Help with questions for surgeon

[MarkDS]

Hi everyone.

For those that don't know my story, 2 1/2 years ago I had an incision and grafting surgery to try and correct an upward curve of nearly 100 degrees.

After the surgery is quickly became apparent that the surgery had failed, leaving a residual curve of around 45 degrees, and loss of length of around 1.5 inches in both erect and flaccid length.  I am left with daily discomfort and struggle to have intercourse due poor erections, which is not improved with tablets.  I have tried injections but the pain on erection was unbearable, so reluctant to try again.

My surgeon said there was nothing further that could be done.  On seeing a further specialist I was told that the surgery had likely to had failed as the graft has contracted because the dressing had fallen off within a couple hours of the operation.  

I have a Teams call with my surgeon and the hospital on Thursday, following a complaint I raised over 2 years ago.  The hospital originally sent me for an independent review, but the urologist never produced the report and they could not find another specialist to help.

What do I ask the surgeon, as this will probably be my final contact.

I want to know why he didn't explain that the surgery could result in such a residual curve, why he didn't warn me of the extent of the loss of length, whether he thinks the operation would have been a success if the graft hadn't contracted and why he thought it did contract....but what else can I ask before I close the book on this chapter of my life, and accept that my sex life is all but over at the age of 49.

[Bud luck]

You have to try to sue this "doctor", for malpractice, at least try to sue him. I've try to sue the "doctor" who caused me my Peroynes disease but nobody took my case, at least I try.  

[MarkDS]

I have tried to get legal advice, but nobody is willing to take the case as there isn't any precedent for cases of peyronie's.  It also seems impossible to find a lawyer who doesn't work on a "no win no fee" basis.

[Lostandsad]

It sucks that you're going through this. But I don't believe your sex life is over. Is an implant out of the question for you?

[MarkDS]

An implant is a possibility, but it sounds as though it would not undo the damage from the surgery.  They are unlikely to remove the graft and therefore not restore any length, which is one of the issues when trying to penetrate.  I would also be concerned about painful erections, and further damage done.

[Mikel7]

I am sorry for your situation and hope things will improve for.  I will tell you of the experience my wife and I had in trying to sue a Dr.  It was nearly impossible.. The Dr was clearly in the wrong and he knew it but the hospital covered for the whole mess he made.  We had to go before a "review" board and have them examine the evidence and decide if a case was merited.  We talked with a lawyer and virtually no one would take our case or want to go up against a hospital backing the Dr and the review board. We ultimately lost around 30,000 $$.  Dr's  cover their asses pretty good.  You can try just make sure you have the evidence to back up your case and a witness on your behalf.

[JustAGuy2020]

MarkDS - your case and mine sound a lot alike.  I had incision and grafting initially, and likewise mine failed.  I started with about 45 degree bend to the right and after the surgery ended up worse.  My dressing fell off early too and the Dr said "no big deal" about that but once I had fully healed he just said "looks like you healed badly".  I got a second opinion from Dr. Levine in Chicago who felt strongly the surgery was performed incorrectly.  I don't know all the medical details other than he mentioned that they did not divide the plaque at the septum which allowed it to reattach and the curvature to return.  I ended up very recently having implant surgery with Dr Levine and he also repaired and re-grafted the previous area.  I have defintely lost some length which probably won't be fully restored but I feel like I am going to be (close to) straight and be able to have a fairly normal life going forward.  Like you and others, I am trying to pursue legal action on the first Dr and have tried 2 law firms with no takers.  

My advice would be to get a consultation with one of the best possible specialists you can find (Dr. Eid / NYC, Dr. Kramer / Mass., Dr. Levine / Chicago, etc) and see what your options are.  I see Dr. Levine due to the mostly positive reviews here, he accepts my insurance, and he is reasonably close (3 hr drive).  I also felt he was very thorough and thoughtful in my initial consultation.

[MarkDS]

So I had my meeting today.  The hospital director was there as an independent, and the surgeon.

The surgeon is adamant that he followed the guidelines for the procedure and there is possibly only one or two other surgeons in the Uk that has performed the procedure more.  He is just about to publish a paper on the procedure.

The things I am still not happy with are:

1. He still claims that the in his opinion the fact that the dressing had fallen off within a couple of hours is fairly normal, and he would recomend it be removed after 24 hours in any case, as it is likely to get wet through urine which would increase risk of infection.

2. He acknowledges that nerve endings would have been lost through circumcision, but would always recommend circumcision to aid healing.

He does think that an implant might help, but I am so scared of any further surgery.

I will ask for a copy of the notes from the meeting, and look into any Uk guidelines regarding dressing, but I expect there is no evidence to suggest he has done anything wrong, albeit some andrologist, especially in other countries such as the US may have different opinions

 

[Mikel7]

I would say at this point in time you should let things heal and dismiss the idea of another surgery now. If I were in your shoes I would start reading and studying the implant section of the forum.  Go into detail with as many journals as you can.  I would not go with this surgeon ever again.  If you could have a meeting with Dr Eid in NY about discussing an implant that is what I would do.  You have reached a point where you don't want any more grafting etc....  Having an implant done by a high volume Dr such as Dr Eid would be where I would begin.  It would also depend on your insurance, finances etc...  Don't despair - things will get better you just are now being pointed down another road.

[mst]

For re-do cases Dr Joel Gelman is the best (read about his mentors: Dr Gerald Jordan and Dr Devine). Maybe he can fix you.

Write him:
https://www.centerforreconstructiveurology.org/ask-dr-gelman/

Forget about your british surgeons. Maybe Professor Tony Mundy from London is your option?
https://www.uclh.nhs.uk/our-services/find-consultant/professor-anthony-mundy
https://www.topdoctors.co.uk/doctor/anthony-mundy#

[MarkDS]

I'm now stuck with relying on the NHS in England.  Maybe I'll investigate going overseas in 10 years when I look to take my pension, and have a little cash saved.