Saw Dr. today-Let me know what you think of his advice

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samsung

I won't mention his name unless someone asks. He is a Boston doc.

He was very arrogant and brusque, but he did not strike me as uninformed. Opinionated and a bad listener and inclined to call us (forum members) obsessive kooks, but not a stupid man.

I told him I wanted a doppler (I just had one with previous doc. but he did not measure anything and it was a black and white image). I told him I wanted it as a baseline to see right now exactly how big and how calcified they were. And I wanted an exact measurement of my curvature degree so we could know how much worse or better anything was in 3-6 months and base future decisions off of that.

I told him I would not lead him in any direction, but made it pretty clear I wanted Xiaflex.

I told him I was having a consultation with Dr. Eid in mid-August.

Here is what he said.

1. Doppler is a waste of time. He said we already know you have a plaque. Plaque sizes and degrees do not correlate to how much worse a curve gets. Sometimes they have nothing to do with each other. He said measuring venous leakage amount is also a waste of time. He said you can get and keep an erection, so knowing the exact degree or not is a waste. And further, since my previous doppler was done flaccid and with bimix instead of trimix it could possibly be inaccurate anyway. But he said he would do one in 3 months if I still wanted it.

I see his point on both things, but I don't like it. Sits wrong with me.

2. That I had a 30 degree or less curve. His assistant previously said it was 45. The other doc. said 35. He said he sees 4-5 peyronie's patients a day and it was definitely less than 30.

I don't like inexactitude.

3. I told him about Dr. Eid. He said surgery in my case was absolutely stupid and he would never do it in my case. He only would do if total dysfunction or a curve that made sex impossible.

I understand where he is coming from, but I don't like it.

4. Regarding xiaflex. He said he would do it. But that if he were me, he would not get it. Said he wouldn't risk it.

So, the hard takeaway from this is basically he told me to live with the curve and reassess if it gets worse. Said he didn't generally believe in repeated active phases or that this disease is progressive.

He said supplements were a total waste. He said traction was o.k. but not well supported scientifically. But to go ahead if I wanted.

I do not accept this. The curve has to go or I have to go.

I have a moderately calcified plaque. So I don't see how that is going anywhere. And I do not forsee xiaflex doing anything.

So other than an implant, which I would imagine I can talk someone into eventually how the hell is this deformity going to go away? Live with it? You live with it.

When I hear from people that don't have this to just learn to live with it, I find it difficult to physically restrain myself.

I don't like doctors in the first place. They are nothing more than plumbers and electricians to me. They are there to do work for me. Not the other way around. And frequently they know FAR less than me. They are not Gods.

I'm going to get what I want out of this guy regardless (a doppler and xiaflex). But just want to know what you gents think.

I am more or less inclined to somewhat agree with this man even though it does not sit well with me. But I am still going to talk with Dr. Eid.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

2Oldfords

   First off I agree with you on a lot of Dr's. I think it makes them uncomfortable that a patient does research to be informed. I think some feel somewhat threatened and others dismiss you as a Google Dr. I can't say I disagree with this one considering where you are with this disease. I probably would dismiss xiaflex with a calcified spot as I don't think it will help that. I wouldn't risk the xiaflex treatment with only 30 degree curve if that was all that was going on. I would take measurements of my own, I do think this disease is progressive. I would recommend you research stretching and VED.
  I'm no expert but you asked for opinion. Good luck with your disease management.
Age - 65
Peyronies of unknown length of time
70 Deg curve 10-11 o'clock
first 2 uro's offer for xiaflex and referral
incision/grafting 12/18/18, Implant 9/11/20

samsung

I am mostly upset because this has reintroduced a feeling of abject helplessness. An implant is a last resort, but at least it would end all this horror. And maybe at some point in the future I would learn to live with it. But this just perpetuates this futile fight forever now. Unless it suddenly goes to 90 degrees. Then I am allowed to have an implant. That makes no sense to me.

I know in my bones that all my efforts are in vain and that this is what it is. And will probably get worse.

My only out was an implant. And I'm being told to suck it up and deal. Phuck that. You can't have a crooked dick. This isn't a condition that can be tolerated. This is my soul and my manhood and my future and my life. I realize this is not a healthy attitude. But my thoughts can't be changed. I am not like other people.

Most of you don't have calcification so you have hope. I don't. I feel like I am marooned on another planet.

45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

samsung

More opinions please.

I can't cope with having to deal with this for possibly many years until it gets worse enough to get an implant. Because that is essentially what they are saying. I don't want the curve, period. And they won't agree to get rid of it unless it impedes function. And I know that no therapy on earth is going to get rid of it once the plaque calcifies, which it has. I feel like I've been condemned. This traction takes 6 hours out of my day. Sitting in a chair like a goat tied to a tree. I can't do that for a decade.

Now, I realize this is going to sound crazy, but I am tempted to try to make this worse, so I can get an implant. Twist my erection around. Hit it with a hammer or something. I can't sit here for a decade waiting for it to get bad enough. Me and this curve cannot, will not live in the same body together.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

jj21

Look I know it's hard but try and stay positive. Keep it in the back of your mind that at the very worse you can get an implant eventually.

How is your erectile dysfunction? Are you able to have sex with the curvature? Have you tried pentox or viagra/cialis? VED/Traction?

I had my symptoms around the same time as you, june 2018 with a major semi erect curve and about 20-25 degree fully erect curve but my erectile function was quite bad until I added Cialis and Viagra. After VED and Traction slowly I've seen improvements. Sex is manageable and getting better.

Hang in there and try and have hope. This disease is terrible but you must accept it as a part of you and not let it control you.

Focus on the known treatments that have worked for people here and keep hope in the back of your mind that in the worse case you can get an implant and resume a sex life. We can't change the past so there's no point dwelling on it and thinking ourselves into depression so stay positive it can get better, I'm seeing improvements with consistent treatment and so will you.

I also recommend going through NeoV's channel on youtube some great advice there.

JJ

34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).