Newby here: My recent (30 Jun 20), bad penile implant experience

[anonymous 5]

I don't know if this is where I should post or not. I know 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 2-3 years ago (about 2018); 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, 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. (In retrospect, I think 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.

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.

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!) 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 know 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’ve never read or heard that anywhere else. I wonder if the AMS people would be curious to hear that said about their LGX, and that a practicing urologist at Las Vegas Urology is making such a statement!)

But on that morning after surgery, I was essentially in shock from what he told me about implanting the CX rather than the agreed-upon LGX! I knew from my research that he was telling me something that wasn’t true (and he continued that nonsense in our call on 27 Aug), so I was in disbelief that he was telling me the length of the AMS LGX was insufficient. I didn’t argue with him, though, because I didn’t know what to say.
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 (it took about 3+ weeks to heal). I asked him about caring for my testicles during recovery, and he told me to put ice on my very swollen testicles for an HOUR at a time! I was shocked; he literally told me to put ice on my swollen testicles for an hour at a time! 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. The standard medical advice is usually 15-20 minutes of icing on skin/tissue (with the ice in a towel or a protective layer of some kind, not placing ice directly on the tissue) followed by an equal amount of time without icing; because there’s a risk of freezing/damaging skin via icing, especially thinner tissues such as swollen testicles. I knew his medical ice ‘advice’ was nonstandard (and potentially dangerous), and I was still in shock from his having told me that he didn’t use the LGX.

Then, 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.) Dr. G 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. 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. On the ‘front side’ (the front of the testicles under the penis), it would be easy for me to find the deflation button; because there’s very little tissue between the testicular skin and the front of the block. But, the deflation button is on the backside of the block, within the testicles, and there’s a lot more tissue and ‘matter’ covering the deflation button. I can’t actually feel the deflation button. 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.

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.

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. (This hasn’t improved in over a month of inflating the implant.)

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! Further, his instructions were to press the deflation button for about 7 seconds. But, I’ve found that pressing the back of the block/button for 7 seconds never fully deflates it. My experience (not his advice) is that it takes about twice that amount of time of “pressing the button/block” and then compressing the penis to further deflate it. (Again, I have difficulty even finding the deflation button, which might be why it takes so long to deflate.)

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.

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.

[Lost Sheep]

Welcome to the forum, Bruce20. So sorry to hear of your less-than-optimal outcome. It sounds like "less than optimal" is a vast understatement and my heart goes out to you and your wife.

AMS LGX vs CX. The AMS representative (now, this is only one opinion) told me he prefers the CX because it IS stiffer than the LGX and it does seem to have a marginally better service life. The weave of the cloth that forms the structure of the AMS products is different between the LGX and the CX, so this makes sense to me.

Selecting a surgeon is important. I interviewed two prominent East Coast Surgeons, two local Surgeons and one in Seattle, WA (I live in Anchorage, AK) before another Surgeon figuratively "fell into my lap". I interviewed him and was confident in my choice. This process took 14 months and involved a LOT of research on the internet (Medical Journals, mostly) and in Franktalk.

A second opinion seems to be REALLY in order. Advice you get here is without a clinical exam and is mostly just laypersons giving opinions. A thorough exam is the (in my opinion) only way to really know if your distal tips are misplaced.

Finding and operating the deflate button was problematic for me for several weeks. Scar skin tenderness (unaccustomed to being squished for my entire life), tissue, edema and soreness all prevented easy access.

I will note that the idea of pressing the deflate button for a certain length of time is nonsense, despite ANYTHING AMS has to say. Now, I can only speak authoritatively about my device, but my description has been confirmed by several members here. If I press the button deeply, I feel a click and deflation initiates and continues whether I keep depressing the button or not. If I press the button shallowly, deflation initiates and continues for as long as I keep the button depressed. If I release the button, deflation stops, but I can repeat that start-stop sequence as many times as I like. Of course, in either case, deflation stops when the pressure is equal between the reservoir and the implant tubes.

The AMS documentation says 4 seconds, many men have said 7-8 seconds. Length of time is irrelevant. Depth of depression is what kicks over the valve from inflate mode to deflate mode. The valve is not SUPPOSED to be able to be caught in an in-between state, but it sounds as if you may be achieving that sorry state. Just a guess.

If you find a talented implant-experienced urologist, he MAY be able to fix the uneven glans issue without surgery. I hope so for your sake. It may be a slim chance, but the sooner you ask, the more likely it might be possible.

Do ask your AMS Patient Liaison your questions and be persistent (but polite, you don't want to piss your P.L. off). The P.L. is paid for and there to help you. Also, it is in AMS's interest to ensure satisfaction among its clients. Keep tat door OPEN.

Take notes of everyone you talk to. Thank them by name at the end of EVERY call. Even if they were no help. They DID give you their time and will remember you kindly for future calls. It also informs them that YOU will remember THEM and may put in words of kindness or complaint in the future. Did I mention, TAKE NOTES with date and time.

Good luck

[SteveSW]

This absolutely terrifies me. Faced with choosing a Dr not among the 3 or 4 most famous, this story makes me question moving forward. Sigh. I am so sorry for your trouble Bruce.

[anonymous 5]

Thank you, Lost Sheep, for your reply. It’s clear that you are a mainstay on this forum. Thanks again. I wish I’d found this forum before my surgery! I’ll reply to some of your points and suggestions here; but I’m also going to edit down my intro post and repost it in another section asking for advice. (Sorry about the formatting before and below; I’ll try to figure that out soon.)

[LostSheep] “AMS Patient Liaison” …….. [Bruce] I did not know until I read your post that there is an AMS patient liaison! (Another bit of info that would have been nice to have had my urologist tell me about!)

[LostSheep] “Do ask your AMS Patient Liaison your questions and be persistent (but polite, you don't want to piss your P.L. off). The P.L. is paid for and there to help you. Also, it is in AMS's interest to ensure satisfaction among its clients. Keep that door OPEN.” …… [Bruce] Maybe I’m just to dumb to know, but I’m not sure at this point what to discuss with them; it seems to me that they won’t be able to do anything for me. I guess a phone call to them is in order.

[LostSheep] “AMS LGX vs CX.” …… [Bruce] The point about the LGX was to try to save some of my natural girth; the CX really doesn’t do that for me. Also, Dr. Grigoriev and I talked multiple times about the LGX implantation, and he never said anything about not using it for any reason! That’s what really irritates me about his implanting the CX. (Also, see my extracted email communication [below] with Dr. Grigoriev.)


[LostSheep] “Selecting a surgeon is important.” …… [Bruce] I really wish I’d taken more months to research this! I wish I’d come across FrankTalk before my surgery! (But, Covid made it difficult to get responses from any other reasonably close urologists. Still, in hindsight, I shouldn’t have been in such a rush. That was my major mistake, I think.)


[LostSheep] “A second opinion seems to be REALLY in order. A thorough exam is the (in my opinion) only way to really know if your distal tips are misplaced.” …… [Bruce] (You can feel the ‘ends’ of the tips in my glans. There’s no doubt there’s about ½ inch difference in the position of the tips in my glans. I’ve measured it.)


[LostSheep] “If you find a talented implant-experienced urologist, he MAY be able to fix the uneven glans issue without surgery. I hope so for your sake. It may be a slim chance, but the sooner you ask, the more likely it might be possible.” …… [Bruce] (My main concern now is paying for it. I can pay for a second opinion, but I don’t have thousands or 10’s of thousands of dollars to pay for any more procedures. Also, I’m not even sure how to get a second opinion now, let alone find a “talented, implant-experienced urologist.” I guess I have work to do. I’d be grateful for any suggestions or advice from anyone.)

[LostSheep] “Finding and operating the deflate button was problematic for me for several weeks. Scar skin tenderness (unaccustomed to being squished for my entire life), tissue, edema and soreness all prevented easy access.” …… [Bruce] I guess I have no choice. I MUST get used to it, but it’s irritating that there was no discussion with my urologist about this beforehand, and I still believe he mispositioned it. I don’t think it should be this difficult, along with everything else he did (or didn’t do)!

[LostSheep] “Take notes of everyone you talk to. Thank them by name at the end of EVERY call. Even if they were no help. They DID give you their time and will remember you kindly for future calls. It also informs them that YOU will remember THEM and may put in words of kindness or complaint in the future. Did I mention, TAKE NOTES with date and time.” …… [Bruce] Thanks, good advice. (I do this religiously anyway.) I also did it (and continue to do so) in the leadup to my surgery. I have copies of ‘letters’ that I wrote/emailed his office. For example, here is an extract from 08 Jun (3 weeks before my surgery) of questions and concerns that I sent to him:

EXTRACTED from email that I [Bruce] sent to Dr. G’s office dated 08 Jun 20:
“…
D. After receiving the info page and Labcorp form, I wonder about some things. (I had hoped the information letter would have had more specific info about the process and procedure. The LV Urology website is insufficient for my needs.) I’ve been doing some research; here are my questions and concerns as of now. Please help me answer these. Thank you very much.

1. How many penile implants per month/ year does Dr. Grigoriev usually do?

2. What type of implant will be used? From my research, I personally want the 3-piece inflatable AMS 700 LGX with conceal low profile reservoir. If it’s not this model, why not; and what model is it and why??

3. What specific procedure does Dr. G use to determine the size of the implant and possibly extenders?

4. What procedures are used to minimize penis size reduction: for example, periodic pumping and cycling the device after surgery? (I’ve seen this as one recommendation on other Dr.’s penile implant sites.)

5. What complications are possible with this specific operation? What is done to minimize/treat complications such as penile shortening, curvature, scarring, and other possible adverse events?

6. Is there a pre-operation instruction video? What about using antibacterial soap on the morning of, and for 1-2 days before the operation? Another urological practice’s video said they have patients use antibacterial soap; and they use a fleet enema the night before the operation, after which they fast until the operation.

7. Any post-operative procedures information? The AMS Operating Room Manual that I downloaded discusses maybe needing to “place a closed system drain in the abdomen” and then removing dressing 24 hours later. Should I consider that (or other possible complicating factors) and plan to stay in Vegas for a few days after the operation just for this or other complicating possibilities, even if the initial post-op visit is more than one week after the operation?
…”


You don’t need to reply to that extract; I’m just pointing out to others that I did try to research the procedures and tried to communicate my questions and concerns with him. But, in the end, it didn’t matter. He did want he chose to do, and basically the hell with me and my silly questions and concerns! I think my big mistake was in not consulting with multiple urologists. But, I couldn’t get any responses, except from Las Vegas Urology. I rushed my decision-making, when I should have taken many more months!

Thanks again for your help.

Bruce

[anonymous 5]

This absolutely terrifies me. Faced with choosing a Dr not among the 3 or 4 most famous, this story makes me question moving forward. Sigh. I am so sorry for your trouble Bruce.

Yeah, it can suck; even if you try to do the research, etc.

Based upon my experience: TAKE TIME to talk/consult with many competent penile-implanting urologists! Get your questions/concerns answered to your satisfaction. If the Dr. doesn't do that, go elsewhere.

Research using this forum and other sites; ask experienced 'implantees' for advice and guidance. (I didn't have anyone to help me with this.)

Good luck!

Bruce

[young_and_impotent]

Thanks for sharing your experience. I have had a similar experience but CX was installed because of not enough width for an LGX. I have gone through a lot of posts on FT and I do see a pattern with CX guys not happy with their final size. Especially if not operated by the top 4-5.

[Lost Sheep]

Yes, Bruce, I was particularly diligent about my selection of surgeons. I emailed Dr Kramer and Dr Eid, interviewed a surgeon in Seattle and two in Anchorage (where I live) before interviewing one more in Anchorage with whom I was satisfied.

I took 14 months and, while the delay was irritating, ultimately worth it. The surgeon I found figuratively (and literally) fell into my lap at the last minute and I am happy for the timing, for he appreciated my self-education and the the outcome is good.

[Lost Sheep]

Yes, Bruce, I was particularly diligent about my selection of surgeons. I emailed Dr Kramer and Dr Eid, interviewed a surgeon in Seattle and two in Anchorage (where I live) before interviewing one more in Anchorage with whom I was satisfied.

I took 14 months and, while I was not happy for the delay, the outcome was worth it. The surgeon I found figuratively (and literally) fell into my lap at the last minute and I am happy for the timing, for he appreciated my self-education and the the outcome is good.

[anonymous 5]

Thanks, Lost Sheep, for the info.

Yeah, based on my (and apparently your) experience (s), taking the time to talk with multiple, well-reviewed penile-implant surgeons is ABSOLUTELY CRITICAL to a good outcome! It greatly increases the chances of success.

I really wish I had found FrankTalk and the PHYSICIAN FINDER menu item before I selected my surgeon.

Potential implant patients: Use the Physician Finder menu item to get a list of urologist's to talk to.

(I don't know how FrankTalk comes up with the names to include in the 'Physician Finder'. Maybe someone with knowledge of that process could discuss it for those who are interested.)

Take care,
Bruce

[anonymous 5]

One weakness with the Physician Finder menu item here on FrankTalk is that it limits the geographical search radius around a zip code to only 60 miles. So, when you search for a competent penile-implanting urologist for a specific zip code, if the practice is more than 60 miles from that zip code, no info on available physicians will be returned to the searcher. Since people usually travel some distance to see a provider, setting this limit to 60 miles seems unnecessarily restrictive.

Is there a way to set the distance of the urologist search relative to a specific zip code to a larger geographical radius; e.g., let the user set the distance, or arbitrarily increase the distance from 60 miles to say, 300 miles.

Anybody know?

Thanks,
Bruce