New Doc & not encouraging

Sticking a needle Where? Courage, guidance and help.
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SteveSW
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Joined: Sat Sep 08, 2018 6:23 pm
Location: St. Louis, MO

New Doc & not encouraging

Postby SteveSW » Fri Apr 05, 2019 10:12 pm

So, I found a new urologist, and I really liked him. First, some history. As a result of Peyronie's, I have an extremely large dorsal plaque mass running approx. 4.7 cm (old Dr's estimate) of my penis, and as wide as my penis near the base. I was first diagnosed in August, 2005 and underwent a course of Verapamil injections, which did help in reducing my curve from 90 to about 45-50 degrees. Over time, hinging has developed mid-shaft and has gotten progressively weaker, to the point now, 100mg Viagra doesn't help enough to overcome the weakness and allow for penetrative sex.

This brings me to my new doc. Very thorough exam, very knowledgeable about Peyronies and was shocked by the size of my plaque mass and amused by my large Prince Albert. I went to the appointment wanting an evaluation for starting injections. He is not hopeful, because depending on how calcified (become bone like) the mass is, and how it has attached itself to the Corpora Cavernosa, injections may "quite possibly be unhelpful or possible."

He sent a request to my insurance co. for approval to get an ultrasound. His statement was, "I won't touch you until we see the results from the ultrasound." Not that I like the possibility of not being able to use injections and not having sex, he is the first doctor that has thought an ultrasound was indicated. I liked his cautiousness. The insurance company responded that prior-authorization was not needed. I can't get the ultrasound until May 30th because he is very busy and insists that he do it himself, but the end of May feels like forever away. I guess the point of this novella, is that I am disappointed and depressed about the possibility of never having a usable erection, or having penetrative sex again. An implant might be on the horizon, but will take several months to arrange financially, find a surgeon etc. Thanks for letting me whine guys!
20 years of severe Peyronie's plaque, 90 curve, hinging and ED. Cost me 1.5" L and 1" G.
Implanted 2/18/21, AMS CX, 18 CM + 3 RTE, penoscrotal. Have gained 3/4". Gay, married, age 68.

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bldoink
Posts: 3719
Joined: Mon Apr 03, 2017 12:58 am
Location: Fl.

Re: New Doc & not encouraging

Postby bldoink » Sat Apr 06, 2019 12:31 am

I'm glad you seem to have found a good doctor. I'm sorry he had to give you bad news. I wish you success in your journey.
R.R.P 2011 Mayo Jacksonville, Dr. M. Wehle. Nerve sparing - damaged. C in margin. Radiation 2023, V.E.D, Viagra and PGE-1 (80mcg/ml) injections @ ~ 14 units. Originally Edex20, then compounded PGE-1 - cost. Inject. 12 yrs. It works. Treasure coast of FL.

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SteveSW
Posts: 977
Joined: Sat Sep 08, 2018 6:23 pm
Location: St. Louis, MO

Re: New Doc & not encouraging

Postby SteveSW » Sat Apr 13, 2019 6:51 pm

Docs office called that they had a cancellation and could I come in on Tuesday 4/16 for the ultrasound, and determination of my suitability for inject therapy. Maybe some answers?
20 years of severe Peyronie's plaque, 90 curve, hinging and ED. Cost me 1.5" L and 1" G.
Implanted 2/18/21, AMS CX, 18 CM + 3 RTE, penoscrotal. Have gained 3/4". Gay, married, age 68.

Larry10625

Re: New Doc & not encouraging

Postby Larry10625 » Sun Apr 14, 2019 6:59 am

SteveSW wrote:So, I found a new urologist, and I really liked him. First, some history. As a result of Peyronie's, I have an extremely large dorsal plaque mass running approx. 4.7 cm (old Dr's estimate) of my penis, and as wide as my penis near the base. I was first diagnosed in August, 2005 and underwent a course of Verapamil injections, which did help in reducing my curve from 90 to about 45-50 degrees. Over time, hinging has developed mid-shaft and has gotten progressively weaker, to the point now, 100mg Viagra doesn't help enough to overcome the weakness and allow for penetrative sex.

This brings me to my new doc. Very thorough exam, very knowledgeable about Peyronies and was shocked by the size of my plaque mass and amused by my large Prince Albert. I went to the appointment wanting an evaluation for starting injections. He is not hopeful, because depending on how calcified (become bone like) the mass is, and how it has attached itself to the Corpora Cavernosa, injections may "quite possibly be unhelpful or possible."

He sent a request to my insurance co. for approval to get an ultrasound. His statement was, "I won't touch you until we see the results from the ultrasound." Not that I like the possibility of not being able to use injections and not having sex, he is the first doctor that has thought an ultrasound was indicated. I liked his cautiousness. The insurance company responded that prior-authorization was not needed. I can't get the ultrasound until May 30th because he is very busy and insists that he do it himself, but the end of May feels like forever away. I guess the point of this novella, is that I am disappointed and depressed about the possibility of never having a usable erection, or having penetrative sex again. An implant might be on the horizon, but will take several months to arrange financially, find a surgeon etc. Thanks for letting me whine guys!



Do you have any pictures you would be willing to share? :)

Larry

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SteveSW
Posts: 977
Joined: Sat Sep 08, 2018 6:23 pm
Location: St. Louis, MO

Re: New Doc & not encouraging

Postby SteveSW » Tue Apr 16, 2019 4:27 pm

Larry, No pictures. If I ever have another full erection, I'll snap some and share.
20 years of severe Peyronie's plaque, 90 curve, hinging and ED. Cost me 1.5" L and 1" G.
Implanted 2/18/21, AMS CX, 18 CM + 3 RTE, penoscrotal. Have gained 3/4". Gay, married, age 68.

User avatar
SteveSW
Posts: 977
Joined: Sat Sep 08, 2018 6:23 pm
Location: St. Louis, MO

Re: New Doc & not encouraging

Postby SteveSW » Tue Apr 16, 2019 4:42 pm

Just back from doc. After lengthy ultrasound and his consultation with another Dr., the overall news is not good, and quite depressing. Even though he is an implant Dr., he won't do it because of the size of my Peyronie's plaque mass. Neither doc has ever seen a calcification this large. I am not a candidate for Xiaflex for that reason, and doc's are questioning that an implant is even possible. The corpora cavernosa appears to be too constricted to accept the implant chambers. If they got them in, they would most likely be too small to be effective for me, and recovery would be rough. Same response regarding malleable implant (which I don't really want anyway.) He did say that I should seek the opinion of another implant surgeon in a large, busy office which might have more experience dealing with my situation. Not sure what to do now.

He is going to write a Trimix prescription for with a large starting dose. The low dose shot he gave me in the office prior to the ultrasound barely caused a chubby. I'll give it a shot, sorry, for the time being, against advice of others here on the board, but that shows how desperate I am for reliable hard ons.

EDIT: Just read my dr's notes about my visit online, I can add venous leak to the scenario. He didn't mention that in the office.
20 years of severe Peyronie's plaque, 90 curve, hinging and ED. Cost me 1.5" L and 1" G.
Implanted 2/18/21, AMS CX, 18 CM + 3 RTE, penoscrotal. Have gained 3/4". Gay, married, age 68.

User avatar
SteveSW
Posts: 977
Joined: Sat Sep 08, 2018 6:23 pm
Location: St. Louis, MO

Re: New Doc & not encouraging

Postby SteveSW » Tue Apr 16, 2019 8:01 pm

I feel like I'm being sucked into a deep, black hole, with no hope of getting out. I have tried hard to stay positive, up until today's doctors visit, which made me face the utterly depressing, gut wrenching reality of never having an erection again.
20 years of severe Peyronie's plaque, 90 curve, hinging and ED. Cost me 1.5" L and 1" G.
Implanted 2/18/21, AMS CX, 18 CM + 3 RTE, penoscrotal. Have gained 3/4". Gay, married, age 68.

alibaba
Posts: 3027
Joined: Sun Oct 12, 2014 8:04 pm

Re: New Doc & not encouraging

Postby alibaba » Wed Apr 17, 2019 12:18 am

Don't give up. Some have had extensive repairs due to plaques. I asked Dr. James Rybak out of curiosity if plaque can calcify like lymph nodes. He replies "absolutely, sometimes you can hear it crunch when you break it up." There are narrow cylinders for use when the cavernosa is narrow. There are tools called cavertomes to break it up or grind a path through it and to stretch a tunnel through. You may have a severe case or a lazy doctor. I have no idea which but one thing I know is you can fire your doctor and look into another one that has a lot of experience with this kind of thing. I think it was Dr. Eid that told me it is rare to find an older man that does not have plaque, fibrosis, hernia repairs and health problems and any doctor with experience expects to find some or all of them and knows how to deal with it. There ARE many experienced doctors. From my own experience, I also know there are many doctors who only want to take the quick easy cases because insurance is going to pay them the same if they do it in 15 minutes or it takes 4 hours. Cheers man and never ever give up. Be strong. Don't freak.
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LGX 21cm .Milam 01/13/16. Horror; both service and surgical outcome. hated infrapubic installation. Kramer revision 03/01/17. 22cm Titan +1.5cm extender. Those who think their opinion is the only one that matters are a danger to themselves and others.

Larry10625

Re: New Doc & not encouraging

Postby Larry10625 » Wed Apr 17, 2019 5:23 pm

SteveSW wrote:Just back from doc. After lengthy ultrasound and his consultation with another Dr., the overall news is not good, and quite depressing. Even though he is an implant Dr., he won't do it because of the size of my Peyronie's plaque mass. Neither doc has ever seen a calcification this large. I am not a candidate for Xiaflex for that reason, and doc's are questioning that an implant is even possible. The corpora cavernosa appears to be too constricted to accept the implant chambers. If they got them in, they would most likely be too small to be effective for me, and recovery would be rough. Same response regarding malleable implant (which I don't really want anyway.) He did say that I should seek the opinion of another implant surgeon in a large, busy office which might have more experience dealing with my situation. Not sure what to do now.

He is going to write a Trimix prescription for with a large starting dose. The low dose shot he gave me in the office prior to the ultrasound barely caused a chubby. I'll give it a shot, sorry, for the time being, against advice of others here on the board, but that shows how desperate I am for reliable hard ons.

EDIT: Just read my dr's notes about my visit online, I can add venous leak to the scenario. He didn't mention that in the office.



I wouldn't take injections. They lead to Peyronie's Disease. If I were you, I would go see Dr. Kramer. If he can't help you, you're done. Very sorry for your awful news. :(

Larry

DougAnd
Posts: 1536
Joined: Sun Jul 08, 2018 5:10 pm
Location: Melbourne, Florida

Re: New Doc & not encouraging

Postby DougAnd » Wed Apr 17, 2019 8:02 pm

SteveSW wrote:I feel like I'm being sucked into a deep, black hole, with no hope of getting out. I have tried hard to stay positive, up until today's doctors visit, which made me face the utterly depressing, gut wrenching reality of never having an erection again.

Steve,
If you want to open up your corporas use a large VED tube at least 2 1/2 inches and be aggressive. It will balloon your penis and use your own blood to soften and stretch out your corporas. Good luck.
LGX 18cm+3cmRTE 8 / 8/18 by Docs Saracino , Prody of FL Disfigured by Implant. Married 31 years, Functionally impotent 2+ years. 4" day of surgery now 7" inflated after VED 6.5" without. Pump moved 12/4/18 by Dr Kata


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