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Morien

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Introduction from Phoenix, Arizona.
« on: June 01, 2018, 11:01:51 PM »

This is my first experience with an online forum so please bear with me and I'll try not to ramble on too long.  That being said--I've a lot to get off my chest.

I'm a late middle-aged, Caucasian male.  When I was 28 years old, I was diagnosed with high blood pressure, and was started on medication to help control that.  At the time, I was slightly underweight, diet and exercise didn't seem to play a role in the development of the disorder and it was decided that was simply a part of my genetic makeup. 

After about a decade of being on various medications, I began experiencing difficulties with achieving and keeping adequate erections, presumably due to the medications.  The erections were soft and there a few instances where I suffered a few painful "pops" during intercourse, where the penis bent painfully and there was pain and swelling. 

After some indecision, and tired of the nagging of my wife to get something done about it, I reluctantly decided to broach the subject with my primary care physician.  Back then, most of the advice I could find said to start with one's PCP.

So, I scheduled a non-urgent appointment and mentally braced myself for a difficult conversation.  When the day of the appointment arrived, I went to the doctor's office with mixed feelings of dread--but also of hope there might be some sort of easy fix.  Maybe my meds could be adjusted, or reduced (this was before the little blue pill came into widespread use).

However, after the preliminary pleasantries were over after the doctor entered the exam room, when I mentioned the reason for the visit was the fact I was experiencing some "impotence," issues, his face flushed and he looked away and in a low tone of voice (as if he feared someone might overhear) he warily said "I don't treat those sorts of issues.  You need to see a urologist." 

I was mortified at his reaction and felt my own face flush with embarrassment at the apparent faux pas I had committed.  He asked if there was anything else he could help me with, still without looking at me, and I said no. "So do you want me to give you a referral?"  he asked.  I shook my head no in response.  I simply wanted to leave as quickly as possible, and it was only while I was paying for the co-pay at the front desk that I felt my reddened cheeks start cooling off a bit. 

It was about this time an area of plaque began forming in the top side of the penis, and when I could achieve an erection, there was a sharp curvature upwards, with dimpling on one side.  I had also been using a vacuum device with a ring to help with erections, I stopped using that. 

My wife became increasingly dissatisfied with our marriage and she began an affair with a co-worker and filed for divorce.  I was in dire financial circumstances for several years; I rented rooms on a month-to-month basis, drove old cars and scraped by as best as I could as I was saddled with spousal maintenance support payments. 

Fast-forward one decade.  I had finally paid off my ex-wife in full and I bought a decent car and was beginning to recover financially.  I was also looking around a little and was thinking about how nice it would be to have some companionship, but the issues with the penis held me back from getting too close to anyone.

I knew I mostly likely had peyronies disease (probably due to repeated injuries from using the vacuum device), and times had changed.  I decided to once again seek treatment.  I inquired of my current PCP if there was anyone he could refer me to.  He calmly gave me a name and address of a urologist in Scottsdale. 

I contacted the urologist's office; they were accepting new patients but I would need to wait several weeks for an appointment.  I went ahead and got scheduled. 

I arrived at the complex early, and after paying my specialist co-pay of $50, waited for what seemed an interminable period of time.  I was finally led back to an examination room.  After a while, the urologist came in, a fairly young man.  He asked some general questions about my health and read over some of the paperwork I had filled out online prior to my visit.  He asked for the reason for my visit that day (I had already given the reason for the visit to the person who scheduled the appointment and the reason was also on the paperwork). 

I felt a twinge of annoyance but I politely answered that I was there because I had peyronies disease.  He asked when I had been diagnosed?  I replied there had not been an official diagnosis, but I was 100% from the symptoms what the situation was. 

He conducted a brief examination at that point; he confirmed it was peyronies and noted there was a large area of plaque.  He also noted that I had dual hydroceles and the prostate was enlarged but there were no nodules.  I told him annual PSA assessments were within normal range.

After I hauled my pants back up he told me he personally did not treat peyronies, but a partner in the practice--at a different location, did treat peyronies and he gave me that doctor's name.  So--I left feeling I had wasted my time and money. 

I went ahead and scheduled an appointment with the other urologist.  I had to wait several weeks to get in, as their practice was very busy.

At last, my appointment arrived.  The urologist came in and was chatty and pleasant.  I felt a few stirrings of hope--he said we could address the erection issues quite easily with injections.  He examined me briefly and said the area of plaque was extensive and he recommended surgery to correct it. 

But first--he wanted to address the hydroceles.  And he insisted that had to be a separate surgery, because of the risk of infection.  He sent me to a separate facility where an ultrasound was performed on the scrotum.  The imaging results revealed large hydroceles had formed as the result of a vasectomy I had when I was 35.  So we scheduled a date for the surgery.

In the meantime, he wanted to address the erection issues.  He prescribed alprostadil and instructed me to get the prescription filled and then to return to his office with it. 

Alprostadil is not covered by my employer's health insurance plan, so he sent me to a pharmacy over in Sun City (the west side of the Phoenix metropolitan area) where the medication was compounded and dispensed at a greatly reduced price (about $150).  The pharmacy is some 30 miles from my home--as I arrived at home I had a call from the pharmacy--they had neglected to provide the syringes.  So I drove out there again to retrieve them.

At my next appointment with the urologist, after giving me some preliminary instructions, he injected the alprostadil into the side of my penis with the lowest recommended dose.  It stung a little, but there was no sensation after that.  He told me to massage the medication into the penis, then left saying he would return in about 15 minutes.

I massaged the injection site and the surrounding area for several minutes, without noting any reaction.  I eventually gave up, pulled up my pants and sat in the chair reading on my phone.  The 15 minute period came and went, a half hour passed, forty-five minutes, an hour.  I zipped up my pants and fastened my belt.  A few minutes later, the urologist finally came in.

"Something came up," he said, "Any reaction?" he asked. 

"No, none," I responded.

"Well, the dose needs to be higher," he said, "Try again tomorrow, with the next higher dosage amount.  The goal is to achieve an erection, with the smallest amount possible."

I told him I would try it out, and left.

Over the course of the next several weeks, I tried various dosages of the alprostadil, to no avail.  It became clear to me the alprostadil was not the answer.

Three days ahead of the scheduled surgery, I was contacted by the surgical facility.  Because I have atrial fibrillation (AFib) they were requiring a release from my cardiologist for the surgery, and I had to discontinue the Xarelto I was taking.  I called, and emailed the cardiologist's office several times--I could not get through to the cardiologist and no one from his office would contact the surgical center.  The afternoon prior to the surgery, I finally admitted defeat and the surgery was cancelled.

I went back to the urologist's office several weeks later.  I had decided that perhaps a course of injections with Xiaflex was perhaps the answer--no cardiologist needed to be involved for that.  But Xiaflex was not covered under my insurance plan (in fact, no medications, no treatments for any sort of erectile dysfunction are covered under the insurance plan). 

However, I was told not to worry, as the manufacturer of Xiaflex offered a special price reduction program!  I filled out a questionnaire, and the urologist's office submitted the application on my behalf.  About two months later I received a call from the urologist's office--my application had been approved.  However, even with the rebates, each vial would cost me $3K out-of-pocket, plus the costs of administration.   I estimated the recommended course of treatments would easily run into about the $25K range.

I immediately cancelled my application for the drug--it had not yet been shipped, and I made it clear to the person I was dealing with that I did not want the treatment, and I would not pay for the drug if it was mistakenly shipped as she repeatedly told me once the vials were shipped they could not be returned and there were no refunds.

So, that is where things stand now.  My attempted surgery was for July of last year; I've not attempted to follow up.  I've seen the cardiologist once since then--he said there were no records in my file of my attempts to contact him, nor were there any records of the surgical center trying to get in touch either.  He could not explain what had happened.  He asked what the surgery was for, and I told him it was to correct dual hydroceles, and that later when I was healed from that, I wanted to have surgery to correct the peyronies disease--he smirked a little at that and shook his head.  I'm not sure I will be going back to him--in fact, while I'm typing this I've decided I'm not going to.  There are plenty of cardiologists out there, and the AFib isn't that serious right now.

So--if you've stuck with this, and you've read this far--what do you think?  Should I keep trying?  If you happen to live in the Phoenix area, could you recommend a particular urologist?  I've spent about $1K so far in co-pays, I'm willing to spend a bit more if I could find someone that would help.  Thanks for allowing me vent.   

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LWillisjr

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Re: Introduction from Phoenix, Arizona.
« Reply #1 on: June 02, 2018, 10:33:41 AM »

Morien,
I read your entire post. It is actually well written and I actually couldn't stop ;-)

I really thing you are dealing with 2 different issues. I for one do not believe Peyronies directly causes ED. And I think you need to approach is as 2 different issues. Once we get Peyronies, the mental impact can be devastating. For a time when I would start to get an erection, all I had to so was to think about my curving erection and that would pretty much be it.

I am a bit surprised that your one urologist sent straight to injections instead of suggesting Viagra or Cialis. You can buy generic online and I guess that would be my first recommendation if you haven't tried this.

Do you have an estimate of your degree of curvature? Some guys have had success using VEDs or traction to help reduce their curves some. The reason I ask is that curves of about 30 degrees or so shouldn't cause an issue with intercourse. We may not like the change in our erection appearance, but it will still work. Assuming you can overcome and achieve an erection.

Above 35-40 degrees the curve will interfere with intercourse. So if you are able to try traction and reduce your curve say 20 degrees or so then you can get back under that 30 degree threshold.

On the extreme end if your curve is say 60 degrees or more, than I very much doubt that traction, VED, or Xiaflex injections will get you enough improvement to be satisfied. It is rare to get more than a 30 degree curvature reduction from these techniques. I always say surgery is a last resort, but if you curve is upwards of 70 degrees or more then I think the reality is that surgery is probably the  most likely option. And there are various surgical techniques depending on the surgeon.

Of course having medial insurance that covers any of this is very important. We all want to have our curves fixed, but not everyone has $20-40k to drop out of pocket to get it done.
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Les - 10 yrs Peyronies Disease free
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Morien

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Re: Introduction from Phoenix, Arizona.
« Reply #2 on: June 02, 2018, 02:33:03 PM »

Hello Les,

I agree with you; I am dealing with two separate issues.  I believe the ED was brought on by medications intended to control the high blood pressure—which from my late 20’s has been resistant to treatment.  I currently take two different drugs for that. 

In turn, the ED resulted in situations where I damaged the penis repeatedly, which lead to the formation of scar tissue and the plaqueFibrosis and calcification have set in at this point.

Looking back, I believe now that in my ignorance I had some unnoticed warning signs my body does not respond appropriately to trauma.  I had some small skin cancers removed from my left leg, and the skin formed thick scars, called keloids, where the cancers were removed.

Also, when I had the vasectomy, there were missed warning signs there as well.  The surgery itself was without complications; granulomas formed on each side, which was to be expected (they are caused by an immune response to sperm that leaked during the procedure).  However, about six months afterwards, the hydroceles formed and have bothered me for decades.  I have an occasional “blowout,” in the epididymitis on one side or the other, and I think those fuel the hydroceles—again, another indication my body’s reaction to trauma is inappropriate and extreme.

I don’t know the reasoning behind why my urologist went straight for injections instead of oral medications.  I am taking several different medications, for both the HBP and the AFib.  Perhaps he didn’t want to add to the mix.

The curvature is at 45 degrees.  The area of plaque begins just behind the glans and extends halfway up the shaft.  When I use a VED to get an erection, the penis twists upwards and to the right, and there is an indentation on the right side behind the glans.  Toward the end of my marriage, intercourse was becoming painful.

The procedure recommended by the urologist was a plication procedure.  He said I would lose up to an inch in length but it would offer a permanent correction, which I felt was acceptable.  I would be happy with simply being able to achieve penetration without any pain.

The problem with insurance coverage is immense.  My employer’s plan specifically disallows any drugs or treatments for ED.  However, per the urologist, because peyronies is a disease, the insurance company would be required to cover it.  I have high deductibles to meet and would expect to pay out about $6K for any surgical procedures.

There are serious financial dangers associated with any medical procedures performed in the state of Arizona.  The surgical facility the urologist runs is out-of-network, but he said they would accept in-network payments that the insurance company would be willing pay out and write off the difference.  I would simply have to take his word for that. 

And I found that the anesthesiologist was also out-of-network, but again, I was assured he would accept any in-network payments and write off the rest.

I ran into a situation at another surgical facility several years ago when I had a colonoscopy—the anesthesiologist was out-of-network—and she ended up balance billing me for over $2,600 and I was turned over to a collection agency. 

I discovered too late that in Arizona many anesthesiologists, radiologists and nearly all emergency room doctors, are out-of-network because they refuse to contract with any of the insurance companies.

Arizona has recently tried to address the “surprise” balance billings issues with legislation requiring arbitration for balance billing disputes—but the amount in question has to be over $1K, and the laws do not go into effect until January 2019. 

My current plan is to proceed with caution.  As the Xiaflex is so costly (I am still trying to figure out why each vial is $3K, even with the rebate) and the results are not as certain as surgery, I’ve decided surgery is the only option for me.  But I need to wait until after January 2019, which is only several months in the future.

I’m planning on scheduling an appointment with the urologist towards the end of the year, to have him check on the hyrdoceles and to reopen dialogue on that surgery.  In the meantime, I’m either going to make it clear to my cardiologist that I expect his cooperation, or I’ll find another cardiologist that will respond appropriately to routine pre-surgical clearance requests. 

So, that is things are at the moment.  I may try to find a different urologist, who would focus on the peyronies instead of the hyroceles.  A permanent fix for the ED is probably an implant—but that would most definitely not be covered by the insurance company.  In my opinion, I can live with the hyrdoceles for a long while yet.  Seeking another opinion probably is a good idea anyway.

Thanks for your reply, I appreciate your thoughtful response.
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TheTexican

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Re: Introduction from Phoenix, Arizona.
« Reply #3 on: June 13, 2018, 10:07:45 AM »

Sounds like you've had a real ordeal. So sorry to hear about this.

My amazing urologist recently moved to Phoenix. His name is Kevin Art. He's fantastic. If I needed a surgical procedure, I might fly out there to have him do it. I trust him that much.

Hang in there!

The Texican
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betterbend

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Re: Introduction from Phoenix, Arizona.
« Reply #4 on: June 13, 2018, 02:03:04 PM »

You have a very difficult story and I feel for you.  I have never heard of a cardiologist not doing a pre-cert.  Its normally a big part of their practice and a money maker,  Further, surgeons, who rank higher in the medical food chain, get very pissy when cardiologists bungle pre-certs, and the cardiologists hate it because all those guys talk and nobody wants a bed reputation, its bad for business.  If their office doesn't followup find another office, and let your surgeon know that you got crappy service at the cardiologists office.  Be assertive, but pleasant with all your doctors.  Ask why they went straight for an injection with aprostadil and didn't try sildenifil?  You can buy it in 20 mg strength pretty cheaply if you shop it properly. 

As for Xiaflex cost, I think its about $4000 per vial, so with the $1200 manufacturer assistance,  $3k sounds about right.  Are you sure your insurance wont cover?  Many times is requires a prior authorization.  They wont tell you that.  Speak to the billing person at the doctors office, they should contact your insurance company.  Tell the docotr office there is a J code for the product, J0775 collagenase clostridium.  You might have to fight a little for it, the insurance doesn't want to tell you to readily.

I also dont love the idea of just assuming the doctor will write off a balance if they dont participate.  They can go after you legally if they so choose.  Without anything in writing, you might lose in collections court and have to pay and have your credit take a hit.
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Morien

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Re: Introduction from Phoenix, Arizona.
« Reply #5 on: June 16, 2018, 03:40:23 AM »

Thanks, Texican, for the referral. 

Since my initial posts, I've made a few discoveries.

First of all, I made some inquiries at work about the self-funded employer insurance plan.  It is administered by Cigna--but the plan is entirely funded by my employer with some stop-loss agreements with Cigna. 

It turns out there are three employees on the staff at the company who are actually administrators of the plan.  They have access to all of my health information.  Dates of when I went to a physician, why I went, what was prescribed, what lab work was ordered and why, even where I had the prescriptions filled.  Everything.

It turns out there is a wealth of information available to my employer--which I had mistakenly believed was entirely private, privileged information for medical issues that were restricted to myself and my doctors.  The information is not, has never been, private. 

The primary administrator of the plan at the company I work for happens to be my supervisor.  So...yes...my boss...she knows I have a bent penis.  Of course, it was explained to me that the employees would never share information about me...blah blah blah.  Right, got it.

I found out some more information about my cardiologist--it turns out he works at more than one office.  He actually spends a the greater part of his time out in the west Phoenix area, in Glendale, which may explain at least part of the reason why I wasn't able to get in touch--I was calling the Phoenix office, and he wasn't even there--and of course none of the staff would let me know that.

I believe I made a mistake there though, as far as getting the pre-cert.  What they probably wanted was for me to make an appointment to undergo an examination prior to his giving a release for surgery.  The only problem with that is, there is a one to two month wait to get in to see him as he is booked up so much.  There would not have been enough time to get in to see him prior to the date of the scheduled surgery anyway. 

Then of course, there are the issues with the surgical facility and the anesthesiologist both being out-of-network.  After what took place after the colonoscopy--where I was assured there would be NO problem with the out-of-network anesthesiologist and then was promptly turned over to a collection agent, I find I am unwilling to risk exposure to more collection activity for bills that could easily run into the tens of thousands of dollars.  The use of out-of-network surgical centers along with out-of-network healthcare staff is rampant in the Phoenix area.

As far as the Xiaflex is concerned, I was looking at prices for the product on web postings dating back to 2013, when it cost $3K per vial.  I believe what happened is that the prices were raised--and then the "financial assistance," program reduced the price back down to the original price when the drug went on the market.  And yes, the healthcare plan specifically denies coverage for the drug Xiaflex--it is mentioned by name.

After taking all of what I have learned and all of the variables into consideration, I've decided to not pursue treatment of the peyronies, or the hydroceles for that matter. 

It is a disappointing decision.  I have watched several videos on YouTube (look up Dr. Andrew Kramer if you'd like--be forewarned his videos are NSFW) and the surgeon swoops in and resolves so many different issues all in one surgery, making it all look matter-of-fact and easily attainable 

But I know while watching those videos in the back of my mind that I am looking at surgeries and devices that are completely out of my reach financially.  My finances and my credit were destroyed by my divorce and I'll never really fully recover. 

And beyond that, there are far too many pitfalls in Arizona.  It is my belief that the healthcare professionals who currently refuse to contract with insurance companies will continue their patterns of behavior and they will find loopholes and clever ways to skirt the new laws that take effect in January 2019 and will simply carry on doing whatever they want to do.

This decision isn't the end of the world for me.  It's not the outcome I had hoped for, however, I'm a busy person and always have half a dozen projects going on.  Repairing the penis would have been a great thing, but life will go on.  With the type of heart disease I have, there is generally an expectation of life of somewhere between five to ten years.  I intend to keep busy and to find happiness in the time left to me.

I wish everyone on here the best, and good luck to you.

Thanks.
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Tsanchez12369

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Re: Introduction from Phoenix, Arizona.
« Reply #6 on: June 16, 2018, 03:40:09 PM »

You may want to try for a Rx for pentox (generic), maybe add low dose cialis (available in inexpensively online without prescription as liquid tadalafil peptide), and traction-inexpensive ESL40 online.  You might very well reduce your curve (and regain any lost length) in 6 months or so.  P.S. any doc who accepts in network rates should be willing to put it in writing...I just hand write it into the consents I sign, limiting my financial responsibility.
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