T.E.P (tunica expansion mesh procedure) and implant journal

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jj21

Hey guys,

Spoke to Dr Hakky via email (he is very helpful), I am in the process of organizing a video consult with him. I am not sure if he will be able to tell me much without a physical examination but I have emailed him the operation notes. He actually advised that he does not like the Tunica Expansion Procedure.

I also think I may have some damage to the pudendal nerve, this may explain some of my pain.

I am also seeing my GP this Friday to get an appointment with a new urologist to get checked out. This could take a month as they are mostly booked out, and they are reluctant to take on a patient whom they did not perform surgery on.

Still waiting on the original surgeon to advise on whether the results from the fluid found on the pump during revision is all clear.

After doing some research, the scrotal skin sticking to the pump could just be adherence which may clear up, or could be a sign of infection. It seems to be a very small part of the scrotal skin stuck to the pump, this causes some pain and burning when touching it and pumping.  

I've been trying to carry on with my life and go to the gym, wear a suit and go to my office job. It's been difficult, by the end of the day, I get a lot of pain and discomfort.

There is also still some backfill which is very uncomfortable. I have tried everything to rectify this, but no matter what I do, it seems to backfill 20-40%. The original surgeon definitely was able to deflate it a bit more with less backfill, only thing that makes sense is he was able to squeeze the cylinder which has thickened due to graft retraction a lot better, causing less fluid to be stuck in the tubing. Also, I was less active in the hospital, seems to be that, the more activity/movement, the more backfill. It almost feels like the cylinders are displaced, this is difficult to show in a pic, so I have added a picture to show with my hands. I will explain below:

Pic 1, normal cylinders:  This is how my implant use to inflate initially, the two cylidners would inflate correspondingly and at about 80% inflation I had a nice round implant. With blood flow, it would mimic a nice round natural erection

Pic 2 current cylinders: eventually, my left cylinder would inflate correctly, and right cylinder would inflate in a flat oval way as shown in the pic. So, the right side is flat, oval and softer. This also causes a slant to the left. During cycling, I also mostly only feel the stretch on the left side. When deflated, the cylinders almost look the opposite. Surgeon did advise that he believes its a thickened/retracted graft causing the right side to inflate less.  I am starting to find it difficult to trust a surgeon's opinion that places a pump in a worse position after revision to fix it.

When cycling, I get some pretty excruciating pain, mostly on the cylinder which inflates properly (left side), then after cycling I get some burning sensations throughout the shaft. Due to this, I have cut back cycling to 30-40m sessions, sometimes only once, and sometimes twice a day. I do not know if this pain is due to the tissue stretching or the possible stitch granuloma/chronic inflammation/irritation I have by the frenulum and circumcision site.

With the pump placement, the pump has gone poking the left side of my scrotum and the deflate valve is poking my right side testicle, very uncomfortable. I really think that the surgeon may have added extra tubing to try and place the pump lower during revision, however, he either added too much tubing or there was already too much tubing (he assumed he needed to add more tubing as the pump was high, but this was due to it being pointed up on an angle due to having excess tubing from the original operation..maybe). This has caused  the pump to move to the far left, and the deflate valve to twist into a horizontal position and move to the far right. This is just a guess and my only explanation to how a high volume surgeon in Australia, via a penoscrotal incision ends up leaving the pump in a worse position than before.

Due to the pain I had after ejaculating from sex, I wouldn't even think about sex atm. I really just want to be out of chronic pain so I can gym, go to work, be social, and resume my everyday normal life.


I will be back when I find some answers. As I really want a good result and my life back, I will keep striving to fix these issues as best as I can.

To anyone reading this considering an implant, I strongly advise going to a world class surgeon.

Appreciate any support and advice.

J

 
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

jj21

Just to add, I also regularly have a very warm flaccid. Another urologist (before my revision) here advised that this was a sign of infection... But, surely, my surgeon would have picked up on it during my revision if there was an infection? He removed the right cylinder and the pump? Maybe the fluid he found on the pump during revision was infectious? This would explain a lot. I haven't heard back from him yet.

As you can see, I am very confused with these symptoms. TEP + circumcision + implant, is a complex procedure.

I won't give up yet, I will keep looking for answers and solutions.

For all you guys supporting, thank you, I am grateful for all you and these forums.

J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Gap63

What a nightmare you are going through JJ, hopefully a resolution to your issues can be found soon.
Peyronie's Disease for 6 years
Titan touch 20cm + 1 RTE
Dr J Clavell, Houston, Sept 2022
Age 58

Curvekiller94

Keep your chin up JJ. Btw thank you so much for continuing to update your story. I know it isn't easy to do, and It must be frustrating going through this. I think you are on the right track consulting an expert on the matter. Props to you for getting this figured out. you're gonna get through this and put it all behind you one way or another because you are so motivated. Keep on the path
 
28 y/o
sex injury - gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed @26 peyronies w/pain
Pentox, cialis, NSAID, tramadol(as needed)
Sciatic  pain radiates penis to foo

jj21

Hey guys,

Dr Hakky advised not to shake after peeing with the titan as the dog ear will eventually cause the urethra to bend.

He was explaining a way to do it, but it was difficult to understand via video.

How do you guys usually pee, do you squeeze out the dog ear and then wait for the flow? This was kind of my understanding of what he was explaining.

J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Stepone

JJ,

When I first got my implant, I would initially pee into a jar, so I didn't have to bend my penis downward. After a month or so, it naturally started hanging lower. I do recall my dog ears hurting for a while, but they eventually softened up.
Hope this helps.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

jj21

Thanks Step, I don't have issues bending it down, it just bends to the left due to the dog ear on the right.

My understanding was that over time with the dog ear and shaking, the urethra can start to bend or become damaged, one of the reasons why backflow to the bladder can happen causing issues.

This was my understanding.

Anyone have any info on this?

J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Sonic

Did you get a response regarding the possible infection J?
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

jj21

Quote from: Sonic on September 05, 2023, 09:24:24 AMDid you get a response regarding the possible infection J?

All cleared, no infection.

I am improving very very incrementally, maybe 5% improvement each month. Have just started VED as well (as per Dr Hakky's advice), praying the graft thickening/retracting issue resolves itself, this would be a great aesthetic/cosmetic improvement, and really improve girth.

Thanks for your continuous support Sonic. I hope you find solutions to your condition as well.

J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Sonic



That's great news. Infection is a real nightmare. Even 5% a month is at least something and with the graft issue I really hope it resolves, since it is a graft there is hope as with time it disintegrates anyway. Hope Hakkys assistance can provide some help.

As for the support, no need to thank me bro, this is what this forum is for. Thank You For making such a detailed journal!
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

Hawk

I have never had an issue urinating since my hang was pointed to 4 O'Clock.  I do not think you get backflow to the bladder or that it causes UTI's.  I also do not think the dogears are likely to damage the urethra.  They continue to get softer for over a year.

When I urinate, I kind of give it one or two pulling/stretching/milking tugs and I am done.  It works better than just shaking for me.

I would not be the least concerned about it lying toward one side.  That is not uncommon with a 100% natural penis.
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

jj21

Quote from: Hawk on September 05, 2023, 09:53:04 PMI also do not think the dogears are likely to damage the urethra.

Thanks Hawk, in regards to the dog ears, do they get less pointy? Right now I can't move my penis to the right as the dog ear inhibits it. This makes sleeping very uncomfortable, especially when rolling over.

I also need to wear tight suits for work and the dog ear sticks out which looks very awkward, like a pin sticking out of my crotch.

Can I anticipate that these may improve over time, or should I just start accepting them and learning to live with it?

Thanks,

J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Hawk

Quote from: jj21 on September 06, 2023, 12:00:24 AMI also need to wear tight suits for work, and the dog ear sticks out, which looks very awkward, like a pin sticking out of my crotch.

Can I anticipate that these may improve over time...

Wow, It is hard for me to imagine suits so tight that your dog ears in your implant show through your skin, underwear, and pants.  I must wear some very baggy suits.

The Titan has hydrophilic cylinders, meaning fluids bond to them.  This includes body fat.  That, combined with them relaxing, means deflated cylinders start out feeling much like the plastic of a cheap crushed water bottle.  They end up feeling like surgical rubber tubing.  This process takes 12-18 months.  At that point, I think any dog ears will be softer, rounder, and of no concern.

Your  
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

jj21

Quote from: Hawk on September 06, 2023, 08:23:52 AMWow, It is hard for me to imagine suits so tight that your dog ears in your implant show through your skin, underwear, and pants.  

This is what I mean, you can see the bulge in the picture, then the dog ear sticking out when wearing tight clothes. It's mostly only prominent when standing in this position, but it can be awkward in public etc, don't want it to look like I have an erection. I try to stick the dog ear down and push the penis down as far as it will go, but it seems to create a bulge with the dog ear sticking out.

Can anyone confirm if this will improve over time?

 
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Stepone

J

It looks like you are "wearing" your penis hanging down.
First my surgeon told me to keep it up for the first two months as much as I could. It meant wearing my clothes a little baggy as my penis would sometimes come above my normal waist area. After about 3-4 months I started wearing it to the side as I did prior to my surgery.
I have never worn my penis straight down as it always seemed to crush my balls.
If I go commando that's a different story.
My surgeon told me to keep it up as long as I could as it with its healing it would give me a more upward angle when fuc$ing.
It has worked well, as I never have to hold my penis to guide it when I fuc$. It is in the perfect angle and I can use my hands for other things....
Hope this helps.
The dog ears do get softer and after 4 years with an implant, I can no longer see them. I can still feel them if I hunt for them, but definitely not on a noticeable list.
Hope this helps.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Hawk

EVERYTHING Stepone said ""

I also question if you are 100% deflated.
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

jj21

Thanks guys. So, I am guessing this isn't normal ?

StepOne - I'm almost 9 months post-surgery, I was advised I could wear my penis down now. But, good to know that the dog ears do almost become non-existent.

Hawk - I have had deflation issues for a while, but the surgeons here all say it is fine. I know I can deflate it more, but it will backfill slightly each time. Have tried everything here, only thing left is to get an MRI to see if the valve on the reservoir is pushed down. Unfortunately, my original surgeon isn't helpful at all and hasn't replied to my recent two emails. I am trying to find a urologist in my state willing to look into everything.

On a side note, a lot of the pain has subsided. Very minimal pain and if the bulge wasn't so prominent, I could comfortably go back to my old life.

Appreciate the support. Will do an update soon.

J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Sonic

Nice to see there is pain improvement. Hope you have a good day and thank you for all the updates.
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

Hawk

If you have backfill issues, it is likely you were not fully deflated in the first three months after your implant.  As a result, your reservoir capsule is scarred-in too small to allow the reservoir to fill with all the fluid.  If you try to push all the fluid from your penis cylinders to your reservoir, it will be under so much pressure in the restricted capsule that it leaks back against the valve and partially fills the penis.  This means that you seldom, if ever, have a fully deflated penis.

Having a partially inflated penis means that there is always cylinder tip pressure on the penile tissue that could result in erosion of the tips through the penis.  There is a more likely issue that with a penis perpetually in a state of partial inflation, you will stretch out the crus scar capsule.  This is the scar capsule that holds the base of the cylinders tight.  It lies behind the scrotum.  If this stretches out, your inflated penis will point down at an angle toward the floor.  THIS IS EVEN MORE LIKELY IF YOU Dress WITH YOUR PENIS POINTED DOWN.

How do you treat a reservoir that does not want to hold all of the system fluid?
1.  The most essential tip is to prevent the problem by deflating 100% in the early weeks after surgery
2.  Be sure that you deflate 100% and immediately give two pumps on your pump to lock the valve
3.  If you get some backflow, re-deflate every hour or so until you progressively stretch the reservoir capsule
4.  If you still get backflow, wrap your penis with Coban while it is totally deflated (especially at night).  This will prevent reinflation and will hopefully stretch the reservoir scar capsule.
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

jj21

Thanks Hawk, I have tried all those things to no avail. The surgeon even took out some fluid from the reservoir, there is some backfill still. It is very minimal, not enough to stretch out the dog ear, but enough for the penis to go from very light, to slightly heavier feeling. Hope that makes sense.

Do you still think there is a risk of erosion with this small amount of backfill?

I am a bit stuck here in Australia, all the surgeons have said that it is fine and nothing to worry about. Dr Hakky says to do an MRI, but I cannot travel to see Dr Hakky, it would be too expensive.

Also, you don't recommend wearing the penis down 8 months post-op?

Any advice is appreciated.
J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Pfract

Hey jj21! The picture you posted really shows your implant bulge, no doubt. Could you try some sort of compression shorts like the ones used at the gym? Maybe that would help conceal the bulge?

Couldn't hurt to try. Sad to know that your urologist abandoned you. But at least you found support on Dr Hakky. Even if by video.  

jj21

Quote from: Pfract on September 26, 2023, 12:49:41 AMCould you try some sort of compression shorts like the ones used at the gym? Maybe that would help conceal the bulge?

Thanks P, I can try compression shorts, but, I already have compression underwear, doesn't seem to make a difference. I really just want to know if this is normal or not, I am guessing it's not, which means I am either not deflating fully or need to wait for the dog ear to soften, or perhaps, for the angle to drop lower?

Getting this surgery outside the U.S, really is a risk. If something goes wrong, there is not much you can do.  
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Stepone

Jj

I am not a doctor, nor can I see or feel how uninflated you are.
I suspect that your physician is better equipped to determine the extent of your deflation than us.

I agree that these doctors install the implants and then it's like we are on our own. There is no book, no step by step instructions, no detailed photos of what is normal and what should cause concern.

I would try not wearing your penis down for a while longer. Give it a try and it should help with many issues.
You wrote you had the implant 9 months ago, but you did have the revision. Surgeries take healing time. Enjoy your penis, give it time, stop tucking it down.

I hope this helps.
StepOne
 
 
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Trapper

I'm not really following why the bulge bothers you? It doesn't look bad. Mine can be seen if I wear anything other than compression shorts at the gym I don't really care. Pretty sure it is normal with the titan.
33 years old, symptoms started early 20's but never really bothered me until the last two years
Trimix worked well but caused more scarring. 
Titan 24CM XL+ 1 CM RTE'S Dr. Hakky 4/4/23
Hyaluronic acid penis filler by Dr. Hakky June 2023

Hawk

I am 5'8" and 152 lbs with a 22cm Titan and I certainly do not have a bulge anything near that noticeable but I don't think I would be overly concerned if I did.  

The question is what do you look like naked?  Your penis is either flat if 100% deflated or it looks like you have a semi-erection if you are not properly deflating OR if you are auto-inflating.  If it is the latter, you need to address it.
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

IwillbeatPD

If I can chime in here for a second, granted I don't have an implant yet, but I also don't understand the concern with a small bulge. I mean, even now I can see the outline of my dick in certain pants. It's normal and not anything I'm ashamed about. That's my manhood. The only way I'd be concerned is if I was walking around with a full erection, that would be another story. You know, like popping a tent in your pants. This concept reminds me of a girl with large breasts trying to compress them with a sports bra at all times. Not necessary imo. Wear a bra, sure, but you don't have to try to hide what you have. When I finish my surgery I'm expecting something around a 6-7 inch flacid and I'll just wear compression briefs if it's just incredibly noticeable. But won't worry about it at the end of the day. What if you had a 9 inch dick naturally that showed through your pants at times, would you be ashamed of that, or happy with it? I think we become too aware of our dicks sometime on this forum due to what we deal with and we lose sight of what the average person without Peyronies Disease would feel.
Fit 37 year old athlete. Hinging and hourglass began Sep 2022. Tried VED, Restorex, tadalafil with no improvement. Implanted by Dr Hakky 11/28/23 with Titan touch XXL 26 cm no RTE's. Pre op 8.25Lx 5ish G. Post implant: 8.25 L x 5.5 G

Stepone

Agree about the bulge thing.
By the way, my Titan penis is never flat.
If I squeeze the thing to death, I can get most of the fluid out, but it's never flat.
Is anyone's Titan penis flat when deflated......or have I not been fully deflating for 4 years.
The last time my urologist looked at it, he said it looked good.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Hawk

Flat might be a bit overstated, but not much.

When I extend an effort to totally deflate, I:
1.  lock my valve open
2.  put the heel of each thumb on each side of my penis right at the glans
3.  I roll the heels of my hands, squeezing the shaft between them.  I repeat the whole way to the base
4.  I then pinch off the base and squeeze with my thumb and index finger behind the scrotum to drain any fluid
   from the base.
5.  I give two pumps on my pump to set the valve and reduce the chance of backflow.

This entire process takes me seconds because I have done it so many times.  When I am finished, my cylinders are FLAT.  This gives my penis a somewhat flat unnatural appearance.

Over the next 15 minutes, my penis loses most of the flat appearance from blood flowing into my penis, but if I palpate the cylinders, they still feel flat, like a flat drinking straw with one side of the cylinder touching the other and a distinct edge running the length of the cylinder.

Since the cylinders are hydrophilic, body fat binds to the cylinders, and they feel soft, almost like very coarse veins or arteries or maybe like rubber surgical tubes.  I can feel dogears, but they are not stiff like new cylinders.
 
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

jj21

Attached are deflated pics. I can deflate it to the point that it is flat, like 2 straws, and then it will end up like this. Does this seem reasonably deflated? Risk of Erosion? The urologists I have seen here all say that it is fine.

I am getting an MRI done next week for further diagnosis of the backfill and prostatitis issues.

Just to clarify, I prefer to be as deflated as possible, and less of a bulge as possible, just for simple comfort and ease. I would also like to confirm that, if the device can be more deflated, it probably should be. I do not want any risk of erosion, and a titan flaccid is already large, with backfill, it's a little heavy and with an active lifestyle; this can be quite uncomfortable.  

I saw a urologist here, and am doing more tests, will do a good update soon.

Appreciate all the advice guys, I am quite stuck here as my surgeon isn't responding, other urologists aren't too keen to take on my care. The urologist I saw today was good, but, he also advised that he usually only sees implant patients once after the operation, and then a decade later. Take note - if you aren't in the U.S, and you have issues with your operation, some of these doctors either, aren't aware themselves of what's happening or simply, don't care. They will just tell you live with it, and move on. . I had a high volume implant surgeon (for Australia) tell me that I should've just given up on a sex life before the operation so that I wouldn't have these issues????

J

 
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Stepone

Jj
As I said photography makes it difficult to tell.
I would use Hawk's physical description of his penis more than photographs.
That being said, the way your penis hangs, it appears to be deflated, but again refer to Hawk's description. Also pay close attention to his remarks about "over the next 15 minutes....."
Doctors, ugh!
Some are good, some are bad, some are great.
I had several urologists tell me early on, there was nothing could be done for my penis. It's sad, but some urologists have not received implant training and then some aren't particularly comfortable with touching another man's penis. I had one urologist ask me to move my penis so he could see it better. He had gloves, but didn't want to touch it. On the other side, I had one urologist ask me if he could examine it and he was pulling and jerking on it so much, he triggered the "launch sequence" and my penis started getting hard.
It's all about patient care, some surgeons are good, some are bad.
But back to your penis, it looks good, my penis head is pretty big, so when my penis is soft, it really is a mushroom head. Your penis looks well proportioned and I wouldn't worry about being naked. As penis implants go, the implant changes the soft norm size of our penises to a "medium".
Hope this helps
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Trapper

Quote from: jj21 on September 27, 2023, 12:19:38 AMI would also like to confirm that, if the device can be more deflated, it probably should be.

I asked Dr. Hakky if I need to squeeze my penis everytime I deflate after I got the filler as I was scared it would mess it up and Hakky told me you do not need to squeeze your penis everytime and fully deflate. He said most people that get pressure atrophy are hyper-inflated for long periods of time. Risk of erosion is mostly from malleables.

I know Dr. Eid has a different perspective on this not sure which is correct.  
33 years old, symptoms started early 20's but never really bothered me until the last two years
Trimix worked well but caused more scarring. 
Titan 24CM XL+ 1 CM RTE'S Dr. Hakky 4/4/23
Hyaluronic acid penis filler by Dr. Hakky June 2023

Hawk

There are three potential concerns with not fully deflating: Erosion of the cylinder through the tissue, Atrophy of penile tissue, enlarging the scar capsule in the base, and getting a lower erection angle.

As I stated, erosion is not the main concern since it is uncommon to rare.  The bigger stated problem is simply reducing the angle when inflated (erect).  Is it a real concern?  Depends on who you listen to, but it costs NOTHING to totally deflate, except maybe in the case of fillers.
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

jj21

Thanks guys, appreciate the support.

I dont know about you's, but, with an already large flaccid titan, I think being fully deflated really adds to the comfort. Even being 15% inflated, can be uncomfortable and a little heavy; especially being a shorter guy with a larger implant.

Quick Update

I must say, these issues have been something else. I am trying to forget about the implant for now. I a doing an MRI to try to diagnose the prostatitis issue I had (pain after leaking prostatic secretions randomly). The MRI may also be able to confirm that everything is placed correctly, and if there is anything inhibiting the valve on the reservoir which could be causing some auto-inflation.

As for TEP, with engorgement I am probably just under my pre-op of 6.5 BPEL. So, at this point, I do not think all the trauma of TEP and getting circumcized was worth it. This may change, I really don't know. I tend to believe that it is better to keep it simple, do the implant procedure and don't worry about extra lengthening. The most you will get back is probably 1cm, which no woman (or man) would probably even notice. Is it really worth the risks?

With cycling, I am doing 15m VED twice a day in addition to 15m straight after of just normal cycling, so 1 hour a day. I will eventually up this to 2 hours a day.

Graft retraction/thickening - I saw another urologist here who says that tachosil graft usually retracts or deforms in the first few months, then goes back to normal around 18 months with cycling. Fingers crossed this will be the case.

I might update after the MRI, if anything significant is found.

I will say this though, don't let these issues get the best of you, excel in every other area of your life to the point where penile implant surgery is not only insignificant, but financially, you can afford the best doctors etc in the world.

Appreciate all of you's and am always here if anyone needs support/advice.

J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Pfract

Hey jj21! You do have some hope there. If you are not satisfied with the answer you get, please ask for the copy of them and book a consultation with Dr. Hakky to have him review the results. Who knows if he won't be able to further guide you on this?

Stepone

Jj,
I am confused. I don't see how you are trying to forget about the implant, when you are using VED twice a day.
Recovery from surgery is not an easy task for your body.
I am not sure what you are looking for with the VED?
I mean what exactly do you think the VED will give you?
Did you ever think VED is causing irritation to the healing process?
I also found it interesting that Hawk said erosion is rare and not common, so that is a concern you should take off the table.
Hope your mri reveals nothing.
StepOne
 
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Hawk

I think there is about zero chance that anything could be interfering with the deflate valve/button on your pump.

I tend to agree with a TEP being way too much extra risk (complications) and recovery time for the amount of gain.  
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

jj21

Quote from: Stepone on September 28, 2023, 09:18:50 AMI don't see how you are trying to forget about the implant, when you are using VED twice a day.
I am not sure what you are looking for with the VED?
I mean what exactly do you think the VED will give you?

Hey Step, thanks for your message and support as always.

As per Dr Hakky's advice, my flaccid shaft is thicker than my glans, causing the cylinders to give some irritation by the frenulum (this is why I have had some chronic pain by my circumcision area). He said he has seen it before in the TEP/circumcision procedure (which causes a lot of complications and is why he stopped doing them). He recommended VED to help stretch the glans, and lessen the irritation. Also, it may help with the retracted graft as it expands the tissue. Thus, I have been using VED twice a day.

What I mean by I am trying to forget about the implant, is that I don't think about it, I don't really think about sex or using it either. Although, I cycle regularly; I mostly focus my energy and mind on other goals.

I also hope the MRI reveals nothing, but I can clearly see auto-inflation, or some backfill. If we could post videos here I could easily show it. This is just uncomfortable at this point, as a deflated titan is a lot more comfortable than one with 4-5 pumps in my opinion. At this stage anyway, maybe it will improve in time?

I am 9 months post op, my revision was just to fix the pump placement and remove some fluid from the reservoir, so, I do not think it would prolong the healing too much.

Thanks for all the support.

J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

jj21

Quote from: Hawk on September 28, 2023, 10:38:53 AMI think there is about zero chance that anything could be interfering with the deflate valve/button on your pump.

Thanks Hawk, my understanding is that, there is another valve/button on the reservoir (not pump), and as per Dr Hakky's advice, sometimes the valve gets pushed down, causing some auto-inflation.

Hopefully it's nothing and everything continues to improve over time.

Side note: A lot of the general pain has subsided, there is some pain by the frenulum which seems to be subsiding. The only time I am in significant pain is after a prostatitis flare up. If the prostatitis was healed, I could probably have an alright sex life. Perhaps, something to look forward to in the future.

I agree, I don't think TEP is worth the risks, even if a year from now I am back at my pre-peyronies length, I don't know if it is still worth it. Time will tell.

Thanks for all the support.

J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

jj21

Hey guys,

I just wanted some advice on two things, just keep in mind that I haven't fully healed yet either.

1. I had sex, and my shaft becomes quite sore and numb after about an 45m. This is even when at 80-90% inflation for the whole period. Does this improve over time? Before peyronies, I use to have sex for 3-4 hours sometimes, 6-7 days a week. Will it eventually be possible to have longer sex sessions, or should we limit them to 1 hour to avoid pain?

2. I wanted to know everyone's opinion on cycling. For the past month, I have been doing 2 x 15m VED sessions where I pump and hold for about 40-60s then release then repeat. Straight after I remove the VED and cycle normally for another 15m. So, 1 hour total per day. Sometimes, I will do an extra 5 minutes in the end where I pump more, this results in quite excruciating pain.

I just want to know what the likelihood is that I will continue to make length/girth gains 9 months post surgery? And, if cycling for 2 hours as opposed to 1 hour a day would make much difference?

Thanks,
J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Stepone

Jj21

My penis has gotten a little sore after long sex, but it is rare.
But I still can't understand how you think VED sessions don't have any impact on your penis health.
I used to do VED prior to implant and it would make me sore when having sex.
What do you think "the excruciating pain" is from? Duh!
Try stopping your VED for a while and I bet your penis will have time to heal and sex will be pain free.
I know a penis is not a muscle, but it sure seems like you are overworking your penis. Give it a rest.
Stay well.
StepOne
 
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Sonic

I remember 2 months ago or something you said you had sex and ended up with excrutiating pain and now it has gone to soreness and numbness? I guess thats some improvement at least?
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

Hawk

JJ, please don't take offense.  I am just keeping it real and encouraging you to use the knowledge you have gained here over the last 5 years.

1. Will your penis get to the point it does not hurt after 45 minutes of sex? You know the answer to that if you read one journal.  Not one suggests there is a time limit on sex or that they cannot have sex whenever they want for as long as they want.

2.I just want to know what the likelihood is that I will continue to make length/girth gains 9 months post surgery? And, if cycling for 2 hours as opposed to 1 hour a day would make much difference? First off, almost none of us had TEP, so we are comparing apples to oranges.  Applying common logic (which does not always work), I am not sure what using the VED and then putting the VED away before inflating accomplishes. They both stretch the tissue.  The VED adds some blood flow and some glans engorgement but that would only help gain any size if you get natural erections.  It has nothing to do with inflated size.  I would personally see if there is a safe way to use them together (inflate then top off with the VED or use the VED and immediately inflate while still engorged.

Good luck buddy!
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

jj21

Thanks guys,

Step/Hawk - I use the VED as Dr Hakky advised that my glans/frenulum pain was due to the circumcision procedure as well as the glans being smaller than the shaft and getting irritated from the titan (he explained it a lot better). He advised VED will help as it will allow the glans to expand. He was right, ever since I started VED, the frenulum/circumcision area pain in the glans I had, has improved. Note: I think it's important here to realise how a high volume surgeon can make a difference, Dr Hakky has performed many TEP and implant procedures and thus, has come across these issues I have had before. Accordingly, he was well aware of it and was able to offer a solution. In contrast, the surgeons in Australia were unaware of what was going on, I am guessing because they are just not high enough volume to have ever come across these issues before, especially pertaining to TEP. A high volume surgeon in Australia, is still a low-volume surgeon in the U.S.A.

With the VED, I inflate the titan fully then insert into the VED, pump the VED for 15m in 45s intervals, then remove VED, and pump the titan a bit more and leave for another 15m on its own.

Regarding the time limit to sex, I haven't read how long people have sex in their journals, but it is good to know that eventually, longer sex does not result in pain? 3-4 hours would be possible ?

Sonic - The excruciating pain after ejaculating is related to the prostatitis, when the prostatitis is in control, there is just a general soreness/discomfort/tenderness. If the prostatitis was fully healed, I could eventually resume a decent sex life.

J


 
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Hawk

Quote from: jj21 on October 05, 2023, 08:40:30 PMWith the VED, I inflate the titan fully then insert into the VED, pump the VED for 15m in 45s intervals, then remove VED, and pump the titan a bit more and leave for another 15m on its own.

Regarding the time limit to sex, I haven't read how long people have sex in their journals, but it is good to know that eventually, longer sex does not result in pain? 3-4 hours would be possible ?

Using the VED and inflating at the same time makes logical sense.
I am 73, although not typical, I can and have had sex for 3 hours since my implant.  I can and have had sex multiple times in one day.  I had ZERO issues with either.
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

Pfract

Congratulations on (finally?) having sex with your implant. How was it, besides the soreness, if I may ask?  

jj21

Quote from: Hawk on October 05, 2023, 08:58:23 PMI am 73, although not typical, I can and have had sex for 3 hours since my implant.  I can and have had sex multiple times in one day.  

Hawk, reading stuff like this makes me so happy being a younger guy with an implant. We potentially have another 30-40 years of sex to look forward to. This makes the small issues we face now, seem insignificant.

Great to know that 3 hours sex without pain is possible. I think I just have a lot more healing to do.

Thanks again,
J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

jj21

Quote from: Pfract on October 05, 2023, 11:11:50 PMCongratulations on (finally?) having sex with your implant. How was it, besides the soreness, if I may ask?

P,

Sex was good, sore, but good. With engorgement, it does mimic a hard natural erection (required cialis/viagra, though I think this is improving with VED). Some pain after ejaculation, though I think this is prostatitis related.

Some general soreness after 30-40m, though it seems this is very slowly improving and I just have more healing left to do.

Catch up on Skype sometime.

J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Sonic

Quote from: jj21 on October 05, 2023, 08:40:30 PMSonic - The excruciating pain after ejaculating is related to the prostatitis, when the prostatitis is in control, there is just a general soreness/discomfort/tenderness. If the prostatitis was fully healed, I could eventually resume a decent sex life.


I see. I understand now. Thought it was related more so to the implant itself. I've had some bouts of prostatitis and know exactly what you mean. I was offered pills but never took it. Something that always helps me personally with this is multiple days of water fasting. For me, things like sugar, bad diet really makes it a lot worse. Caffeine too.


 
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

jj21

Quote from: Sonic on October 06, 2023, 01:07:48 PMI see. I understand now. Thought it was related more so to the implant itself.

I seem to have developed prostatitis from the implant surgery. Although, it is slowly improving. I have ejaculated for semen culture and had no pain, but then ejaculated other times and had pain. It's hard to say if it is implant or prostatitis related. As time goes on and I heal, I think it'll be a bit more clear.

Sorry to hear about your prostatitis, it is a tough condition. If yours is inflammatory prostatitis - I found green tea, turmeric are natural anti-inflammatories which help. Colchicine and naproxen also help keep everything under control, although they can have side effects and aren't recommended long-term.  
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Pfract

jj! It seems the more you recover, the better you feel. Rooting for you my man!