Losing Hope | 4wk post op | Need advice please!

The final frontier. Deciding when, if and how.

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Pamen116
Posts: 17
Joined: Tue Dec 03, 2019 7:33 pm

Losing Hope | 4wk post op | Need advice please!

Postby Pamen116 » Mon Feb 24, 2020 2:43 pm

Hello all-

I’m in need of help. Right now I’m 4 weeks post op and cannot tell if my left cylinder simply has a kink due to fibrosis scar tissue or if I’m already experiencing early signs of a cylinder aneurysm.

Before everyone tells me to follow up with my URO, I have, but at this point I’m on the suspicious end of noticing a trend from surgeons not acknowledging their mistakes (based off my experience and my extensive research through this forum).

Kramer advised he saw absolutely nothing wrong and didn’t know what the bump was on my left cylinder base. I went to Dr Kansas (who is Kramer’s friend) out in Austin only to be told all looks fine even though it was noticeable he was concerned and then stated let’s just do a follow up.

I get it, so much will change within the 6 month and 2 year range, my concern is that I’m not getting honest feedback from surgeons. I was undersized the first surgery by Dr Sammy Vick in SA TX and he would not acknowledge it and got defensive when I questioned my floppy glands.

I really just need some raw, honest feedback from someone who maybe has had this similar issue with the Titan Coloplast. I’ll attach a photo as well-

Right now I can’t differentiate if this is something that will get better, if it’s just base swelling (doc said I was a bleeder and had a lot of arteries), a kink that will work itself out breaking through the scar tissue from my previous injury or if this in fact is a cylinder aneurysm.

This is my 3rd surgery in the last 2 years and do not look forward to a possible revision, I’m in a very bad place mentally- I’m extremely depressed and have no motivation right now.

Note that the base problem im having literally “pokes me”- sometimes from the top sometimes from the side- is it possible that the cylinder is out of the corpora? I don’t feel much pain other than when I cycle right where this bump is. When 80% inflated the poke goes away but there still remains a noticeable lump there.

All advice is appreciated-
Attachments
04626248-5A5B-464F-9C47-5EF98857C3B4.jpeg
Notice the bump at the base
04626248-5A5B-464F-9C47-5EF98857C3B4.jpeg (253.06 KiB) Viewed 474 times
Last edited by Pamen116 on Mon Feb 24, 2020 3:59 pm, edited 1 time in total.
26 yrs old| ED since 19 | Oct 23,19 installed IPP by Dr Sammy Vick in San Antonio TX with Titan Coloplast OTR (18cm, 2RTE) | Revision by Dr Kramer in Baltimore MD on Jan 28, 20 with Titan Coloplast (22cm 1RTE)

Waynetho
Posts: 779
Joined: Wed Nov 27, 2019 11:22 pm
Location: Addison, TX

Re: Losing Hope | 4wk post op | Possible aneurysm?

Postby Waynetho » Mon Feb 24, 2020 3:31 pm

If you had a cylinder that wasn't staying in the corpus, it would likely fall out into the scrotum. I don't think this is the case. From your photo, I don't see anything too out of the ordinary. The enlarged base might be tubing as it is in my case. It's just hard to say. Others here may have other suggestions or assurances for you.
59 yo, married 38 yrs. Urolift (x4) 8/12/19. AMS 700CX 15cm (no RTE) penoscrotal 10/28/19 Dr. Mark Allen, Frisco, TX. PD 1995/ED 2011. Cialis helped but hinged. (1995)L:6/G:5.5+, (2019)Pre-op L:5/G:4.5, (2/2020)L:6.0/G:5.0

Tsanchez12369
Posts: 224
Joined: Fri Dec 23, 2016 7:52 pm
Location: SAN Francisco

Re: Losing Hope | 4wk post op | Need advice please!

Postby Tsanchez12369 » Mon Feb 24, 2020 4:36 pm

It’s reassuring Dr kramer says it’s not an aneurism. From what I hear he’s very trustworthy. 4 weeks seems like a long time to still have swelling though
Sept 11, 2018: excision, grafting (human cadever tissue) and implant. Doc is Dr Edward Karpman in Mountain View, surgery at El Camino Hospital, LOS Gatos CA. AMS 700 CX infrapubic 18 cm + 3 cm RTE. http://www.peyroniesforum.net/index.php

Pamen116
Posts: 17
Joined: Tue Dec 03, 2019 7:33 pm

Re: Losing Hope | 4wk post op | Need advice please!

Postby Pamen116 » Mon Feb 24, 2020 4:59 pm

Tsanchez12369 wrote:It’s reassuring Dr kramer says it’s not an aneurism. From what I hear he’s very trustworthy. 4 weeks seems like a long time to still have swelling though




I never said that. Also he never said that- he actually wasn’t helpful at all. My concern is it is aneurism
26 yrs old| ED since 19 | Oct 23,19 installed IPP by Dr Sammy Vick in San Antonio TX with Titan Coloplast OTR (18cm, 2RTE) | Revision by Dr Kramer in Baltimore MD on Jan 28, 20 with Titan Coloplast (22cm 1RTE)

barrybj_98
Posts: 17
Joined: Fri Jan 31, 2020 2:58 pm

Re: Losing Hope | 4wk post op | Need advice please!

Postby barrybj_98 » Mon Feb 24, 2020 5:32 pm

I don’t know what you’re depressed about. I’d trade Dick’s with you in a minute.

GOLD HORSE
Posts: 57
Joined: Sat Jan 25, 2020 9:41 am

Re: Losing Hope | 4wk post op | Need advice please!

Postby GOLD HORSE » Mon Feb 24, 2020 5:46 pm

I do not see anything with you, I think your problem is when deflated. Think I have
the same problem. We need to be patient.

newbie443
Posts: 484
Joined: Fri Dec 01, 2017 9:41 pm
Location: Sedgwick county, Kansas USA

Re: Losing Hope | 4wk post op | Need advice please!

Postby newbie443 » Mon Feb 24, 2020 10:29 pm

Friend I am sorry to hear about your trouble. I understand your feelings in that many other have gone through this with great results on the first surgery and you have had the last 2 with problems both times. But the thing is we can't change that. So we do the best we can with what we have. In many cases these problems do work themselves out over time. When I had my problems I had a lot of new bruising albeit at different place than yours and I backed off for a day or so and then started back a bit easier. Might let some of that trouble at your base improve. I watched the bruising and used it to scale back or increase what I was doing. This is the AMS video https://www.bing.com/videos/search?q=am ... M%3DVQFRAT I know you have a Coloplast but this vid has a lot of good info for inflating and problems. About 11:35 in is a pull stretch procedure for resolving kinked tubing that may help if the cylinder is kinked. I can understand not wanting another surgery I would like one but just cannot afford it. And you have time before another surgery can be done. Try to stay positive. So far no infection. I used that to help me. I was able to get mine to work well enough to go out and date women and have sex. From that point of view even though I still have problems with mine I think I did the right thing when I did it.

So don't give up. I had improvements past one year. Just ease back a bit and give yourself some more time. Think positive and keep trying. Keep cycling and watching and working on it. Like they say winners never quit and quitter's never win.
Injections failed. Implanted 3-21-18 AMS 700 LGX 21 + 1 RTE 100 cc reservoir Dr. Kramer. https://youtu.be/QPu9pLBM0wM

62 years young.

Will show and tell and talk with others.

Trchd1
Posts: 21
Joined: Mon Jan 06, 2020 2:11 pm

Re: Losing Hope | 4wk post op | Need advice please!

Postby Trchd1 » Mon Feb 24, 2020 11:49 pm

you have the same tubing issue i am having its the tubes from the cylinders the way they are routed I just placed a post 2 different ways to install a ams cylinder
it talks about another Kramer patient (so am I) who went to Nashville and had his revision done that appartntly fixed his tubing issue Ceck it out

thereishope
Posts: 138
Joined: Sat Oct 27, 2018 3:22 am

Re: Losing Hope | 4wk post op | Need advice please!

Postby thereishope » Tue Feb 25, 2020 3:50 am

Pamen116 wrote:Hello all-

I’m in need of help. Right now I’m 4 weeks post op and cannot tell if my left cylinder simply has a kink due to fibrosis scar tissue or if I’m already experiencing early signs of a cylinder aneurysm.

Before everyone tells me to follow up with my URO, I have, but at this point I’m on the suspicious end of noticing a trend from surgeons not acknowledging their mistakes (based off my experience and my extensive research through this forum).

Kramer advised he saw absolutely nothing wrong and didn’t know what the bump was on my left cylinder base. I went to Dr Kansas (who is Kramer’s friend) out in Austin only to be told all looks fine even though it was noticeable he was concerned and then stated let’s just do a follow up.

I get it, so much will change within the 6 month and 2 year range, my concern is that I’m not getting honest feedback from surgeons. I was undersized the first surgery by Dr Sammy Vick in SA TX and he would not acknowledge it and got defensive when I questioned my floppy glands.

I really just need some raw, honest feedback from someone who maybe has had this similar issue with the Titan Coloplast. I’ll attach a photo as well-

Right now I can’t differentiate if this is something that will get better, if it’s just base swelling (doc said I was a bleeder and had a lot of arteries), a kink that will work itself out breaking through the scar tissue from my previous injury or if this in fact is a cylinder aneurysm.

This is my 3rd surgery in the last 2 years and do not look forward to a possible revision, I’m in a very bad place mentally- I’m extremely depressed and have no motivation right now.

Note that the base problem im having literally “pokes me”- sometimes from the top sometimes from the side- is it possible that the cylinder is out of the corpora? I don’t feel much pain other than when I cycle right where this bump is. When 80% inflated the poke goes away but there still remains a noticeable lump there.

All advice is appreciated-


I find it super hard to believe Dr Kramer would steep you out on this. I was unable to exactly discern what exactly is the problem? Like do you only feel the tubing or you have pain as well and kind seeing if it subsides?

oneperson
Posts: 235
Joined: Tue Oct 22, 2019 10:54 am

Re: Losing Hope | 4wk post op | Need advice please!

Postby oneperson » Tue Feb 25, 2020 7:21 am

barrybj_98 wrote:I don’t know what you’re depressed about. I’d trade Dick’s with you in a minute.


+1. I would change mine by that blindly. Even keeping my pain at full pumped. And I am 5 months post surgery, not 4 weeks.
Implanted September 12nd 2019. Coloplast Titan OTR 20 cm + 1 cm RTE. Dr Cruz (Spain). Liver transplanted. Born in 1967. ED since 24 in different degrees. Pills stopped working in March 2019. Injections caused much pain.


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