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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: 1291
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: 752
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: 1004
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: 493
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: 493
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: 493
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

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: 80
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: 752
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: 493
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: 752
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: 493
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: 1004
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: 80
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: 493
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: 752
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: 80
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!

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