I'm Probably Getting on the Xiaflex Train

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richestorags

Folks, this one was a surprise. After 4 months of RestoreX use with marginal improvement, I saw a true Peyronie's expert yesterday. His credentials are impeccable and he is a true specialist in the disorder, not a general urologist who also treats Peyronies. He was involved in the clinical trials that lead to the approval of Xiaflex and was initially not supportive of the drug. He went on to say that injection patterns have changed over the years from a single site to a fan pattern as to completely encompass plaque. He also gave measured expectations for improvement and said to not expect miracles. His honesty was appreciated.

He did and exam and said there is a 2cm area of plaque mid-shaft which shocked the shirt out of me because I couldn't feel anything. Then again, I didn't know what plaque felt like. Next up is an ultrasound and probably injections.  Yey!  
-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

Sonic

Who is this dr? Is it Dr. Trost? He's probably the top Peyronies doc in the world.

Good luck with the Xiaflex injections. It's a damn shame it was taken of the market in the EU!!!
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

LWillisjr

Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

richestorags

Quote from: LWillisjr on January 20, 2023, 09:06:35 AM
And the expert you are seeing is ...... ?

Hossein Sadeghi Nejad, MD of Hackensack NJ. Here is a copy and paste of his bio, with highlights being immediate past president of the SMSNA and Castle Connolly Top Doctors since 2012. :

"Dr. Hossein Sadeghi-Nejad graduated Magna Cum Laude from Bowdoin College in Brunswick, Maine where he was the recipient of the Goodwin Commencement Prize. He received his medical doctorate from the McGill University School of Medicine in Montreal, Canada and served as an Intern and Resident in General Surgery at the University of California in San Francisco. Dr. Sadeghi-Nejad completed his urological residency and fellowship training in Male Reproductive Medicine and microsurgery at the Boston University Medical Center under the auspices of Drs. Robert Krane, Irwin Goldstein, and Robert Oates.

Dr. Sadeghi-Nejad is Professor of Surgery / Urology at Rutgers New Jersey Medical School, Chief of Urology at the VA NJ Health Care System, and the Director of the Center for Male Reproductive Medicine at the Hackensack University Medical Center. He is currently part of the Summit Medical Group. Dr. Sadeghi-Nejad has served as a member of the American Urological Association global task force and has been selected for multiple editions of Top Doctors: New York Metro Area, New Jersey Monthly magazine's "Best Doctors in New Jersey" and NY Magazine Top Doctors 2020. He is one of only a handful of New Jersey urologists listed on Castle Connolly's America's Top Doctors since 2012. Dr. Sadeghi-Nejad is certified by the American Board of Urology and is a member of numerous professional organizations including the American Urological Association, The Sexual Medicine Society of North America (SMSNA), the International Society of Sexual Medicine (ISSM) the Society for Study of Male Reproduction, and the American Society of Reproductive Medicine (ASRM). He is a scientific reviewer for numerous peer-reviewed journals and serves on the editorial board of the Journal of Sexual Medicine. Dr. Sadeghi-Nejad is the past president of SMSNA and is a member of the Board of Directors. In 2015, he was the recipient of SMSNA's highest distinction, the Distinguished Service Award.

Dr. Sadeghi-Nejad has been a participant in multiple Plenary Sessions of the American Urological Association Annual Meeting and is a co-author of the 2014 United States Surgeon General's Report. From 2011 to 2015, he was a member of the Board of Directors of the NY Section of the American Urological Association as the New Jersey representative. From 2015 to 2019, Dr. Sadeghi-Nejad served as a member of the American Urological Association Guidelines Panel, a group tasked with preparation of evidence-based practice guidelines for urologists in the United States. He was recently selected to serve as the Associate Editor in charge of Men's Health for the AUA News, the official newsletter of the American Urological Association. Dr. Sadeghi-Nejad was one of 16 members of the American Board of Urology (ABU) Examination Committee from 2017-2021 and has been selected to serve as an examiner for the ABU oral boards starting in 2022."
-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

LWillisjr

Great, good to know for folks on the east coast.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

richestorags

Bumping this thread with updates: the physician listed above is moving his practice out of state and I will not be following him. A donation was made to CurePD and I spoke with Dr. Trost last week.....wow, what a difference. 1st doctor said 45 degree curve, Dr. Trost looked at photos and said 75-degree curve. There were a multitude of observations he had that the other doctor did not mention. While Manhattan is only 75 minutes from my house, the first set of injections have been booked with Dr. Trost in mid-March. If it's worth doing, it's worth doing right. There is a Marriott near his office that provides a discount for his patients. Right across the street from the Marriott is a big supermarket, Taco Bell and a sushi place. Heck, I'm gonna turn this into an adventure. Well, that's the plan right now.....getting off the plane after injections and then modeling probably ain't gonna be a picnic. Humor does help....my wife said, "Don't get bent out of shape by 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

That's too bad about your doctor. But, the Utah trip is definitely worth doing. It's a great clinic. I'm two plus weeks out from my second shot and right now the hardest part is the four week hiatus from sex. We're ready. 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.

richestorags

Hey, it would be interesting to learn of improvements in your condition. Dr. Trost was an absolute gentleman and professional on the phone and the same is expected during treatment. The question becomes, what happens after the plane lands and modeling is up to the patient? I have a RestoreX and am ready for a tough regimen. Gulp.....no pain, no gain.  
-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

Richestorsgs.
I do have improvements. Just waiting to see if any more come with in the next few weeks with all the modeling//traction. I posted some results here... https://www.peyroniesforum.net/index.php/topic,6362.50.html
I'd say a 20 degree improvement at this point. Very happy with results at this time. May not get more shots. At least not at the 6 week period. I'll wait.
As far as the plane landing. I followed the Doctors orders. To a tee. I was sore. Counter bending was very painful. So I vas very gentle and cautious with it. A few emails to Dr. Trost assured me everything was normal and "keep up the good work".  I'll post more results in a few weeks.
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

Quote from: danh on February 18, 2023, 07:32:24 AMRichestorsgs.
I do have improvements. Just waiting to see if any more come with in the next few weeks with all the modeling//traction. I posted some results here... https://www.peyroniesforum.net/index.php/topic,6362.50.html
I'd say a 20 degree improvement at this point. Very happy with results at this time. May not get more shots. At least not at the 6 week period. I'll wait.
As far as the plane landing. I followed the Doctors orders. To a tee. I was sore. Counter bending was very painful. So I vas very gentle and cautious with it. A few emails to Dr. Trost assured me everything was normal and "keep up the good work".  I'll post more results in a few weeks.

Howdy: thanks for the info and link. Being at 75 degrees I'm planning on a minimum of 2 trips to Utah and am prepared for three. I did screw up with the RestoreX: according to the instruction manual I should have moved the clamp to position 2. I used it for 3+ months on Position 1 and saw no improvement, probably because I was counterbending healthy tissue and not the plaque. The clamp has been moved to position 2 and there's definitely a difference as the plaque is palpable when counterbending. I'm going to go full throttle with RestoreX leading up to the initial visit with Dr. Trost, the logic being to literally and figuratively get the plaque moving in the right direction.  
-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