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Author Topic: Fresh out of excision/grafting surgery  (Read 2541 times)

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2Oldfords

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Re: Fresh out of excision/grafting surgery
« Reply #50 on: June 07, 2019, 04:48:42 PM »

    Thanks again for the additional info. Can't be too well informed.

I'm in no hurry to get an implant but maybe I shouldn't dally around either. I'm a little afraid the newly activated peyronies will cost me more length than I have lost up to now if I wait too long. I do use VED daily or close hopefully that will help with loss.
    I have been researching this subject all day and I'm over it for now. Thanks again to all who have contributed. In particular Alibabba's writing should be itched in stone. Thanks for turning me on to what wisdom he shares.
    Later
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Age - 63
Peyronies of unknown length of time
70 Deg curve 10-11 o'clock
first 2 uro's offer for xiaflex and referral
incision/grafting 12/18/18

pfract

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Re: Fresh out of excision/grafting surgery
« Reply #51 on: June 08, 2019, 08:35:08 AM »

Quote
would not go within a mile of Perito either. Talk about buyer beware. He seems to be in it strictly for the money. Patient welfare be damned.
@frank55: not only he has several malpractice lawsuits, he is clearly solely focused on the business perspective of this procedure, traveling around the world teaching others (20$  on how it's for the money involved?) and bragging about installing implants under 15min. On top of this he only does infrapubic approach. An approach that while we know has it's case use, it is easier and less time consuming for the doctor, yet worse for the patient in many cases leaving the person with a less desireable outcome. Not to mention the risk of less sensivity, due to the way the implant is inserted above the penis. He also operated on a patient on ended up losing his penis, because he did not due the proper follow up and it got infected and subsequentely gangrenated requiring amputation.

https://www.huffpost.com/entry/man-sues-over-penis-amput_n_1183437

https://www.miaminewtimes.com/news/dude-wheres-my-penis-miami-man-loses-his-manhood-and-fights-back-in-court-6553394

https://www.dailymail.co.uk/news/article-2083173/Dr-Paul-Perito-blamed-amputation-patients-penises-botched-operations.html

Quote
Frank55, Thanks for the input. I have been to Dr. Kramer and Eid websites the big difference I see at this time is it looks like they prefer coloplast Titan IPP over AMS 700 LGX which is what Dr. Knoll seems to use. I have tried to contact his care team person and see if he will use a coloplast Titan as it seems by the literature it is better for one that has Peyronies not just Erectile Dysfunction.
    I think I have read everything on this forum about implants but I will continue to see if I can glean some more info.
   I will continue to post my experience bad or good if that is ok. Men who come to this site like me are looking for info. Like me I hope what they read is honest and unbiased and I try to do the same.
    My big question now is if peyronies makes you have the hourglass that constricts blood flow what needs to happen in surgery to overcome this? One Dr. not well liked on this forum says a scratch procedure? What happens if peyronies is activated by the implant surgery like it was for me with the grafting? Is the implant not affected

@20ldfords:

I am glad you mention that part in particular. Implant selection is of great importance for patients with severe peyronies disease. As you can see in curved's case, Dr. Eid implanted a titan and the result was dramatic. Curved’s Impant Journal - Peyronies Society Forums [Page 2]

He details in his diary how his dr was able to insert the rods even though the penis was filled with fibrotic tissue and several very hard plques. Both of the doctors you mentioned implant the device that better fits the patient. But as one can see on that post pertaining the bias of doctors, Dr. Kramer clearly has a preference for AMS and Dr. Eid for Coloplast. I presume that those brands are there go to choice, unless the patient demonstrates a prefrence or the situation requires a particular model/device. (These are my thoughts on the matter; )

My advice to you is to let things cool down, and do your best to stay informed and make a choice that you are truly confortable with. Here are some suggestions, for steps that you can take that cost nothing, and will empower you greatly:

-read all the implant diaries on this very board. Many members where kind to share pictures which helps a lot.
-see dr. kramer/eid website extensively and make sure you clear all your doubts and fears
-create a diary. It helps to stay focused and get that extra bit of support and sometimes guidance.
-If you have your mind set on am implant for good, then follow a daily regimen of traction and VED. At the very least the VED. There are medical papers, that i think were shared here, on the importance of VED pre op.
-Take measurements. From now on. It will give you an idea of how the condition is progressing and if you should give that extra push for the implant or keep searching for information in a more relaxed manner.

Something i have to say as well, is that after 4.5 years of following this board and FT on diaries on penile implants, both Dr. Kramer and Dr. Eid have been extremely consistent on their bedside manner, patient care and above all else penile size preservation and erection quality. And don't take my word for it. Ask the members here that went to these doctors.

Keep us posted and stay strong!

2Oldfords

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Re: Fresh out of excision/grafting surgery
« Reply #52 on: June 08, 2019, 10:00:03 AM »

   Pfract, The response by the members of this board has been tremendous. I value each and everyone for the support and understanding that has been given me. The advice given is priceless.

   I'm going to take your advice to cool it, calm down and think.... I am committed to continue VED use until a plan is put together and followed through. I wish I had paid more attention to the measurement side of this as of right now I don't even know what I am size wise. That is going to change.

    Thanks again

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Age - 63
Peyronies of unknown length of time
70 Deg curve 10-11 o'clock
first 2 uro's offer for xiaflex and referral
incision/grafting 12/18/18

Frank55

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Re: Fresh out of excision/grafting surgery
« Reply #53 on: June 24, 2019, 08:32:00 AM »

2OldFords - One other question. When you were in your pre-surgery discussions with Dr. Knoll, did he clearly describe the risks associated with grafting surgery (including the possible return of curvature and additional scar tissue?)

Franklin Kuehhas did not do that prior to my procedure, with which I have a problem. Admittedly, I should have done more homework on my own but I still think it is the surgeon's responsibility to detail both the positive and negative of what might happen.
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Single and 57 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

MarkDS

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Re: Fresh out of excision/grafting surgery
« Reply #54 on: June 24, 2019, 11:42:45 AM »

My surgeon did quickly run through the risks of surgery, and the fact there might be some loss of feeling, residual curve, and some loss of length from pre disease. 

However, the loss of length from pre op, and extent of residual curve was not expected
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2Oldfords

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Re: Fresh out of excision/grafting surgery
« Reply #55 on: June 24, 2019, 07:11:31 PM »

    I had already read everything I could get my hands on this procedure/outcomes/chances of each.
I knew the risks as far as numbness, loss of length, infection, recurrence long term. I expressed to Dr. Knoll I had researched this subject as much as I could and had what I would call a fair knowledge of what should happen in a normal outcome. I didn't anticipate that peyronies would flare up again and I would not even have time to have a normal recovery. That was probably why I was so devastated when I was told that all my issues I thought was grafting related was indeed new peyronies. Mind you I did not have a return of curvature but new hour-glassing distal from the grafts.
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Age - 63
Peyronies of unknown length of time
70 Deg curve 10-11 o'clock
first 2 uro's offer for xiaflex and referral
incision/grafting 12/18/18

Frank55

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Re: Fresh out of excision/grafting surgery
« Reply #56 on: June 25, 2019, 07:11:05 AM »

Understood 2OldFords. However, I don't think your statement to him of your pre-study of potential outcomes relieves the Doctor of clearly explaining what might happen (positive and negative.) In my opinion, it is still part of the Doctor's responsibility to tell you the risks in advance - including another potential flare-up of peyronies.

That same thing happened to me. Any candidate for grafting surgery should be made aware by the physician that outcome is possible. And I've read about too many examples of it (return of peyronies after grafting) to believe it is a rare surgical result.

The Doctor could have said "I understand you've studied this on your own, but I still need to be certain you understand all of the potential consequences here. So let me list these out. That way I'll be completely comfortable that you are fully aware of the potential effects of the surgical procedure we are discussing. Then you can make an informed decision about whether you'd like to move forward."

The same conclusion comes to mind again and again. Doctors are quite eager to perform surgery. And I think some are willing to "push the envelope" of what the patient is told in order to move the surgical procedure forward, given that their performance appraisal and income are partially based on consistent surgical volume. Sorry if that sounds cynical but I think it is true.
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Single and 57 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

2Oldfords

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Re: Fresh out of excision/grafting surgery
« Reply #57 on: June 25, 2019, 06:36:35 PM »

   Frank55, I agree. I have had plenty of outpatient surgery. All the procedures to date went just like they were advertised. All had complications that could happen but didn't. I had a rough time coming out of the last abdominal surgery, I had to go to the ER that evening and get catheter and IV fluids. I eventually become black and blue around my entire gut from one side to the other side. When I showed the surgeon my belly a week later he said "wow". Point is he did what I wanted done.
   That's the thing about a surgeon they want to do surgery. Yes they make money doing it. Yes they probably have other incentive's and yes he could have told me about the chance peyronie's could return. I knew that it could as there is a percentage that comes back after a certain amount of time, and that percentage goes up with time. You are correct in that he could have said I know you think you know but let me tell you anyway.
    Right now I just wish I'd have known my insurance would deny an implant for me if reconstructive surgery failed to correct the problem. If this was a knee or hip replacement etc it would not be a problem.  I'm just hoping the appeal works. I don't want to wait a year or more to have this corrected.
    I'm sorry I have rambled on, in a way I'm just venting a little. You know as you have been thru it too.

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Age - 63
Peyronies of unknown length of time
70 Deg curve 10-11 o'clock
first 2 uro's offer for xiaflex and referral
incision/grafting 12/18/18

Frank55

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Re: Fresh out of excision/grafting surgery
« Reply #58 on: June 26, 2019, 06:34:50 AM »

Sounds like a frustrating situation with the insurance 2OldFords and I don't blame you for venting.

Health insurance companies are ridiculous to deal with. Hope it gets worked out.
Logged
Single and 57 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
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