Partial nerve sparing

2

Comments

  • bdhilton
    bdhilton Member Posts: 846 Member
    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

    I will spend what is needed...
    VB,
    Thanks your response put a smile on my face…all ED drugs are the same cost to me but like you I only get 18 every 90 days …My doc just says we will figure out which one works best for me and take it from there…So I am sure I will go down the same road as you plus I am kind of fond on my friend and I will spend what is needed..
    I ordered an Augusta Vitality (manual) last night from some drug supply company but less than $500… I guess I will learn a new skill set to put on my resume…LOL
    Best to all
  • tr008
    tr008 Member Posts: 9
    bdhilton said:

    I will spend what is needed...
    VB,
    Thanks your response put a smile on my face…all ED drugs are the same cost to me but like you I only get 18 every 90 days …My doc just says we will figure out which one works best for me and take it from there…So I am sure I will go down the same road as you plus I am kind of fond on my friend and I will spend what is needed..
    I ordered an Augusta Vitality (manual) last night from some drug supply company but less than $500… I guess I will learn a new skill set to put on my resume…LOL
    Best to all

    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
  • txbarton
    txbarton Member Posts: 89 Member
    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

    Pump Takes a While
    The pump takes a while to achieve maximum rigidity and size. The first couple times I used it I was very disappointed with the results. The Osmon pump recommends you use it for 2 weeks before you try to capture the pressure.

    I was able to achieve 1 1/2 - 2" more after about 10 days of daily use. The directions on the pump left a little to be desired other than recommending pumping in small increments and allowing about 10 seconds for the blood flow to catch up. I asked my doctor who said to do that in about 2-3 pump intervals and when you achieve max rigidity hold it for 30 seconds, release and repeat as many times as you feel like. I do 4-6 iterations prior to getting in the shower every morning.

    I haven't tried to capture the pressure.

    Good luck! Don't give up.

    VB
  • Barton
    Barton Member Posts: 3
    Success
    I had a prostatectomy Jan 5, 2011. My biopsy before hand revealed hi grade cancer. (Gleason9) only left lobe. (second pathology report was still high grade Gleason 8)I couldn’t find a surgeon to even consider opening me up and spearing the nerve bundle on that side . MY post surgery pathology report reveled much less, a lower end gleason 7 (3-4) IF I would have demanded another bisopsy it may have reveled this before surgery and would have had other options. Doc.’s told me that didn’t make since. However I’m doing well! Much , much better than I expected, and feared. I did have my share of completion from surgery. Only right lobe nerve bundle spared, Leaky limp node, terrible bladder spasms , trip to emergcy room and another drain put in for over 3 weeks. OK enough of that, now the good news! I’m a little incontinent but very little and still over all getting better. Maybe 5 weeks after surgery I was started on 10 mg of vardenafil every 3 days. This has been working well for me . Blood started to flow the first time I used it. Second or third time used, I was able to have intercourse with my wife. This did take a lot of work but was enjoyable. I ‘m still far from being rock hard and we need to take the vardenafil to have working tool, but it still getting better all the time. We expect things to get better in time but if not it’s good enough as is. Plus the main gift is my PSA is undetected. I wish everyone else these results, and only have three more words to say. PRAISE THE LORD!
  • Barton
    Barton Member Posts: 3
    Success
    I had a prostatectomy Jan 5, 2011. My biopsy before hand revealed hi grade cancer. (Gleason9) only left lobe. (second pathology report was still high grade Gleason 8)I couldn’t find a surgeon to even consider opening me up and spearing the nerve bundle on that side . MY post surgery pathology report reveled much less, a lower end gleason 7 (3-4) IF I would have demanded another bisopsy it may have reveled this before surgery and would have had other options. Doc.’s told me that didn’t make since. However I’m doing well! Much , much better than I expected, and feared. I did have my share of completion from surgery. Only right lobe nerve bundle spared, Leaky limp node, terrible bladder spasms , trip to emergcy room and another drain put in for over 3 weeks. OK enough of that, now the good news! I’m a little incontinent but very little and still over all getting better. Maybe 5 weeks after surgery I was started on 10 mg of vardenafil every 3 days. This has been working well for me . Blood started to flow the first time I used it. Second or third time used, I was able to have intercourse with my wife. This did take a lot of work but was enjoyable. I ‘m still far from being rock hard and we need to take the vardenafil to have working tool, but it still getting better all the time. We expect things to get better in time but if not it’s good enough as is. Plus the main gift is my PSA is undetected. I wish everyone else these results, and only have three more words to say. PRAISE THE LORD!
  • CleanGene
    CleanGene Member Posts: 5
    Any updates from anyone?

    The comments in this blog on partial nerve sparing are several years old. I am looking for insight from recent (2017) prostatectomy patients regarding their "results" from partial nerve sparing. My surgery is scheduled in 10 days. The urologist suggested he may need to take the right bundle.  I don't want false hopes. Just the facts. If take one bundle, you might as well take both? Any insight appreciated. A lot of anxiety about all of this right now. My Gleason is (3+5); the bone scan and CT did not show any spreading. Prostate appears smooth in CT. We'll see where all of this goes - post surgery biopsy.  

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    Nerves

    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

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Clean gene

    Proper diagnosis is imperative to determine treatment for prostate cancer. CT Scans however it is inaccurate to determine cancers in the lymph notes, finding cancers in only 35 % of the time

    More accurate diagnosis tests are multi parametric MRI and PET scans.

    There are various pet scans that can determine cancers outside the prostate to include all parts of the body.

    There are various pet scans that are available. The axumin pet/ct scan (18f-facbc) is approved by the fda and I believe is covered by medicare. There are also other better ones that are considered investigational; 68ga-psma-11 and acetate 11c as well as others.

    I suggest that you consider a pet scan at this time.

     

    Surgery , which can have greater side effects than any other localized treatment will not cure the cancer that is outside the prostate and other treatment such as radiation and/or hormone treatment will still be required. The side effects of each treat ment type is cumulative. With a Gleason 5, surgery most likely will not be curative, especially since the cancer is at least outside the prostate in the lymph notes and very possibly else where

    Ask questions

    Wish you the best

     

     

  • MK1965
    MK1965 Member Posts: 233 Member
    edited November 2017 #30
    Partial nerve sparing le

    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

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    MK1965 said:

    Partial nerve sparing le

    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

    Mk,

    Mk,

    Your 1 in 1,000 experience should cheer him up...

    max

  • rmp42661
    rmp42661 Member Posts: 6
    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

  • Clevelandguy
    Clevelandguy Member Posts: 980 Member
    edited November 2017 #33
    Give it some time man!

    Hi,

    Surgery takes more like two years to heal up.  From what I remembered at two months I was still wearing diapers and was as limp as a noodle.  Now I am about 95% cured on the leakage issue and the ED is gone.  Hopefully in the coming months you should see some improvement month after month.   Do your Keigals and get some blood flowing into your groin area by any means you can think of that is legal.  I remember when I fell on the ice and cracked a rib or two, it took about 2-3 months for the minor pain to go away.  Major trauma to the body via surgery does not heal overnight or over a couple of months.  Have faith and keep a good attitude that you will get better.

    Dave 3+4

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    NOT one in a thousand

    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.

     

     

     

     

  • Clevelandguy
    Clevelandguy Member Posts: 980 Member
    edited November 2017 #35
    Treatment side effects, yes they exist

    Hi,

    Not all surgeries or all radiation treaments have severe consequences, it would be absurd to say that. All treaments have side effects, there are only two major types of treatment, surgery & various forms of radiation.  Each person is different in their recovery time and re-gaining use of your bladder & "member".  I had surgery and will probably wear a light pad the rest of my life, do I want to, NO, but I made my choice and will have to live with it.  There is no agreed upon time for healing with either form of treament.  Success depends on your doctors skill, your age, and how much they had to remove(surgery) or blast with radiation.  I just hope that the people that have chosen surgery or radiation realize that it takes time to heal, some sooner than others, some with better result than others.  The only other option available is to do nothing and live with the cancer.  Depending on your age and how agressive the cancer is that could be a good choice.  Do your homework thoroughly, pick your treatment and live with the results.  Don't mean to sound cold about it but cancer is not pretty or fashionable but a nasty fact of life for some of us.  Until that perfect "treament" comes along with no side effects we all have choices to make and results to deal with.

    Dave 3+4

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    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

    Horrible

    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
    MK1965 Member Posts: 233 Member

    Mk,

    Mk,

    Your 1 in 1,000 experience should cheer him up...

    max

    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

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    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

    Nope

    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
    Grinder Member Posts: 487 Member
    edited November 2017 #39
    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

     

     

  • MK1965
    MK1965 Member Posts: 233 Member
    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,

    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

  • Grinder
    Grinder Member Posts: 487 Member

    Putting aside the futility of a TURP procedure followed shortly by an RP, the simple but crucial question remains... 

    Why was my Davinci surgery a success and yours was not?

    Equivocating by your urologist that there is "no rational explanation" does not help us discover why one worked but another did not, therefore the procedure must be condemned in all instances.

    I am not trying to be an "advocate" of RP, I am recommending everyone determine which procedure is best for their PC profile. That certainly includes RP in many instances, and was certainly so in my instance. Yes, you should make known your reservations, but there still has to be some explanation that is being avoided. Or did fate simply flip a coin and say "you win but you lose"? 

    If anything, due to the massive size of my prostate, reduced down to 197cc during the surgery, my RP was much riskier than a routine surgery. I was warned of the increased risk by my surgeon, but I chose it anyway because of my profile. And I would do it again, and anyone whose profile would better fit RP needs to know why mine was successful but others were not and why, so they can make the best decision possible for their profile.I

    A checklist should be itemized for all procedures to determine the best course for any patient. Tips on my list would be:

    Experience and expertise of surgeon.

    What other factors beside PC are relevant.

    In my opinion, maybe not a very good one, it is not enough for the field of urology to say "Some are successful, some are not". With my experience in experimental sciences, variables are everything... It is in the variables that we can make make predictions of the outcomes. So if urology expects to be a science, at least as much as possible, it has to discover which variables affected which outcomes. 

    That is the truth. Discovering which variables affected which outcomes will lead to more exact diagnoses and prognoses. This is what scientific inquiry is all about. If RP side effects are occurring frequently without inquiry into the variables that create the unfavorable outcomes, then that is an unfortunate commentary on the entire field of urology. But I find that difficult to believe, and my experience with my urologist/surgeon would suggest otherwise.

    Something happened that made our outcomes different, and if we cannot know it, then we cannot make definitive statements that RP should be condemned in all instances. But it certainly should be limited to the best interest of the patient. And it would be in the best interest of future patients if they could know why it worked in some instances but not in others, regardless of "no rational explanation".