MY JOURNEY CONTINUES - UPDATE

The final frontier. Deciding when, if and how.
rglassva
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MY JOURNEY CONTINUES - UPDATE

Postby rglassva » Mon Aug 08, 2011 2:34 pm

So my e.d. journey began a few years ago although I've had e.d. issues since puberty (I'm 48). I've tried pills, pump, and have been injecting for a couple of years now. Injections work best but still not firm enough for intercourse. Have been seeing a new urologist for about a year and just paid him a visit today. I have severe venous leakage and peyronies - no curvature, just plaque/scar tissue. I had hoped to get in on a study for a new drug that is expected to dissolve the plaque but because oral meds don't work for me and I have no curvature, was disqualified. Next option might have been injections of verapamil but according to uro, it only helps stop the formation of further scar tissue - doesn't do anything to get rid of what's there. We discussed an implant (the LGX) but he said due to the amount of scar tissue I have (mainly on left side) that he's not sure that's an option for me right now. He told me a Dr. Steve Wilson is coming in from California this week (an implant guru according to my uro) - I'm in Virginia - and he wants to talk with him about my case. Oh, did I forget to mention I have low testosterone (I'm on Androgel) and let's just say, not much to work with down there, so I sure don't want to do anything that's gonna cause me to loose any length, erection or no erection! Doc says keep pumping (I do so about 3 times a week for about 15 minutes) - he says I can get some length gains - hey, every little bit helps. Also is putting me on a prescription for a pill to take 3x a day that could help get rid of some plaque (and maybe even release some length). I'll have to update you on the name of the med. He'll contact me after talking with Dr. Wilson and we'll see where we go from here. Long and complicated journey with winding paths along the way, huh? Just wanted to update everyone and see if anyone has had a similar experience. Stay tuned - more to come. Rick
rhabdomyosarcoma - 1975
chemo/radiation
e.d. since puberty

hockey
Posts: 125
Joined: Tue Apr 26, 2011 8:35 am
Location: New Haven, IN

Re: MY JOURNEY CONTINUES - UPDATE

Postby hockey » Mon Aug 08, 2011 3:00 pm

Rick..
Good luck with your journey!
I have had Low T for several years. My Doctor treats me with Testopel pellets.
Really very slick and I get the injection every 6 months. You may want to ask your dontor about them.

I have failed the venous test also. Pills and pumps don't work either.

I am scheduled for my implant on 9/2. Do to some previous complications with
surgery Doctor has recomended I get the semi-ridged implants rather than the
pump up versions.

Sounds like your uro is on top of it. Wishing you nothing but the very best.

I am sure you'll get all th help and advice you can imagine form the guys here.
67 yr's young. Loving wife and 4 children 7 grandchildren. Type II diabetic for 9 years. Could retire but love my job and the people I work for. Pills, Pumps & Injections all failed. Implanted on 9/2/11. I am now "Bionic":)

antelope
Posts: 1497
Joined: Sun Nov 14, 2010 3:17 am
Location: Baton Rouge

Re: MY JOURNEY CONTINUES - UPDATE

Postby antelope » Mon Aug 08, 2011 5:14 pm

Thanks for the update, Rick. I've been thinking about you. Hopefully you're now a little bit closer to a solution. Hang in there. We're all pulling for you.
Born 1948, wed 1969. BPH & Type II Diabetes at age 35. TURP-2002; ED even before that--diabetes. Cardiac valve surgery: 2007 & 2019. Poor results with pills. Started trimix injections in Nov, 2010. Great results from the very beginning.

Cajun Jeff
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Re: MY JOURNEY CONTINUES - UPDATE

Postby Cajun Jeff » Mon Aug 08, 2011 5:37 pm

Rick that is great that your Dr is going to talk with the Wizard from the West! Do keep us posted.

Cajun Jeff
68 years old, Married 48 years. Prostate Cancer surgery 11 years ago. Tried Pills, VED, moved to injections (EdEx) for past 6 years. Implanted with AMS 700 LGX by Dr Hellstrom in New Orleans at Tulane Medical. 1/13/20

regain-is-the-aim
Posts: 260
Joined: Sat Apr 03, 2010 11:09 am
Location: Indianapolis

Re: MY JOURNEY CONTINUES - UPDATE

Postby regain-is-the-aim » Mon Aug 08, 2011 9:20 pm

Rick:

Good to hear from you. Sorry the trial didn't work; but it's on to the next thing. I'm pleased to hear your Uro will consult- the more competent minds the merrier. Keep us posted and continue the stretching and pumping- it does help.

Trust you Hosta are surviving these intense heat. Our garden has suffered as we have been without rain for over a month and irrigation only goes so far.

You are lucky to have an open and involved Uro. I'm sure he also appreciates your knowledge and willingness to keep trying. This journey does have twists and turns but there is progress being made. Hang in there and enjoy.

Miss you in Chat.

Regards,

Dick
"Regain-is-the-Aim"
Dick
PCa-surgery 10/06

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LGX_Man
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Re: MY JOURNEY CONTINUES - UPDATE

Postby LGX_Man » Tue Aug 09, 2011 10:52 am

Hey Rick. Glad to hear that you finally had another appt. Hope that the new doctor has some constructive advice!
62. Retired. AMS 700 LGX implanted Nov. 18, 2013. Ask me any questions about being implanted or life afterwards.

rglassva
Posts: 199
Joined: Wed Apr 28, 2010 9:00 am
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Re: MY JOURNEY CONTINUES - UPDATE

Postby rglassva » Tue Aug 16, 2011 12:04 pm

Got a call back from uro after he discussed my case with the west coast guru (Dr. Steve Wilson) - anyone heard of him? The medication he put me on is the generic form of Trental - I've read up on it a bit and it does seem to help in some cases like mine so I'll give it a whirl. Dr. Wilson seems to think that the Titan is the implant for me even though I need all the help I can get in the Length Girth Expansion departments (LGX) - and especially so if you lose length when you get an implant - yikes! Guess it has more to do with the rest of my situation/anatomy/peyronies/etc. Next and probably biggest hurdle will be the insurance issue - what I have now will not cover and need to see if there's a plan available to me that might - if not, no implant for me - doc said just the hospital charges (for 4 hours) could be upwards of $50,000!!!! (I'd gladly pay it for a guaranteed firm erection but alas . . . $$$ IS an issue) He said I've probably gotten about all the length I'm gonna get from pumping (2 cm so far) but said to keep it up. Go back to see him in December and take it from there. Thanks for 'listening' and appreciate any advice. Rick
rhabdomyosarcoma - 1975
chemo/radiation
e.d. since puberty

dlampton
Posts: 12
Joined: Thu Jul 28, 2011 6:00 pm

Re: MY JOURNEY CONTINUES - UPDATE

Postby dlampton » Tue Aug 16, 2011 12:38 pm

I think mine totallled about $32000 and I've heard low as 20K Medicare picked up all of mine.

I'd check around


Good luck......Dick

Illuminist
Posts: 60
Joined: Sat Jan 22, 2011 3:48 pm

Re: MY JOURNEY CONTINUES - UPDATE

Postby Illuminist » Wed Aug 17, 2011 10:59 am

The only length I lost was due to my priapism that left me scarred to the point where I couldn't have an erection at all. I was implanted about 11 months later. I was implanted with the AMS CX due to scarring as I need rigidity and width expansion for my corpora.

Dr. Karpman in CA was my doc. The price for no insurance is about $20,000 and it's the low pain infrapubic approach and the procedure is about a half hour. I was implanted in the middle of June and had sex the end of July with superior results.


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