Any experiences with nerve transfer surgery?

Anything goes when it comes to ED.
opolion
Posts: 30
Joined: Wed Jun 24, 2020 2:26 am

Any experiences with nerve transfer surgery?

Postby opolion » Sun Jul 12, 2020 3:12 pm

Hi community!
Does anyone here know if nerve transfer surgery actually works to restore erectyle function?
Any experiences or people who heard of others who had success with it?
I just found 2 providers (one in Australia and one in the US) who are offering such procedure, but I think it's pretty new and hasn't been done many times yet, so I didn't find any patient-reviews that can actually prove its success.
I just recently found out that my severe ED is caused by autonomic nerve damage.
By reading through some posts here on FT I accidentally came across someone who mentioned nerve grafting to restore erectyle function after radical prostatectomy surgeries so I researched about it.
I found the 'Institute for Advanced Reconstruction' in New Jersey, and they seem to provide these nerve graft surgeries for patients with ED due to nerve damage, caused by all different reasons. Does anyone here know if they actually have a good success rate? I know that the ones in Australia claim to have a 70% success rate but they only provide it for former prostatectomy patients.
I don't find any reviews about the NJ based institute, regarding this specific procedure. I'm from Europe but would do anything, if it would actually be able to restore nerve function and erections, but it seems to good to be true to me.
Please let me know if you guys know anything regarding nerve transfer and its viability!
best,
opolion

oldbeek
Posts: 2466
Joined: Sun Sep 10, 2017 1:46 pm
Location: Los Angeles area

Re: Any experiences with nerve transfer surgery?

Postby oldbeek » Mon Jul 20, 2020 1:21 am

All my erection nerves were removed during an RP. I read about the nerve transfer procedure after I had an IPP. I would look into that option if I was a young guy with only nerve damage. Most young guys it is venous leaks that is the problem.
82, good health, RP 7-2017, all nerves taken , PSA 0.05, 4-18,, .07 1/19,.05 4/19, .03 11-21, .04 11-23, implanted 4-1-18, Infra-pubic, AMS lgx 15 cm with 5cm rte. Implant at USC Keck. Dr Boyd and Dr Loh Doyle 6.5 x 5, 800 AUS 7-21-20

opolion
Posts: 30
Joined: Wed Jun 24, 2020 2:26 am

Re: Any experiences with nerve transfer surgery?

Postby opolion » Mon Jul 20, 2020 6:24 am

oldbeek wrote:All my erection nerves were removed during an RP. I read about the nerve transfer procedure after I had an IPP. I would look into that option if I was a young guy with only nerve damage. Most young guys it is venous leaks that is the problem.


Hi oldbeek, thanks for your answer! Yeah I am 25 and have just nerve damage, that's why this option is my only hope at the moment. However, it is really severe and already there since 3.5 years. It is so complicated with all the nerves in the pelvic area and so difficult to find a diagnosis and determine which nerves are damaged, so I just wanted to check if anyone knows more about it. I looked into it but it's just hard to find anything about it. I guess the proceedure is not advanced enough already to be good enough to work

silver daddy 1960
Posts: 203
Joined: Tue Jul 30, 2019 6:53 pm

Re: Any experiences with nerve transfer surgery?

Postby silver daddy 1960 » Mon Jul 20, 2020 8:27 am

Hi Opolion

I did research it and met with Dr. Coombs from Australia both on line and in NYC. He seemed very genuine regarding trying to help men in this predicament. I was not impressed at all with the NJ group because it seemed more USA money grubbing. They would only speak with an appointment and gave little to no info on line.

I almost went for it, i meet their criteria post PC and still have my nerves but basically dead as a door nail without an injection. While speaking in NYC Professor Coombs (they don't say DR) said that the 70% included success with the added use of pills and you must have had function prior to the PC surgery. They were limiting surgery at the time to post PC patients but it is worth speaking with him

I would have gone...actually would have been in lock down in Australia..but i had such a bad experiences with my URO (PC) regarding what he claimed my return to erection would possibly be that i decided that i did not want the same let down if it did not work.

This procedure is out of pocket so you need to have serious do ray me. In australia with the exchange rate in our favor hospital dr etc was around $25k plus the Dr says you have to stay there for about a month before traveling and return a year later. Recovery includes a period of adjustment to numbness on the side of your feet (he warned you will fall down a bit apparently) from the harvest of nerves in your legs. You need to have about $50k including airfare (i figured business class at least post surgery at my age)

It has been a while since my last call with Prof Coombs but i would definitely feel more secure in his hands. BTW he is an infant nero surgeon.

Please message me if you would like or we can chat on phone it really is exciting. Just started looking at the other post regarding the electronic stimulation

best
Silver Daddy
63 yrs old, NYC, DR. Eid Titan Coloplast Dec 10, 2021

opolion
Posts: 30
Joined: Wed Jun 24, 2020 2:26 am

Re: Any experiences with nerve transfer surgery?

Postby opolion » Mon Jul 20, 2020 5:32 pm

silver daddy 1960 wrote:Hi Opolion

I did research it and met with Dr. Coombs from Australia both on line and in NYC. He seemed very genuine regarding trying to help men in this predicament. I was not impressed at all with the NJ group because it seemed more USA money grubbing. They would only speak with an appointment and gave little to no info on line.

I almost went for it, i meet their criteria post PC and still have my nerves but basically dead as a door nail without an injection. While speaking in NYC Professor Coombs (they don't say DR) said that the 70% included success with the added use of pills and you must have had function prior to the PC surgery. They were limiting surgery at the time to post PC patients but it is worth speaking with him

I would have gone...actually would have been in lock down in Australia..but i had such a bad experiences with my URO (PC) regarding what he claimed my return to erection would possibly be that i decided that i did not want the same let down if it did not work.

This procedure is out of pocket so you need to have serious do ray me. In australia with the exchange rate in our favor hospital dr etc was around $25k plus the Dr says you have to stay there for about a month before traveling and return a year later. Recovery includes a period of adjustment to numbness on the side of your feet (he warned you will fall down a bit apparently) from the harvest of nerves in your legs. You need to have about $50k including airfare (i figured business class at least post surgery at my age)

It has been a while since my last call with Prof Coombs but i would definitely feel more secure in his hands. BTW he is an infant nero surgeon.

Please message me if you would like or we can chat on phone it really is exciting. Just started looking at the other post regarding the electronic stimulation

best
Silver Daddy


Hey Silver Daddy,
thanks for your answer, you really seem well informed about nerve grafting, since you even met Professor Coombs in person. I got the a similar impression about the NJ institute, I mailed them but only got generic replies and they kinda pressure you into it.
However, why they seemed interesting to me was, because they offer the procedure not only to prostatectomy patients like you, but also to other reasons of pelvic nerve damage - at least they claim it on their website. But no clue how successful their surgeries are.
I also mailed Dr. Dangerfield's clinic (Professor Coomb's parnter) in Melbourne and asked if they would provide the surgery to someone like me who had nerve damage due to neuropathy, instead of a post prostatectomy patients, however they didn't reply me, which is probably because they don't consider me as a possible patient. At least they could've answered me though.
Anyways, the proceedure might work in your case (with 70% success) but probably not in my case. I think it's hard to know which nerves are damaged in my case, I suppose it's the pelvic splachnic nerves. But I also used to smoke so I don't think I am considerable for Dr. Coombs. I think in general the nerve grafting is really expensive and not fully developed yet so it's not a too promising options.
However, the electronic stimulation prothesis seems like a more promising possible solution to me at the moment and I'm trying to explore that option right now. I think it's definitely something that could help you too since you still have the nerves. And it's much better to have this minimally invasive implant compared to a highly invasive and destructive penile implant. I also think its exciting, and it would be nice to chat, I'll send you a PM
cheers,
opolion

Simbarn
Posts: 358
Joined: Tue Mar 10, 2020 8:08 pm

Re: Any experiences with nerve transfer surgery?

Postby Simbarn » Tue Jul 21, 2020 7:42 pm

opolion wrote:Hi community!
I just recently found out that my severe ED is caused by autonomic nerve damage.
opolion


When I read your first post, it sounded like you had not had a professional diagnosis of the above. In fact the doctors said to you it would not be possible in such a short time from alcohol.
At the time of writing the above you told me in another post that you had not had such a diagnosis from any doctor.

Where did you get the professional diagnosis of autonomic nerve damage by a specialist?

We discussed an autonomic nervous system dysfunction, which is a very different thing.

If you are self diagnosing such a complicated and unusual condition without any medical background and then writing to specialists yourself asking questions, you will not be taken seriously.
Last edited by Simbarn on Wed Jul 22, 2020 6:28 pm, edited 1 time in total.
Age 57, ED issues for 15-20 years. Testosterone replacement with Enanthate and Ovidrel. Currently using generic Tadalafil 2.5mgs and Resveratrol daily.

silver daddy 1960
Posts: 203
Joined: Tue Jul 30, 2019 6:53 pm

Re: Any experiences with nerve transfer surgery?

Postby silver daddy 1960 » Wed Jul 22, 2020 11:30 am

regarding not receiving a reply, check your junk mail. ever one of both their emails always went there, i guess because of out of country. It may also be address by his secretary.

Silver Daddy
63 yrs old, NYC, DR. Eid Titan Coloplast Dec 10, 2021

opolion
Posts: 30
Joined: Wed Jun 24, 2020 2:26 am

Re: Any experiences with nerve transfer surgery?

Postby opolion » Thu Jul 23, 2020 1:42 pm

Simbarn wrote:
opolion wrote:Hi community!
I just recently found out that my severe ED is caused by autonomic nerve damage.
opolion


When I read your first post, it sounded like you had not had a professional diagnosis of the above. In fact the doctors said to you it would not be possible in such a short time from alcohol.
At the time of writing the above you told me in another post that you had not had such a diagnosis from any doctor.

Where did you get the professional diagnosis of autonomic nerve damage by a specialist?

We discussed an autonomic nervous system dysfunction, which is a very different thing.

If you are self diagnosing such a complicated and unusual condition without any medical background and then writing to specialists yourself asking questions, you will not be taken seriously.


Hey Simbarn,
I don't have a professional diagnosis yet. However, at least, by asking my urologist many times for a refferal, I fixed an appointment at the Neuro-Urological department and they will check my nerve conduction velocity in the pelvic area, so I could have one soon.
Yeah you're right in fact it could be anything related to demage or dysfunction of nerves which leads to my erectyle-, bowel-, and bladder problems. Though, I am just almost 100% sure now that this problem got only to do with the nervous system.
You're totally right, I wasn't taken seriously in the beginning because I self diagnosed it, but now at least I'm moving more towards a professional diagnosis. I kinda had to self diagnose it in the beginning because no doctor would have thought about this specific (and rare) problem

opolion
Posts: 30
Joined: Wed Jun 24, 2020 2:26 am

Re: Any experiences with nerve transfer surgery?

Postby opolion » Thu Jul 23, 2020 1:45 pm

silver daddy 1960 wrote:regarding not receiving a reply, check your junk mail. ever one of both their emails always went there, i guess because of out of country. It may also be address by his secretary.

Silver Daddy


I did but haven't received anything yet unfortunately. Yet I don't know if those guys in Australia are the right people for me at the moment anyways. Right now I think Prof. Possover im Switzerland can rather help me, especially also with exactly diagnosing my problem and then maybe findimg a solution, and I am already talking to his medical center

Simbarn
Posts: 358
Joined: Tue Mar 10, 2020 8:08 pm

Re: Any experiences with nerve transfer surgery?

Postby Simbarn » Thu Jul 23, 2020 6:47 pm

opolion wrote:Hey Simbarn,
I don't have a professional diagnosis yet. However, at least, by asking my urologist many times for a refferal, I fixed an appointment at the Neuro-Urological department and they will check my nerve conduction velocity in the pelvic area, so I could have one soon.
Yeah you're right in fact it could be anything related to demage or dysfunction of nerves which leads to my erectyle-, bowel-, and bladder problems. Though, I am just almost 100% sure now that this problem got only to do with the nervous system.
You're totally right, I wasn't taken seriously in the beginning because I self diagnosed it, but now at least I'm moving more towards a professional diagnosis. I kinda had to self diagnose it in the beginning because no doctor would have thought about this specific (and rare) problem


Good! I am glad you are seeing someone experienced in that area. Please do let us know what they find.
Age 57, ED issues for 15-20 years. Testosterone replacement with Enanthate and Ovidrel. Currently using generic Tadalafil 2.5mgs and Resveratrol daily.


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