Long time Listener, First time Caller - Write up for Dr. EID apt. last week

[njelbowdrop]

Hi,
I first want to thank the creator and Moderators of this forum for providing the most valuable open-source resource in the world for Peyronies.

I spent hours upon hours learning about my situation on this website and saw Dr. EID in NYC last week. Since there is no dedicated thread to Doctor Visits, I figured I would share my write up here.

This is is with Dr. EID in New York City. Dr. EID is a Uroligist and surgeon who has treated peyronie's patients for almost 40 years. He is regarded as one of the top implant doctors in the world, specializing in Plications and Titan implants.  I'm about to do my best to go over everything we discussed. My questions and his answers as well as personal thoughts.

I scheduled an appointment a month ago, I do not have insurance and was ready to pay out of pocket. The visit costs $350. They asked if I wanted an ultrasound/sonogram. Thought about it and said yes. That is an additional $1075.

I get to his office, I'm not scheduled for a sonogram. A little upset because we discussed it in length, but the office kept saying "just speak to the doctor then we will see if we need one". My wait was very fast, about 15 minutes.

The Doctor is a really good person. I told him the community appreciates him and he was humble. He had some jr. Doctor shadowing him. Nice guy as well. We start talking about my history, how I got peyronies.

Told him all about my experience with Finasteride. It shriveled my dick, no erections. I quit and one month later my dick is curved. He was surprised, maybe he's never heard of it before but listened, didn't question me. He asked me about cholesterol, diabetes, etc. family history but I don't really have that in my family, nothing significant at least. I DID tell him that I have had significant Erectile Dysfunction for half my life (I am 39). One day when I was about 21 in college everything stopped working without Cialis or Viagra (looking back, could this be a plaque injury without deformity?)

He asked if I had pictures. I didn't, I was expecting an ultrasound. Oh well.

Question – Can an ultrasound tell if I'm in Acute phase or chronic?
EID – No. We just assume the acute phase ends after about 1 year. WE (the medical community) know very little about this condition. I have seen patients worsen after a year. I have seen patients improve after a year. Hard to tell if a treatment helps someone's condition or worsens it, sometimes.

I told EID I suffered a minor trauma from manual traction (Neoman's method). While I was on Cialis and became erect while performing manual traction. Ache in my Prostate, Testicles. Lasted over a month stopped traction entirely.
EID: The Penis is most fragile in it's erect state. 1/3 of your penis is actually inside your body, and pain from trauma can even be felt in your backside. Can last 8-12 weeks.
This is exactly what I was dealing with. He said to be careful, avoid injury and traction until you heal. This WAS NOT peyronie's pain.

Question: I have a 30-35 degree upward curve when erect. Can I have sex? (I haven't had sex with it yet).
EID: Absolutely. It may even feel better for the girl. That kind of curve is a good angle as long as you have quality erections and you are careful with rough sex/potential injury.

Question: Are you a Pennimaster Pro or Restorex guy?
EID: I used to prescribe Restorex all the time to patients. Perscribed soo many devices, I know the doctors at the Mayo clinic that were involved in the clinical trials and created the device. The majority of our results were not very encouraging. Not much improvement with patients.

He went on to say that he feels many of his patients probably didn't do a full 90 minutes a day, and its challenging as many patients found the device to be painful. I found it interesting that insurance companies covered the device although I heard about this before.

I told him I have Pennimaster pro, work from home and use it 6-8 hours a day. I don't have pain, I had erectile dysfunction from Peyronies and probably lost erectile length and a curve. I told him I have had Erectile Dysfunction for almost 20 years and that the device has worked wonders for my Erection quality and that I have better erections now than I had in the last 10-15 years. Both he and his aide were impressed with my results and attribute that to long hours of traction. He asked if I have issue with blood filling at the end of my erect penis? I said yes I have narrowing at end of penis (no hourglass) and lack of bloodflow in that region until I did traction. Aside from erection quality I'm not sure if I have improved curve or length, but I haven't worsened either.

Told him my every day oral therapies:
ALC
Cialis
L-Citrulline
L-Arganine
COQ10

He just kind of shrugged his shoulders. As someone who has been treating this issue for 4 decades, he came across as someone who has seen it all and very little success outside of western medicine procedures.

Topical Medications? He has never seen a benefit.

Do you recommend VED? – He does not. The small amount of time that the device is used has not shown significant benefit to him and you can injure yourself, make your erections worse. Guys can overdo VED and Traction. He is just not a fan.

Wanted to bring up heat therapy but didn't bother.

On his website I asked him about his list of medications:
Potaba
Vitamin E
Tamoxifen
Colchcine
Pentox
He laughed, didn't realize this was still on his website and said these are all outdated medications. Before traction and Xiaflex they tried all these therapies with little to no success.

Was wanting to ask him about a prescription for Pentox. He didn't recommend it.

INJECTIONS.- Verapamil or Interferon? Used them for about 20 years with little success. Verapamil – might see slight improvement after 2 injections but after that, not really. Was not optimistic with it.

Xiaflex? This is his go-to before surgery.
I am personally concerned about side effects from Xiaflex. He feels this is the most effective thing on the market and feels even with my "small" curve that I would benefit from it. I asked about side effects and he said in all the years he's used it (I wanna say it went on the open market in 2015) he's had 2 penile fractures from patients. You need to be very careful. The ultrasound will tell him where to inject. Usually 2 Rounds.

I said some guys report lost length after Xiaflex, or their curve worsened or maybe more Erectile Dysfunction....what about that? He said if used properly, its meant to break up plaque, so it usually does the opposite. "They say 1/3 of Xiaflex patients improve, 1/3 stay the same and 1/3 see worsening symptoms but this is bogus". We can't tell if patients are naturally going to improve or get worse. He re-iterated: We know very little about this condition.

To him, this is the most effective drug he has seen for peyronies, and it's insured for Americans so In his mind iit's like "what do you have to lose?". I didn't want Xiaflex so this is something I have to digest. I'm also not insured, I would have to buy insurance as Xiaflex is minimum $20,000.

I am getting blood work done to check Testosterone and other vitals. I asked about Testosterone Replacement Therapy and something called HCG because I had a bad reaction to Propecia and while that has mainly subsided, the guys in the Propecia forums said that stuff MIGHT help. He talked to me about TRT and said be very careful. It can help, but it makes your balls shrink "atrophy" and they don't come back to normal. So having children can potentially be a challenge. He also said the range that your Testosterone score is on is also bogus. Comparing you to teenagers on one end and Seniors on the other.

Final Questions for Alternative Medications:
I mentioned PRP shot and Gainswave (shockwave) therapy. We both agreed they are pretty bogus medications. He called PRP a scam, because it is.

Have you seen Stem Cell Therapy be used to treat Peyronie's?
EID – Not at all. Doesn't have a use case.

What do you know about Dr. Morganstern's Clinic in Atlanta and their non-invasive technology called EXOSURGE?
He never heard of it. His aide looked it up and was impressed and curious. We talked about them doing 1 clinical trial so far and going for FDA approval in 2025. He said there are usually 3 clinical trials and once you see the results after the 3rd trial then you take notice. I'm very interested as early results were promising and it's marketed as Non-Invasive.

He had to run out the room. I talked his ear off. A nurse took me and brought me to an exam room. He comes in 20 minutes later. Performs a physical exam. Psychologically it felt awful.
His first reaction "Wowwww this is a lot of scar tissue.". He was surprised at how many different plaques were in my penis. I became an example for science, his aide puts on gloves and asks to check too. Fkn sucked. Not their faults of course.

He was surprised at my LACK of symptoms. No pain, less than 45 degree curve. Erection Quality not too bad. He politely said things like:
"You must have lost some length when erect". He's probably right. Nothing extreme but I probably have lost some length when erect.
Together they were pointing out where my plaques where AND where my bend was, and indent. He says he sees scar tissue like this in older men.

After about 2 minutes he takes the gloves off and recommends Xiaflex. First a sonogram appointment, then to schedule Xiaflex.

So the whole day was a good convo but tough at the end. Worse situation than I thought. Already kind of bummed that they didn't schedule me for a sonogram that day. I get that, as a new patient usually they don't do that so I just kind of shrugged it off. Now I have to figure out what to do next. Luckily I don't have pain from peyronies so this isn't an urgent issue. Not trying to rush to get Xiaflex either, although sounds like it's on my horizon.

Thanks guys!

[Stabler]

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[Pfract]

This was such an amazing account of an experience. You seem honest in your story and some points I want to talk about on a lengthy post. I will get back to this thread as soon as I can to do so.

Please have a look at these links in the meantime:

https://www.bmj.com/content/366/bmj.l5047

https://www.youtube.com/watch?v=kzb5PJBoawA

https://pubmed.ncbi.nlm.nih.gov/32033719/

https://www.sdsm.info/male-issues/post-finasteride-syndrome

Also check out Dr Irwin Goldstein in San Diego, CA and Dr Landon Trost.
 

[njelbowdrop]

Thank you Pfract! your words as well as others on this forum helped me accept my situation so I can begin to improve. Both mentally and physically.


My time with Dr. EID was very important although I'm not thrilled to hear about how much scar tissue I have. Surprising giving my "lack" of symptoms.

Think I'm going to figure out a way to get a sonogram and talk to Morganstern clinic in Atlanta and Trost as well.

Thank you for these resources for PFS. I did suffer from PFS and I'm fairly certain my curve is somehow related. Propecia ravaged my body, aching, arthritic, painful joints for over 6 months + peyronies.
Luckily the joint pain just subsided.

 

[Mikel7]

I would make a wager that since your PFS that your free testosterone is low as with many other sufferers. I also disagree that with testosterone replacement, not steroid abuse, that your testicles will shrink. I have been on full hormone replacement for almost 20 years now and my testicles remain the same size. Abuse and replacement are two different things. Finally TRT saved my life in more ways than 1 and if you need it you will just have a difficult time finding a physician who is knowledgeable and experienced in this field.

[njelbowdrop]

Mikel!
Thanks for chiming in. Big fans of you and Pfract and all your support.
Interesting you say that about potential Testosterone levels after PFS. I really need to test for that. Dr. Eid was going to test me, I just don't have the funds to see the doctor again at the moment but I hope to soon.
I had mild symptoms of PFS compared to these other guys in the support group, and I am grateful. I had severe joint pain which has all but subsided, so if symptoms subside would I still have potential Testosterone (or other hormone) Deficiency?
That's what I will have to test for and figure out. Many guys in the PFS support said they benefitted from HCG or TRT therapy.
I think Dr. Eid was just warning me about potential TRT side effects. It was less about the physical shrinkage and more about challenges of having children in the future.

I see you went to Dr. Levine and I became fascinated with his research especially with the prolonged stretch for traction. He's the reason I got the PMP which I have great results with and I'm intrigued since he is one of the last experts out there that prefers Verapamil. May I ask why you haven't gotten those injections from him? Perhaps you did and just never updated your profile.
Cheers

[Mikel7]

Thank you for the compliment! I do enjoy helping other men with this awful disease.

It is always a god thing to test your testosterone levels since you were on finasteride. For your age your total testosterone levels should be around 800-900. Dr's will tell you that a level of 300 or 400 is good and won't even question you if you are still having symptoms. All you really need is a free testosterone test. If children are a concern in your future you may just opt for HCG therapy. You may be able to get your levels up with that. The only downside to HCG is the current cost and it can generate excess estrogen in a man, which is not good.

Yes Dr Levine is my Dr but I decided against the verapamil and have just done traction and VED with good results - it just takes time though.

[njelbowdrop]

Hi Mikel,


Hope you have been well. Has Levine or any doctor you spoke with ever brought up TRT or HCG therapy and it's effect to Peyronies? I guess since I took propecia and developed a curve, I'm wondering if a drug that could potentially create Estrogen in the body is likely to have a similar adverse impact on sexual health.

Thanks