Re: Newby here: My recent (30 Jun 20), bad penile implant experience
Posted: Wed Nov 18, 2020 5:06 pm
Here's my update 4.5 months after surgery:
He DESTROYED my life!
He DESTROYED my life!
support group helping men deal with Erectile Dysfunction.
https://www.franktalk.org/phpBB3/
Bruce20 wrote:Some questions someone might help me with: Has anyone else dealt with the kind of things I’ve experienced? (If so, do you have any lessons/helpful info you can provide?)
1. different implant model used than was agreed to by both the physician and patient (because the LGX is supposedly “unstable” for 7+ inch penis’s);
2. block turned around so the deflation button is within the testicles, thus hard to find;
3. tips of inflation tubes misplaced unevenly in the head (glans) of the penis;
4. irritated, burning sensation in the glans of the penis when the implant is inflated
5. deflation bulb and implant tubing very noticeable more than 2 months after the operation
6. waiting so long (5 weeks) to start cycling
7. Dr.’s advice to ice your swollen and bruised testicles for an hour at a time
8. No post-op aftercare instructions or materials provided
9. Loss of about 1.5 inches girth as well as 1.25 - 1.5 inches length after relatively recently (before the surgery) being able to get a full erection
Does anyone have some constructive advice on things like pumping, increasing size, second opinions, possible revision (cost, how to pay, size impact), etc.
Thanks for taking the time to read this and helping me if you can.
Bruce20 wrote: This is a long read; but I've had a bad penile implant experience recently, and I wanted to include sufficient details.
I am 65 yo, divorced/single, type 2 diabetes for 17 years, former smoker, developed ED (EDIT) 5-6 years ago (about 2014 or so, my memory plays tricks at times); pills worked for a while. Could get a full erection (7.5 inches long by 6.5 inches girth) as late as Dec ’19- Jan ’20; so, there should have been limited-to-no tissue scarring occur in my penis in the few months prior to my implant. Starting around Feb 2020, my erections became more difficult to achieve. I didn’t want injections (don’t like needles).
I contacted a urologist for info in Apr ’20; was told Medicare would pay for an implant, so I looked for a urologist willing to do it during Covid. Las Vegas Urology, a large practice with many Las Vegas-area locations and many practicing urologists, was the only website that returned my call. (I did contact/try to contact multiple 'sites' in the Western US. Covid restrictions/difficulties are neither responsible nor an excuse for any issues related to my operation and recovery, though!)
I was put in contact with Dr. Grigoriev (hereinafter small 'dr' because I have zero respect for him as an actual medical doctor), who said his next opening for surgery was 30 Jun; so I said okay, hoping to have my problem fixed while preserving my size by getting it done before any significant tissue damage could occur.
I know now that it was a terrible mistake to not talk with more urologists, even though I couldn’t actually contact anymore during that time. I researched the procedures (Youtube and other Urologist’s sites) as well as dr. Grigoriev, and it seemed alright. I did write up some questions and concerns and sent it to his office: but in the end, I decided to have him do it. (EDIT: He never really answered the questions anyway. He danced around it with comments like "You don't have to worry about that." What a fool I was to not demand (politely) specific answers!)
His office uses AMS implants. After some research, I talked to him 2-3 times via online video chat and told him I wanted the AMS LGX. (I told him about my recent size.) He agreed with me and said the LGX is what he would use anyway. On 29 Jun, the day before surgery, I met with him in person at his office. We talked again about the size of my penis and the AMS LGX specifically, and he again said the LGX is what he would implant in me. He NEVER mentioned any concerns about the LGX, or even discussed any other possibilities.
Surgery was in Mountain View Hospital in Vegas on 30 Jun, under general anesthesia; overnight in the hospital, discharged late afternoon the day after surgery. (Hospital has billed Medicare about $137,000!) EDIT: There were no complications.
When dr. Grigoriev made his morning rounds the day after surgery, I asked him about the implant. He said he didn‘t use the AMS LGX, supposedly because my penis was too long. Instead, he said he used the AMS CX due to the length constraints. I believe that’s hogwash, because the LGX has 18 and 21 cm lengths and can have a 1.5cm rear tip extender placed with it. Supposedly, he used an AMS CX with 21 cm and a 1.0 cm rear tip extender.
To me, there’s no reason he couldn’t have properly sized an AMS LGX for my implant! (I talked with him on a phone call on 27 Aug, and dr. Grigoriev told me that he used the CX rather than the AMS LGX because the ‘LGX was less stable for a longer penis’ (paraphrased). I was essentially in shock from what he told me about implanting the CX rather than the agreed-upon LGX!
EDIT: 11-23-20: I believe he purposely misled me because Nevada had closed 'elective surgeries' due to Covid since Mar '20, and he wanted to make some money. If he'd told me he wouldn't use the LGX that I wanted, I might have waited or gone elsewhere.
Next, on that same morning after surgery, he gave me suspect medical advice and then compounded that with no post-op care advice at all!
First, my testicles were VERY swollen and VERY bruised (dark black for the about 3-4 weeks to heal). [Edit: I remember that he looked shocked when he saw my testicles that morning.] I asked him about caring for my testicles during recovery, and he told me to put ice on my testicles for an HOUR at a time! I was shocked; that’s antithetical to any other medical advice about icing skin tissue that I’ve ever heard or read; and at 65 years old, I’ve used icing many, many times.
Second, he didn’t provide me with any discharge instructions specific to my operation and recovery aftercare– nothing! No written info, no website reference - nothing. (Such instructions are standard with other urologists, as evidenced by the info I was able to get easily from other urologist’s web sites. But, not on the LVU website; it was subpar, at best.)
dr. Grigoriev didn’t provide info on caring for my penis and testicles during a healing phase; nothing about cleaning my genitals, how soon before I could shower, how to shower/clean; no information about how to tape up my penis and how to support my testicles (or even that I should be providing support for my testicles at all). Along with no info/instructions on how to tape my penis up, I was discharged with no provision for bandages or anything to care for my genitalia. No post-operative information and no self-care materials like tape or gauze! The only thing he gave me were two prescriptions: one for 6 days of antibiotics, and one for 5 days of pain pills.
As for the operation itself, I think there were at least two mistakes that dr. Grigoriev made.
1. He misplaced both the tubes and the deflation block! He positioned the block with the deflation button on the backside of the block (relative to the front of the testicles under the penis), making it difficult to find/activate tactilely. I CAN’T feel the deflation button. Instead, I must guess where it is. I usually can’t ‘find’ it for many minutes, which is very frustrating. I just keep trying to press where I think the center of the back of the block is, hoping I press the deflation button. It’s also painful to keep pressing around through the testicles onto the back of the block. EDIT: After 4.5 months, I've come to terms with the block placement. I have no choice. It hasn't improved, though.
2. The next problem with Dr. Grigoriev’s operation on me is that the tubes are unevenly placed in the glans (head of penis). The right tube extends about one-half inch further into the glans than the left tube does on the left side of the glans. As a result, the glans are somewhat misshapen and ‘curve’ slightly to the left (which they didn’t do before the implant). Also, the left side of the glans is less supported than the right side, and it seems kind of ‘floppy’ to me. It is concerning to me; I’m worried that damage might occur to the glans. Plus, it looks abnormal to me, thus increasing my negative self-consciousness about it. EDIT 11-23-20: There's been no improvement with the glans.
Also, the glans of my penis have an irritated, burning sensation to them when I inflate the tubes, which absolutely kills any sexual desire. This irritating sensation lasts as long as my penis is inflated; so I don’t even want to inflate it, let alone have sexual contact. (Edit: This hasn’t improved at nearly 5 months after the operation.)
Next, per his specific instructions, I didn’t start cycling until he told me to do so 5 weeks after surgery, which is very late to start cycling from what I’ve read on many other sites related to penis implants. Waiting so long to start cycling is associated with worse outcomes in penis size due to the formation of scar tissue. From my research, any urologist who does implants should be very aware of this!
In the past month that I’ve been cycling the implant (about 60 times or so in total), the tubes have partially deflated on their own (without my pressing the deflation button or handling the testicles or penis at all) at least 5 times that I absolutely took note of. (I think it might have happened a few of more times early on, but I just didn’t realize it then.) Anyway, each time it happened, I wasn’t aware that it was occurring; I only saw later that it clearly was somewhat deflated from the length I had inflated it to at the outset; there was anywhere from about a one-half to one inch of deflation. For example, one time I inflated my implant; then I laid on my back to rest. About an hour later, I awoke and noted that it was significantly deflated, by about 1 inch. The deflation block had not been touched; I had not moved from lying on my back for that hour. It deflated on its’ own. EDIT: I think this may have resolved itself mostly; it's only happened minimally a couple of time in the past 2 months.
It also partially “inflates” after deflating it. I think that’s just due to the amount of ‘tubing’ in the penis and testicles; it seems to ‘stretch’ my penis. (I think there’s now ‘excess’ tubing due to the Dr. not having me start cycling the implant until 5 weeks after the operation, which I think allowed scar tissue to form. So now, my erect penis is about 1.25 to 1.5 inches less length than before the implant, but the Dr. put about 22cm of tube in me, which now seems too much for the length of my apparently scar-tissue shortened penis. Even when I inflate the implant as much as possible, there’s excess tubing apparent at the junction of the testicles and bottom of my penis.
The pump/bulb also causes a bulge in my lower right testicle, and with the pump ‘bulge’ and the obvious ‘excess’ tubing at the penis/scrotum junction, you can clearly tell that there’s an implant. It absolutely does not look normal, which makes me negatively self-conscious about it.
Frankly, I’m angry (and depressed). I think Dr. Grigoriev misled me about the LGX vs CX, and he’s given me bad info throughout; e.g., icing my testicles for an hour at a time, no aftercare instructions or materials, not cycling for 5 weeks. He misplaced the block making it difficult and painful to deflate, and he placed the tubes in my penis unevenly in my glans. Also, the erect tubes erratically deflate on their own, and the apparently excess tubing ‘extends/inflates’ my penis. When I pump up the implant, the glans have an irritated, burning sensation internally; so I don’t even want to get an erection, let alone have sex! The implant itself is very obvious, and it doesn’t look normal.
Dr. Grigoriev first told me over two weeks ago that he wanted to set up a consultation about these issues for me with another urologist at Las Vegas Urology. So, two weeks later and I’m still waiting on a call from one of his colleagues, although I don’t see any good coming from it. I don’t think they’ll spend a penny making any corrections. (I personally think it’s just CYA on his part.) From my perspective, travelling nearly 1,000 miles round-trip to Las Vegas and back would just waste my time and money; it would cause me unneeded back pain due to my scoliosis and stenosis, and it would increase the chances of being exposed to Covid-19.
My general advice to future implant recipients:
1. Do NOT have penoscrotal implant surgery. It’s very invasive; it takes nearly a month to heal; it’s a more difficult recovery (swollen, bruised testicles for weeks); and thus it takes longer to begin cycling the implant, which means likely worse outcomes in size.
2. Make sure the urologist uses an injection procedure to erect the penis before surgery to determine the proper implant size. It’s nonsense for a urologist to guess at this! (Dr. Grigoriev did not erect the penis before the surgical procedure.)
My specific advice to those considering penile implant surgery: Do NOT make the mistake I made to have Dr. Grigoriev do it! I absolutely regret it. Dr. Grigoriev’s area of expertise is female urology. Maybe he’s good at that; but based on my own experience with him, he should not be doing penile implants.
(My specific advice to Dr. Grigoriev and Las Vegas Urology: First, do no harm.)
Some questions someone might help me with: Has anyone else dealt with the kind of things I’ve experienced? (If so, do you have any lessons/helpful info you can provide?)
1. different implant model used than was agreed to by both the physician and patient (because the LGX is supposedly “unstable” for 7+ inch penis’s);
2. block turned around so the deflation button is within the testicles, thus hard to find;
3. tips of inflation tubes misplaced unevenly in the head (glans) of the penis;
4. irritated, burning sensation in the glans of the penis when the implant is inflated
5. deflation bulb and implant tubing very noticeable more than 2 months after the operation
6. waiting so long (5 weeks) to start cycling
7. Dr.’s advice to ice your swollen and bruised testicles for an hour at a time
8. No post-op aftercare instructions or materials provided
9. Loss of about 1.5 inches girth as well as 1.25 - 1.5 inches length after relatively recently (before the surgery) being able to get a full erection
10. Does anyone have some constructive advice on things like pumping, increasing size, second opinions, possible revision (cost, how to pay, size impact), etc.
Thanks for taking the time to read this and helping me if you can.