Things seem very wrong, I need a sanity check.

The final frontier. Deciding when, if and how.

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random255
Posts: 12
Joined: Fri Sep 27, 2019 11:59 pm

Things seem very wrong, I need a sanity check.

Postby random255 » Sat Sep 28, 2019 11:17 am

Hi guys, I really need a sanity check here. Things seem way wrong and I'm about to seek a second opinion, but since it's the weekend and I don't know how long it'll take to set something up, I'd love to tell you about my journey so far and get some feedback.

About me: I'm 38, in good shape, 6ft tall, 168-178 pounds (depending on what holiday we're at lol), and life long sufferer of ED.

Early this year, I decided to get an implant. I went to one appointment, armed with medical records, knowledge, and determination. The surgery was immediately scheduled and performed sometime around June. The doctor never actually saw me naked until the day of the procedure, so I'm not sure how these devices get selected and stuff. Recovery was a giant pain, because I had a bruise on my left leg going fro waistline to knee. My overnight stay in the hospital became two overnight stays, before I was able to walk.

My follow-up appointment was supposed to be a month after that, but got postponed because the dr had scheduling conflicts. I tried hard to not have my appointment pushed back, but they couldn't do anything about it. I followed advice on here and kept to a general timeline of trying things out, but wasn't really able to inflate the pump much. I figured I just needed a guided tour. My appointment date finally came, and the doctor said the pump wasn't working properly (It's an AMS 700). It wouldn't fully inflate. Also, the top stitch on my testicles never really sealed up, and that was starting to open a bit. A second surgery was scheduled for September.

Before that day came around, the stitching rip got worse. I could see the tube that moves fluid from reservoir->pump->device. Like, literally see it, because the delivery tube came outside of my body, carried on for an inch or so, then went back inside my body. My penis also bent sharply to the left, as the device on the right side of my penis dislodged and wasn't attached to anything. and with the left side still anchored properly the whole thing bent left.

I was anxious for the second surgery as you can imagine. The Dr planned to remove the entire implant and start over. That surgery just happened, around three weeks ago. He said the operation was a major success this time around, and that everything should be much better. I was ecstatic! That feeling lasted two full days. Then I went to the ER.

My testicles were bigger than my fist. I mean, seriously, not kidding. And when I peed, I would only get so much out. Then, I noticed, pee would come out of my stitches. My balls were huge because they were filled with urine. The ER put a catheter in, and I had to keep that in place for a week. It was painful at times, I woke up three different mornings screaming in pain. One more trip to the ER for pain related to that. Then finally, to the OR for the doctor to figure out what happened.

The OR trip was confusing, because I didn't realize it was going to be surgery. When I go there, they asked if I had someone to drive me home, and I said I was taking an Uber. Wrong answer, you can't take Uber home after a surgery they said. But then, they talked and said it was fine because it was being done with a local not a general anesthetic. Only, the anesthesiologist showed up, the people in the OR had never seen this done with a local, it seemed to me this might have been an audible they called since I wasn't prepared for a general. Regardless, he took the cath out, put a camera up to see what was happening, then put a smaller cath back in. I begged him not to do another cath, he said the alternative is they can pull the device right now.

I'm told the balls filled with urine because I have urethra damage, and the cath will give the urethra time to heal. Only thing is, I can't find much evidence online that the urethra heals on its own, my searches seem to show that most damage needs surgery to fix. But I'm no doctor so I have no idea. Meanwhile I have a cath in for three more weeks until my next appointment, where I'm worried that nothing will have changed. Worse, this cath is smaller (which is supposed to be for comfort), but for whatever reason this one leaks urine around the edge of the tube at the tip of my penis, which means I'm probably also still leaking urine elsewhere into my body.

Oh, and he says the flesh around my dick isn't thick and so there may always be a problem with the cylendars, something he never told me before (and since he hadn't seen me naked before the surgery, and since I was already under general at the time, there was no giving me that info, it was just mentioned to me for the first time in that last appointment.

Meanwhile, it has been MONTHS AND MONTHS since I've been able to have normal healthy sexual relations, it's going to be at least a total of a month with a catheter. There's other little details not worth mentioning but they add up to additional unpleasantness. I like this doctor, I really do. He's friendly, personable. I have little confidence in the future, immediate or otherwise.

Could someone offer me a sanity check? Is this normal? Obviously not every procedure is a success right off the bat. Anyone know about the urethra's ability to heal? Did anyone else get a cath for weeks at home? I'd also settle for words of encouragement because damn, this is depressing.

Thanks for reading, I know this was long.

radioradio
Posts: 1012
Joined: Tue Aug 09, 2016 2:44 pm
Location: Philly Burbs

Re: Things seem very wrong, I need a sanity check.

Postby radioradio » Sat Sep 28, 2019 12:04 pm

Random,

I am so sorry to hear about your circumstances.

No, none of this is normal. I HIGHLY recommend you make an appointment with one of the proven masters of this procedure - Kramer, Eid, the guy on the west coast whose name I can’t remember right now, etc.

It certainly sounds like your doc might be in over his head.

I hated catheters. When I had my prostatectomy I asked my surgeon to use a Supra-pubic catheter (a tube directly through the bladder wall exiting the body about an inch above the base of my penis). He agreed, and I avoided the typical one week with a normal catheter. Huge difference. In your case, with apparent damage to the urethra, it may not be an option.

Wish you the best.

Bob
Born '52. Married '79. RALP 3/1/17. ED 50+% prior to surgery even w/ meds. VED, Injections, ineffective. Considering implant even before PCa diagnosis. Dr. Kramer 8/2/17. LGX 21cm+0.5 RTE. Kramer replaced/repositioned pump 12/13/17. Willing to Show/Tell.

random255
Posts: 12
Joined: Fri Sep 27, 2019 11:59 pm

Re: Things seem very wrong, I need a sanity check.

Postby random255 » Sat Sep 28, 2019 12:08 pm

I won't be able to fly to the west coast for anything. I'm around the Boston area, I could travel some distance from here up and down the coast, maybe as far down as NYC.

Biker60
Posts: 267
Joined: Sat Aug 03, 2019 12:06 am
Location: Philadelphia Pa

Re: Things seem very wrong, I need a sanity check.

Postby Biker60 » Sat Sep 28, 2019 12:23 pm

random255 wrote:Hi guys, I really need a sanity check here. Things seem way wrong and I'm about to seek a second opinion, but since it's the weekend and I don't know how long it'll take to set something up, I'd love to tell you about my journey so far and get some feedback.

About me: I'm 38, in good shape, 6ft tall, 168-178 pounds (depending on what holiday we're at lol), and life long sufferer of ED.

Early this year, I decided to get an implant. I went to one appointment, armed with medical records, knowledge, and determination. The surgery was immediately scheduled and performed sometime around June. The doctor never actually saw me naked until the day of the procedure, so I'm not sure how these devices get selected and stuff. Recovery was a giant pain, because I had a bruise on my left leg going fro waistline to knee. My overnight stay in the hospital became two overnight stays, before I was able to walk.

My follow-up appointment was supposed to be a month after that, but got postponed because the dr had scheduling conflicts. I tried hard to not have my appointment pushed back, but they couldn't do anything about it. I followed advice on here and kept to a general timeline of trying things out, but wasn't really able to inflate the pump much. I figured I just needed a guided tour. My appointment date finally came, and the doctor said the pump wasn't working properly (It's an AMS 700). It wouldn't fully inflate. Also, the top stitch on my testicles never really sealed up, and that was starting to open a bit. A second surgery was scheduled for September.

Before that day came around, the stitching rip got worse. I could see the tube that moves fluid from reservoir->pump->device. Like, literally see it, because the delivery tube came outside of my body, carried on for an inch or so, then went back inside my body. My penis also bent sharply to the left, as the device on the right side of my penis dislodged and wasn't attached to anything. and with the left side still anchored properly the whole thing bent left.

I was anxious for the second surgery as you can imagine. The Dr planned to remove the entire implant and start over. That surgery just happened, around three weeks ago. He said the operation was a major success this time around, and that everything should be much better. I was ecstatic! That feeling lasted two full days. Then I went to the ER.

My testicles were bigger than my fist. I mean, seriously, not kidding. And when I peed, I would only get so much out. Then, I noticed, pee would come out of my stitches. My balls were huge because they were filled with urine. The ER put a catheter in, and I had to keep that in place for a week. It was painful at times, I woke up three different mornings screaming in pain. One more trip to the ER for pain related to that. Then finally, to the OR for the doctor to figure out what happened.

The OR trip was confusing, because I didn't realize it was going to be surgery. When I go there, they asked if I had someone to drive me home, and I said I was taking an Uber. Wrong answer, you can't take Uber home after a surgery they said. But then, they talked and said it was fine because it was being done with a local not a general anesthetic. Only, the anesthesiologist showed up, the people in the OR had never seen this done with a local, it seemed to me this might have been an audible they called since I wasn't prepared for a general. Regardless, he took the cath out, put a camera up to see what was happening, then put a smaller cath back in. I begged him not to do another cath, he said the alternative is they can pull the device right now.

I'm told the balls filled with urine because I have urethra damage, and the cath will give the urethra time to heal. Only thing is, I can't find much evidence online that the urethra heals on its own, my searches seem to show that most damage needs surgery to fix. But I'm no doctor so I have no idea. Meanwhile I have a cath in for three more weeks until my next appointment, where I'm worried that nothing will have changed. Worse, this cath is smaller (which is supposed to be for comfort), but for whatever reason this one leaks urine around the edge of the tube at the tip of my penis, which means I'm probably also still leaking urine elsewhere into my body.

Oh, and he says the flesh around my dick isn't thick and so there may always be a problem with the cylendars, something he never told me before (and since he hadn't seen me naked before the surgery, and since I was already under general at the time, there was no giving me that info, it was just mentioned to me for the first time in that last appointment.

Meanwhile, it has been MONTHS AND MONTHS since I've been able to have normal healthy sexual relations, it's going to be at least a total of a month with a catheter. There's other little details not worth mentioning but they add up to additional unpleasantness. I like this doctor, I really do. He's friendly, personable. I have little confidence in the future, immediate or otherwise.

Could someone offer me a sanity check? Is this normal? Obviously not every procedure is a success right off the bat. Anyone know about the urethra's ability to heal? Did anyone else get a cath for weeks at home? I'd also settle for words of encouragement because damn, this is depressing.

Thanks for reading, I know this was long.


The lack of concern for your urethra is terrifying. I do not think you will heal without surgery. Urine leaking around and below will damage tissue that is not supposed to be exposed to urine. If your in BOSTON. I think you need to see a urologist who specializes in Trauma. You need to get this fixed. The urethra is everything. Do you have a Family Dr to advocate for you? If not I would contact a urologist who is associated with the bigger hospitals in Boston. Just the thought that pushed back your follow up is infuriating. Whatever you do, your repair needs to be done ASAP to protect the urethra. I don’t know if I would travel to see the implant surgeons far from home. You might need more care then a night in a hotel room. Also, one of those implant surgeons does not take insurance. Get yourself seen by a uro asap.

random255
Posts: 12
Joined: Fri Sep 27, 2019 11:59 pm

Re: Things seem very wrong, I need a sanity check.

Postby random255 » Sat Sep 28, 2019 12:53 pm

Well I went from moderately annoyed to reasonably terrified. I don't know what I can do on a Saturday, I'm leaving some appointment requests. I really don't know how to pick a good doctor, I thought I'd selected an implant expert for this whole thing and clearly something isn't right.

WhiteCane
Posts: 273
Joined: Wed Sep 11, 2019 8:10 pm

Re: Things seem very wrong, I need a sanity check.

Postby WhiteCane » Sat Sep 28, 2019 1:44 pm

No, this is not normal but with the right doctor It can easily be fixed… Get to A urologist in a local universities hospital pronto . Stay calm, you’ve got this thing! “
Implanted October 2019 Dr. Kramer lgx 18 cm +2 rear tips. Preop at 6.75 post op 5.25... awaiting revision… Implanted for possibility of having our first child.

mikestap
Posts: 118
Joined: Sat Sep 01, 2012 12:19 pm
Location: Atlanta, GA

Re: Things seem very wrong, I need a sanity check.

Postby mikestap » Sat Sep 28, 2019 2:34 pm

After landing with a competent doc, I’d be dialing 1-800-LAW-YERS
60 Years. RALP 2013. Received Titan implant on Dec 20, 2017. Results can be viewed at viewtopic.php?f=6&t=8524&start=540 and viewtopic.php?f=6&t=8524&start=580
22 cm No RTE

oldbeek
Posts: 1413
Joined: Sun Sep 10, 2017 1:46 pm
Location: Los Angeles area

Re: Things seem very wrong, I need a sanity check.

Postby oldbeek » Sat Sep 28, 2019 3:43 pm

How in hell did you end up with this hack surgeon? Don't let him touch you again. Boston to NYC is not that far. Get yourself over to a University Hospital for the weekend. Sorry for your disaster. This is one of the worst stories I have ever heard on this board.
78, good health, RP 7-2017, all nerves taken , PSA 0.05, 4-18,, .08 11/18,.07 1/19,.05 4/19, .06 2/20 Pain with trimix, implant 4-18, Infra-pubic, AMS lgx 15 cm with 5cm rte. Implant at USC Keck. Dr Boyd and Dr Loh Doyle 6 x 4.5, 800 AUS 7-21-20

tomas1
Posts: 1384
Joined: Tue Jul 23, 2013 5:12 pm
Location: Tempe, AZ

Re: Things seem very wrong, I need a sanity check.

Postby tomas1 » Sat Sep 28, 2019 6:30 pm

Good advice oldbeek.
I don't want to say what I think about the hack who fucked this up.
There, I finally said a bad word
81 years
Inject testosterone weekly.
Got implant on 1/22/19 by Dr Avila.
Scrotal, horizontal incision just over 1"
18cm AMS 700 CX, 3.5cm RTE 100cc reservoir
Diagnosed with Gleason 6 prostate cancer. Monitoring it for now.

random255
Posts: 12
Joined: Fri Sep 27, 2019 11:59 pm

Re: Things seem very wrong, I need a sanity check.

Postby random255 » Sat Sep 28, 2019 7:52 pm

Yeah, I don't think I'll even have him take the cath out, I'll try to find someone new on Monday. Scary thing is, I found him by doing research on who in Boston would be good. He was at one hospital and did most of their implants, and if you search his name you can see he's taken money from one of the two implant companies (forget which one) for paid speaking engagements. Figured that'd be good. I also looked over this forum at the time but couldn't find anything that referenced Boston doctors.

I'm so done with this right now, I haven't been able to have meaningful intercourse since June.


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