News:

Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below.
Questions for Dr. Trost



Deformation after surgery. Does it improve?

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

Daremo

I had excision and graft surgery 22 weeks ago with Dr. Levine in Chicago. The surgery was a success, he definitely straightened things. Now after about 20 weeks, I noticed a slight deformation. There's a bulge on the left side, and an indentation on the right side, so my erection is starting to form a slight letter S shape. The head is also twisting to the left slightly. I brought this up at my five month follow up with one of Dr. Levine's associates, she told me that this is probably just healing, one side hill differently than the other, everything is starting to soften and graft, and I should not panic yet.

My question is for everybody or anybody who has had excision and graft surgery, did you get any sort of deformation during healing, and did it improve over time? I really need to know this so please answer if you have any insight at all.

Thanks!
51 Years old, Autoimmune my entire life
Peyronies From Feb 2020. 80 Degree dorsal curve, hour glassing, much pain. 
PEG Surgery WAS on Feb 10, 2021 with Dr Levine
Success: 85% - Graft slipped, deformed, but better than it was.

PeyroniKirai

Hi Daremo,
I'm sorry that I have no information or experience with this, but I noticed that your post has been unanswered for several days so I'm replying to bring it up to the top again. 
  At the very least, I would go back to Dr Levine and ask for better information.  "It's probably just healing" and "don't panic yet" are very poor answers -- unacceptable in fact -- from a doctor.  Doctors are always meant to have statistics based on their own experience, as well as those which are known in the medical community.  So instead of telling you "probably just healing", the doctor should be able to answer the following questions and back up his answer with hard data:
1. is this sort of S-curve common following the surgery I've had?  In what percent of cases is it observed?
2. what is the prognosis, statistically, for the curve to heal?  Provide statistics such as the percentage of cases it heals over what periods of time, and how fully it heals.
3. any treatment recommended?  Should I restrict sexual activity?  In what ways, and for how long?

We all learn from an early age to have respect, and sometimes even fear, of doctors.  Most of us are poor consumers when it comes to our doctors.  You would never ask your house painter, or your auto mechanic, or your waiter at a fancy restaurant so few questions as most of us ask doctors.  And many doctors have learned that by adopting an imperious demeanor, they can prevent most patients from asking questions.  Some doctors make us feel stupid when we ask questions, or they explain things as if we were small children.  But in my experience, the best doctors are capable of having a proper conversation with patients, as equals, even though they have the M.D. degree and we don't. 

I'm not saying your doctor is no good, and I'm not saying you didn't ask the right questions, but maybe you would get some peace of mind if you called back and insisted politely that you wanted these answers.  In my own case, over the years I have learned to interview doctors before using them.  If I feel I'm unable to have a meeting of minds with the doctor, I switch to another clinic.

Meanwhile, I'm hoping someone else in the forum who has actual experience with this will be able to give you some further opinions. 
PK
Age 64, Peyronie's history 4 years, left side hourglass, 20-degree bend to left, no Erectile Dysfunction

Daremo

Quote from: PeyroniKirai on July 23, 2021, 11:34:19 PM
Hi Daremo,
I'm sorry that I have no information or experience with this, but I noticed that your post has been unanswered for several days so I'm replying to bring it up to the top again. 
  At the very least, I would go back to Dr Levine and ask for better information.  "It's probably just healing" and "don't panic yet" are very poor answers -- unacceptable in fact -- from a doctor.  Doctors are always meant to have statistics based on their own experience, as well as those which are known in the medical community.  So instead of telling you "probably just healing", the doctor should be able to answer the following questions and back up his answer with hard data:
1. is this sort of S-curve common following the surgery I've had?  In what percent of cases is it observed?
2. what is the prognosis, statistically, for the curve to heal?  Provide statistics such as the percentage of cases it heals over what periods of time, and how fully it heals.
3. any treatment recommended?  Should I restrict sexual activity?  In what ways, and for how long?

We all learn from an early age to have respect, and sometimes even fear, of doctors.  Most of us are poor consumers when it comes to our doctors.  You would never ask your house painter, or your auto mechanic, or your waiter at a fancy restaurant so few questions as most of us ask doctors.  And many doctors have learned that by adopting an imperious demeanor, they can prevent most patients from asking questions.  Some doctors make us feel stupid when we ask questions, or they explain things as if we were small children.  But in my experience, the best doctors are capable of having a proper conversation with patients, as equals, even though they have the M.D. degree and we don't. 

I'm not saying your doctor is no good, and I'm not saying you didn't ask the right questions, but maybe you would get some peace of mind if you called back and insisted politely that you wanted these answers.  In my own case, over the years I have learned to interview doctors before using them.  If I feel I'm unable to have a meeting of minds with the doctor, I switch to another clinic.

Meanwhile, I'm hoping someone else in the forum who has actual experience with this will be able to give you some further opinions. 
PK

This is very good advice. This I believe is why it's important that follow ups are with the actual doctor who performed the surgery instead of his associates who were not present. I may make a call.
51 Years old, Autoimmune my entire life
Peyronies From Feb 2020. 80 Degree dorsal curve, hour glassing, much pain. 
PEG Surgery WAS on Feb 10, 2021 with Dr Levine
Success: 85% - Graft slipped, deformed, but better than it was.

Frank55

Daremo - thanks for your detailed description of your surgical experience and results. I only have one thought to pass along at the moment. I find it very disappointing and surprising that your follow up appointments have been with anyone other than the Doctor himself. And I don't care how supposedly experienced and competent the Doctor's "associates" are claimed to be.

I would think a professional surgeon would INSIST on seeing their surgical results first hand. And not just once - several times throughout the entire healing process. You've taken the ultimate step in placing your trust in their skills and experience. Why are you yesterday's news simply because your surgery is complete?

I had two appointments with Dr. Levine and decided not to proceed with him because I sensed too much of a "I'm in this for the money" attitude (though I now see, based on my own experience and the accounts in this forum, the surgeon I did choose has the same issue. Live and learn.) Your account seems to support that observation. I hope you see him in person during your future follow up visits.
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline Erectile Dysfunction possible but not taking drugs, shots or using VED
Now evaluating options for next step

bustedchubb

Yeah, totally agree.  I had my follow up with my doctor and his fellow.  The fellow came in first, and he came in after to look things over and to pluck out some stitches that didn't dissolve yet.
45 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, lost length and girth.

Underwent Plication with Dr. Brian Christine in Birmingham, AL on 6/17/2021. Fully recovered with no complications.

Bud luck

Good to know the type of person is Levine, I will never go to a Doctor that doesn't do follow up with their patients.
My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My Erectile Dysfunction is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

AlterEgo

Quote from: bustedchubb on August 05, 2021, 07:56:31 AM
Yeah, totally agree.  I had my follow up with my doctor and his fellow.  The fellow came in first, and he came in after to look things over and to pluck out some stitches that didn't dissolve yet.
were you happy with Dr. Christine?
42 male
main symptoms are hollow feeling shaft
scar tissue on corporas shown on ultrasound
Loss of girth, weak flaccid skin sensitive

bustedchubb

45 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, lost length and girth.

Underwent Plication with Dr. Brian Christine in Birmingham, AL on 6/17/2021. Fully recovered with no complications.

ruff

Did you ever get a follow up with Dr. Levine? It sounds pretty bad for him to not make time for you.
Age: Late 20's
Date of Onset: 2014
Symptoms: Down and left curve 60+ degrees
Treatment: Plication surgery with Levine in 2022 after failed stem cell, traction, shockwave, and other treatments.
Current Status: Now straight. Here to help.

ruff

Quote from: Daremo on July 21, 2021, 08:30:57 PM
I had excision and graft surgery 22 weeks ago with Dr. Levine in Chicago. The surgery was a success, he definitely straightened things. Now after about 20 weeks, I noticed a slight deformation. There's a bulge on the left side, and an indentation on the right side, so my erection is starting to form a slight letter S shape. The head is also twisting to the left slightly. I brought this up at my five month follow up with one of Dr. Levine's associates, she told me that this is probably just healing, one side hill differently than the other, everything is starting to soften and graft, and I should not panic yet.

My question is for everybody or anybody who has had excision and graft surgery, did you get any sort of deformation during healing, and did it improve over time? I really need to know this so please answer if you have any insight at all.

Thanks!

This is very concerning, how are you now? Has it worsened or gotten better?
Age: Late 20's
Date of Onset: 2014
Symptoms: Down and left curve 60+ degrees
Treatment: Plication surgery with Levine in 2022 after failed stem cell, traction, shockwave, and other treatments.
Current Status: Now straight. Here to help.

Daremo

Quote from: ruff on February 24, 2022, 06:13:40 PM
This is very concerning, how are you now? Has it worsened or gotten better?

It got slightly worse but it's purely cosmetic. It works as it should so it's not worth putting my body through that trauma again to fix a cosmetic issue.
51 Years old, Autoimmune my entire life
Peyronies From Feb 2020. 80 Degree dorsal curve, hour glassing, much pain. 
PEG Surgery WAS on Feb 10, 2021 with Dr Levine
Success: 85% - Graft slipped, deformed, but better than it was.