Dr Kramer exclusively using AMS

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LightAtTheEndOfTheTunnel

Hey Hawk,

I posted this on another thread but was told to make it my own topic. I read tshug's most recent post and he detailed his experience visiting Dr. Kramer. I am scheduled to visit Dr. Kramer in a few weeks and I had a few specific questions that I'm hoping you could answer.


First of all thank you so much for all you do and creating this platform. I've been on this forum for over 4 years and not once did I click on the implant section. I could never even have wrapped my head around the possibility of getting an implant when this nightmare started. I was 29 when it first stared and I'm 33 now. Even if you asked me a couple weeks ago it wasn't even a thought in my head.

I've tried everything. Pills, Restore-X, VED, on and on. Nothing has worked. I can still get good erections but they don't last long. My penis is straight and I haven't lost much length if any but I have significant narrowing, hourglassing & dents. So I can have sex, but only in certain positions. Any position when the girl is in control is painful and scary. I'm petrified that my penis will fracture due to the instability caused by the narrowing. It's like.... even though I'm hard the areas with the scar tissue are still just soft and rubbery. And once I finish.... I'm finished. Absolutely no possibility of a round 2. My penis is a painful dented mess for hours and sometimes days after sex or masturbation. And the worst part of all the pain. 4 years of non-stop painful erections. I finally reached my breaking point a couple weeks ago. I was in bed for days, seriously depressed and suicidal. Not that I want to die, it's just that thought that constantly runs through my mind of "there is no hope" and "i'll never be able to really please a woman or have good sex again". The reviews on plication and grafting are mixed at best, I have no desire to waste anymore of my youth trying one of those surgeries with zero guarantee things will get better.

But a couple weeks back I was browsing the forum late at night as I've done constantly over the past 4 years searching for any sort of answer to my problems and the implant forum just happened to catch my eye. I clicked on it and ended up reading for hours. For the first time in what seems like a lifetime I genuinely felt a sense of hope and optimism. The way Hawk and so many others described their experience as life changing having finally gotten their sex life back made me so happy and hopeful for my own future. I then saw the glowing reviews about Dr. Kramer and dug a little deeper. I was thrilled to find out he was now working for a practice in Massachusetts because that's where I reside also. So I checked to see if he accepted my insurance and he does. I was beyond ecstatic and felt like at the very least I had an option to get my life back on track. Then I read this post and got extremely discouraged again. I just had a couple questions I was hoping you might be able to answer. If they are elsewhere on the forum already then I apologize.

Would you still recommend Dr. Kramer knowing that he is using exclusively the AMS? I was really hoping to get the Titan after all the positive things I've read. I know Dr. Kramer is a top notch surgeon, I'm not questioning that.... but my main issue and concern is my girth. I was very thin before peyronies hit and now I'm even thinner, like somewhere in the 4inch range. I read that the Titan is the best in terms of adding girth and I need that desperately. And it's more rigid which I also need badly due to the instability of my erection. I also saw several members say the pump is smaller and more rounded on the Titan and that most prefer it over the AMS. I already have large saggy nutsack due to a vericocele so the last thing I want is a larger more unnatural looking/feeling pump. I could care less what my flaccid looks like honestly. I really want to add girth and have a pump that isn't so obvious so that I can have the confident to start having great sex again.

Just wanted to get your thoughts. I know you mentioned you were going to call his office and try to speak to him about this but you were very busy so I was just curious if you were ever able to get in touch with him and get an explanation. Obviously if the choices are stay how I am now or get the AMS i would choose the AMS. I know beggars can't be choosers but I just wanted to voice my hangups and concerns after reading he's only using AMS exclusively. Getting the opinion of men who've had this procedure done already is invaluable. And as much as I'd love to go with Dr. Eid paying out of pocket just isn't an option for me unfortunately. I greatly appreciate any and all feedback, thanks!!
(Formerly ih8peyronies) Condition began at 29, currently 33 y/o. Started overnight, no known cause. Severe hourglassing, dents, painful erections for the entirety. Implant by Dr. Andrew Kramer

Hawk

Most of the things you mention are true but to subtle degrees.  They also need some explanation.

Girth - it is true that the Titan has more potential girth.  It has no mesh sleeve surrounding it to restrict girth expansion.  It is restricted only by how far the tunica naturally expands. That, however, is only a concern with large girth (5 1/4" +).  Any inflatable implant will expand equally up to 5 1/4").  That is more than most of us will ever tap into.

Pump, The Titan pump is a little smaller and a little less irregularly shaped, but it also takes a little more dexterity to learn to operate  Nothing terrible, but it can be a little challenging for some men.  Men who have had both consider the difference to be negligible.  Either pump will be noticeable if firmly touching the scrotum, and neither pump is visually noticeable in the least.

There is no doubt the Titan has more rigidity to straighten curves/bends, especially on a longer penis.  You seem to have no bend, so that is not much of an issue.  I think the BS CX is somewhat comparable to a Titan.  The BS LGX is a little less rigid because it is the one implant that expands and deflates in length,

Dr. Kramer is with a new practice that no doubt dictates some aspects of his practice.  I wish he would say we have chosen to implant Boston Scientific (BS) (formerly AMS).  Instead, reports suggest that he seems to speak out against the Titan with information he used to argue against and which he knows is inaccurate.

I have still not contacted him in a live conversation: too much to do and such limited time.

They each have their weak points, but their longevity and infection rates are the same.  With BS, it is likely a pump or cylinder failure.  With Titan, it is likely a tubing failure.

If you want a 2nd opinion, have a video consultation with Dr.  Eid.  The education is worth the cost, and you will go to all other appointments well informed.


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

pichou

Hey Ih8 peyronies...I had an implant done by Dr.Kramer done in 7/21 and up until the morning of the surgery in the pre op area. I found out I was getting an AMS. I ended up with an AMS CX.
20 years Peyronies Disease, tried VED, pills, Trimix & more
Erectile Dysfunction 15 years.
Hour Glass at base 30 bend left at glans
Penile Implant 7/19/21 Dr. Andrew Kramer
Penoscrotal approach
AMS CX 18cm 2CM RTE

pichou

I apologize about that post. What I meant to say was up until the morning of the surgery I thought I was getting a Titan.
20 years Peyronies Disease, tried VED, pills, Trimix & more
Erectile Dysfunction 15 years.
Hour Glass at base 30 bend left at glans
Penile Implant 7/19/21 Dr. Andrew Kramer
Penoscrotal approach
AMS CX 18cm 2CM RTE

Pfract

Quote from: pichou on November 28, 2021, 05:41:11 PM
I apologize about that post. What I meant to say was up until the morning of the surgery I thought I was getting a Titan.

I am surprised that happened to you? I remember reading about Dr. Kramer and how he was very thorough in his communication with his patients about the device they were going to get. Did he not inform you or something else happened?

rakeshgupta2021

Coloplast is the only FDA approved implant for Peyronies.
If you have Peyronies, the doctor is making a mistake using an unapproved implant when an approved one is available.
60 yrs old, Peyronies since 58
A nickel size internal scar at base of penis causing 40-degree bend
Dr. Karpman - Titan Coloplast 18cm+2cm RTE implant in Oct 25, 2021.

JB999

In my situation (peyronies, excision and grafting with implant) Karpman told me the Titan was the better option as the materials were stronger and longer lasting (me, para-phrasing).

My personal opinion is the Dr is going to recommend whomever company he/she is aligned with, which is most likely only one or the other.  Not saying drs don't implant both, but I would bet most implant the brand they are most closely connected with
59 years old. 
1st pain from Peyronies Nov 2019
Curvature started Jan 2020.  45 degree upward w/ narrowing
10/26/21 Dr. Karpman, excision/grafting surgery - Titan implant

rakeshgupta2021

Not so sure JB. Coloplast claims to be the only fda approved implant in the presence of peyronies.

https://www.coloplastmd.com/diseases/peyronies-disease/
60 yrs old, Peyronies since 58
A nickel size internal scar at base of penis causing 40-degree bend
Dr. Karpman - Titan Coloplast 18cm+2cm RTE implant in Oct 25, 2021.

Hawk

Actually, JB is largely correct.  There are examples of Dr.s switching brands from exclusively one to exclusively the other.

I have never heard the statement about the FDA approving only Coloplast/Titan for Peyronies Disease.  Titan is known to have more axial rigidity thus greater straightening force and especially more than the AMS/BS LGX700.  Because of that, some surgeons use that as their reason for recommending the Titan but I have  NEVER heard advocates for the Titan say it was the only FDA-approved device for Peyronies Disease.  I am also certain Dr. Karpman has implanted men on this forum with Peyronies Disease and used an AMS/BS device. 
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

rakeshgupta2021

Hawk...I posted the link from Coloplast two posts above which makes the claim of being the only FDA approved device. This is fairly recent approval.

In my case, Dr. Karpman said that he used Coloplast instead of LGX because of the FDA approval for Coloplast. He also said LGX would not be rigid enough to maintain a straighter shape, and will bend to the Peyronies forced shape
60 yrs old, Peyronies since 58
A nickel size internal scar at base of penis causing 40-degree bend
Dr. Karpman - Titan Coloplast 18cm+2cm RTE implant in Oct 25, 2021.

Pfract

Quote from: rakeshgupta2021 on November 29, 2021, 11:57:08 PM
Not so sure JB. Coloplast claims to be the only fda approved implant in the presence of peyronies.

https://www.coloplastmd.com/diseases/peyronies-disease/

this was very interesting to read. I had no idea. I also combed through their articles on penile modelling. Thanks for sharing.

pichou

Hi...I do have Peyronies and went to four implanter's before Dr Kramer. All four are highly regarded surgeons in the Boston area. Three where going to use AMX/BS. One was going to use the Titan. He uses Coloplast exclusively.
Dr. Kramer told me the morning of the surgery that he had better outcomes with the AMS.

1. Less infections because of there antibiotic coatings
2. Coloplast has more recalls than AMS.

The only problem I had with that is he should have told me that in my office visit. I told him I wanted a Titan and made my decision to have him do the implant was based on that.

Pichou


20 years Peyronies Disease, tried VED, pills, Trimix & more
Erectile Dysfunction 15 years.
Hour Glass at base 30 bend left at glans
Penile Implant 7/19/21 Dr. Andrew Kramer
Penoscrotal approach
AMS CX 18cm 2CM RTE

rakeshgupta2021

There is always something to worry about -- "2. Coloplast has more recalls than AMS."
60 yrs old, Peyronies since 58
A nickel size internal scar at base of penis causing 40-degree bend
Dr. Karpman - Titan Coloplast 18cm+2cm RTE implant in Oct 25, 2021.

JB999

Definitely a different opinion across the spectrum.  Karpman told me Titan had improved their quality, which was now higher than amx, so Titan would be expected to last longer and have fewer issues
59 years old. 
1st pain from Peyronies Nov 2019
Curvature started Jan 2020.  45 degree upward w/ narrowing
10/26/21 Dr. Karpman, excision/grafting surgery - Titan implant

Hawk

Dr. Kramer had a lengthy video out "Which is better AMS or Coloplast Titan".  Something tells me that video has vanished.  In it, he explains that both have the same failure rate and infection rate.
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

rakeshgupta2021

There is a thread above "Is your doctor impartial". You can see Dr. Karpman, for example, gets good money from Boston Scientific. But, he said he would only go with Coloplast for me because of the FDA approval for Coloplast for Peyronies.
60 yrs old, Peyronies since 58
A nickel size internal scar at base of penis causing 40-degree bend
Dr. Karpman - Titan Coloplast 18cm+2cm RTE implant in Oct 25, 2021.

tshug

Dr Kramer told me the same things he told Pichou before his surgery about the Titan. He also told me that the cylinder folds when deflated would cause issues my artificial sphincter. Dr Eid disagreed with all of Dr Kramer's claims and I'm very happy with the Titan Dr Eid implanted in me.

I understand doctors and hospitals favoring different implants, but you would hope that they wouldn't make false claims about the ones they won't or can't favor. I know I'm partial to Dr Eid, but I will say he never said anything bad about any of the AMS implants. What he did say was that he uses what he feels will give his PATIENT the best results.
71 Yrs old
Radical prostatectomy in 2017.
That surgery left me incontinent
2018  implanted AUS 800 artificial Urinary Sphincter
Erectile Dysfunction & Peyronies
AMS CX Penile Implant Surgery 12/16/2020
Revision- CX replaced with a Titan 20cm + 1 rte 10/26/21 Dr Eid

JB999

My kids hear it from me all the time, "it's always about money"
59 years old. 
1st pain from Peyronies Nov 2019
Curvature started Jan 2020.  45 degree upward w/ narrowing
10/26/21 Dr. Karpman, excision/grafting surgery - Titan implant

LightAtTheEndOfTheTunnel

Pichou,

Thanks so much for the follow up. Based on others previous posts about seeing Dr. Kramer in Cape Cod and the independent research I've done on him I've been debating whether or not to go see him. I made an appointment but canceled. I just rescheduled for a later date. I'm going to try my best to clearly convey my reservations.

1) Pichou.... In your last post you said exactly what I was thinking after I read your initial post in this thread. I really feel for you man. If I was in your situation I would be absolutely furious. I'm not sure if you're dissatisfied with the AMS but just based on principle alone I would be pissed. If Dr. Kramer had promised you the Titan then you should have received a Titan. At the very least he should have told you about his reasoning for wanting to implant the AMS instead of a Titan and let you decide if you wanted to proceed. Since it was the morning of the surgery you were already there I'm assuming you probably felt like it was too late to turn back. Getting an implant is a life-changing decision and not something that can be easily reversed without a second surgery so the fact that he just decided to switch implants at the last second leads me to question his integrity as a doctor.

2)There are also some other concerns that I've come across in regards to Dr. Kramer which have led me to question his integrity. First is him saying to a patient that he doesn't use Titan implants anymore because of their failure rate and possible recalls. I'm paraphrasing from Tshug's recent post about what Dr. Kramer had told him his reasons were for no longer using the Coloplast Titan at his recent visit to his Cape Cod practice. After I did some digging I found posts on Dr. Kramer's twitter from as recent as October 2020 where he describes using a Titan implant on a patient.  On 1/21/20 he even posted a picture on his twitter with employees from Coloplast's marketing department with the caption "Great to meet with some marketing pros from @Coloplast_MD!!!! Cooking up some great ideas! Stay tuned!". So in less than a years times time he went from praising and using the product on a regular basis to saying it was unreliable, faulty and no longer using it. Something just seems very shady about that. As Hawk mentioned.... why not just be honest and say that your practice has an exclusive deal with Boston Scientific?

3)The third thing that has given me reservations is the story behind why Kramer left his practice in Baltimore. He resigned from his position but I'm just going to assume the decision to part ways with his previous practice was mutual or he was forced out due to the testimony he gave in a rape case. I'm not politically correct or easily offended by any means. I  believe strongly in freedom of speech and the idea of cancel culture disgusts me. That being said.... the details of what happen in the case just seem kind of odd to me. I'm paraphrasing again but Dr Kramer essentially testified that in his opinion the guy accused of rape couldn't have raped the girl because he was too fat, out of shape and drunk to achieve an erection. From everything I've read it's extremely rare for a urologist to even testify as an expert in a case like that. If that's his honest opinion that's fine, I have no problem with him giving it but in my personal opinion it just seemed like such an odd stance to take. Definitely seems like there was some sort of hidden agenda there. It was just another instance that kinda raised a red flag for me and led me to question his integrity as a doctor.

I have no agenda or bias either way. When I first found out that Dr. Kramer had started working in MA I was thrilled, his office is only about an hour from where I live. The only way I'll be able to get an implant is through my insurance and it just so happened that Dr. Kramer is in my insurance network so if I went to him the procedure would be fully covered. From everything I've read on here the key to a successful implant is to have it done by an experienced, high volume implant surgeon and from all accounts I've read on here he's one of the best in the world. After researching on other forums and reading implant journals from other patients who have seen him there were several that were not satisfied to say the least. I'm trying my best to be subjective and I understand that even the best doctors in the world have patients who are impossible to please. I'm not trying to bash Dr. Kramer, I'm just simply relaying what I know in hopes that it will help others who are considering an implant with Kramer make an informed decision.


Either way I'm going to keep my appointment for December 12th at the very least to gather some more information and see what Dr. Kramer's pov is. I am only going to get an implant if I can get a Titan so if he says he will only use a BS implant then I am going to look elsewhere. I'll update you all after my visit. Sorry guys I know you addresses some of what I said in here in your last few posts,I wrote this over the course of a few days since it was so lengthy and time consuming so I hadn't seen the last few replies. Thanks a lot tshug and pichou for posting your experiences it's helped me tremendously.
(Formerly ih8peyronies) Condition began at 29, currently 33 y/o. Started overnight, no known cause. Severe hourglassing, dents, painful erections for the entirety. Implant by Dr. Andrew Kramer

tshug

Ih8peyronies, I to was thrilled with to hear that Dr Kramer was practicing in MA now. After my visit with him I was less thrilled. He spoke fast, left the room for a bit to speak to someone else, then came back and seemed like he was in a hurry to move onto his next appointment. My wife and I left there not as impressed with him as we had hoped to be especially hearing what he had to say about the Coloplast.

You mentioned that Dr Kramer is covered under your insurance plan which is great. Have you talked to Dr Eid's office about your insurance? My situation is different where I'm on a Medicare Advantage plan and Dr Eid accepts Medicare. Even though Dr Eid was not an in-network specialist under my plan the majority of the cost was still covered and it did end up costing me about $1000 in co-pays+ two nights hotel. For me that was well worth having Dr Eid implant the Coloplast.

Good luck with your appointment with Dr Kramer. It'll be interesting to hear what he has to say if you insist on a Titan.
71 Yrs old
Radical prostatectomy in 2017.
That surgery left me incontinent
2018  implanted AUS 800 artificial Urinary Sphincter
Erectile Dysfunction & Peyronies
AMS CX Penile Implant Surgery 12/16/2020
Revision- CX replaced with a Titan 20cm + 1 rte 10/26/21 Dr Eid

pichou

Ihe8peyronies, I agree with everything tshug had to say about his visit Dr. Kramer. I felt the same way. Even post op when I brought up a concern about the implant his answer was always short & brief. He would say "that's normal".
You had asked if I was happy with the AMS/CX the answer is yes but again it was not my implant of choice.

Good Luck on the 12th,

Pichou
20 years Peyronies Disease, tried VED, pills, Trimix & more
Erectile Dysfunction 15 years.
Hour Glass at base 30 bend left at glans
Penile Implant 7/19/21 Dr. Andrew Kramer
Penoscrotal approach
AMS CX 18cm 2CM RTE

Pfract

Quote
Pichou,

Thanks so much for the follow up. Based on others previous posts about seeing Dr. Kramer in Cape Cod and the independent research I've done on him I've been debating whether or not to go see him. I made an appointment but canceled. I just rescheduled for a later date. I'm going to try my best to clearly convey my reservations.

1) Pichou.... In your last post you said exactly what I was thinking after I read your initial post in this thread. I really feel for you man. If I was in your situation I would be absolutely furious. I'm not sure if you're dissatisfied with the AMS but just based on principle alone I would be pissed. If Dr. Kramer had promised you the Titan then you should have received a Titan. At the very least he should have told you about his reasoning for wanting to implant the AMS instead of a Titan and let you decide if you wanted to proceed. Since it was the morning of the surgery you were already there I'm assuming you probably felt like it was too late to turn back. Getting an implant is a life-changing decision and not something that can be easily reversed without a second surgery so the fact that he just decided to switch implants at the last second leads me to question his integrity as a doctor.

2)There are also some other concerns that I've come across in regards to Dr. Kramer which have led me to question his integrity. First is him saying to a patient that he doesn't use Titan implants anymore because of their failure rate and possible recalls. I'm paraphrasing from Tshug's recent post about what Dr. Kramer had told him his reasons were for no longer using the Coloplast Titan at his recent visit to his Cape Cod practice. After I did some digging I found posts on Dr. Kramer's twitter from as recent as October 2020 where he describes using a Titan implant on a patient.  On 1/21/20 he even posted a picture on his twitter with employees from Coloplast's marketing department with the caption "Great to meet with some marketing pros from @Coloplast_MD!!!! Cooking up some great ideas! Stay tuned!". So in less than a years times time he went from praising and using the product on a regular basis to saying it was unreliable, faulty and no longer using it. Something just seems very shady about that. As Hawk mentioned.... why not just be honest and say that your practice has an exclusive deal with Boston Scientific?

3)The third thing that has given me reservations is the story behind why Kramer left his practice in Baltimore. He resigned from his position but I'm just going to assume the decision to part ways with his previous practice was mutual or he was forced out due to the testimony he gave in a rape case. I'm not politically correct or easily offended by any means. I  believe strongly in freedom of speech and the idea of cancel culture disgusts me. That being said.... the details of what happen in the case just seem kind of odd to me. I'm paraphrasing again but Dr Kramer essentially testified that in his opinion the guy accused of rape couldn't have raped the girl because he was too fat, out of shape and drunk to achieve an erection. From everything I've read it's extremely rare for a urologist to even testify as an expert in a case like that. If that's his honest opinion that's fine, I have no problem with him giving it but in my personal opinion it just seemed like such an odd stance to take. Definitely seems like there was some sort of hidden agenda there. It was just another instance that kinda raised a red flag for me and led me to question his integrity as a doctor.

I have no agenda or bias either way. When I first found out that Dr. Kramer had started working in MA I was thrilled, his office is only about an hour from where I live. The only way I'll be able to get an implant is through my insurance and it just so happened that Dr. Kramer is in my insurance network so if I went to him the procedure would be fully covered. From everything I've read on here the key to a successful implant is to have it done by an experienced, high volume implant surgeon and from all accounts I've read on here he's one of the best in the world. After researching on other forums and reading implant journals from other patients who have seen him there were several that were not satisfied to say the least. I'm trying my best to be subjective and I understand that even the best doctors in the world have patients who are impossible to please. I'm not trying to bash Dr. Kramer, I'm just simply relaying what I know in hopes that it will help others who are considering an implant with Kramer make an informed decision.


Either way I'm going to keep my appointment for December 12th at the very least to gather some more information and see what Dr. Kramer's pov is. I am only going to get an implant if I can get a Titan so if he says he will only use a BS implant then I am going to look elsewhere. I'll update you all after my visit. Sorry guys I know you addresses some of what I said in here in your last few posts,I wrote this over the course of a few days since it was so lengthy and time consuming so I hadn't seen the last few replies. Thanks a lot tshug and pichou for posting your experiences it's helped me tremendously.

@Ih8peyronies

Thank you for writing such a detailed and lengthy post on the matter. It was very informative and even i had no idea about his latest twists and turns since having switched to Cape Cod. I remember following his videos and patient stories and there seemed to be so many happy folks.... it is just sad...

JustAGuy2020

As far as the Coloplast Titan being the only FDA approved device for Peyronie's, based on my discussions with Dr. Levine prior to surgery, I believe that is true.  I asked whether I would be receiving a Titan or AMS implant, and based on my memory, he said AMS wasn't an option for me.  I had 70 degree curve with hinging and am doing well with my Titan 90 days post-op.  I am almost perfectly straight and no more hinge effect.
55 y/o, Peyronies Disease onset 2018, diag 2/19.
Pentox failed, Ref to U-Michigan, doppler showed 45D right curve and 80D dorsal w hinge effect.
Incision/grafting/plication at U-M 9/20 failed.
Implant / graft repair with Dr Levine (Chicago) 9/21, successful so far

Pfract

JustAGuy2020: I believe you. The titan implant has a substantial amount of rigidity compared to the AMS counterpart and it is best suited for cases like yours and young patients wanting best hardness possible.

Stepone

Is the hinge repair and other procedures for fixing a 70 degree bend the right thing to do treat a patient?
I wonder, because I had these procedures done, which shortened my penis and then when they failed. I got the Titan which restored some of my length and increased my girth.
I think these unreliable repairs only hurt our penises. I had a 90 degree bend, hinge, Erectile Dysfunction issues.
If My urologist had talked about an implant option and the downsides of the other surgeries, I believe it would have prevented my length loss and saved me from the first surgery and the loss of length.

Thoughts?
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Pfract

Your post makes absolute sense Stepone. Unfortunately many doctors fail to inform their patients of that possibility. I wonder if they follow the guidelines or just do it out of their gut feeling.

It is a sentiment shared by many. Hopefully more members with the implant will chime in to share their thoughts on the matter.



JustAGuy2020

My first Dr (in Michigan) did not even mention implant until after the initial incision / grafting surgery failed.  At that point I no longer trusted him and sought out Dr Levine in Chicago, who I now trust completely.  Dr. Levine said he "could" do another incision/grafting but he was not confident it would completely solve my curvature and hinging, and there was a significant risk of worsening Erectile Dysfunction.  He recommended implant and I am glad I followed his advice.
55 y/o, Peyronies Disease onset 2018, diag 2/19.
Pentox failed, Ref to U-Michigan, doppler showed 45D right curve and 80D dorsal w hinge effect.
Incision/grafting/plication at U-M 9/20 failed.
Implant / graft repair with Dr Levine (Chicago) 9/21, successful so far

Stepone

Agreed.
Just as we are seeing advertising on Peyronie's disease and the drug available for help, hopefully we can start seeing information on implants. Instead of bent carrots, maybe they could use under inflated balloons, lol.
My introduction to implants did not come from a urologist, they came from searching through this website and discovering the section on implants.
This site saved my sex life.
StepOne
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

LightAtTheEndOfTheTunnel



JustaGuy2020 I saw your post pop up as I was writing out my next post and the timing couldn't have been better.  Your sentiments about excision and grafting relate perfectly to what I was about to say. I had an appointment scheduled with Dr. Kramer but I had also made an appointment with Dr. Alex Vanni @ Lahey Hospital in Burlington, MA just so I could get a few different opinions. Dr. Vanni is the head of reconstructive urological surgery at Lahey. I saw Dr. Vanni first. I might make a separate post detailing my experience with Dr. Vanni but I'll just summarize here.

He basically told me that since I have hourglassing but no curvature that excision and grafting would be the best option for me. I stated my desire to get an implant and he told me that because of my age he wouldn't recommend an implant. I'll be 34 in August so I totally disagree with his opinion based on everything I've seen and read from men my age or younger with implants as well as world renowned implant surgeons like Dr Eid. I know I'm on the younger side as far as implants go but it's not like I'm 21 and in the early stages of the disease. I'm 5 years in and have exhausted every available option. I have seen a couple guys on here who say excision and grafting has worked for them but I know for sure it's not for me. I've watched the surgery performed....it's extremely complex, the rate of erectile dysfunction is extremely high, the recovery time is extensive and I just don't see how the penis would ever work the same after being patched with a foreign substance. According to Vanni since the scarring is on the sides of my penis the chances of Erectile Dysfunction after excision and grafting are much less than if they were placed elsewhere. I have no idea how that logic makes sense. I know for a fact surgeons have no idea how extensive the scarring is until the penis opened up so if there is scarring in other areas that require a graft that completely defeats any benefit that he claims I would get from the grafts on being placed only on the sides. He said because of how young I am I would need to undergo an implant revision every few years which is frankly just incorrect based on the statistics. He said why not have one surgery that could fix things for good and still be able to get natural erections instead of getting an implant and having to go through multiple surgeries over the course of my life. I can somewhat understand that logic if they had perfected the excision and grafting surgery but it's way too risky.  He told me to take some time to think about it. I asked him if I wanted to go ahead with the implant instead of excision and grafting would they do it. He said that he would want to do the excision and grafting first to see if that worked and if I didn't then do the implant. So basically his opinion was for me to go through a complicated, high risk surgery with a low rate of success, wait months for it to heal, and if that didn't work come in for another surgery. As if I haven't suffered enough and wasted 5 years of my sexual prime why not tack on another year or 2 of pain and uncertainty. It just baffles me that as smart and educated as these urologists are that they are still so clueless when it comes to treating Peyronies disease. This forum has helped me more than almost every urologist I have ever seen. Safe to say I won't be going back to see Dr. Vanni. He specializes in reconstructive surgery so I understand why he would prefer that method of treatment. He also only does a few implants a year anyway so I think even if he said he would do it I would still look elsewhere.

Another less important reason I would never undergo excision and grafting is esthetically the penis just does not look normal after. It looks lumpy, uneven, and you can clearly see and feel where the grafts are. Not to mention the scar around the top of the penis in the area where a circumcision would be done just below the glans. That's something that can take months to heal and will be extremely noticeable especially if you are already circumcised. Of course having a functional penis is by far the most important thing, but speaking from the perspective of single guy the way your penis looks to a girl does matter. If you pull your dick out and all she see's is a mangled, scarred, discolored, deformed penis the chances of her wanting to sleep with you again decrease dramatically.
(Formerly ih8peyronies) Condition began at 29, currently 33 y/o. Started overnight, no known cause. Severe hourglassing, dents, painful erections for the entirety. Implant by Dr. Andrew Kramer

LightAtTheEndOfTheTunnel

I finally had my appointment with Dr. Kramer and a few people have asked me to detail my experience which I planned on doing anyway. First off I want to start by saying Dr. Kramer could not have been a nicer guy. I almost messaged Hawk asking if he could take this topic down because I felt bad for even questioning Dr. Kramer's integrity. I know I didn't state anything about him as fact but was simply questioning things I had heard and read. In hindsight I wish I had just gone to see him first before I made the post and drawn my own conclusions from there. I do respect the opinions of others who have see Dr. Kramer and I am in no way questioning their personal experience I am simply just stating how things went for me. He came off as very genuine, honest, and he listened to what I had to say. He doesn't beat around the bush or talk in code like some doctors like to do. It honestly just felt like a guy talking to another guy. He seemed very understanding of what I was going through and the toll this has taken on my life. I told him about the experience I just had at Lahey with doctor Dr. Vanni and he seemed very surprised. He disagreed strongly with all of Dr. Vanni's opinions on how to treat my case. He doesn't like excision and grafting. To paraphrase he said that the penis relies on blood flow to get hard and grafts don't allow for blood to flow through properly in those areas.... therefore your penis will never fully function the way it was intended to. That is why the rate of Erectile Dysfunction associated with that surgery is so high. He said excision and grafting is somewhat antiquated and once you've done it there is no going back. Yes, you can get an implant if it fails but you are still left with this foreign substance inside your penis. Why bother going through that if you know for sure an implant will fix everything without altering your penises natural state. He admitted he is biased towards implants since he does so many per year but he was completely against the excision and grafting which is a sentiment that is shared by many other respected urologists. He also strongly disagreed that my age should prevent me from being a candidate for an implant. He said he does dozens of implants per year for guys in there early 20's and 30's. He said Vanni's claim that I would need a revision every 3-5 years is ridiculous based on the statistics. I could be wrong about the number of years but I believe Dr. Kramer said that over 90% of implants last at least 10 years with some lasting as long as 15-20 years. Dr. Kramer said if I needed revision after only a few years I would be in the very small minority of implant patients so he did not understand the logic. I felt the exact same way. I understand presenting a patient with all the potential risks but shouldn't statics and success rates also guide the way a doctor views a procedure. Lets say I get the implant and I fall into the majority of men who need a revision after 10 or so years, that means I went from having a painful, scared penis that did not work properly for years to basically overnight having a fully functional penis with excellent rigidity that lasted for a decade. That's an absolute no brainer to me. Another one of Vanni's points was that the risk with each revision increases, but can you even imagine the advancements in technology and surgical techniques 10, 15, 20 years from now? There could be incredible advancements to implants by then so the risk of undergoing one or two revisions in my lifetime is not something I'm concerned with.

Then Dr. Kramer examined me. He said he could see and feel where the hourglassing was in the flaccid state. Before I could even ask he said I was a perfect candidate for a Titan. I was surprised and elated all at the same time. That was the main reason I created this thread in the first place and the biggest question/unknown I had going into this appointment. He said he does about 75% AMS/BS and the rest of the time he uses a Titan. He said I was a perfect candidate for a Titan because of my age and my need for a more rigid, durable penis. He said my length and the fact that I have great stretch and elasticity in my penis is also a major factor for giving me a Titan. He said he uses the
AMS/BS more frequently in older patients and those with below average length. So I can confirm he does not exclusively use AMS/BS or have any bias towards one device or the other. He simply assesses each patient on a case by case basis and puts in whatever implant he feels works best. I am going to double and triple confirm that I am in fact receiving a Titan on the days leading up to the surgery and on the day of prior to the procedure.

So in conclusion I am so happy I went to see Dr. Kramer as the visit really put me at ease and made me feel very comfortable going with him for my implant. He said he could get me in as early as a couple weeks from now which did throw me off a bit because it seems a bit odd that such a high volume surgeon would have such an open schedule, but he is at a new practice in a new state and the office that is somewhat out of the way relative to major cities in the area so I think that has a lot to do with it. I am going to schedule my surgery for February or March so I will keep you guys posted and document everything in a journal. Reading the journals was the turning point for me, I would never considered an implant if it was for the tremendously detailed journals many of you guys posted. For the first time in nearly 5 years I'm am starting to feel like I'm going to be able to put this nightmare behind me.
(Formerly ih8peyronies) Condition began at 29, currently 33 y/o. Started overnight, no known cause. Severe hourglassing, dents, painful erections for the entirety. Implant by Dr. Andrew Kramer

Pfract

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My first Dr (in Michigan) did not even mention implant until after the initial incision / grafting surgery failed.  At that point I no longer trusted him and sought out Dr Levine in Chicago, who I now trust completely.  Dr. Levine said he "could" do another incision/grafting but he was not confident it would completely solve my curvature and hinging, and there was a significant risk of worsening Erectile Dysfunction.  He recommended implant and I am glad I followed his advice.

@JustAGuy2020 that was very nice to read and i hope that it continues to work perfectly for years to come. You deserve it!

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Agreed.
Just as we are seeing advertising on Peyronie's disease and the drug available for help, hopefully we can start seeing information on implants. Instead of bent carrots, maybe they could use under inflated balloons, lol.
My introduction to implants did not come from a urologist, they came from searching through this website and discovering the section on implants.
This site saved my sex life.
StepOne

@stepone I think that we as forum members and you guys as implantees have to share the word on the matter any chance that you have. Implants to treat peyronies are an extremely viable option (they are also part of the guidelines on treating peyronies) but not every patient will want to go down that route. Even with the right counselling a lot of patients simply refuse it or want to try other treatments first no matter the cost. We have many examples of that here in the board.  Hopefully they will stumble across your diary and others to see what success at beating this disease looks like! :)

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He basically told me that since I have hourglassing but no curvature that excision and grafting would be the best option for me. I stated my desire to get an implant and he told me that because of my age he wouldn't recommend an implant. I'll be 34 in August so I totally disagree with his opinion based on everything I've seen and read from men my age or younger with implants as well as world renowned implant surgeons like Dr Eid. I know I'm on the younger side as far as implants go but it's not like I'm 21 and in the early stages of the disease. I'm 5 years in and have exhausted every available option. I have seen a couple guys on here who say excision and grafting has worked for them but I know for sure it's not for me.

I agree with you but i have to mention that there is definitely an increase in risk of infection as the number of implants/revisions goes up with age and patients need to know that. I don't know if it is because of the area being open so many times or it is the device itself causing that risk but there are a couple of papers on this: https://pubmed.ncbi.nlm.nih.gov/29795529/


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I've watched the surgery performed....it's extremely complex, the rate of erectile dysfunction is extremely high, the recovery time is extensive and I just don't see how the penis would ever work the same after being patched with a foreign substance. According to Vanni since the scarring is on the sides of my penis the chances of Erectile Dysfunction after excision and grafting are much less than if they were placed elsewhere. I have no idea how that logic makes sense. I know for a fact surgeons have no idea how extensive the scarring is until the penis opened up so if there is scarring in other areas that require a graft that completely defeats any benefit that he claims I would get from the grafts on being placed only on the sides. He said because of how young I am I would need to undergo an implant revision every few years which is frankly just incorrect based on the statistics. He said why not have one surgery that could fix things for good and still be able to get natural erections instead of getting an implant and having to go through multiple surgeries over the course of my life. I can somewhat understand that logic if they had perfected the excision and grafting surgery but it's way too risky.  He told me to take some time to think about it. I asked him if I wanted to go ahead with the implant instead of excision and grafting would they do it. He said that he would want to do the excision and grafting first to see if that worked and if I didn't then do the implant. So basically his opinion was for me to go through a complicated, high risk surgery with a low rate of success, wait months for it to heal, and if that didn't work come in for another surgery. As if I haven't suffered enough and wasted 5 years of my sexual prime why not tack on another year or 2 of pain and uncertainty. It just baffles me that as smart and educated as these urologists are that they are still so clueless when it comes to treating Peyronies disease. This forum has helped me more than almost every urologist I have ever seen. Safe to say I won't be going back to see Dr. Vanni. He specializes in reconstructive surgery so I understand why he would prefer that method of treatment. He also only does a few implants a year anyway so I think even if he said he would do it I would still look elsewhere.

I went through many emotions reading your post. From slight anger at why your Dr would recommend that treatment path, to contemplating the similar cases to yours there were on the board, and happiness about your decision process. You put things in a very rational manner and that is part of the battle in beating this. Thank you for posting this.

Hawk

Ih8Peyronies,

Your posts are fantastic for detail and clarity.  Thank you.  They do a service for the forum and other members.

I am glad you were happy with your visit with Dr. Kramer, and it did resolve some questions. However, it leaves me puzzled with the other report (I think from Pichou) who said Dr. Kramer told him Titan or Coloplast had too many recalls.  I would have had to ask him if he ever said or suggested that just to hear the response.  I would also press him on a patient going into the O.R. expecting a Titan and coming out with a BS.

I also note that Dr. Eid claims his infection rate does not go up with revisions.  I question the complete accuracy of that statement, but that is his claim.
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

tshug

Hawk, it was at my meeting with Dr Kramer that he mentioned the Titan recalls and the infection rate being lower with AMS products. When I asked Dr Eid about this he said he had never heard of any recalls and that the infection rates using either product is very low.

Ih8Peyronies, I'm happy to hear your meeting with Dr Kramer went well. Keep pushing the Titan if that's what you want. Verify and verify again before going into surgery that the Titan that will be implanted. You don't want to be surprised like Pichou was after his implant surgery.

I disagree with Dr Kramer about his feeling that the AMS is better for older men with below average length. At 70 I fall into the older men category and though I've lost some size due to my previous surgeries Dr Eid was able to implant a 20cm +1rte Titan during my revision surgery replacing my previous 15cm + 1rte AMS CX implant. Dr Eid felt that the Titan was the best implant for me and I'm very happy with it.

Ih8Peyronies, I think you'll be in good hands with Dr Kramer given all the implant surgeries he's done. Please keep all of us informed as you continue on.

71 Yrs old
Radical prostatectomy in 2017.
That surgery left me incontinent
2018  implanted AUS 800 artificial Urinary Sphincter
Erectile Dysfunction & Peyronies
AMS CX Penile Implant Surgery 12/16/2020
Revision- CX replaced with a Titan 20cm + 1 rte 10/26/21 Dr Eid

Stepone

Ih8peyronies,
Congratulations on finding A solution to your issue. Sometimes we are so interested in the mechanics and accuracy of these issues, we forget about the huge stress and anxiety that our members are going through.
I think I would have cried if I finally got a validation there is a "cure" for my penis issue.
I truly hope this works out for you.
Now be sure to do all your due diligence to ensure a successful surgery.
StepOne
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

JustAGuy2020

ih8peyronies - So glad to hear you found a Dr you can trust that is putting you on the path that you already know is right.  Your comments of Dr. Kramer remind me a lot of my initial meeting with Dr Levine - Levine went through everything in detail with me, reinforced the treatment course that I had already determined was the right one (implant) and was willing to stay as long as I wanted to answer questions, etc.  Very down to earth and non-doctor-like with his communication skills.  I only regret not finding him first rather than agreeing to surgery with the doctor in my home state.  At that time, I figured that any doctor who described him or herself as a Peyronie's expert was equally qualified to every other.  I was of course very wrong about that but am happy with where I am now.
55 y/o, Peyronies Disease onset 2018, diag 2/19.
Pentox failed, Ref to U-Michigan, doppler showed 45D right curve and 80D dorsal w hinge effect.
Incision/grafting/plication at U-M 9/20 failed.
Implant / graft repair with Dr Levine (Chicago) 9/21, successful so far

Hawk

Quote from: Stepone on December 20, 2021, 06:31:26 PM
If My urologist had talked about an implant option and the downsides of the other surgeries, I believe it would have prevented my length loss and saved me from the first surgery and the loss of length.

Thoughts?

I think you are absolutely correct.  This says it all. LINK --> https://www.youtube.com/watch?v=WqVPF0Ja8PY

https://photos.google.com/share/AF1QipPCiwuLEx05gi7oN8A3veJ-TY06NRfzhBshJXLRZMVDUDH7-T4vEl6iD-ohHEufXw?key=cWJ5RDhvYTY4NnRKQ1JTeTNhT0xTWnhIWWN2NWV3
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