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Author Topic: Waveboy's journey in getting am implant.  (Read 433 times)

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Waveboy

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Waveboy's journey in getting am implant.
« on: April 10, 2021, 10:38:18 AM »

This is my journey through my eyes and emotions.

My main dx is that I am a hemophiliac, with the background fear of any bleeding from any work or procedures done on me. My secondary dx is PE and Peyronies disease.

The main part of my lifetime worries- Part 2
I have been suffering from Erectile Dysfunction, the Premature Ejaculation (PE) part, since a teenager. It got progressively worse over the years. Trying the different meds, condoms, sleeves, SSRI meds, beta-blocker meds, sex therapists, and psychologists. Nothing changed. Every time I got a new thing, I would get my hopes up, to be knocked back down again.  Finally, I just accepted it. Every 5 yrs or so, I would repeat most things above, but nothing changed. I got married to a wonderful woman who is supporting me through all of this.  I am blessed and thankful for her. I've been married for 17rs, and after our first 2 years, my issue with PE started getting worse -by that, I mean, going from 3-4 mins to less than a min to sometimes before penetration. We are working through this together.

Part 3. Now at 17 yrs of marriage, this bend in my penis started in June 2020 and just kept getting worse. By Aug, I started blaming my wife for us not being able to have sex comfortably without the bend getting in the way. This was my fault, not hers. Which I have apologized for!. It came to Christmas and New Years', and the bend got so bad we can't find a position to get in for sex. Not the Christmas present or the start of a new year that my wife or I wanted.

Next, we placed a call to our primary care doc and had to wait 3 weeks to see them.  Then another to see urology to dx Peyronie's. While waiting on an apt for urology, my wife and I look up treatment, and all I saw was shots and bleeding and not to do it with a bleeding disorder. And, it could come back, and I was like, WTF!!!! And after finding this site, my wife and I studied, and we saw the option of an implant!

Next, we went in to see urology. It was an ok apt. He wanted to try injections. I was like, no. He wanted me to try all the other things again to fix PE. I was persistent for a referral for an implant because he had never done one, much less just started injections testing. Then his comment just before he said he would try to find a reconstruction guy. He said his recommendation was to live with what I have and use it the best I could before any surgery. But he didn't say that about injections. As of April 9th, I still have a massive bend and PE, and I am waiting for the doctor to call me with a referral.

Til later, Waveboy out
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
History of Erectile Dysfunction and PE - Meds stopped working
Peyronies diagnosis 2/2021
Waiting on a referral for implant surgeon in Fla or GA

Mikel7

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Re: Waveboy's journey in getting am implant.
« Reply #1 on: April 10, 2021, 12:07:35 PM »

I wish you the best on this journey! I have also had 2 double hernia operations left and right  with complete fiberglass mesh in my abdomen.  It also sounds like you have a great relationship with your wife - this is also very helpful.  I do know that Hawk would be the one for questions on an implant . I also believe that Dr Eid in New York is the one Dr that comes highly recommended as far as implant surgeons go. So please keep us updated on this  :)   Mike
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Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

TDix

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Re: Waveboy's journey in getting am implant.
« Reply #2 on: April 10, 2021, 02:31:27 PM »

Hang in there bud.  What insurance do you have?  You may not need a referral.  I too have suffered with PE.  It’s not fun.  I will say an implant helps in that if you finish too soon it doesn’t affect your erection.  You are still hard as a rock, for as long as you or your wife want.  Feel free to PM me or ask questions here in your thread.  We are here to help
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47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Waveboy

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Re: Waveboy's journey in getting am implant.
« Reply #3 on: April 10, 2021, 06:20:40 PM »

Thanks Tdix. My insurance is a PPO but the referral is from my urologist to a specialist in reconstructive urology with access to a competent hemotologist. This is what makes my situation so complex. I will likely have to be in the hospital for about a week+ just to get my clotting factors stable. The most dangerous part of surgery will be the 8-10 day range, after surgery, when clots start breaking lose and I could possibly begin to bleed again.
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
History of Erectile Dysfunction and PE - Meds stopped working
Peyronies diagnosis 2/2021
Waiting on a referral for implant surgeon in Fla or GA

Waveboy

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Re: Waveboy's journey in getting am implant.
« Reply #4 on: April 28, 2021, 06:48:27 PM »

So I waited 2 weeks, after driving 6 hours round trip, to make a comment due to how my apt went with the reconstruction urologist/ surgeon. I went in with a referral stating patient wanted different options  and discuss implant. So resident doc comes in and ask me my history and once I told him n showed him pics of penis with start of bend  cause it was semi hard and he measured flacid penis. The resident told me that I had bent my penis tryng to have wild sex with my wife  and forcing a flacid penis in her which damaged my penis which was NOWHERE in my statement. Then he left and the surgeon came in and all he kept saying was take the shots because u don't want grafting due to your bleeding issues or we can stitch your penis the other way from the curve  not to mention stitching 2nd location due to  2nd curve. I told him I didn't want shots due to bleeding everytime shot goes in several locations twice a week for 8 + weeks and his response was you just need to hold pressure where the shots are so it doesn't bleed! He is such a dumbass! 48 yrs of dealing with hemophilia for a surgeon to tell me that🤬. Pressure does no good if I'm bleeding. My blood can't clot without an infusion of clotting factor.
Then doc says you don't qualify for them anyway due to only having 20%curve. And my wife and I were like how did u get that and he said from the pic u brought. Which we told him it was half erection. He still didn't want to do test to see full erection full bend/curve. I had to ask him about implants and he said I didn't need to go that way because they didn't work well and I would be in every 6 months to replace parts. he then went right back to injections and saying that was my pathway to go. I then ask what was the fix with injections and he said anything over 10 degrees was a success. So I ask him if the curve was  45 and higher and I couldn't have sex, and shots got it to 35 but I still couldn't have sex that was a success to them? And to add the scar tissue could come back as another curve. His final statement before I left was work with what u have and come back when you decide about shots. Also, he informed me the PE was not considered erectile disfunction.
Again 🤬
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
History of Erectile Dysfunction and PE - Meds stopped working
Peyronies diagnosis 2/2021
Waiting on a referral for implant surgeon in Fla or GA

Hawk

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Re: Waveboy's journey in getting am implant.
« Reply #5 on: April 28, 2021, 08:28:18 PM »

Waveboy, so what did they do after you punched him out?      :) ;D :) ;D

Don't be offended.  I know it is not funny, but you cannot change it, so you have to laugh at the damned absurdity.  My understanding is by his own report; he only does 30 or fewer implants a year.  I would not let this man touch my penis to do an exam much less surgery.  It sounds like he did not even offer an exam, much less a Doppler Sonogram.  Next, any implant surgeon must know that they do NOT replace parts of an implant— it is sad that some men no doubt place their confidence in him and follow his recommendations.

Now the good news.  You have just successfully completed one essential step that gets you closer to your goal.

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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

Waveboy

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Re: Waveboy's journey in getting am implant.
« Reply #6 on: April 28, 2021, 09:26:45 PM »

So Hawk. I think my wife could have done the punching n prob felt better😁.

I agree it was a next step in the process. I had my mind wrapped around that going in. I'm just floored and pissed that doc never read the referral and acted like he knew all about hemophilia cause he stated he just did a case with a patient that had that. I quickly responded that it was a simple case n not a big bleeding area and he was like you're right. Shocker, the bleeder knows better!

Then when he kept going on against implants not working is when my wife was like, how many do u do?  He answered less than 30.  At that point, I was glad the resident did the exam. Not! He was just as lost, But look at the teacher.

Back on topic. I'm going to change our approach with these docs cause they not reading what I'm putting down!

I left thinking no doc knows how to cover this unless they been through it. Because u know they go home after a visit like that and have the option for sex and we don't. That will piss u off enough right there.

Tks for your comment and your site to help get through it all. Sorry I'm not as detailed as some of these post
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
History of Erectile Dysfunction and PE - Meds stopped working
Peyronies diagnosis 2/2021
Waiting on a referral for implant surgeon in Fla or GA

Hawk

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Re: Waveboy's journey in getting am implant.
« Reply #7 on: April 28, 2021, 09:51:50 PM »

Totally knock the Premature Ejaculation out of the discussion.  It will have zero bearings on the solution you need.  Any fact that is not relevant will just confuse the issue.

I would stick with
1. I have Erectile Dysfunction - Oral meds do NOT work.  I either cannot get an erection or cannot maintain an erection if I manage to get one.
2. In the rare instances in which I do temporarily get an erection it is curved at 40 degrees or greater.

No one makes you have sex to see how your penis works.  Keep it very simple.  What you and your wife report "is the case."
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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

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Re: Waveboy's journey in getting am implant.
« Reply #8 on: April 29, 2021, 08:03:04 AM »

Hey Waveboy. I was reading your post. You are doing the right thing in searching for a solution to your problem and looking for help. But it looks like you are not having the medical care that you deserve. And especially with penile implants, first time installation is key. 

Have you considered some of the top doctors often mentioned here? May be very far, but you know you would be in good hands!

Also give this website a good look. I heard several people mentioning it already.

https://surgeo.com/penile-implant

https://surgeo.com/qualify-surgeons

Waveboy

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Re: Waveboy's journey in getting am implant.
« Reply #9 on: April 29, 2021, 09:50:29 AM »

Tks pfract for the sites. My wife an I will look into it.

Tks hawk and yes they not getting pics of me n wife having sex! They ask for top n side pics , but now it's obvious they use those measurements instead of doing it correctly. they don't get it that once u get that erect u can't keep it there much less say hold on let's get a picture
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
History of Erectile Dysfunction and PE - Meds stopped working
Peyronies diagnosis 2/2021
Waiting on a referral for implant surgeon in Fla or GA

Pfract

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Re: Waveboy's journey in getting am implant.
« Reply #10 on: April 29, 2021, 02:23:13 PM »

Good to know Wave. Also, an advice...  Don't use Paul Perito. Never. Run away like the plague, even tho he's near you.

That website lists doctors that charge that fee, and only that. That's what you pay. Complications are also included. Read the faq. Very nice.

Waveboy

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Re: Waveboy's journey in getting am implant.
« Reply #11 on: April 29, 2021, 07:25:25 PM »

Pfract please message me on last post when I can chat with u. Tks wb
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
History of Erectile Dysfunction and PE - Meds stopped working
Peyronies diagnosis 2/2021
Waiting on a referral for implant surgeon in Fla or GA

Waveboy

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Re: Waveboy's journey in getting am implant.
« Reply #12 on: May 06, 2021, 05:45:12 PM »

So starting around 2 today, I completed a full circle from starting with my primary doc in Feb. about Peyronies, which went almost 2 months to get to urology, that couldn't help. Urology sent me to surgical specialists. He was against an implant and was for injections that would make me bleed and get hematomas which the surgeon quoted "just hold pressure," which doesn't help my bleeding disorder! Both the specialist and urology docs ended the visit with the statement, "work with what ya got!"  They didn't listen to any history or that I couldn't have sex because of bend and pain in my penis, so what the hell could I work with. Back to today, to primary, that seems to be the only dr willing to listen. My primary says this is another step closer to fighting the insurance company. So I have to stay strong with my emotions and continue the insurance battle. But I have to give tks to my bride for moral support and helping argue with these companies. I am sorry for all the guys out there without support. The support is in this forum. And just to say, hang in there and don't give up. The struggle is real physically and emotionally. And thanks again for this forum! Til next battle, take care. Yes, I'm one step closer!!!!
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
History of Erectile Dysfunction and PE - Meds stopped working
Peyronies diagnosis 2/2021
Waiting on a referral for implant surgeon in Fla or GA

Hawk

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Re: Waveboy's journey in getting am implant.
« Reply #13 on: May 06, 2021, 08:36:37 PM »

You are right.  It is exactly that, one step closer.  If the insurance company and doctors knew the team they are up against, they would save themselves some work and throw in the towel.  I am not sure how long the struggle will be, but I am betting on Waveboy and  BoykinLady !!!
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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

Stepone

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Re: Waveboy's journey in getting am implant.
« Reply #14 on: May 07, 2021, 10:46:10 AM »

Waveboy, so sorry for what you are going through! I will pray for a good outcome for you. I know a little of your frustration, almost 7 years ago I found this site snd it changed my life.
Stay strong and you are blessed to have such a supportive wife.
You both sound like wonderful people.
Prayers and blessings for both of you towards your goals.
StepOne
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Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC
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