running/strength 5-6 days/week)
Peyronies Disease start @ June 2023 no known injury
Upward bend @ 45+ degrees
Diagnosed Sep 2023
RestoreX & about to begin Xiaflex injections