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Author Topic: Really bummed after new urologist visit  (Read 533 times)

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Steve W

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Really bummed after new urologist visit
« on: April 03, 2019, 12:19:04 PM »

So, I found a new urologist, and I really liked him. First, some history. 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 hinging and allow for penetrative sex.

This brings me to yesterday, and 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, 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, and now we wait for the insurance co. I guess the point of this novella, is that I am disappointed and kind of depressed about it. An implant is on the horizon, but will take several months to arrange financially etc. Thanks guys!
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65, Albuquerque, NM. First onset 18 years ago. Original bend reach 90 degrees, now 60. Verapamil helped slightly, as did pumping early on. Now using traction and waiting for Medicare & my private insurance to cover an implant next year.

Hawk

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Re: Really bummed after new urologist visit
« Reply #1 on: April 03, 2019, 02:49:41 PM »

If in fact, an implant is on the horizon, I would not use injections.  No point in triggering more issues.  Use a VED for sex and some size restoration.  Also, use a traction unit IF you need to regain any size before surgery.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Steve W

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Re: Really bummed after new urologist visit
« Reply #2 on: April 03, 2019, 06:45:13 PM »

Hawk,
I appreciate your guidance. One thing I didn't mention in my original post, is that if the calcified plaque is severely constricting my corpus cavernosum (which is what may be restricting blood flow, resulting in erection difficulties) is there a possibility that the chambers are so damaged that an implant is not possible either. So many "ifs" and I'm just freaking out and waiting for the ultrasound. Hopefully, he is wrong because the thought of never having an erection or sex again, is depressing.
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65, Albuquerque, NM. First onset 18 years ago. Original bend reach 90 degrees, now 60. Verapamil helped slightly, as did pumping early on. Now using traction and waiting for Medicare & my private insurance to cover an implant next year.

Hawk

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Re: Really bummed after new urologist visit
« Reply #3 on: April 03, 2019, 08:36:48 PM »

I have yet to hear of anyone that was alive that could never get an erection again through some means.

Is it possible that you could not be fitted for an implant?  I guess anything is possible but if you go to a very skilled surgeon he should be able to resolve it even if he has to do the very rare procedure of putting in a malleable implant for several months before installing a 3 piece inflatable implant.

Since you are not a straight forward surgical case I would definitely go to a high volume surgeon with a lot of experience.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Steve W

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Re: Really bummed after new urologist visit
« Reply #4 on: April 12, 2019, 10:32:03 PM »

Well a quick update. New urologists office called today. They had a cancellation for Tuesday (4/16) and gave me the slot for my ultrasound. Good or bad news, I will have better information for decision making going forward. I will also find out after the test if he thinks I might be able to begin injections. Not sure about pursuing that course of action, but I'll wait for the results!
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65, Albuquerque, NM. First onset 18 years ago. Original bend reach 90 degrees, now 60. Verapamil helped slightly, as did pumping early on. Now using traction and waiting for Medicare & my private insurance to cover an implant next year.

Steve W

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Re: Really bummed after new urologist visit
« Reply #5 on: April 16, 2019, 04:48:29 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 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, and I sincerely appreciate their input. But that shows how desperate I am for reliable hard ons.

Edit: Just read docs notes on the patient site, and I can now include venous leak to my issues. He didn't mention that in the office.
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65, Albuquerque, NM. First onset 18 years ago. Original bend reach 90 degrees, now 60. Verapamil helped slightly, as did pumping early on. Now using traction and waiting for Medicare & my private insurance to cover an implant next year.

pfract

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Re: Really bummed after new urologist visit
« Reply #6 on: April 16, 2019, 08:39:03 PM »

Hey Steve! Fortunately for you I know exactly where you should be headed for help. I followed a diary from a guy on a similar situation to yours on another place. He had erection problems for a very long time, among with other health issues. He went to Dr Kramer to put an implant in. Dr Kramer on the OR was unable to insert the rods and said his penis was like a thick scar tissue block.

He was initially bummed and stitched the patient back up, doing nothing. He then directed him to a friend of his, called Dr Kurt Mcammon, i think you write it like that. Dr had the patient due vacuum therapy protocol very consistent to stretch out the penis and then opened up the penis again and basically carved out all the scar tissue out by opening the holes up.  This was reconstructive urology and a major procedure. But could be done. He then was healing for a bit more than 8 weeks but was able to have a two or three piece in.

I would say for now, reach out to Dr Kramer and mention briefly your situation. He will probably help you out or tell you were to go.

Steve W

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Re: Really bummed after new urologist visit
« Reply #7 on: April 16, 2019, 09:19:39 PM »

pfract, Thanks. Right now I'm in such a deep funk, I'm frozen in place and feeling nothing but despair. But, will keep your info in mind when I hopefully, feel like trying to move forward again. Appreciate your words!
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65, Albuquerque, NM. First onset 18 years ago. Original bend reach 90 degrees, now 60. Verapamil helped slightly, as did pumping early on. Now using traction and waiting for Medicare & my private insurance to cover an implant next year.

pfract

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Re: Really bummed after new urologist visit
« Reply #8 on: April 16, 2019, 09:35:18 PM »

I understand. Makes more than sense. Please take all the time you need to get your head straight again, but remember you have a chance of fixing your solution again. Grab yourself onto that idea so you don't loose it. We are here for you. I can also be reached by pm if you want to talk to me for any reason.

I will also search for the guys diary and pass it on to you. stay strong!

Steve W

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Re: Really bummed after new urologist visit
« Reply #9 on: April 16, 2019, 10:16:14 PM »

Thank you, pfract. This all feels overwhelming.
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65, Albuquerque, NM. First onset 18 years ago. Original bend reach 90 degrees, now 60. Verapamil helped slightly, as did pumping early on. Now using traction and waiting for Medicare & my private insurance to cover an implant next year.

Hawk

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Re: Really bummed after new urologist visit
« Reply #10 on: April 16, 2019, 11:08:41 PM »

I am confident that your situations is treatable with satisfactory results even though it might take effort.  Dr. Eid discusses putting in a malleable implant in rare cases to open up the chambers then putting in a 3 piece implant in a subsequent surgery.  If he has to do that there are only hospital charges for the second surgery.  Dr. Eid does not charge for the surgery or the new implant. When you are ready I would contactDr. Eid and Pfract's suggested surgeon and get two opinions and move forward.  You will find help.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

pfract

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Re: Really bummed after new urologist visit
« Reply #11 on: April 18, 2019, 12:20:02 PM »

Hey Steve: here's a link with more information on Dr Kurt

https://www.healthgrades.com/physician/dr-kurt-mccammon-2qsdy

Did you get my pm with the diary from the user?

Steve W

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Re: Really bummed after new urologist visit
« Reply #12 on: April 19, 2019, 08:25:51 PM »

pfract, Sorry, but no private message.
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65, Albuquerque, NM. First onset 18 years ago. Original bend reach 90 degrees, now 60. Verapamil helped slightly, as did pumping early on. Now using traction and waiting for Medicare & my private insurance to cover an implant next year.

pfract

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Re: Really bummed after new urologist visit
« Reply #13 on: April 21, 2019, 02:46:45 AM »

Pm sent with a lot of links. Just in case you missed it.

TonySa

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Re: Really bummed after new urologist visit
« Reply #14 on: April 21, 2019, 05:39:01 PM »

When you’re ready, since you have Medicare I’d consider reaching out to Dr Eid and Dr Kramer.  I believe they’ve both dealt with this situation which may well require excision, grafting and implant.
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte
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