Partial nerve sparing

txbarton said:

Drug Appeal
BD,

Yes, I appealed the Viagra prescription and they denied it. Puritanical attitude, ED drugs are for recreational activity and not required for quality of life as far as the bean counters are concerned.

My insurance pays for 6/month, my copay is $22. They suggested Cialis with a $9 copay but my doctor recommends Viagra. He has made up the balance for the 15/month I take and will continue for the 6-month therapy period.

I got a manual Osmon pump. It is an Erectaid so I think must be the same thing Randy bought. I got mine through my doctor so paid list price; $500. As Randy said, it is a quality piece of machinery but be careful, I am sure you can blow something up with it!

I asked my doctor and my son who is an MD about Internet pharmacies and they both tactfully said that while they are not familiar with them they would not recommend them since there is no guarantee of quality or that you are getting what you order. Sounds like several people on the board are pleased with what they get from them.


It is all an expensive proposition. I wouldn't want to put a value on my erections but since they have taken good care of me for a long time I want to do what I can to protect them. :-)

VB

tr008 said:

partial nerve sparing
You think the Drs. just don't want to tell you the bad news up front? I'm very close to 4 months now since my robotic surgery and was told that he spared all the nerves on one side and 10% or so on the other. I have yet to have anything resembling an erection. I have been taking Viagra and just the past week got a pump. The pump works maybe 75% but I have not had much luck in holding the blood in yet. I think some experimentation with different rings. I would really like to hear from guys who have had the shots. I think that this may be my next step but have a couple of questions. Thanks

I had DaVinci in 2015 and was blessed to have had complete nerve sparing.

Definitely save what you can.  A few surgeons will do reconstructive nerve grafts, but I have never heard that discussed here that I can recall.  At present, eradicating the cancer will be the doctor's overwhelming focus.  When you are cured of what can kill you, the focus can shift to fixing other imparements,

max

Very interesting tread, regardless of time it was started in 2010.

I know, partial nerve sparing lives guys with very minimal chance of recovery of spontaneous erections. .Those who responded proved the point. 

I had my RARP 12+ months ago with bilateral nerve sparing according to my surgeon. As of now, I did not experienced sign of life in my penis despite aggressive penile rehabilitation. I used Cialis and Viagra with no response even with max dose. I am using VED which never produced usable erections. Had plenty of bruising, discoloration and penile shaft swelling. At 5 1/2 months started TRIMIX which produces erections with penis size of 10 years old. Not usable for penetrative sex. I lost 2+ inches of length and lots of girth.

Just to mentio, prior to surgery never had any problems with achieving and maintaining erections, healthy, not on any medication, non smoker and non drinker,  very active and in excellent physical shape. 

From my experience, even nerve sparing means NOTHING TO RECOVERING ERECTIONS. SURGERY DESTROYED MY LIFE.

i am very worried about my future. And all of this happened at age of 51.

MK

I don't know about 1 in a 1,000 - I agree 100% with MK -- had a partial nerve sparing procedure 2 months ago - I am completely incontinent and dead otherwise from the waist down -- the comment surgery ruined my life holds true here -- even though it appears they got the cancer and my psa is > .03 the consequences of the surgery have been devastating

I have been in an Active Surveillance program since March 2009 during which time I have been monitored for disease progression which would indiciate active treatment if needed.

In order  to make the best decision for a localized treatment for prostate cancer, if necessary, I did very extensive research to determine the success ,  along with the  frequency of  potential consequences of these treatments. My research includes reading  from this site since   April 2009 where I  read posts by men who suffered the consequences of surgery to include but not limited to incontinence and erectle dysfunction. These posts were and are frequent. There are ongoing threads at this site about incontinence from surgery, and the sub industy that developed to install the various AMS devices to correct this. Also for Erectile Dysfunction there are various devices that are installed so a man can have an erection

During the last nine years of research, I attended local support groups where I met many men who suffered significant side effects from surgery; incontinence and erectile dysfunction. In addition, I observed that many men who were treated with surgery had to have salvage radiation and or hormone treatment since many of the surgeons in thier haste to do the surgery did not order proper diagnostic tests (image) before surgery, and these men had to suffer additional treatments with other potential consequences.

I also read extensively on the subject to include but not limited to medical studies and books. Studies that I have read discussed the frequency of side effects from surgery which is great. Attended many lectures about treatment, where I heard from unbiased medical lecturers, such as world renown Medical Oncologist "Snuffy" Myers who were against surgery because of the severe consequences that men experience.

rmp42661 said:

I don't know about 1 in a 1

I don't know about 1 in a 1,000 - I agree 100% with MK -- had a partial nerve sparing procedure 2 months ago - I am completely incontinent and dead otherwise from the waist down -- the comment surgery ruined my life holds true here -- even though it appears they got the cancer and my psa is > .03 the consequences of the surgery have been devastating

rmp,

You are now a paraplegic ?  Dead from the waste down ? I take it you mean unable to walk ?

If so, that is beyond any account of R.P. I have ever read.  It could not be caused by damage to the erectile nerves; it would require damage to the spine.  I do not quite understand.  But regardless, I am sorry for your condition.   As others noted already, surgical recovery is measured in months and even years; two months is not even a good start, compared to the experiences of many.

I wish you wellness,

max

MK1965 said:

1 in 1000

max,

i feel you are sarcasticaly joking about my situation.

Few guys here will never understand it because they so ignorant.

 Throut shoul be told and should be heard as far as possible. 

MK

i did not, and would not, ever joke about such a thing, MK.

I'm sorry if the post did seem a bit snarky. My apologies to you, which I have explicitly espressed to you several times in the past.

Yes, all experiences should be shared. But your results are so skewed toward the terrible end of the usual spectrum that men also need to know that the DEGREE of your ED is not typical. It occures in some, yes.

I have watched two men die of PCa, and had a younger relative also die of it at MD Anderson in Houston.   I could not be forced to ever joke about this disease to anyone, ever.

I remain of the opinion that as long as a man is cancer-free he remains a man, and that life remains precious for such a man, and that he is as much a man after surgery as before, regardless of potency.  And that too is what I have always written to you in the past.

max

Grinder said:

Two months?!

Didn't your surgeon give you a timetable for recovery? You are looking at 4 to 6 months to see incontinence improvement. After over a  year I am down to the kind of minipad for 24 hours just to make sure I don't drip. I could get by without it if I wanted too, but they're cheap so who cares. And ED is a one to two year timetable. 

Yes there many instances IN THIS FORUM of permanent side effects from RP, but my surgeon alone has performed over a thousand, and most surgeons have, and successfully. This procedure is done in the thousands across the country, so the number of complaints is miniscule. According to the Dept of Health and Human Services, it estimates there are 195,000 prostatectomies performed per year in the US.**

Suppose there are maybe 10 to 20 instances in this forum of permanent side effects for this year. I have read pretty far back into the archived posts, and they only appear to be a great number when not considering the number of people who never visited this forum because they recovered according to the normal timetable and did not seek out further information. 

Even if there were 20 complaints of instances of permanent side effects, that is .01% of 195,000 prostatectomies. 

That is small comfort to someone who has permanent incontinence, but the numbers when considering prostatectomy must be taken into consideration. I would be curious at the success rate of other surgical procedures. At 195,000 a year, the number of complaints of permanent side effects is simply miniscule, yet they seem huge because they are expressed in adamant terms out of frustration, which is to be expected.

It is not enough to just say "Robotic Prostatectomy ruined my life!!". Because of the numbers, to aid others in making their decision, it is necessary to find out WHY a procedure was unsuccessful. 

I have tried myself to figure out WHY MK's procedure was unsuccessful. There has to be something different from his procedure that was different from all the successful procedures. It would benefit everyone else who considers it in the future to avoid the procedure if they fall into the same specifics that made MK's fail. 

Unfortunately, he has not considered what might have been different, but has condemned the procedure wholesale. I do know he had a TURP procedure done a short time before the RP... though he denied this affected the RP procedure, it is an example of an anomaly that makes it different from successful RPs. I am still disturbed that urologist are performing TURP without a biopsy first, because TURP is a shocking waste of time and money if an RP is necessary, and may even be detrimental.

Anyone can argue this with me if they want, but it is the hard, and perhaps unpleasant, truth. In light of the vast number of successful RPs, it is imperative that we determine what causes the unsuccessful RPs, so future cancer victims can figure out if they risk similar outcomes, or if they can be confident they fit into the profile for a successful RP outcome. 

It is simply not enough to condemn the procedure outright because of a .01% rate of permanent side effects.

**http://answers.google.com/answers/threadview?id=367638

 

 

Grinder,

your 0.01% of unsuccessful RP procedures compared to 30-70%per  AUA and 40-90% per EUA rate of impotence, where is the trouth?

If I am 1 in 1000 cases like Max said in another tread then this is the best success rate for any surgical procedure ever performed.

If this would be real then I would proudly bite the bulet and let other 999  enjoy happy lives.

You are blaming my TURP for bad outcome. I already talked to many urologists and neither one of them agreed on Turp being reason for

my 100% ED 12+ months after surgery. I mentinned before i had erection  first night after TURP while catheter was in and continued every night until I had RP.

No urologist could find rational explanation for me not having sign of life down there. One even said that I was unlucky one adding that it happens more often then urologists want to admit.

I totaly wish, I can report something better and more positive but that would be laing to myself.

MK