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Author Topic: Incision and grafting. Anybody recently had surgery I can compare notes?  (Read 918 times)

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MarkDS

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Hi all.  As I’ve already posted, I’ve recently had incision and grafting surgery to correct a bend of more than 90 degrees up and 30 degrees to the left.

It’s been a week and recovery is slow, but steady.

However I have some concerns, particularly with length (don’t we all).

I see lots on here where post surgery using the excision method, length is pretty much restored.  With the Nesbit procedure length is accepted to reduce.  However I was hoping with the incision and grafting length would recover to some extent.  Although I appear lucky that I can get erections post surgery, it seems to get hard (and understandably quite painful at the moment), but does not grow in length very much.

Slightly worried as erect length is only around 4.5 to 5 inches!

Will things gradually relax and become more stretchy as things heal?

Please be gentle with your replies 😊
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Peyronie’s started 3 years ago, resulting in upward curve of around 100 degrees.  Tried VED before opting for incision and grafting surgery in June 2019.  Resulted in loss of length of over 1 inch, and residual curve of over 40 degrees.

MarkDS

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Follow up appointment confirmed for 17th June.  Hopefully things will have improved by then.
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Peyronie’s started 3 years ago, resulting in upward curve of around 100 degrees.  Tried VED before opting for incision and grafting surgery in June 2019.  Resulted in loss of length of over 1 inch, and residual curve of over 40 degrees.

TDix

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Yes as you heal you will get length back.  It will take awhile, probably 6 weeks or more
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46 yrs old, 3 yrs diagnosed, 3 shots of Xiaflex resulting in hematomas/burst dorsal vein or fracture at tip, excision/grafting surgery March 26th successfully performed by Dr Faysal Yafi, pelvic floor therapy with Laureen McVickers

MarkDS

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Thanks for the words of encouragement.  Stressful times.

Did half day at work today.  Only office based, but just walking around and standing is make me pay this evening 🥺
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Peyronie’s started 3 years ago, resulting in upward curve of around 100 degrees.  Tried VED before opting for incision and grafting surgery in June 2019.  Resulted in loss of length of over 1 inch, and residual curve of over 40 degrees.

MarkDS

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OMG...the pain as.soon as I stand is incredible.

Damn you gravity! 😫
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Peyronie’s started 3 years ago, resulting in upward curve of around 100 degrees.  Tried VED before opting for incision and grafting surgery in June 2019.  Resulted in loss of length of over 1 inch, and residual curve of over 40 degrees.

Juice

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Well fellas, it’s officially one week post op. Everything seems to be healing accordingly. Couple of notes I’d like to share. After surgery honestly you feel nothing, however, when it comes time to leave they want a sample of pee, this unfortunately (and for the next several days) will be the biggest obstacle! When I say you pee like an old time sprinkler and the pain that accompanied this is like something that’s almost indescribable! When they tell you you’ll feel a little burning sensation, what they neglect to say it a burning feeling from a blow torch!  Good news after the third day it’s almost all gone. The best description of what you will look like is the way I read in a post on this site, “your dick will look like it’s been run over by a truck”. It’s true!  Now I don’t want to scare anybody, instead just the opposite, if you were anything like me, this curse has simply destroyed you as a man both mentally and physically. And no matter what I can go through to fix it well “F it” .  So desperate to be me again!  Anyway, sorry I digress, here it is one week  and one day later, the last three days I’ve been woken up at least three times each night with nocturnal erections. And even though they were insanely painful it was a beautiful welcome home nonetheless!  Now yes they aren’t as hard as I would like however I am positive just like any surgery on any muscle rehab will be needed so painful but “F yeah” encouraging!  I am so excited to start being me again!  And if the Dr was telling the truth because of the graphing I will be an full inch longer!  Now I was perfectly happy where I was (always the proudest part of me) but I won’t look a gift horse-well you know what I mean.. I am very encouraged about the future. I have read that some surgeries fail after the first few months but I did find one story that was a beautiful and encouraging story calling himself Peyronies Free!  I will deal with anything that is ahead of me and will do it with a smile because I now know I’ve done everything that is available to fight this horrible affliction!  I want to keep lines open with everyone and anyone that has gone or is going through this, This disease must have more attention to it, I believe it is much bigger than they say simply because of how I kept it to myself because of what it does to your mind. I actually woke up everyday wishing I had cancer instead (I know,but before you judge) I figured that if I had cancer or some other dreadful disease I could wrap my head around it more easily, I could rationalize it with some type of logic, I smoked, I was unhealthy, I did this or that and that’s why this happened but to simply wake up one day and be ashamed, embarrassed of the way you look as a man for no reason (that you can remember)  or that you start to hate the way you lived your life because of the time you wasted not banging everything in sight. To stay up night after night thinking you’ll never get a chance to again.  Now I know how selfish and somewhat stupid this may sound but if you are reading this post and you’re on this page you most likely will understand. I am by in no means comparing the other dreadful things that can happen but to be perfectly healthy and lose the ability to be a man (sexually) is the most painful nightmare come true for me.  I can’t explain the amount of fantasies I have had during my manhood and like the lottery it was just that fantasies. But the lottery fantasies you’ll always have because you can always play.  I’m not saying that I could’ve or would’ve acted on those fantasies but to take that away from a healthy young man.   Anyway again sorry, I digress once again.    I will keep you posted as to the progression of this recovery.
Thanks for listening
Juice
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55 yrs old. Diagnosed Peyronies Disease Dec 2017 battling with it a bit longer.  Failed xiaflex, Gainswave, PRP..   underwent Excision and grafting May 10th 2019 with Dr David Peters. StonyBrook NY..

MarkDS

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Well, I’m 9 days post op.  The soft tissue swelling has reduced a lot.  Now I can feel all the lumps, bumps and stitches, but still some really painful areas, particularly around the base of the penis where there seems to be a circle of swelling.

The pain is minimal when lounging on the sofa, but on standing the pain builds, presumable as swelling increases due to gravity.  This doesn’t seems to be getting any better.

But, omg the pain is insane during the night when I get nocturnal erections.  It’s also concerning that during erections the penis becomes rigid, but the length does not increase a great deal.  I’m hoping that this will improve as things begin to heal further.

I have a follow up with the surgeon in 4 weeks, but I have also asked for a call on Monday to discuss any concerns I have.

Is it ok to get erections, or should the be suppressed?  will things become more stretchy as swelling reduces further?  Currently, with the loss of length I feel as though I may as well have gone for the Nesbit procedure, rather than the incision and grafting.

We’ll see...
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Peyronie’s started 3 years ago, resulting in upward curve of around 100 degrees.  Tried VED before opting for incision and grafting surgery in June 2019.  Resulted in loss of length of over 1 inch, and residual curve of over 40 degrees.

Juice

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The swelling is about 70% gone except where The circumcision line is, looks like he’s wearing a turtleneck!  Which I pray goes away. The nocturnal erections are ridiculous, I agree!!  I was told by my Dr the shortening is only at its worst in this stage. Once  I can start the stretching I hope to regain some length back.  (I better!)
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55 yrs old. Diagnosed Peyronies Disease Dec 2017 battling with it a bit longer.  Failed xiaflex, Gainswave, PRP..   underwent Excision and grafting May 10th 2019 with Dr David Peters. StonyBrook NY..

MarkDS

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Juice: what length are you post op?  I’ve gone from a pre disease 6 1/2 to 7 inch down to a 4 1/2 inch at the moment.   Really hoping this improves during the healing process.

The good need is that my erections are strong, although I do seem to have a residual curve to the left.  However the over 90 degree upwards has mostly gone.

So, so far, some good, some not so good
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Peyronie’s started 3 years ago, resulting in upward curve of around 100 degrees.  Tried VED before opting for incision and grafting surgery in June 2019.  Resulted in loss of length of over 1 inch, and residual curve of over 40 degrees.

TDix

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You will get your length back.  I was 6.5 inch pre-peyronie’s, and then 6 inch a year in.  After surgery I was at best 5 inches for a good 5 weeks, but am back to 6 now.  Should improve more as I heal
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46 yrs old, 3 yrs diagnosed, 3 shots of Xiaflex resulting in hematomas/burst dorsal vein or fracture at tip, excision/grafting surgery March 26th successfully performed by Dr Faysal Yafi, pelvic floor therapy with Laureen McVickers

MarkDS

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Thanks; very encouraging.

Are you using any vacuum device?
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Peyronie’s started 3 years ago, resulting in upward curve of around 100 degrees.  Tried VED before opting for incision and grafting surgery in June 2019.  Resulted in loss of length of over 1 inch, and residual curve of over 40 degrees.

TDix

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No just manual stretching
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46 yrs old, 3 yrs diagnosed, 3 shots of Xiaflex resulting in hematomas/burst dorsal vein or fracture at tip, excision/grafting surgery March 26th successfully performed by Dr Faysal Yafi, pelvic floor therapy with Laureen McVickers

Stepone

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I am beginning to wonder about some of the surgeries for Peyronies Disease.
So pre 2014, I had a penis that was a solid 7.5 inches long and an even 5.5 inch girth.
I always had a slight curve to the left.
But one evening, i broke my penis while having sex.
It like snapped, then as time passed, a hinge developed on the left side and it eventually developed a bend of nearly 90 degrees, making sex almost imposible.
After almost a year of trying to find a doctor to fix the problem, I eventually found a surgeon and I had a modified Nesbit surgery to fix it.   About the same time, my testosterone levels tanked where thoughts of sex diminished to nearly 0.
No morning wood.
I mentioned it my urologist and he put me on testosterone replacement therapy, but in the meantime my penis had shrunk bigtime.
Well after 3 months of no erections and a surgery my penis had shrunk to 6.5 inches and 4.5 inches in girth and two indentations on the side of my penis.
Fast forward 4 years.
Just 3.5 weeks ago, I had a Titan Implant surgery, now my penis is just about 6" long, but a good 5" to 5.5 inch girth. My surgeon said over time, I should get back to my 6.5 length and definitely my girth as long as I am patient.
Well here is my thought, I can't change the past, but what I am thinking is perhaps new guys with Peyonies Disease should check their testosterone levels and also consider the implant? I am wondering if going right to the implant would lessen the degree of decreasing penis length over time.
Low testosterone levels have a way of sneaking up on us. Be sure to have your free testosterone checked too. as there is a big difference. One more thing, don't accept your doctor saying the tests were normal. Ask to see them. My primary physician did my first testosterone tests and said they were normal. When in actuality, they were at the bottom of normal and when my urologist did the free testosterone test, that was below normal, way below normal.
I think we need to all question our doctors more, including me.
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Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

pfract

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Stepone: you got many things right on your post. There's in fact a Recommendation from the urology guidelines, given severe peyronies and the risk of Erectile Dysfunction along with other factors, the treatment of choice being the implant. It does have risks and some downsides of its own too. It's also a huge and non reversible step. And I say this while saving money for one myself.

As for questioning the doctors more? Absolutely. Double check, ask for second opinions if need be and try to stay informed as best as you can. Makes a big difference.

curved

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Stepone-  For whatever it is worth I agree with your perspective.  I am 7 weeks post implant and thus far happy with the results.  Got Peyronies Disease 4.5 years ago and tried everything (Xiaflex, traction, all supps, etc.) and finally went with the implant in March.  I did not have Erectile Dysfunction but the distal narrowing and curvature was so bad I had lost well over an inch in length and over an inch in girth and I was average in both to begin with. Back to 13.5 cm length and curvature down to 20 degrees from 90. I also have been taking TRT for several years.  I have chosen the pellets vs injections or creams. I highly recommend it for anyone looking to increase erection quality as well as stay in shape (lose weight, gain muscle, etc.).  And don't let your general practitioner say you are fine when you are at the low end of normal 250-300.  You really want to be at the high end of the range.  I typically stay between 750 - 1100.
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51 yrs old; diagnosed 3.5 yrs ago; 90 degree upward bend
But I had no Erectile Dysfunction
tried all pills, VED, traction, Xiaflex PRP, ESWT, H-100 & stem cells; IF diet. implant surgery with Dr. Eid 3/28/19
to correct deformity - 20 CM Titan 2cm RTE / 1 cm RTE

Stepone

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Thanks for the comments. Who does your TRT management, is it the urologist or some other doctor?
I was going to message you privately, but I think all these information exchanges are important for everyone.
Thanks again,
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Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

curved

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Usually your general practitioner can administer the TRT.  If not I imagine there is a wellness center in your vicinity that will do it. You might also have some TRT clinics that use weekly injections in your neighborhood.
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51 yrs old; diagnosed 3.5 yrs ago; 90 degree upward bend
But I had no Erectile Dysfunction
tried all pills, VED, traction, Xiaflex PRP, ESWT, H-100 & stem cells; IF diet. implant surgery with Dr. Eid 3/28/19
to correct deformity - 20 CM Titan 2cm RTE / 1 cm RTE

Stepone

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Ok, checked with my general practitioner, they can do shots, but do you get any other testing or just testosterone?
Thanks
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Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

TonySa

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Doc will do a full hormone panel.  See the LEF suggested protocol here:  Male Hormones including Testosterone - Peyronies Society Forums
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3rte

curved

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Also, once you start getting the shots (which I think are usually done weekly) they will check your blood count monthly.  With pellets I found that they only needed to check the blood count every 4-6 months.  You will want to monitor the red blood cell count to make sure it doesn't get to high.  If it starts to creep up you will need to give a blood donation.  When I started with shots I usually had to give blood every 2-3 months to keep RBC count in normal range.  I haven't had to give blood since going with pellets.... not exactly sure why that is.  Been doing the pellets for the last 2 years.
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51 yrs old; diagnosed 3.5 yrs ago; 90 degree upward bend
But I had no Erectile Dysfunction
tried all pills, VED, traction, Xiaflex PRP, ESWT, H-100 & stem cells; IF diet. implant surgery with Dr. Eid 3/28/19
to correct deformity - 20 CM Titan 2cm RTE / 1 cm RTE

Stepone

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Wow, very interesting.
Thanks
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Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Chiefy

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I had my surgery 8 Mar and have not gotten anywhere near pre-surgery length back.  I also have Erectile Dysfunction now...no erection at all since surgery...but I can tell just by stretching I've lost substantial length.
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Peyronies for 2+ years.  Have Erectile Dysfunction for 8 months
Tried Xiaflex, 3 cycles, zero improvement
Had incision & grafting surgery, Feb 2019.  Fixed curve (I think) but resulted in substantial length & girth loss. 
Facing implant as remaining option

Stepone

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Chiefy, what surgery did you have?
When I had Nesbit with hinge correction for whatever reason or coincidence, same thing happened to me. My urologist did testosterone testing and found me super low. He said that I would not gain back the 1.5 inches I lost. It is what it is.
Have you had your free testosterone and testosterone checked?
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Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

TonySa

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My doc said w incision and grafting one should return to their current preppier stretched length.  If you had lost length due to peyronies, I think that could only be gained by traction 6 months after the graft is fully healed.
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3rte

Chiefy

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Chiefy, what surgery did you have?
When I had Nesbit with hinge correction for whatever reason or coincidence, same thing happened to me. My urologist did testosterone testing and found me super low. He said that I would not gain back the 1.5 inches I lost. It is what it is.
Have you had your free testosterone and testosterone checked?

I had incision with grafting.  No, hadn't thought about a testosterone check.  Good call, can't hurt.     
Logged
Peyronies for 2+ years.  Have Erectile Dysfunction for 8 months
Tried Xiaflex, 3 cycles, zero improvement
Had incision & grafting surgery, Feb 2019.  Fixed curve (I think) but resulted in substantial length & girth loss. 
Facing implant as remaining option

SteveK

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2 weeks post op PEG w Levine here. 90º upward bend w hinge and calcification. He grafted 1 of 2 plaques and did a plication 'tuck.' Healing well and perfectly straight.

Length is 1.5" shy of my former self but there is much healing and rehab work to be done. He's a big believer in traction starting at week 4. Flacid stretch length is the same and erect is a world of difference from the deformity.

I've had an excellent experience thanks to you all and the good Dr for solid information and expectation management. Surgery at Rush in Chicago was a breeze. Three days in a compression dressing and sutures mostly fallen out by now. Pain was minimal and took Tramadol nightly the first week mostly for erections. Not horrible but certainly not pleasant. Was so thrilled to have them! Moved onto Tylenol for 2-3 days as needs and nothing since. I sat around the hotel room with minimal walking for three days and generally moving fine at this point. Snug form fitting briefs are helpful to keep from rubbing and used bacitracin on the suture line which kept things a bit moist.

 There is a thickness about the suture line and throughout that is meant to dissipate w time. My scrotum was very swollen and turned black at the outset and that's 95% back to normal. Taking cialis 5mg at bedtime from week 1 for 30 days and that's meant to promote blood flow and 'nourish' the graft. It's a bit distracting and the erections were sore and bothersome at first. Nights 5-6 on are a non event.

I have to say it's been as good an experience as I could have hoped for at this point. Once again, thanks to you and Dr. Levine and his team for excellent expectation management.

On a side note: I did research CCH / Xiaflex. Just prior to surgery it was promoted by a Dr in LA as a good non-invasive solution but I failed to see the value in a lengthy and potentially painful series of injections with zero evidence to suggest a 90º curve would reduce enough under the best of circumstances to be in the functional range. Buyer beware!




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MarkDS

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Thanks for sharing your experience.  So glad someone has had good experience.

I’m now 11 weeks post op.  I am 1.5 inches below pre disease.  I am still having pain around the graft site, and have a residual curve of around 40 degrees, although I’m still not convinced I am getting full erections, and have only managed penetrative sex twice since the op.  I have lack of feeling in my head, but do manage to orgasm.

I am taking tadalafil 5mg daily, which initially gave me pain in my lower back.  But this has eased.

I have also been using a soma correct vacuum pump for around 3 weeks.  I have not seen any noticeable change since, but it’s early days.

One issue that I have is a painful circumsicion scar, especially underneath.  The tip of my penis rubs my clothes, especially as it retracts quite a bit during the day and just kinda stick out.

I have an appointment with my surgeon in two weeks, so will discuss things with him then.  I am also considering getting a second opinion regarding the residual curve.

I am also going to see if he has an opinion on the P Shot, or plasma rich platelets.  As that is something that has been recommended by my GP.

Like many, I am feeling a little lost at the moment.  So it is good to hear some positive stories.
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Peyronie’s started 3 years ago, resulting in upward curve of around 100 degrees.  Tried VED before opting for incision and grafting surgery in June 2019.  Resulted in loss of length of over 1 inch, and residual curve of over 40 degrees.
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