My appointment with Dr Levine. FEEDBACK & THOUGHTS NEEDED

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diehardpatriot

TLDR: FULL REPORT RIGHT UNDER
-symptoms: recurrent tearing sensation inside of penis for over 6 months after a penis injury, I imagined it was a tunical tear that hasn't healed. Also some hardened lump that is palpable
-Dr Levine ultrasound finds no scarring or inflammation
-Levine believes there was trauma to a vein, that hasn't been allowed to heal due to extreme the extreme tension of being of the short side of my penis (I have congenital curvature)
-He has wrote me a prescription for 2 drugs, If they do not clear the issue up, he recommends a plication surgery, re relieve pressure of short side of the penis, and clear up the pain at the injured site.

FULL DETAILED REPORT. PLEASE READ, IN NEED OF FEEDBACK
This morning, I finally saw dr Laurence Levine. For those of you who have been following my story, you all know how complicated it is, and how I've seen a few doctors and left all of them stumped or scared to even treat me. So, here's what happened

I spoke to his PA and told her every detail and symptom I have (I'll link another post that outlines these details). A few minutes later Dr Levine comes in and says "You have quite the story young man" with a smile and look of concern. We talk for a bit, then he gives me a nerve sensitivity test. He said I am very sensitive, even "too sensitive", he claims this may be why I get all these weird sensations, because I feel everything that Is going on internally. after that, he says he wants to do an ultrasound both flaccid and erect. Upon physical examination he feels no scarring, although I feel a lump. He said I may be just feeling things.

Next ass the ultrasound, during the flaccid, he said no scar tissue was revealed, no inflammation found. Next, the erect. He gave me an injection (I hated it), said to think sexy thoughts, in the words of Levine "think about your favorite girl, and you're F^@$!ng her hard". He's a light hearted guy. I hate shots in general and the last thing I wanted to think about after having my dick pricked was sexy thoughts. After about a minute the burning went away and I was able to focus on getting hard. I did. He came back in, and did the erect. As soon as he came in I went to almost flaccid. He joked about it and said it's fine he can still check me out. He said my blood flow was good, and my vein trapping was good. Still, no scar tissue or inflammation to be found. He eventually felt the palpable lump, but said it did not feel like scar tissue. He then gave me a second injection to prevent priapism, this injection has left me in pain at the injection site, still in pain right now. The office has told me this is normal and it may bruise, anyone else experienced pain ?

Now, I had assumed my recurrent pain was caused by a tunical tear not allowed to heal due to constant erections.because of the lack of findings in the ultrasound,  Dr Levine's hypothesis was this:

There was a minor injury to the penis, he thinks specifically the circumflex vein is what's causing pain. Because of my congenital curvature, the short side of my penis takes a lot of pressure during erection. this is because it's getting the blood flow of the long side, but it's not as elastic, therefore causing extra strain, more than a normal penis. He believes this is why it hasn't healed yet. He gave me two drugs, that he believes may clear up the issue for good. One is Meloxicam, a strong anti inflammatory, another is a nerve blocking medication (I forogot the name). I shall take these for the prescribed time. If the issue does not clear up with the Meds, he recommends a plication surgery to make me straight. He believes being straight will relieve a lot of strain, relieving pain at the injured site. I asked him "what if being straight doesn't relieve the pain?" He very confidently responded "I know you are worried and you want to get this behind you, you need to trust that I am the world expert and i am confident in my diagnosis".

I will take the meds. But I am not sure I am very confident in this diagnosis, it does make at least half sense, but idk. What are y'all thoughts? Before doing anything surgical, I would get a second opinion from Dr Lue in San Fran. If he has a completely different díganosls, I'd then get a third opinion. For now, I will ice my dick at the injection site that still hurts. and get the presictipton. Finally, a doctor takes a crack at my case.

MY QUESTIONS FOR THOSE WHO READ:
-opinion on the diagnosis ?
-anyone else have pain after an injected ultrasound? How long did it take to go away?
-advice on moving forward?(I understand it's up to me, just looking for guidance)
-
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

Hawk

DieHard,

A very good report.  Although I understand the need to talk this out.  There is not much I have to contribute.  I do think your plan of a second opinion is good but I think I would schedule it after the course of medications was complete. I see no point in doing it before then.  If you resolve you just assume Dr. Levine was correct and move on.  If after the drugs you have no improvement, then I guess you could wonder if Dr. Levine's entire diagnosis was off base and try a second opinion.

For now, it will take some patience.  

Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Pfract


diehardpatriot

Agreed Hawk. Just picked my prescription up.

Prfct: didn't give me any number. He just said blood flow was as expected for an 18 year old.  
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

JS1991

Hey patriot, I'm glad you're seeing Levine. Very happy for you! I myself didn't get any pain from ultrasound injections or stem cell injections (after the fact at least). I feel the same way you do in not being 100% confident in his diagnosis, but his response plus your plan put me at ease a bit. There is literally no better option at the moment than for you to see Levine followed by Lue for a second opinion if necessary, with a third if needed as a tiebreaker. I would follow that plan.
Do your homework before attempting a prolonged fast. JS1991 Timeline - Peyronies Society Forums (updated)

TonySa

Dr Levine has a good reputation, I'd trust him.  If you can get a second opinion you may feel better.  Guess, the question is who could you go to of his caliber?
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Hawk

He mentions he would get a second opinion from Dr Lue in San Fran.  I would say Dr. Lue is of that caliber.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

diehardpatriot

JS: thank you for reading and feedback!! I agree man, not feeling his diagnosis 100 percent. But all I can do is as you said take the meds and if necessary see dr lue after. I mean, even the best doctors give questionable advice. He said masturbation is good, but masturbation greatly aggravates my condition. I'm gonna try to start maturbatonf normally once I finish the drug regimen and see if everything heals up.

Tony: thanks for reading!! Yes, As hawk mentioned, Dr Lue is on Levine's level. World renowned expert.
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

diehardpatriot

Pain from injection has subsided a lot since yesterday, that's good. I appreciate all The feedback! Glad to know I am not the only one questioning the diagnosis, I know it sounds dumb to question a renowned doctor, human nature I guess. It's been said in this forum that scar tissue does not always show in ultrasound, and many have also shared that their urologists say they do not feel any scar tissue, while they (the patient) easily feel scarring on their penis. Dr Levine at the end of the day is still a human, as any other doctor. This is why i have my doubts. Keep the feedback coming.when this is all over I feel my case will be good for this forum and for someone in the future to refer to.  
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

Alibaba

I saw Lavine about my first implant. His take was see if I could take the pain and get used to if for 2 more years. My wife and I both thought he was an ass.  Some people like him. I was so pissed that I split firewood for 2 days in Chicago before traveling the 9 hours home. Hoping better results for you. Nothing wrong with a second opinion.  
Milam 1/13/16-LGX 21cm - BAD service & surgical outcome Hated infrapubic.
Kramer revision 3/1/17 Titan 22cm + 1.5 cm extenders

swiss


Alibaba

I do not think he wanted to do a revision, did not want a patient who had HIV and he claimed he was a buddy of the doctor who did the implant and traveled with him. In other words, you traveled 9 hours to get here and paid $500 plus for the visit but I don't have time for you, the P.A. woman will be in. To his credit, he was the first person that got the damned thing to pump up so since he could get it to pump up, I was to be happy with the smaller dick, tubing wrapped around my dick and pain. F'k that noise! At any rate he said call again for an appointment in 2 years if I could not deal with it and he would adjust the pump location.  
Milam 1/13/16-LGX 21cm - BAD service & surgical outcome Hated infrapubic.
Kramer revision 3/1/17 Titan 22cm + 1.5 cm extenders

swiss


diehardpatriot

Alibaba: thanks for reading and feedback! I can see how he could be an ass.

Update; still have pain at injection site , waiting to go away.
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

TonySa

Wow Alibaba, thanks for sharing your experience w Levine-certainly makes me think twice now about him.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Alibaba

Quote from: swiss on November 10, 2018, 03:07:22 PM
I got it he thought a revision would be risky?

I do not think there was any risk. I think he had the mindset if it gets hard it is fine no matter what issue you perceive it to have plus if he revised the implant Milam installed, who he claimed was a buddy of his, then he would be making it appear credible Milam did a flawed implant. I did not like him, my wife did not like him, I did not like his P.A. who did not answer my questions. That said, I do know a person who had several severely failed implant surgeries and Levine was the one who fixed him. Maybe it is that I don't take too well to arrogant people. Some people jive, some people don't.  I do like one of his former students very much.  Cheers.  
Milam 1/13/16-LGX 21cm - BAD service & surgical outcome Hated infrapubic.
Kramer revision 3/1/17 Titan 22cm + 1.5 cm extenders

Frank55

Interesting points Alibaba. I had somewhat of a similar experience with Dr. Gelman in CA. He comes across as cocky and arrogant - I did not particularly like him. But with the pool of REALLY GOOD urologists for this condition so small, one has to step back and ask if "liking" is a valid criteria for proceeding to use/not use their services. I think Hawk has made this point before. You want the surgeon who is best for your particular condition - not the one you like the most.

Diehardpatriot, seeking a second opinion is never a bad idea. Dr. Lue seems to be focused on Xiaflex as his treatment of choice for peyronies, though I'm not sure how that would translate in your situation. But his highly experienced perspective would be valuable regardless. I'd be interested to hear if his appraisal of your condition is the same as Dr. Levine's.
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

diehardpatriot

Frank: thanks for feedback. I totally agree. It's sad we have to be desperate, and go with doctora we may not even like because there's only like 5 good ones we know of in the US. I agree with your advice !

Thanks everybody for all of the support and feedback! I am only 18 and I need all guidance .

I forgot to add that I am currently off Pentox for the first time in many months. Also, I am still having pain at one injection site. It feels like a soreness, like it's bruised inside or something. I think he poked at my corpus spongesum on accident. It kind of worries me pain hasn't went away yet. Guess I'll be participating in no nut November, not gonna take any chances. Due to upset stomach, I have not started the drugs he gave me. Will start when I feel my stomach can take it
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

Hawk

I have always said if I want love and nurturing I will call my pastor or my family.  If I need medical help I want the doctor who is the best, most talented one I can find.

I still feel that way but there are rare occasions when you find both and when you do it is sweet.  Dr. Eid is such a doctor so they are out there.  I also knew a radiation oncologist that was similar although not quite as likable and I have a friend who is an orthopedic surgeon who is the most admirable example of a human being I have ever known.  Not just to me, everyone will tell you there is not another like him.  He excels at being a doctor, a father, a husband, a friend, and an asset to the community. He has made such an impression on me that I often stop and ask myself "what would Mark do" when I feel uncharitable toward someone.  It has helped a little but it is a hard example to even try to emulate.

These kind are there, just few and far between and if I have to sacrifice one or the other I will sacrifice bedside manner before skill and talent.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Alibaba

Not only his attitude were an issue but that in 2 years if I was not satisfied he would move the pump. Moving the pump was only one of a list of 13 issues I had with the first implant. I think Dr. Kramer mentions the long list of issues at some point in this video.   https://www.youtube.com/watch?v=0Jdn0Eu3sGg
Milam 1/13/16-LGX 21cm - BAD service & surgical outcome Hated infrapubic.
Kramer revision 3/1/17 Titan 22cm + 1.5 cm extenders