It's all over . . .but. . .

The final frontier. Deciding when, if and how.
rglassva
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It's all over . . .but. . .

Postby rglassva » Thu Aug 27, 2015 12:33 pm

Well. . . what's done is done - even if not if what I expected.. . . Dr. Kramer came in before surgery and said he'd been thinking about my case and knew how much I wanted the LGX. . . wanted me to know he would do his best but might have to go with the CX which has more slender cylinders. . . he looked at my anatomy again and afterwards said about 50/50 chance of getting the LGX in. . . either way I knew he'd do his best and I'd be fine with whatever he needed to do . . . into surgery I went. . .wake up and Dr. K is there with bad news. . . wasn't able to get ANY implant in - apparently my anatomy would not cooperate. . basically the chambers where the cylinders would have gone were just not there despite his best efforts to dilate them or do whatever else he could to get into them. As he put it, the tissue was just not developed - likely due to the radiation I received to that area back in the mid-70's - right before I was going through puberty. Sooooo, I ended up with a catheter in that I will take out on Sunday and he did a bit of ventral phalloplasty (got rid of some turkey neck under the shaft/above the scrotum) and I'm back to status quo as far as the e.d. goes. Dr. K. said about the only option he could think of at this point would be some reconstructive surgery - no thanks. Now to find out how much the bill is going to be and move on. . . If anyone could've helped me I know Dr. K was the one so at this point I guess I'm done.
Thanks to everyone for their thoughts and prayers and encouragement, suggestions, and recommendations over these past few years . . .I'll do my best to stay in touch and see how things are going for the rest of you. Of course if anyone has been through something similar and has any miracles cures, please pass them along. Best to all of you in your own journeys. Rick
rhabdomyosarcoma - 1975
chemo/radiation
e.d. since puberty

jn1421
Posts: 497
Joined: Sun Oct 10, 2010 2:21 am

Re: It's all over . . .but. . .

Postby jn1421 » Thu Aug 27, 2015 1:13 pm

Rick,
I'm speechless. I want to say or do something encouraging but I'm without anything to offer except my friendship and honest concern. Please know that I'm praying for you. Keep us posted with your recovery and presence in chat.

dg_moore
Posts: 1885
Joined: Mon Apr 25, 2011 9:34 am

Re: It's all over . . .but. . .

Postby dg_moore » Thu Aug 27, 2015 3:11 pm

I'm really sorry to hear this, Rick. It sounds like a very unusual case, and of course Dr. Kramer did his best, which is the best you could ask for. I understand your reluctance to go with reconstruction, but maybe down the road you'll want to explore that possibility. And even though Dr Kramer is tops, maybe a second opinion from somebody like Eid or Milam or Garber would be worth exploring. In any case, this is not good news - I wish you the best.

Dave
Dave, 80, Maryland - Implant (Titan) 2008 by Dr. Andrew Kramer (failed Sept 2020) - never used due to a stroke that, among other things, ended my sex life.
Life is not the way it's supposed to be, it's the way it is.

RelievedofED1
Posts: 339
Joined: Sat Feb 28, 2015 1:50 pm

Re: It's all over . . .but. . .

Postby RelievedofED1 » Thu Aug 27, 2015 5:03 pm

As everyone has said this is very sad news for you and we are all sorry to hear you had to go through that and not get implant. Once you have a chance to recharge a bit it might be worth asking Dr Kramer who he would recommend for a second opinion or for that matter who does this kind of reconstructive surgery that he would trust to say no chance or we can help honestly. Transgender female to male phalloplasty is done more often now which involves implants and penis creation and I wonder if one of those specialists might find your situation easier than that starting from scratch bearing in mind the scarring you might have. I would trust Dr Kramer to give you some good names if you ever decide you want to go that route. Again so sorry to hear and hope you will let us know how you are doing as you move forward!
66 year old with ED intermittently for years and consistently for the 2 years before implant. Tried everything. AMS CX 21cm+1 cm RTEs Dr Kramer 4/29/2015.
Revision 5/3/2021 AMS CX 700 21cm+2 cm RTEs.
Revision 2022 Titan XL 24 cm no RTEs.

rglassva
Posts: 199
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Re: It's all over . . .but. . .

Postby rglassva » Sat Aug 29, 2015 9:37 am

Recovery update - scrotum a bit swollen and tender - glans bruised and the "donut" behind it is still quite swollen.
I'll take the catheter out tomorrow morning - you'll probably hear me when I do! :o
Dr. Kramer says he's with me til the end of this journey so we'll see what tricks he has up his sleeve.
Will keep everyone updated.
Rick
rhabdomyosarcoma - 1975
chemo/radiation
e.d. since puberty

pockie
Posts: 165
Joined: Sat Mar 28, 2015 5:30 pm

Re: It's all over . . .but. . .

Postby pockie » Sat Aug 29, 2015 5:54 pm

Sorry to hear that, can't imagine how much it sucked waking up after surgery and hearing the bad news.

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LGX_Man
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Re: It's all over . . .but. . .

Postby LGX_Man » Sat Aug 29, 2015 6:23 pm

Stay positive Ricky! If Dr. K says he'll stay with you til the end, then he's obviously got a plan!
62. Retired. AMS 700 LGX implanted Nov. 18, 2013. Ask me any questions about being implanted or life afterwards.

LMCatman
Posts: 1006
Joined: Wed May 08, 2013 11:11 am
Location: South Florida, USA

Re: It's all over . . .but. . .

Postby LMCatman » Sun Aug 30, 2015 12:11 pm

That sucks! Maybe a further surgery will help you. Good luck!

Among the mistakes my first implant surgeon made was "crossing" the "balloons" about an inch out from the base. I thus had two "balloons" in one chamber and none in the other chamber, resulting in a near 90 degree turn to the left. In the intervening year the unused chamber had closed up (or healed shut???). Dr Perito was able to open or reopen the second chamber (the term he used was 'create a new channel') and, 16 months later my dick is still straight and all works well.

While I thought I was "totally fucked", it all ended up OK. I hope the near future brings you a solution to your situation. Again.... Good Luck!!!!
73 Years old. RP Oct 2010, No erections after, Botched Titan implant April, 2013, Successful Titan revision, April , 2014 by Dr. Paul Perito, Miami. Titan failure Feb 2017. Rev. by Dr Perito March 1st, 2017. Titan failure Nov 2020. New Titan January 2021

rglassva
Posts: 199
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Re: It's all over . . .but. . .

Postby rglassva » Mon Aug 31, 2015 12:25 pm

Update - I was able to remove the catheter yesterday without a whimper or a hitch. . . . still swollen and tender and a bit of renewed hope after reading LMCatman's response . . . since I'm not interested in having a new penis made out of some other part of my body . . . maybe Dr. Kramer can have a chat with Dr. Perito? . . . .Called doc's office today to see if they had any idea how much the charges would be affected by the fact that they had to "abort the mission" - his nurse didn't but is gonna check into it for me. Sure hope it's not the full $20K although they did just about everything they would have done if they had installed the implant. We shall see - journey continues.
Rick
rhabdomyosarcoma - 1975
chemo/radiation
e.d. since puberty

dg_moore
Posts: 1885
Joined: Mon Apr 25, 2011 9:34 am

Re: It's all over . . .but. . .

Postby dg_moore » Mon Aug 31, 2015 12:50 pm

rglassva wrote:Update - I was able to remove the catheter yesterday without a whimper or a hitch. . . . still swollen and tender and a bit of renewed hope after reading LMCatman's response . . . since I'm not interested in having a new penis made out of some other part of my body . . . maybe Dr. Kramer can have a chat with Dr. Perito? . . . .Called doc's office today to see if they had any idea how much the charges would be affected by the fact that they had to "abort the mission" - his nurse didn't but is gonna check into it for me. Sure hope it's not the full $20K although they did just about everything they would have done if they had installed the implant. We shall see - journey continues.
Rick

As I recall, the device itself is pretty pricey - I believe the charge on my bill in 2008 for Titan was something like $7500 or maybe more.
Dave, 80, Maryland - Implant (Titan) 2008 by Dr. Andrew Kramer (failed Sept 2020) - never used due to a stroke that, among other things, ended my sex life.
Life is not the way it's supposed to be, it's the way it is.


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