Things seem very wrong, I need a sanity check.

The final frontier. Deciding when, if and how.
zandro
Posts: 55
Joined: Thu Oct 24, 2019 11:35 pm

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

Postby zandro » Thu Oct 31, 2019 4:08 am

Has anyone been able to get in touch with random255? Keep checking this thread hoping for some OK news from him and just has me worried that he's completely MIA
Implanted @ 36 on Oct 8th, '19 - Titan Touch 24cm (XL)
Revision Sept '20 - AMS CX 24cm

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

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

Postby random255 » Mon Nov 11, 2019 8:24 pm

Hey guys!

Okay, update for those who have been asking. Oh, and one person wondered if I had other medical complications. I don't. I am a 38 year-old male with a healthy BMI, no surgery ever prior to this (except tonsils when I was a kid), I use the gym 3 times a week and get regular yearly physicals.

So, on to the current state of things:

My old doctor was set to remove all of the installed devices and let my body heal. I lined up four different second opinions, but the removal surgery was going to be sooner than all but one of those second opinions.

The new doctor was just as appalled at being able to see my tubes as most of you were. He made a point to find me an emergency 3 hour slot in the OR, and I was able to get my first surgery planned with him. He also ordered a CT scan, something the former doctor hadn't requested at all.

The scan happened, then on Oct 30th my surgery happened. The doc was able to remove all of the AMS equipment except for one fluid reservoir.

Last week, he sat me down for a follow-up, a check-up, and to go over the results from the CT scan that took place prior to the surgery in detail. That CT scan told us this:

[*]The reservoir is from the first surgery (I've had two procedures done). I knew it was left in. Now I know why: It is in my left leg. If you're thinking, that's not where it goes, you are correct. I had a bruise from my first surgery so bad I couldn't walk for days. In my left leg, from hip to knee. Now I know why. I was told by the first doctor he couldn't get to it to remove it due to time constraints. He never mentioned it was in the wrong damn body part. Maybe he doesn't even know.

[*]The first doctor never did any tests or even a physical exam before the surgery. As in, he never even saw me naked until I was in the OR. The new doctor did some blood work. I have low testosterone. I probably didn't need the device at all.

[*]The pump and tubing constricted and damaged my urethra. Bad placement. The foley cath in the ER made it worse. A second foley cath was done in the OR later on, so they clearly didn't understand what the issue was. No CT scan was ever taken before that surgery.

[*]You guys know the two things that go along the sides of your penis to inflate? One of them was installed backwards. I think this happened in BOTH surgeries, since my dick has a HUGE bend to the left and I could barely move it back to the center.

[*]Speaking of those inflatable tubes... there are two of them. Only, my scan shows three objects. No idea what that was all about, did they forget to remove it from the first surgery?

That's the update. The new doctor was able to remove the implant, and I have semi-malleable rods installed now. Oh, and the day before Thanksgiving, I get my cath removed. Then, it'll be about six months of rest before another surgery gets scheduled. Which gives me time to start my next big adventure: Finding a good lawyer.

Lost Sheep
Posts: 6142
Joined: Mon Jul 04, 2016 11:16 pm

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

Postby Lost Sheep » Mon Nov 11, 2019 8:56 pm

My girlfriend and I have been worried. Thought you might be in intensive care or worse.

So, how did you find the surgeon who will repair the damage?
Has any surgeon ventured a guess as to why the leg location was used?
Any prognosis on permanent damage to your urethra? or other components of your genitals or urinary systems?

I may have mentioned before: Take notes contemporaneously on EVERY contact you have about this, with names, numbers and every detail you can take. Check with a lawyer about the status of any recordings you might make (both sides of a conversations or only your side of a conversation may have different strictures). admissibility, illegality, legality for record-keeping only.

Too bad about the testosterone. Not testing that as a first lab test (along with other hormones and enzymes and a FULL clinical examination) is pure incompetence.

Who has the removed components? Are there videos of the operations? Copies of the operating reports? Get names of everyone who was in the operating theater - they are witnesses.

Above all, keep your aplomb and Happy Thanksgiving. It's all forward progress from here.
Lost Sheep
AMS LGX 18+3 Nov 6, 2017
Prostate Cancer 2023
READ OLD THREADS-ask better questions -better understand answers
Be part of your medical team
Document pre-op size-photos and written records
Pre-op VED therapy helps. Post-op is another matter

Skier123
Posts: 183
Joined: Tue Aug 29, 2017 8:10 pm

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

Postby Skier123 » Mon Nov 11, 2019 9:04 pm

Wow.
54 yr old single guy
Severe ED for over10 years; diagnosed with peyrones and venous leak
Implanted 12/23/19, Dr. Laurence Levine
Coloplast Titan w/ Genesis pump

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

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

Postby random255 » Mon Nov 11, 2019 9:19 pm

Thanks, and sorry for the radio silence. To be honest, even with the good news from the new doctor and the successful procedure, the thought of writing out what I've experienced has been traumatic.

I found the new doc through just getting second opinions at major hospitals but taking the first one who was able to offer me a reasonable time frame (for example, one of my second opinions was not scheduled to happen until tomorrow). So in part, it was luck. But I knew after meeting that this man had the capability and the team in place to do the work. Plus he accosted me for my failure to stop this nonsense before it got as far as it did. So I knew he was pulling no punches.

My urethra is expected to heal. Right now, I still have a superpubic tube. The day before Thanksgiving, he's going to remove the cath, and do a CT scan while I pee, so visually confirm that this is healed. I should be okay, but I've been told not to count chickens before they hatch.

The new team at Lahey hospital removed the components. I don't know if there is video, but I've been taking my own pics as things have progressed. I have a trove of evidence to support the facts, so I'm covered there.

oldbeek
Posts: 2460
Joined: Sun Sep 10, 2017 1:46 pm
Location: Los Angeles area

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

Postby oldbeek » Mon Nov 11, 2019 9:25 pm

This subject needs to be saved to warn others of how bad an unexperienced doctor can screw things up. BACKWARDS???
82, good health, RP 7-2017, all nerves taken , PSA 0.05, 4-18,, .07 1/19,.05 4/19, .03 11-21, .04 11-23, implanted 4-1-18, Infra-pubic, AMS lgx 15 cm with 5cm rte. Implant at USC Keck. Dr Boyd and Dr Loh Doyle 6.5 x 5, 800 AUS 7-21-20

medhatg
Posts: 300
Joined: Thu Sep 14, 2017 10:34 pm

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

Postby medhatg » Mon Nov 11, 2019 11:40 pm

This is horrible. No one deserves to go through that.
Can you share the names of the doctors? ED is terrible enough, and it is more terrible to go through that.

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

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

Postby random255 » Tue Nov 12, 2019 12:01 am

I'm not sure if I can share the name of the doctor or not, I fully plan on suing. If anyone in Boston reads this and they're getting the surgery done, shoot me a PM.

zandro
Posts: 55
Joined: Thu Oct 24, 2019 11:35 pm

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

Postby zandro » Tue Nov 12, 2019 10:50 pm

random255 wrote:I'm not sure if I can share the name of the doctor or not, I fully plan on suing. If anyone in Boston reads this and they're getting the surgery done, shoot me a PM.


Glad to hear you're doing better, we were all worried, what are the next steps for you? I'm assuming currently no implant but planned /schedule for after the urethra heals? Just asking out of interest and sympathy for the spot you're in

Wishing you the speediest recovery and success in this journey
Last edited by zandro on Thu Mar 18, 2021 8:06 pm, edited 1 time in total.
Implanted @ 36 on Oct 8th, '19 - Titan Touch 24cm (XL)
Revision Sept '20 - AMS CX 24cm

LeRoastBeef
Posts: 678
Joined: Mon Sep 17, 2018 11:09 am

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

Postby LeRoastBeef » Wed Nov 13, 2019 9:24 am

What a sad story!
Kramer is great, he'll sort you out. He will have dealt with worse I'm sure.
Stay strong, pal!
Implanted with AMS 700 lgx, 2021.
30's
UK


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