experience with Lymphoma & Peyronies & Implant surgery needed

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ma

I am 55 year old - just found this site today - thanks for doing this - i am already getting some great info

I had huge sex drive and good sex life pre cancer -
lymphoma - was very bad so a lot of chemo & radiation
now 7 years cancer free
post cancer testosterone way down -  so boosted T with injections but sex drive and erections just dwindled -
tried Viagra just really didn't work
I'm about 40 lbs overweight not a big into exercise but not way out of shape - i generally have a very healthy diet - just too many calories
developed Pyronines sept 2019 - went pretty fast to 90 degrees up - urologist wanted to do  Xiaflex - insurance kept rejecting procedure then covid hit and my urologist went "dark" and wouldn't discuss my concerns even via email

sex and erections seem to be less frequent - my size has gone down dramatically from 10 years ago
Sex is down to 1 position and i can tell my wife is getting frustrated

I read about all the complications related to fixing ED & Pyronines before surgery and then i look at surgery as a way to skip all these options that really may not work and take so much time to get to - and the benefits of surgery seem pretty amazing.

I also have suffered from a feeling of being too small when flaccid - a grower - so having an implant would permanently and immediately fix this feeling of inadequacy.

fortunately whether insurance pays for it or not i can afford it - so i am ready to do it - just wondering if someone has that extra perspective for post cancer - low T - pyronines patient.  And has a good suggestion of how to travel to the best surgeon - i live near seattle and not seeing options here, my guess Southern CA is best option -  i can take some time off and fly - hopefully the previous limitations of covid can allow me to get on this right away.


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thrownacurve

Hey ma, welcome to this board and discussion with the fraternity of bionic wieners.

I can't really answer as to the cancer angle, but as to the implant, I just got one. My bend was also up at about 90 degrees, I basically couldn't have sex, don't know how you manage it but good for you. I could get good erections, not like my 20s or 30s, but functional except for the Peyronie's.  Started about 45 degrees to right, tried oral meds and injected verapamil, tried pumps and traction, had a blip where it seemed to reduce and turn to a slighter upward, but almost immediately progressed to what my surgeon described as finding it a full 90 degrees in the operating room. Was going to get straightening surgery with Levine, either plication or graft depending on what he found but was ill and the surgery got cancelled. Procrastinated, then decided I had enough and got the full treatment - excision/grafting and pump. I'm new to it, this was only 3 weeks ago, but so far I am very happy with the results. I have more hanging flaccid then ever and it is beginning to look more and more natural as the swelling goes down. Not looking as if I am getting bad scarring as the incision heals. My surgeon chose to do the implant through a sub-coronal incision as they had to do it for the reconstruction work anyway I imagine. I have worked with the implant slightly, at 3 weeks I am now able to pump and deflate with little pain, and I have not gone near a full erection yet, but even partial is straight and with excellent restored girth and some restored length. I am still having some pinching in the scrotum as the pump and my balls are like one percenters fighting for turf, but I expect that will get there. So in summary, we all make our own decisions but I am happy I did it rather than straightening surgery and dealing with potential erectile problems anyway. Wish you the best of luck with whatever your decision is, hang in there as I know this condition is horribly frustrating and psychologically damaging. One last comment, I am pretty surprised as I thought early on I would feel less of a man and embarrassed, and in actuality I feel so unbelievably much better knowing I have a functional and not deformed penis any longer. It is truly changing my whole outlook on life.
60 Years Old, healthy and young for age, diagnosed 3 years ago. Verapamil by Levine, recommended for either plication or graft, but surgery cancelled. Abandoned hope for 2 years. Implanted AMS 700 CX October 2020. So far, so good.

ma

Thanks for the response - and happy to here you are on the mend

curious about the full treatment - is that a 3 piece system like Titan

I probably would have done a lot more testing of options but the ED was progressing - so was atrophy - then Peyronies hit - and my Urologist couldn't get my insurance co to budge on doing the xiaflex - he said it was 20k to do myself - Covid put me in a mode of waiting and ready more about surgery  - and honestly for the time and money and weighing risks on both ends it just seemed like surgery could be my better option - and a big part of this option for me is better flaccid size and confidence i will be hard - i think another side benefit for implant for me to is i have struggled with pre-mature ejaculation - and 24 refractory period - so no worry about going soft

it also seem that Peyronies bend up works good with implant - given the implant sits on top of penis

can i ask what you spent on surgery?  
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thrownacurve

Quote from: ma on November 07, 2020, 07:40:07 PM
Thanks for the response - and happy to here you are on the mend

curious about the full treatment - is that a 3 piece system like Titan

I probably would have done a lot more testing of options but the Erectile Dysfunction was progressing - so was atrophy - then Peyronies hit - and my Urologist couldn't get my insurance co to budge on doing the xiaflex - he said it was 20k to do myself - Covid put me in a mode of waiting and ready more about surgery  - and honestly for the time and money and weighing risks on both ends it just seemed like surgery could be my better option - and a big part of this option for me is better flaccid size and confidence i will be hard - i think another side benefit for implant for me to is i have struggled with pre-mature ejaculation - and 24 refractory period - so no worry about going soft

it also seem that Peyronies bend up works good with implant - given the implant sits on top of penis

can i ask what you spent on surgery?

Hey ma,

So, by the "full treatment" I meant I had excision and grafting, basically a penis reconstruction, and an implant done all at once. The implant is an ALS 700 CX, a standard 3 piece implant. The CX designates more sturdy cylinders, more like the Titan, to deal with the curvature.

Fortunately I have very good insurance and my cost so far is negligible, about a hundred or two. The verapamil injections cost me more, I had to purchase the medicine myself and get partially reimbursed due to it being "experimental" and some ridiculous insurance rules. That was much more than this procedure ended up being. My surgeon gave me the option of penile surgery, either plication or grafting/excision but the plication would have cost me more length and I already lost length to the disease. She also explained xiaflex, but said I was at 75 degrees (actually found to be 90 with a better erection in the operating room) and realistically could only expect to get to 30 or so. Also, I've been through the injection series and in my opinion they sucked, and the xiaflex can also cause other issues and is pretty newly out, I just wasn't confident in it.  
60 Years Old, healthy and young for age, diagnosed 3 years ago. Verapamil by Levine, recommended for either plication or graft, but surgery cancelled. Abandoned hope for 2 years. Implanted AMS 700 CX October 2020. So far, so good.

TonySa

If you can travel, I'd consider Dr Eid.  He has installed many implants without the excision/grafting surgery and almost fully corrected the curve.  The Titan is usually recommended for severe curves.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

shrunken_dick



Did you get any shrinkage because of low testosterone?  
29 year old. I was taking 400 Mg spironolactone to treat hair loss. Xanax withdrawal in combination with spironolactone shrunk my penis from 6" to 4".
I am seeking information about the sliding technique.

ma

thanks everyone for the help

in regard to shrinking from testosterone - i can't say it was from testosterone - my own diagnosis is my size loss was from the chemo and radiation - i was stage 4 and had 2 stem cell transplants - pretty much on life support a couple of times - so wreaks havoc on all bunch of areas of the body - the time of starting chemo to being completely off chemo was about a 2 year process - so not a lot of sex during that time either -  My testicles shrunk a lot too - so T production was not good post cancer - and i didn't start T therapy for 6 months following last chemo and transplant   --  i also think that my along with the dramatic decrease in sex and physical weakness my unit did not get a work out and like muscles i think the lack of use led to atrophy --- don't get me wrong I'm happy to be alive - but after a while with health more stable i think about getting some of what i had back and when you read about very positive experiences you start to get hope.

i guess for me that is another potential positive of the implant system - i would get more size in my scrotum too?

i do plan on meeting with oncologist to discuss long term cancer issues and will be discussing this in more detail - trying to find oncologist that has experience with peyronies.



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TonySa

The only impact to the scrotum with an implant is the pump is placed there.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

ma

when a was young:   when i was flaccid i was not very big - always insecure in the locker room and even around my wife - but i was fine when I was aroused and hard - was plenty happy with my length and girth - not huge but good enough.  Also, I was sort of insecure about the size of my testicle and scrotum and they never really seemed to have room my scrotum didn't hang much - they worked fine though i had more than enough sex dive and I have a lot of children with my wife.  

But after the chemo they went from walnuts to grapes - i had a vasectomy before chemo but chemo renders you permanently sterile and Testosterone production generally drops way off - so you need to supplement for the rest of your life.

so when i say bigger testicles I'm hoping if I can upgrade to a bigger pump - I'm ready to say absolutely and if you can make the whole "sack" hang some more - go for it.

I think it would be helpful to get some insight into how i might be able to get my insurance company to at least pay some of the cost.
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ma

my guess with Covid, insurance arguments, finding the right doctor, scheduling ect. that I am at least 3 to 4 months out from surgery.

I was wondering if there was some good preparatory work to do before surgery:  Weight loss, stretching penis, pumping penis, vitamins, ointments, natural remedies, kegels, squats, hot and cold (hot tub and ice baths), sit-ups ....?  And items to stay away from -  I have read some negative damaging stuff coming from stretching and pumps.

Even small items like shaving bald down there for a coupe of months - everything - that's not by end goal but if the skin is conditioned to completely shaven - when they do it for surgery your body doesn't have a bad reaction - just another thing your body is not trying to battle in the recovery.

Also wondering if doing some "ultra - sound" treatment is worth investigating - not at all convinced it will cure Peryonies or ED - but even if it helps with 5% increase in circulation - circulation is important for healing from surgery - correct?  And it just seems like a treatment that most likely cause damage.
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TonySa

To prepare for implant surgery, traction and VED are a great idea to regain any lost length so that a larger implant can be utilized.  Letting the surgical team shave at the time of surgery is recommended to decrease any chance of infection.  The doc will have you wash w hibiclens before surgery as well.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

SW01

I was told not to shave before surgery. They did not want me to potentially cut myself and increase infection risk.

Not sure why. My shaving was a lot better than theirs.

Ved and traction right up till surgery helps.  
Dealt with ED, Peyronies, & venous leak for 3 yrs.
implant on March 7, 2019 w/ a Titan 18 cm plus 1cm RTE
Revision after hernia surgery. Dr. Andrew Todd, Richmond KY
Removed Titan and put in LGX 18 cm plus 2 RTE's, 20 cm total.

ma

assuming I can buy both of these on line - any suggestions on brand and purchase site?

Did both of you guys go under or did you do a spinal block - i have had a lot and long surgeries with my cancer and a tough time coming out of anesthesia don't look forward to that.  I think I could handle being awake - not watching but being awake

thanks again
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TonySa

Popular traction; penimaster pro or restorex
VED: SOMA

Dr Eid does spinal w no general.  However you should be able to request any doctor to work w an anesthesiologist who will do a spinal since you've had problems w general.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.