Recommendation for surgery / Cost for surgery

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desertman

Hi there,

I have Peyronie's Disease and the more I research about it the more confused I get. Seems to come with the territory. Even here in this forum (which seems to be better than most other places about Peyronie's Disease) I do not find much clarity yet - maybe except for the website of lcwillisjr, that sound pretty much like my own story and seems to have ended well with surgery.

I am 57 years old and had always a healthy and very nice sex life before I got Peyronie'd Disease. I woke up some morning in November 2008 and had a rather sharp 45 to 60 degrees bend in my erected penis, and exactly where the bend was my erected penis had a neck as if I had put a very tight string around it . Before that my penis has always been very straight and never gave me any problems. The bend is pretty close to the body - I would say about 15 to 20 % of my erected penis are before and 80 to 85 % after the bend. It bends to the left and I can feel a lump under the skin. I tend to think that the bend and the lump have not changed over the last 15 months. The lump is maybe 15 mm long and maybe 3 mm wide. When this happened first I naturally freaked out and since I had to go to Germany the next day I went to an urologist there immediately.

He checked on me, also used a ultrasound device, and told me this: 1) It is Peyronie's Disease and it seems not to be calcified yet. 2) It may disappear on its own within a year or so or not. 3) There are a couple of non-surgical treatment possibilities but they basically all do not really work. 4) If it does not go away the best option is to get a surgery (excision and grafting procedure) but not before waiting at least one to one and a half years.

Back in the US I went to a doctor here who told me basically the same and recommended very expensive enzymes and vitamin E which I took for about nine months without any result.

I can have sexual intercourse but it is not very much fun. It needs a lot of help from my girlfriend and is only possible in one position. The problem is that the first 20 % of my penis go into a completely different direction than the following 80 %. Therefore, whenever I move my body to push, I basically always push against the bend and I think that is not a good idea at all (and it also does not feel very good). Only when I or my girlfriend hold the penis some kind of intercourse is possible. The whole thing is rather frustrating and I definitely now prefer to masturbate over having intercourse. Masturbation is possible but also not as much fun as it used to be.

Today (March 1st, 2010) I went again to an urologist because I think it is time to check out surgery. To my utter frustration this guy told me that he could not help me because he never did such a  surgery - and he could also not help me to find anybody who could do such a surgery because he would be only here in Arizona for less than a year and would not know anybody. He then suggested that I should phone around some hospitals in Phoenix in order to find a surgeon for such a surgery. And no, he did not say "Sorry, I can not help you, but let me make some phone calls and help you find someone who can." He did however charge me $216 for this visit (and reduced it after my protest to $150 which I still think is a bad joke for sending me away without any help or advice).

This is the story, here are the questions:

Can anybody recommend a doctor in Arizona or close to Arizona (i. e. California) who has successfully done many such surgeries?

How much will such a surgery probably cost in total? Do I have to look at $5000 or $10000 or $20000 or even more?



Thanks a lot for listening to me. Thanks a lot for your answers.

chiguy

Desertman,

Sorry to hear you have not had any success thus far. You have what is classified as a severe bend. Vitamin E's effectiveness is debated, with most people saying it does not help. It appears that the condition has not worsened or gotten better in the year and a half you have had the disease.

Most doctors say that all remedies should be tried before surgery. A lot of people have experienced success with the PAV cocktail +ved/traction. The components are pentox (a cheap prescription drug), l-arginine (a cheap supplement), and viagra/cialis. Used in combination with a traction or VED device, a lot of people report progress.

Another option are the verapamil shots, but they don't seem to be heavily effective.

Since you are at the point of probably having surgery, you need to find a male sexual function specialist who performs many of these surgeries. There is way too much room for error to use anyone else. In California, there is a doctor named Dr. Lue in San Francisco who performs plication and excision/grafting surgeries. Many on this board use him.

In terms of payment, you can often try to work out a plan with a hospital. One forum member estimates the procedure can cost between $15K-20K for either type of surgery.

LWillisjr

I can share my experience. But keep in mind that I as fortunate to have medical coverage. Even though Levine was a 3 hour drive away, he was still listed as an "in network" doctor for my plan. Having said that, I've never understood what appears to me to be unbelievable medical costs. I don't blame Levine or the hospital, it is the system.

My surgery was outpatient surgery, and I was actually in the OR about 1.5 hours. When I received the insurance statement, to total bill was $27K. But then there is always a writeoff due to agreed "usual and customary" charges between the insurance company and the medical provider. The write off brought it down to around $20k. Insurance covered all of this except for about $1200 which I paid out of pocket.

Les
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

emperordune

Quote from: lwillisjr on March 02, 2010, 09:46:31 PM
I can share my experience. But keep in mind that I as fortunate to have medical coverage. Even though Levine was a 3 hour drive away, he was still listed as an "in network" doctor for my plan. Having said that, I've never understood what appears to me to be unbelievable medical costs. I don't blame Levine or the hospital, it is the system.

My surgery was outpatient surgery, and I was actually in the OR about 1.5 hours. When I received the insurance statement, to total bill was $27K. But then there is always a writeoff due to agreed "usual and customary" charges between the insurance company and the medical provider. The write off brought it down to around $20k. Insurance covered all of this except for about $1200 which I paid out of pocket.

Les

I had the exact same grand total of 27k.  Which makes sense since we have the same doctor.  However, I had a high insurance deductible of $2500 and had to pay about 25% of the remaining balance over the deductible amount.  In the end I paid about $5500 for my plication surgery.  Also, I signed up for my own insurance plan about 3 months prior to surgery and surprisingly the insurance company didn't deny me any benefits for it being a pre-existing condition.  

45acp

Desertman:

I recently had a 16-dot procedure to remedy my 90% curve. The was performed by Dr. Lue as an in-out procedure (see plication thread for more details).  The cost was $12,500 which my insurance covered a portion.  It's only been a week since the surgery, but I highly recommend Lue for a consultation.  He only accepts patients who have been referred by another Uro.  

I've got another 4 weeks to go before I can give a full and complete report on the success of the procedure, however I have had little of no discomfort.  

Wishing you the best of luck!

45acp

Gomez

Does anyone know whether the surgical procedures are covered  by Medicare?


jpl

Yes, most surgical procedures are covered by Medicare.
Just make sure that your doctor/surgeon accepts Medicare!
Mine was accepted. (Excision and Grafting)
JPL

Old Man

Gomez:

Talk with your doctor who you anticipate having the surgery done. Ask him to preauthorize the procedure with Medicare first. That way you will know for sure in advance if it will pay, etc. Most will pay at least some for these kinds of procedures if the right specification code for Medicare is used by the physician.

So, do you homework with Medicare first before surgery.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

not9inches

Hey everyone.
Im still around but drift away every so often.  Last time I posted i was explaing that I was ready for surgery
if the Doctor agreed that it would be my best option. anyway...I live in Houston texas and I am ssooooo frustrated that
I cannot seem to find a Uro here that does surgery for peyronies. I dont even know where/how to find
one here in Houston. The last two Uros I went to here were no help. anyone heard of any doctors here In Houston?


jackp

The closest doctor to you will be Dr. Henry in Shreveport. The next would be Dr. Milam at Vanderbilt in Nashville.

Most major cities do not have Male Sexual Function Specialist as you are finding out.

Good Luck

Jackp