Xiaflex in New York City

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Rbd87

Hello, recently diagnosed with Peyronies Disease and I'm having a rough time dealing with it tbh. I saw a urologist in January who recommended I try traction for a few months to see if that helps. I'm currently at about 70 degree upwards bend and seriously considering the Xiaflex shots. I've come across quite a few horror stories which has me terrified to get it, but a part of me still wants to do it after seeing some positive reviews as well.

Does anyone here know of top doctors in NYC I should see to discuss possibly getting Xiaflex shots?
36
Open relationship
Approx Date of symptoms: Oct 22
35D upward curve
Traction, currently Xiaflex

Sebtp1973


I recommend you consider traveling to Utah to be treated by Dr Trost. A lot of people are doing that now (search this forum). He came up with new protocols to make the most of Xiaflex. He's publishing studies where he's getting better results than anyone. People on this forum who have traveled to his clinic have been very satisfied.
57 yrs old.
Pre-Trost treatment, 110 composite curve (75 up, 35 left)
Post-Trost xiaflex treatment, 0-15 degree curve.

paul21

I highly recommend Dr Bobby Najari. He is a Urologist at NYU Langone in Manhattan. He is very knowledgeable and I had two rounds of Xiaflex administered by him

richestorags

Howdy: Manhattan is a 75-minute drive from my house, however, I have appointments set with Dr. Trost for Xiaflex injections. It is understood that not everyone can make repeated trips to Utah for treatment. Prior to settling on Dr. Trost, here are two doctors that were considered:

Francois Eid MD. He is a contributing member of this board and other folks have reported great results with his Xiaflex administration as well as penile implants.

James Kashanian MD: his credentials look fantastic and he was incredibly fluent about Peyronie's in a few videos I watched. A member of this site had no improvement following Xiaflex injections with Dr. Kashanian. Everyone is different so this may be a one-off

The comment from Paul21 about Dr. Bobby Najari is very encouraging. Good luck in your search 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

Rbd87

Thanks for the replies! I will be looking into these doctors. Ive decided to continue with traction for a few more months before settling on getting any shots.
36
Open relationship
Approx Date of symptoms: Oct 22
35D upward curve
Traction, currently Xiaflex

Mikel7

If you can afford it go with Dr Trost. :)
Lump 4/2020, age 63 , 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

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.

Rbd87

Update

I went and saw Dr Najari and scheduled the appointment to start Xiaflex treatment. Dr Najari was very informative, super kind, and made me feel a lot more relaxed about getting these injections.

My first appointment is in January, I will update again after treatment begins.
36
Open relationship
Approx Date of symptoms: Oct 22
35D upward curve
Traction, currently Xiaflex

Rbd87

An update on my Xiaflex journey so far.

I had an ultrasound and measurements taken back in early January. This process was fairly easy. They injected my penis with Trimix to induce an erection, which was not at all painful for me, and it happened very quickly. After it kicked in the doctor took the measurements and another doctor performed the ultrasound. After this was over they gave me another injection that made me soft, this one did go on a little longer than the first, but not painful just strange to think about what was happening.

After getting the approval by my insurance and doctors office receiving the Xiaflex, we scheduled the first two injects to take place yesterday and today. I did feel a slight pinch with the Xiaflex, but nothing close to what I was expecting. Honestly I was fully prepared to faint. The whole process took about 20-30 seconds from the time the doctor counted me down until he was done.

For now I've been told to start on the stretching tomorrow, and abstain from any sort of masturbation/sex.

I'll have a follow up appointment in four weeks where the doctor will take measurements of my progress. Then in six weeks I will be getting another cycle of the two shots.

Will continue to update!
36
Open relationship
Approx Date of symptoms: Oct 22
35D upward curve
Traction, currently Xiaflex

Rbd87

Quite a bit of bruising/swelling appeared on the injection side of my penis. The doctor told me this could happen and that most people experience this after the second injection. It started the night of my second injection, and doesn't appear to be worsening the day after. I woke up in the middle of the night a couple of times with a very painful erection, but it did subside after a few minutes and I was able to get back to sleep without any other issue.

I want to start doing the modeling as I feel this is the time to do so, but I'm going to wait a day or so until the bruising/swelling goes down a bit more as to not irritate anything else.
36
Open relationship
Approx Date of symptoms: Oct 22
35D upward curve
Traction, currently Xiaflex

Rbd87

The swelling has completely gone down, I still have a little bruising left but it continues to fade each day. I've been doing the modeling every day, three times a day soft, and then once erect. When stretching this morning I noticed the curve has gone down some, which is very exciting. Looking forward to continuing this treatment and seeing the final results!

I have a follow up appointment in two weeks to measure progress, I will try to update after with results of that.
36
Open relationship
Approx Date of symptoms: Oct 22
35D upward curve
Traction, currently Xiaflex

njelbowdrop

Hi just read this. Congratulations on your journey and overall success so far. Please keep us updated on results!
39 years old
 
35 degree curve after quitting Finasteride
Significant ED since college, but no deformity. Starting to believe I've had scar tissue since then.
PMP - 6 hours a day. Curve unchanged but works wonders for ED I have had half my life.

Rbd87

I had my follow up appointment with the doc, curve has gone down by 5 degrees. Round two starts next week. Not much else to update, but I am thrilled with the results so far!
36
Open relationship
Approx Date of symptoms: Oct 22
35D upward curve
Traction, currently Xiaflex

nycpdguy

Hey RBD87 - hope you're doing well.

Seems like we're in pretty similar boats as 36 year olds in NYC with symptoms that started around the same time (I was August 2022). I had a 2 rounds of measurements and an ultrasound by Dr. Najari, but ended up getting a third opinion and going with Dr. Mulhall at MSK for my treamtment. That said, Dr. Najari was so thorough and really took his time with me. He definitely spent more time than Mulhall ever has, but here I am - having just had my first Xiaflex injection yesterday from Mulhall.

I'm really keen to here how you're progressing, any improvements you're seeing since you're a bit further along with Xiaflex, and what the traction protocol looks like.

Are you using RestoreX? How many times a day and for how long? And when did you start with molding and traction after your injections?

For context, I had injection #1 yesterday and my second will be next week (7 days later). I'm instructed to begin traction 7 days from that second injection, but this seems to be different from your timeline and definitely different from the aggresive methods of Dr. Trost in Utah.

Anyway, it would be amazing if you continue keeping us posted. I'm going to share an introductory thread of my own to chronicle my journey as well.


Wishing you all the best of luck - we got this, man.
36
Married 1 year (together for 6 years)
Diagnosed: Oct. 2022 (noticed July '22)
40D left curve, 35D upward curve
Tried traction using RestoreX
Started Xiaflex: April 2024 w/ Dr. John Mulhall

Rbd87

<ADMIN - full previous quote deleted. Please use REPLY per the forum rules>

Hello! Apologies, I'm just seeing this.

I think I'm progressing pretty well. It's been three weeks since my second round of injections and I'm continuing to see improvement!

I've been following the stretching instructions given to me which were three times a day for 30 seconds and one 30 second stretch when erect.

I haven't been using a traction device yet, but plan to discuss that with my doctor at my next appointment. To be honest I've been a little nervous to use the traction device and somehow cause more damage. I've read some Xiaflex horror stories that have given me a bit of caution in this whole process haha. But the three and one stretch routine seems to be working for me!

Next Thursday being my fourth week after the second round, I'll have measurements taken at the doctors and then I have round three two weeks after.

Wishing you all the best in your journey and I'll be following along on your updates!
36
Open relationship
Approx Date of symptoms: Oct 22
35D upward curve
Traction, currently Xiaflex