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Partial nerve sparing

The Nev
Posts: 50
Joined: Sep 2009

Hello all I was wondering how many of you all that had nerve sparing on one side only are able to have an erection? I had nerve sparing on the right side only and had my surgery on Sept 29th and still have had no luck at all. I have talked to a few guys and found no one with the partial sparing having any luck. So is there hope or am I destined to have shots or another surgery? Hopefully some of you guys have had some success

hopeful and opt...
Posts: 2226
Joined: Apr 2009

on age.......also there are doctors who specialize in this....best of luck.......Ira

gjeck6874
Posts: 9
Joined: Feb 2010

Prior to my radical prostatectomy in 2004; the information I had on the nerve sparing technique indicated that the success rate would only be about 25% ...

I was originally scheduled to have this but my nerves could not be spared. The cancer had broken through the prostate capsule and the nerves were obviously affected and it could not be determined prior to surgery.

I was 54 at the time and now at sixty I'm still impotent.

However, I'm upright, breathing and have a pulse ... better that than the alternative.

Best of luck.

gjeck6874
Posts: 9
Joined: Feb 2010

Just thought I'd let you know that 2 months after my surgery, I had 37 sessions of external beam radiation. This may have affected my final outcome.

bdhilton
Posts: 767
Joined: Jan 2010

I would recommend that you get Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer. The stats say the better the surgeon the better the outcome, both nerve bundles saved have better results than one and age is a big factor.

I have surgery on March 3rd and I am going in knowing that I more than likely will not have both nerves saved…i.e. one nerve bundle saved only…but being alive and cancer free is a whole lot better than getting an on demand woody

The Nev
Posts: 50
Joined: Sep 2009

Hi guys I wasn't looking for better live then dead I already made that decision. Don't really care about books; I'm looking for real life what results men with partial nerve sparing have had. I was wondering is it even worth the risk. What I mean is if you have to have one side taken and the results are the same as if they took both sides why bother. There has to be somewhat of an increased risk of recurrence if the nerve bundle is left. So is it worth the risk are doctors even looking at this? What is the real world results of taking one side nerve bundle vs. taking both sides? These are the questions I have if anyone has any information great I would appreciate it.

lewvino's picture
lewvino
Posts: 1010
Joined: May 2009

Nev,
My Doc spared all nerves on the one side and estimated sparing 60% on the other side. I've had good results with Levitra. Not like before but happy. There are so many factors so don't give up hope! Surgeon skill along with other things such as your age, pre surgery ability, etc, etc.

Larry (age 55)

randy_in_indy's picture
randy_in_indy
Posts: 495
Joined: Oct 2009

What therapy have you done since the surgery to regain potentcy? Taken pills?, used a pump? It's hard to help if no information is known...How old are you? Regarding nerve sparing....my first surgeon that I was scheduled to go with...was point blank going to take the right side because that is the side the biopsey found cancer...and the nodgle was.

Went to another more experienced surgeon in the same group....He said, "Ah those young guys...I will give him a hard time about this when I see him at a dinner tonight" He said I want to do an MRI with rectol coil to see if it's contained. The first surgeon said..."nope don't need it as it won't change what I plan should happen in the surgery"

So, now, lets jump ahead and finish the story...my choosen surgeon said...if the peel off nicely when I am in there...probably no involvement and no need to take....talking about the nerves...so they did peel off nicely and he spared both...the other surgeon would have taken the right side....turns out there was cancer in both sides of the prostate and both sides of the capsule had extraprostatic extension..meaning it broke through the interior part of the capsule but and came within less than 1mm of escaping the outer capsule in both the right and left. Turned out no positive margins of any kind...so if I would have gone with the first surgeon I would have seemingly lost one nerve bundle uselessly - glad I was persistent and relentless in my search for the best possible surgeon within the other confines of my search. Now this is boring you I am sure...but here is my advice.

Get a pump...start using it every day...at least twice a day...forcing blood to your memeber 4 times for at least 5 seconds each session. Then talk to your doc about penile theraphy...does he have a plan for that or will you need to see someone else. My doc said Pump...right after the cath removal...take a 1/4 pill of 100 mg Viagra each day for 6 days on the 7th take a full 100mg and try. I have done this and it's working. Of course I have both nerve bundles...and what my surgeon said is rare...two additional pudental arteries on the top above the prostate that he recognized while doing the surgery and had to carefully and skillfully carve around to get my prostate out. I am lucky...have pretty good wood already at day 51 post Da Vinci.

Reason you have to get blood to the penis with the pump soon after surgery is because if you don't the soft spongie tissue will atrophy and possibly never come back. Good Luck!

randy in indy - age 52

randy_in_indy's picture
randy_in_indy
Posts: 495
Joined: Oct 2009

What therapy have you done since the surgery to regain potentcy? Taken pills?, used a pump? It's hard to help if no information is known...How old are you? Regarding nerve sparing....my first surgeon that I was scheduled to go with...was point blank going to take the right side because that is the side the biopsey found cancer...and the nodgle was.

Went to another more experienced surgeon in the same group....He said, "Ah those young guys...I will give him a hard time about this when I see him at a dinner tonight" He said I want to do an MRI with rectol coil to see if it's contained. The first surgeon said..."nope don't need it as it won't change what I plan should happen in the surgery"

So, now, lets jump ahead and finish the story...my choosen surgeon said...if the peel off nicely when I am in there...probably no involvement and no need to take....talking about the nerves...so they did peel off nicely and he spared both...the other surgeon would have taken the right side....turns out there was cancer in both sides of the prostate and both sides of the capsule had extraprostatic extension..meaning it broke through the interior part of the capsule but and came within less than 1mm of escaping the outer capsule in both the right and left. Turned out no positive margins of any kind...so if I would have gone with the first surgeon I would have seemingly lost one nerve bundle uselessly - glad I was persistent and relentless in my search for the best possible surgeon within the other confines of my search. Now this is boring you I am sure...but here is my advice.

Get a pump...start using it every day...at least twice a day...forcing blood to your memeber 4 times for at least 5 seconds each session. Then talk to your doc about penile theraphy...does he have a plan for that or will you need to see someone else. My doc said Pump...right after the cath removal...take a 1/4 pill of 100 mg Viagra each day for 6 days on the 7th take a full 100mg and try. I have done this and it's working. Of course I have both nerve bundles...and what my surgeon said is rare...two additional pudental arteries on the top above the prostate that he recognized while doing the surgery and had to carefully and skillfully carve around to get my prostate out. I am lucky...have pretty good wood already at day 51 post Da Vinci.

Reason you have to get blood to the penis with the pump soon after surgery is because if you don't the soft spongie tissue will atrophy and possibly never come back. Good Luck!

randy in indy - age 52

The Nev
Posts: 50
Joined: Sep 2009

Thanks for all the replies and the advice offered but, I was not looking for information on me I was looking for information on others the results of partial nerve sparing kind of like a survey.

Me I'm 55yrs old no problems before surgery. My surgery was at M.D. Anderson Houston with Dr Matin he has done over 2500 robotic surgeries and he came very well recommended. My Gleason was a 3+4 and the margins were negative. He took the left side bundle because the tumor was bulging out on the left side. Not outside of the capsule but bulging.

I started taking Viagra with-in a couple of weeks of surgery, and started on a pump at the same time. I have tried all the standard things and my doctor is recognized as one of the best; so I'm not convinced it’s the doctor or pre-surgery performance. I am pretty well convinced its how much of the nerve is taken. That’s why I was asking what others have experienced.
I have an appointment in April for some follow up and testing. This is with a Dr that only does impotence, that's his only job. He says they call him the tiger maker. LOL I will possibly go with the shots or even a surgery I just don't know yet. I feel like we're doing everything we can do M.D. Anderson is a very good Hospital and the all the doctors are first rate. As far as giving up hope never have but I am also a realist and would like to know how others have fared. I have read that about 25% of the men with one side removed will still be able to have erections. However I have not found that to be true at all. Not one person I have talked to so far that had only one side spared was able to have an erection after surgery. But I have only talked to a few.

So how about some of you guys that had nerve sparing on one side only what kind of results have you had.

randy_in_indy's picture
randy_in_indy
Posts: 495
Joined: Oct 2009

The surgeon that was going to take the right side bundle that I didn't use was the surgeon of a coworker & collegue and took his right side bundle. Mike's surgery was about two years ago...and he has with the use of Viagra had and has very usable erections with no problems. He told me it will get better with time. I have heard it can take up to 18 months to fully allow the nerve bundles to re-establish themselves fully...but after that time if there are no results you may have to go the shot route or surgery. I hope you get through this with a result desired!

Randy in indy

1005tanner
Posts: 29
Joined: Dec 2017

Did Dr Joseph Smith do your surgery? How are you doing now?I hope all is well. I have talked to him for second opinion.

 

nb's picture
nb
Posts: 12
Joined: May 2009

I had surgery in Aug 09 and am doing all of the recommended therapies and yet to have a spontanious erection. Like other post have said I remain hopeful as it may be 18 - 24 months before this occurs. Still, all is not lost and a loving understanding partner has made this challenge far less of an impact than I imagined.

The Nev
Posts: 50
Joined: Sep 2009

Thanks for the replies guys unfortunately it looks like there is not much success with only partial nerve sparing. I will remain hopeful and of course as others have said there's more then one way to skin a cat if you'll forgive my clichés

txbarton's picture
txbarton
Posts: 89
Joined: Aug 2009

Nev,

I was a little confused by my surgeon's explanation; he said he saved "both major nerve bundles" but took the nerves on one side of my prostate (I had extra-capsular extension). I think this means he took the nerves on one side as you ask.

I started 100MG Viagra every other day 4 days after surgery and started having a low level erections while the cather was still in (no fun when it slid up and down the dried mess on the tube!). I am now a little over 4 months post surgery, still taking 100MG Viagra every other day and have no problem achieving a "usable" erection on the non-Viagra days. The Viagra assisted erections are about like pre-surgery erections. Orgasm is much easier on non-Viagra days. As others have said, the urine ejaculated is somewhat disconcerting.

I am 59 and experienced occasional ED prior to surgery, as I understand my pre-surgery ED was about the same most men of my age experience. My PSA was 5.1, pre-op Gleason 3+3, post-op pathology Gleason 4+3. I am realtively continent; occasional squirt when I cough or sneeze, so I still wear 1 pad a day.

Recovery is different for each person. Mine is not necessarily normal or abnormal.

I hope this responds to your question.

Regards,
VB

bdhilton
Posts: 767
Joined: Jan 2010

VB,

My doc is saying 4-6 weeks after surgery for me but all docs are different...

Are you just paying for the Vigra out of your pocket or did you get the insurance company to pay their portion? Without an appeal from my insurance, they will provide 18 pills per 90 days @ $60...

What brand of pump did youi buy? I am looking -many thanks BD

randy_in_indy's picture
randy_in_indy
Posts: 495
Joined: Oct 2009

I am on my generic Viagra from India...working fine so far and cost after adding on another $15 came out to just about $2.00 per 100mg of sildenafil (generic for Pfizer's Viagra) No perscription needed. Took about 15 days to receive ordered 45 100mg got 50 plus 2 free Cialis soft 20mg at http://ALLDRUGS-NOPRESCRIPTION.com/ Shipping was $30 for rushing it...5-12 business days...lol I think I got it on the 12 business day. I did some grilling of the person on the 800 line and said...Look I want you to tell me who the best manufacturer is in India for the generic....she actually said I will send you an email after I do my research...and she did...plus a different web site to order it from...as that is the key to who the order goes to. The manufacturer was AUROCHEM at:

334 Gundecha Ind.Complex Akurli Road, Kandivli (E) Mumbai - 400 101, India

My doc said start right after cath is removed...1/4 pill per day on 7th day full 100 mg pill.

After researching pumps and talking to some of the people on the phone who sell them...I choose a Cadillac version from Agusta Medical Systems Called the Elite Premium V.E.D. I have to tell you I was like a kid in a candy store waiting for the package - and so excited when my new toy arrived. It has everything and more...both electric and mannual an instruction DVD, small instruction book and three tubes of lube and attachments to do all kinds of fancy things....LOL I just want the blood flow...it's pretty weird the first couple of times you use it..but you actually get better at it and more comfortable with it after repeated use.... Cost $299. if you want the site...

http://www.erecaidpumps.com/ its the one in the middle of the page Premium Package.

I can tell you one thing....This pump will never break or ware out if cared for properly...I like it.

Randy in Indy

bdhilton
Posts: 767
Joined: Jan 2010

...are we sick or what :-) we get excited over a penis pump ...to funny...but seriouly ( I will order one tonight) I am going to talk with my doc about the aggresive ED that you and VB did... thanks

randy_in_indy's picture
randy_in_indy
Posts: 495
Joined: Oct 2009

Yeah...I always say... even small things make good people happy! LOL Hey here's the reasoning behind the agressive theraphy so soon after surgery...Doc said you have to get the blood into the tissue right after surgery...otherwise that thing will just shrivel up and be a scared turtle perhaps forever...if blood does not reach the soft tissue for an extended time...like while you are recovering from the major surgery you just had....it will atrophy...just like a broken arm in a cast. You have to get blood flow into the penis to keep that tissue alive while your nervers are trying to recover from being ripped from their favorite spot in your body, that nasty prostate, left to just hang and whaller in a prostateless bed.... You can do the pills and the pump for blood flow daily.

All I can say is day 56 or 7 and I have usable ones....it does take some work though.

I need to go eat...then get back to working on my presentation for a customer call next week. AGain I will be thinking of you next wed.

Randy in indy

lewvino's picture
lewvino
Posts: 1010
Joined: May 2009

Glad that things are 'working' for you Randy. I know what you mean by it takes work but at six months its getting better more me.

Larry

txbarton's picture
txbarton
Posts: 89
Joined: Aug 2009

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

randy_in_indy's picture
randy_in_indy
Posts: 495
Joined: Oct 2009

The Generic Viagra I'm using from India looks very profesionally packaged in blister packs with all the drug infomation on each blister pack of 10 pills. I have not had any issues yet but will keep a close eye on it. Since I am only taking 1/4 pill a day 25mg I feel it's not such a threat. (is that stupid or what?)

I refuse to pay the price of $17 to as high as $27 per pill here in the US...that is just plain rediculous...I'm sorry but, pfizer is just not THAT good! I will take my chances with this batch and if nothing is wrong then continue on. I really doubt I will ever buy any more as my guy is starting to work on it's own..or perhaps the 1/4 pill is enough.

I'm afraid to use the electric part on my pump until I spend more time with my new buddy as that might be recipe for and explosion VB is talking about.

Randy in Indy

bdhilton
Posts: 767
Joined: Jan 2010

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
Posts: 9
Joined: Nov 2009

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's picture
txbarton
Posts: 89
Joined: Aug 2009

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
Posts: 3
Joined: Oct 2010

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
Posts: 3
Joined: Oct 2010

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
Posts: 5
Joined: Nov 2017

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's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

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 opt...
Posts: 2226
Joined: Apr 2009

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
Posts: 179
Joined: Jun 2016

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's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Mk,

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

max

MK1965
Posts: 179
Joined: Jun 2016

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's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

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

rmp42661
Posts: 6
Joined: Oct 2017

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

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

Clevelandguy
Posts: 470
Joined: Jun 2015

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 opt...
Posts: 2226
Joined: Apr 2009

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
Posts: 470
Joined: Jun 2015

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

 

Grinder
Posts: 442
Joined: Mar 2017

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
Posts: 179
Joined: Jun 2016

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
Posts: 442
Joined: Mar 2017

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".

MK1965
Posts: 179
Joined: Jun 2016

Thanks Grinder!

You sound like political scientist.

I will take: Fate simply flipped the coin which was not favorable for me.

From now, Fate will be blamed for bad outcomes.

This gives me and others insight that RP is nothing better than 50/50 same like a coin.

IF YOU DONT LOSE, YOU WIN.

MK

Clevelandguy
Posts: 470
Joined: Jun 2015

Hi MK,

You might want to see a Psychiatrist and talk to them about your ED.  I know when  my "member"starting to come back alive and the time to have sex was at hand, I did get nervous and it did kind of kill the moment(going limp) if you know what I mean.  Later on I got over it and now I'm back to normal(99%).  Might want to give it a try.

Dave 3+4

MK1965
Posts: 179
Joined: Jun 2016

Clevelandguy,

what psychiatrist has to do with iatrogenic induced ED?

MK

Clevelandguy
Posts: 470
Joined: Jun 2015

It might not be all physical?  Mental health plays a large roll in sexual excitiment and in healing.  Did ya ever hear about people with depression that have had ED issues, I have heard that many times in the past.

Dave 3+4

hopeful and opt...
Posts: 2226
Joined: Apr 2009

MK is having a physical problem due to the side effects of surgery.

There are psychologists that specialize in intimacy. There are things other than penetration that can give satifaction to couples. 

There are also alternative ED physical treatments, to include but not limited to PDE5 inhibitors, injections to the penis for erection, pumps, penile implants There are urologists who are experts and specialize. Dr. john Mulhall comes to mind. He also wrote a book that you can read. ......

https://www.google.com/search?authuser=0&source=hp&ei=YqwgWreiHKf_0gLvs42gBA&q=dr.+john+mulhall&oq=Dr.+John+mul&gs_l=psy-ab.1.2.0l10.1567.24188.0.29618.23.18.4.0.0.0.227.1937.7j9j1.18.0....0...1.1.64.psy-ab..1.22.2085.6..46j35i39k1j0i131k1j0i131i46k1j46i131k1j0i67k1j0i20i264k1j0i46k1j0i131i20i264k1.97.Szqtuw4-cp0

 

 

Grinder
Posts: 442
Joined: Mar 2017

"You sound like a political scientist".

No I don't. And I was trying to point out the absurdity of assuming fate is the determining factor. Deny it all you want, something is different in the case of failed RP and successful RP. 

And I agree with C-guy. If Trimix works but nothing else does, there may be an emotional issue.

Equivocate all you want, but there is still a reason one RP succeeds and another does not.

When we investigate car accidents, we don't just throw up our hands and declare "There's no rational reason for this car to wreck, but the other 1000 cars on the same road did not!" Instead we look at the variables that caused the accident...wet roads, slick tires, faulty brakes, drunkeness, etc. We don't just stop driving cars because we figure there is "no rational reason" for that 1 in a thousandth car to wreck.

If urology as a science refuses to consider the variables that distinguish one outcome from another, and resigns itself to the "flip of a coin" fatalism, then it FAILS as a science. And as I said before, judging from my own experience, most urologists would want to take a scientific approach. My own surgeon/urologist was very much concerned about outcomes and risks and the variables that create different outcomes. He is concerned about future patients and the success of their outcomes, not to mention the LIABILITY issues as well. I was warned of the risk variable of a massively enlarged prostate... I could have opted for other procedures but did not because RP fit my profile. 

This is not about Poly sci, this is about science period. 

MK1965
Posts: 179
Joined: Jun 2016

Grinder & C-guy,

Iatrogenic ED is not equal to emotional issue especially for someone who never had EDi issues prior to RP.

ED is sequel of RP. Last week exchanged emails with the surgeon who performed my TURP and RP about ED issues which he could not believe responding to add 5 units of TRIMIX to what I already use. For loss of length, he did not accept it to be related to procedure.

I am wondering if it is possible to get recorded RP to be reviewed by independent experienced surgeon?

MK

Grinder
Posts: 442
Joined: Mar 2017

I didn't want to come out and say it, but I personally would have been getting 2ND and third opinions all along. I am not trying to insult your urologist, but, like all goods and services in a free enterprise system, you have the right to the best available.

I hope someone more knowledgeable will chime in here.

As far as emotional issues, all we are saying is that the stress of "failure to launch" is affecting the launch itself. You would not have had those emotional issues prior to the RP, so you would not have had ED in the first place. We are not saying it is the only cause, but may be a contributing factor.

I am not suggesting a psychiatrist necessarily, because treating your anxiety with medication will only bring on more side effects. Clearly you are stressed about this, and you have good reason to be. But stress only makes matters much worse in all of our physical funtioning. You must get a handle on the stress ED is causing or there will be worse effects than just ED.

We've had several conversations in here about stress reduction. We have discussed such wide topics as prayer, meditation, hobbies, your relationships with family and friends, your relationship with God, yoga, etc. 

Clevelandguy
Posts: 470
Joined: Jun 2015

MK,

Good luck on your journey, I wish you the best.  Sounds like you have had a bad RP procedure, look to the future and don't dwell on the past.  Remember when life gives you lemons you can make lemonade or eat the lemons raw, your choice.  Based on your posts I feel (and I'm not a doctor) that you do have some heavy mental issues dealing with this whole thing, pros can help you sort them out.  Most if not all of us that have an an RP have had some sort of leakage or ED issue, for most of us it got better so the physical does effect the emotional, I know it did in my case.  There are many many cases where people have had major physical trauma and have recovered when their docs told them you will never walk or ski or play tennis again but over came the physical problems due to a postive I will not give in attitude.  So again the mental can effect the physical, once you accept that premise you can start moving forward.

Dave 3+4

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