Advice, Penile Implant For Young Patient Who Exhausted Usual Treatments

[PeaceofPain07]

Hope all’s well. My name’s Shaad, 34, from NY. I feel that after years without success with typical treatments of ED, penile implant may be on the table now. Any useful advice is appreciated thru here or other forms of contact. In respect of your time, I’ll try to describe years of ED as shortly as I can.If you don’t want to go thru my long history in my 2nd post, you can skip that and I would request to only review the questions in my 1st post here:

1) I’ve heard a mix of good/bad stories on penile prosthesis. Most forums and published medical studies I’ve came across show positive data. 1 thread in particular shared below has many bad stories that may scare me out of it. The many bad stories in that thread makes me question if the positive data from other sources I've read is just a complicated form of sales marketing? If not marketing, then somehow many people with bad experiences somehow found their way into one thread here? I read 1 person state these posts are fake, but there is no financial benefit to posts that discourage selling of a product:
https://www.steadyhealth.com/topics/rem ... le-implant

2) I’m considering Dr. Francois Eid or Dr. Andrew Kramer, but am open to researching more doctors. Recommendations? Anyone regret getting penile implants, especially from these 2 docs?

3) I’ve mostly seen data of high satisfaction rates reported by mostly elders, and not much data on how satisfied a young person still is with implants 10-35 yrs later. Are you aware of such data?

4) I read the device need repair/replacement after a couple yrs, which will effect me more as I'm young. After each repair/replacement:
4A. Does the chance of infection increase? If so, how much and how severe can infection be?
4B. Does the penis shrink further? On average, how much?
4C. Is there additional pain? If so, how much?

5) How do most patients describe their pain level and how long it took before they can satisfyingly use the implant with none-moderate pain?

6) Are there any other health risks for someone young that I should be aware of?

[PeaceofPain07]

To best understand why I feel penile implant is my best option now, I would need to share my long history. This part can be ignored if you don't have the time:
I’m 5’11 and 179lbs. I’ve had ED at least since around 19. None-minimal morning wood. I get an erection when desired about 65% of the time, and can hold it successfully for intercourse about 33%. Oddly, my libido and ability to hold an erection appears to get worse if I’m standing, which I read may be venous leakage.

I tried eating better and exercise even though I was a good weight. As it didn’t help much, I visited local doctors. In my mid 20s, I was prescribed tadalafil. As it was expensive back then compared to now, I bought tadacip (generic tadalafil) online from an indian pharmacy. I wasn’t sure if pills were real, but they likely were as reviews from many sites were good. It worked well, but then stopped working after 2 weeks. Not even 20mg of generic tadalafil a day helped at that point. Maybe I built up tolerance & needed a break. Although I’m unsure if it was the pills, the high dose probably bothered my back badly, but it’s ok now.

Later, doctor did a penile doppler scan that shows arteriogenic dysfunction. He believed the cause to be congenital or due to a penis injury, but I don’t recall any. He recommended bimix/trimix. Tried it and wasn’t happy for the usual reasons. Also, the response was unpredictable. Sometimes I’d stay hard longer than I wanted to, which was a problem if I needed to be in public.

My testosterone labs often came back on the high end of low - low end of normal, and my estradiol often came back low. I did some thorough research online and found a TRT specialist with positive reviews. While he wasn’t an ED specialist, the idea was that if my levels increase to a therapeutic level, ED may go away. He honestly told me TRT may be a 6-12month process before it fixed ED, if it does at all. He tried testosterone and hcg shots, plus Anastrozole. The dosage was similar to standard therapy, usually around 28-32cc (56-64mg) testosterone cypionate twice a week, HCG 400-500iu twice a week, 0.3mg anastrozole twice a week, and 7mg tadalafil a day as needed. This combination improved my ED only somewhat. He routinely checked my blood work every 3-6 months. Generally kept my lab values of testosterone near the high end of normal - low end of high. After 1-2 yrs, I realized this protocol wasnt helping enough so I tapered off.

Based on my research, I think I should:
Retry tadalafil one more time, but this time from a source I’m sure is legit as I know generic tadalafil is now available legally in the states.
If tadalafil fails me, consider a penile implant.
If you know of any other better alternatives, or new better treatments that are coming out fairly soon, let me know.



Medical conditions that may be causes/contributors to ED:
----- I know I had high cholesterol since youth, and maybe that led to ED. I recall my primary checked cholesterol around my late teens. He told me it was high for someone young. It may be genetic as my skinny mom has high cholesterol too. I eat better than the average american and exercise, but total cholesterol and LDL results still often come back on the low end of high these days.
----- Moderate pain and occasional involuntary spasms, mostly on the left side of my body only, mainly near core/pelvic regions and head. Possibly from playing alot of basketball in my youth and heavy lift exercises in my 20s. Had 1 MRI that stated mild spinal stenosis (dad has severe spinal stenosis) with disc herniation at L5-S1, and another that only mentioned disc herniation at L5-S1 and no spinal stenosis. Tried PT without much success. Managed thru exercise.
----- As explained earlier, I’ve had testosterone tested multiple times that often came back on the high side of low. Not sure why it’s low but as I once heard my brothers T was low, so it may be genetic. His sex life appears normal.


Medical conditions less likely related:
----- Irregular bowel movements for yrs. Powdery/loose stool 1-2x a week on avg for probably a decade. About 5 yrs ago, doctor did a colonoscopy and found nothing. He believed it to be diet related. Recently, I think I noticed that once I stop eating probiotic foods and oatmeal for awhile, the irregular bowel movements returned, so that’s how I manage.
----- Eczema flareups every few yrs. Sometimes moderate or severe. When severe, I used to resort to steroid creams or prednisone more when I was younger, but now I try my best to manage naturally.

[68CatFan]

It sounds like you've made up your mind that all the non surgical options have been exhausted.

As for your questions..

1. I too have read posts like this from different websites. A lot of those men failed to do their homework and ended up going to lesser experienced surgeons. They lost length, have too many RTE's, etc... Now they need a place to vent.

2. Those two surgeons are probably your best bet. If you are still curious you can just look in everyone's signature block and see what doctor they used.

3. Younger men tend to heal faster and have less health issues. The recovery should be easier (usually).

4. From what I've read revisions are easier for the patient then the original surgery. Infection rates are next to nothing for the top surgeons and no length is lost since you will be getting the same size implant.

5. Everyone is different so that one is hard to answer.

6. Just call Dr. Eid or Dr. Kramer and schedule a consultation. Those gentlemen have pretty much seen it all...

[Waynetho]

4. From what I've read revisions are easier for the patient then the original surgery. Infection rates are next to nothing for the top surgeons and no length is lost since you will be getting the same size implant.

Many of the better surgeons state that upon revision, the patient can usually get a slightly larger implant than the one being removed, due to increase in length of the penis because of the stretching of the penis by the original implant.

[Accutane2020]

Was everything functioning ok before age 19? Did you take any medications around this time when your Ed began ? Medications like roacutane, finasteride and anti depressants have been shown in a minority to cause a venous leak, this happened to me. Personally, I am going to go with the implant - whilst it is the last option - if your considering it because no other methods work for you - as I am - then it is the right option imo.

[Old Guy]

That stinks that you are so young and having issues. Here at FT I have found so much good info. Don't think I've found one negative post yet.
Anyway an implant sure seems to be in your future. I used Viagra, Trimix and Quadmix until each failed. I have high cholesterol too, back pain from a past injury but otherwise in good health. Being younger healing is much faster and I think you'll like having the ability to be ready anytime if you go for the implant. Not to discourage you but this old man took 6 months to feel normal. (my new normal) Although I was using it at 5 weeks.
I will say you have taken the right first step by gathering information and researching. I did not find FT until 5 months after my implant, so I kind of went in blindly. Looks like you have all the right questions to ask, sorry I can't answer any of them except to say I'd do it again if I had to.

[TANGERINE]

Here are my answers:

question #1:
1) I’ve heard a mix of good/bad stories on penile prosthesis. .....The many bad stories ..makes me question if the positive data from other sources I've read is just a complicated form of sales marketing? .....

The published satisfaction rate with implants is around 92%. So 8 percent are not satisfied.

I will paste below my answer regarding the multiple scare stories that are out there and the stories that are also here on frank talk (frankly, if I read about all the troubles men are having here on frank-talk, I would be feeling pretty low, but, based on all those negative stories, I will paste my ansewr from a post written in December 10 2017 by me:

The "scare stories" I think emerge from three subsets of unhappy implantees with the following common characteristics:

1) "Impantees who had unreal expectations"
Men who did not do their homework and just signed on for an implant; then later complain because "they feel the cylinders all the time" of that "the significant other misses the natural process of erecting" or "my erection is a little shorter than before; I had hoped for larger -- like a boob implant"
TO AVOID BEING IN THIS GROUP: read franktalk discussions on complaints regarding the implant. My local urologist told me that "implants have issues" and you need to be ready and willing to address those issues or adapt to those issues

2) "implantees who have faced real surgical complications"
There are complications from implants. Infection is the most problematic one (0.6% to 3% rate depending on your surgeon and your immune system). But there are a number of other complications which lead to the need for more surgery, and possibly, length loss. Surgery does not always go as hoped; you need to realize that you are playing "dick roulette" which means that you really should have exhausted the other options (pills, injections, etc) so that if you lose, then you can console yourself knowing that "your dick was total crap before the operation anyway --at least I tried." In other words, it is best if you go into surgery knowing that you have little to lose since your erections are dead anyway.
TO AVOID BEING IN THIS GROUP: go into surgery healthy (ie, no smoking, weight ok, take all your prescriptions, follow ALL doctor instructions absolutely and to the minute) and find a surgeon with proven track record.

3) "implantees who were sized incorrectly"
This includes undersizing in length (surgeon not aggressive enough), disappointment in girth (surgeon chose implant that wasn't ideal for your particular penis) and oversizing in length which lead to "SST deformity" or weird bowing of the cylinders. Also, placement of the tubing or pump can sometimes be such that it gets in the way of sex.
TO AVOID BEING IN THIS GROUP" carefully vette your surgeon. Choosing a high volume surgeon with a string of satisfied patients is paramount.

Question #2:I’m considering Dr. Francois Eid or Dr. Andrew Kramer, but am open to researching more doctors. Recommendations? Anyone regret getting penile implants, especially from these 2 docs?

Those two doctors will give you a list of happy patients to call (once you have shown that you are a serious surgery candidate) and you will find that many men believe that the implant has been life changing and among the best decisions of their lives. I think it is rare to find an unhappy Eid patient (though I am sure that it happens), and most of the kramer patients seem reasonably happy (though some needed a minor revision of their bulb position)

QUESTION #3
3) I’ve mostly seen data of high satisfaction rates reported by mostly elders, and not much data on how satisfied a young person still is with implants 10-35 yrs later. Are you aware of such data?

I have not seen the data. But the young guys on this site who have been implanted by the master high volume surgeons seem to be ecstatic, they mostly have disappeared from franktalk since they spend all their time chasing, and bedding, super models

4) I read the device need repair/replacement after a couple yrs. After each repair/replacement:
4A. Does the chance of infection increase? If so, how much and how severe can infection be?
4B. Does the penis shrink further? On average, how much?
4C. Is there additional pain? If so, how much?

as per a recent post, half of the implants last at least ten years. But their is an element of luck here . Chance of infection increases with a replacement--yes, this can be managed and you read about infection all the time here on franktalk. With replacement, there is a chance that you get a bigger implant with subsequent surgery. But this is a maybe, because your penis is only whatever size it is, and it is hard to make it longer. The pain of a replacement is LESS than the original surgery

5) How do most patients describe their pain level and how long it took before they can satisfyingly use the implant with none-moderate pain?

I had minor pain which was controlled by naprosyn and tylenol for a week or two. I did not need any narcotics, but surgeons will tell you that you should figure on being on narcotics for a week at least, and maybe two.

6) Are there any other health risks for someone young that I should be aware of?

The biggest risk is that you go to a surgeon who is not a great expert. So, choose your surgeon very carefully. Their was a paper written about patients who tended to be a problem when they got implants, I will quote a line from that paper:

.....Using this model, a high-risk scenario includes one in which a low-volume surgeon performs a complex case in a patient with limited psychological capacity and high expectations. In contrast, a high-volume surgeon performing a routine case in a male with low expectations and abundant psychiatric reserve is more likely to achieve a successful outcome. To further help identify patients who are at high risk for dissatisfaction, a previously published mnemonic is recommended: CURSED Patient (compulsive/obsessive, unrealistic, revision, surgeon shopping, entitled, denial, and psychiatric).

This paper was published for surgeons and can be found at:
http://tau.amegroups.com/article/view/15699/16225
REFERENCE: Surgical patient selection and counseling
Matt Ziegelmann, Tobias S. Köhler, George C. Bailey, Tanner Miest, Manaf Alom, Landon Trost
Department of Urology, Mayo Clinic, Rochester, MN, USA

[MK1965]

Peaceofpain07,
I went to the link you posted and read couple of pages.
Those complaining idiots went for implant while still having healthy erections in hope to gain size of John Holmes and when that did not happen, they blamed implants for all there problems.
If anything is working is worth to pursue it as long as it works. Everything where you get better chance then 50:50 is worth trying.
For us, prostate cancer survivors, we had enough of wet nuddle dick, so any erection is better then no erection andan implant is right choice.
MK

[PeaceofPain07]

Thanks to all for caring to share answers to my questions. Bless you.

While I tried many things, I decided to try one more thing. While I have decent muscle and am at a decent weight for my height (180lbs, 5'11), that is the higher end of a healthy BMI, so I'm going to try to drop to around 155-165lbs within the next 3 months. Mostly by eating less as I have a decent diet and exercise regimen already. That should lower my genetically high cholesterol which is often tied to ED. If it helps my ED, great. If not, then I should be a healthier version of myself more ready to handle the stress of surgery anyways.

Meanwhile, given that implants have been out for decades, I hope I can find data on people who had the implant while young, and what their satisfaction rate was 10-30 yrs later. If there is no data, hopefully I can find some older guys to talk to that had the implant while young. Seems difficult to find.

I've only had 2 severe health struggles in my life that bothered me, severe eczema (solved) and ED (unsolved). For some reason, I feel if I was capable to go thru alot of learning/experimenting to successfully solve eczema, I should likely have what it takes to get thru ED successfully. I made a video awhile ago on how I solved eczema unconventionally and was glad my advice helped people, but this ED is a whole another beast. Knowing there are many people suffering from ED just like eczema, I'm thinking to suck it up and do a video for my ED journey as well. Many can quietly hide and suffer from ED, but not eczema. Both groups need encouragement and proper guidance so they don't fall victim to bad advice.

[PeaceofPain07]

Was everything functioning ok before age 19? Did you take any medications around this time when your Ed began ? Medications like roacutane, finasteride and anti depressants have been shown in a minority to cause a venous leak, this happened to me. Personally, I am going to go with the implant - whilst it is the last option - if your considering it because no other methods work for you - as I am - then it is the right option imo.

Hi Accutate, No, I always research if a drug has sexual side effects before taking it. I haven't been taking any medical drugs for months. As my 2nd post stated, I have tried things like tadalafil and TRT in the past to solve ed without much luck. TRT was never abused and was solely taken to treat low T, which theoretically may treat ED. As it did not in my case, I stopped.

If it's not the genetically high cholesterol, I was young and used to work out very hard. Lifting heavy weights and thinking that pushing myself to the max was healthy and not overtraining. That led to moderate injuries and tightness that still bothers me to this day, which may have hurt erection quality too. Who knows.