Surgery/treatment dilemma

[PN_down_under]

This will likely be a long rambling post, but I hope you can stick with me. I am desperate....

I am a 29 y/o male in Australia. I developed PN symptoms after cycling back in August 2010. Initially I had complete numbness of the genitals and erectile dysfunction that was complete for 24 hours. Severe pain (electrical & aching) through the perineum and penis lasted for approximately 3 days, but then completely subsided. Stayed off the bike for a week or so more, felt fine (assumed I had just pinched the nerve), so went for another ride. The same thing happens again after an hour or so. Feeling worried after having never had these symptoms before (I had been cycling consistently to and from work for the previous 2 years), I went and saw a doctor for some advice.
He performed a physical examination and found a deep bruise on the left side of the perineum, between my scrotum and anus. His diagnosis was too much pressure from bicycle seat with resultant bruising and inflammation putting pressure on the nerve. I was to stay off the bike for a month to give the bruising time to subside and then I would be "back to normal".
That seemed to be the case. No problem sitting/jogging/skiing etc for the period of the following month. The only symptom I noticed was a moderate loss of sensation in the penis with an erection and after sex. So once the month had expired, I tried another ride on the bike. This time after just 20 minutes I start to feel uncomfortable and stopped. Too late! Mild uncomfortableness developed into severe genital pain over the next 3 days. Could not sit, severe shooting pain on the underside of the penis and through perineum, erectile dysfunction, felt like I had a ball bearing stuck in the perineum etc. This time my doctor referred me to an urologist, who was completely uninterested. Gave me a good poke (ouch!!!), said I had squashed the nerve against my pelvic bone and to stay off the bike for a good while to give it time to heal. Gave me some anti-inflammatory and sent me on my way. This time symptoms persisted for about 2 weeks before gradually subsiding away. I was able to sit fine (all day in office), general physical activity was no problem...and then I made the biggest mistake of my life (we are about 2.5 months after the initial manifestation of symptoms).
I decided to go for a jog, but after about 3 km, I started feeling a sensation of friction (like rubbing rope) in my perineum with every stride. I slowed down to a gentle stroll and noticed that the genital numbness had returned. Over the next 3 days the symptoms started slowly returning, this time with a vengeance. Pain through perineum and penis was the most severe I had ever experienced. Could not sit, complete erectile dysfunction, and any physical activity was impossible. After 2 weeks of complete bed ridden hell, the symptoms had still not subsided. My erections started slowly to return, but caused excruciating pain (many a night I woke almost screaming out in pain due to the 'morning glory' effect).
After a bit of research I found out about PN, and managed to get a consultation with a Sydney doctor who just happened to have a clinic set up to treat PN. Immediately put onto anti-inflammatory and pain med and then MRI. The results were as follows:

The pudendal nerve appears to be normal from nerve roots at S1-S3 until "suggestion of thickening of the peroneal nerve in the distal portion of the left pudendal canal. It appears to extend along the course of the peroneal branch in particular and possibly the adjacent dorsal nerve of the penis"

This made sense as those areas seemed to be where the pain was predominant (and consistent with the nerve being compressed directly by a bicycle seat with resultant thickening and inflammation). The diagnosis was pudendal neuritis and I was prescribed 2 months of complete rest (at the time I could barely walk to the letterbox and back anyway), and then would have a follow up MRI to judge nerve recovery. Symptoms slightly improved in the time, but were still very prominent (consistent aching perineum pain daily, not able to walk for more that 10 minutes before feeling the friction feeling through the perineum, no ability to sit etc.) Follow up MRI had similar results:

“The thickening of the left pudendal nerve with possible extension into the adjacent dorsal nerve of penis remains present. It appears to be a little less prominent.”

So the doctor says after 2 months of rest the initial severe inflammation had subsided and that I would get gradual improvement over the following 2-3 months until I was effectively recovered (with the provision that cycling should be avoided).

Well it's now been 7 months and I am still battling this horrible condition. Daily pain through perineum and genitals, can’t sit for more than 10 minutes without causing the onset of more severe pain, limited to walking for 15-20 minutes only, decreased genital sensation, sexual activity causes increase in pain level etc etc. Effectively my life is a living hell and I am getting desperate.
I was given a nerve block about 6 weeks ago, which resulted in the pain temporarily disappearing for a period of 12 hours or so. Additionally, contrast was injected into the 2 branches of the nerve (at the level of the ligaments) to observe if the fluid spread consistently. This is meant to show if there is nerve compression in the area. So, yep we know the issue is the pudendal nerve (although I don’t know how the results of the MRI didn’t already show that!) and the left branch contrast supposedly did not spread very well, so it is “suspect”. So now I have to go in for an additional nerve block with the addition of a steroid injection with the view of justifying surgery. Although all these injections are going into the upper level of the nerve, rather than the area's which the MRI results highlighted.

My issue/dilemma is this. The doctor is focussing purely on entrapment at the ligaments, while the injury history, MRI results, and my pain locations point to the nerve compression being lower down in the peroneal branch and dorsal nerve. I am suspicious that this area is being focussed on purely because the only surgery option provided by the clinic is the French procedure (Robert). As a result, I am extremely pessimistic with the prospects of this particular surgery procedure providing any benefit, and just leaving me with further problems due to pelvic instability.

Given a lot of people on this board have a vast knowledge about this condition; I would appreciate some advice on whether my logic is sound. Would my history, symptoms, and MRI results point more towards nerve compression in the groin causing a tunnel syndrome in this area? Surely, if the compression were at the level of the ligaments, the nerve inflammation would be at that level, the pain would be more spread out through the pelvis and would cause pain/paralysis in the rectum/anus as well? Is there not a procedure that could open and have a look at the lower half of the Alcock canal and dorsal nerve area? Any input would be extremely appreciated!

[calluna]

Hi Downunder, and welcome to the forum!

I am so sorry to hear that you are in such pain. Could I ask what pain meds you have tried so far? It is important to get this under control, as if pain continues then it is possible for the pain message to get stuck 'on'.

I would also strongly recommend using a specially shaped cushion to sit on, all the time. Avoiding sitting as much as possible, and if it is unavoidable then only sitting with a cushion - this has become a normal part of life for most of us. The cushion that I use is the Togu Air Active that I bought from Amazon - link here - it is inflatable and comes with a little pump so you can make it as firm or soft as you need, expensive I know, but it is very well made and should last for many years, it is indispensible for me. By the way I did not buy it as a wheelchair cushion but that is what mine looks like - it is basically this cushion together with a padded cover. This one also looks as if it would be good, it is cheaper as well!

With regard to work on the dorsal nerve and the lower part of Alcock's canal, I do know that this is very difficult because of the congestion of that area, there are a lot of blood vessels and important nerves all in close proximity to each other. But I am sure you are right, and that some doctors are now doing this.

The possibility of pelvic instability following surgery is a hot topic, there are strongly held opinions on both sides as to the level of risk. We do however have plenty of people on here who have had this surgery and do not have pelvic instability afterwards.

I wish I could advise you in more detail, and I am sure that someone more knowledgeable will be along soon.

[helenlegs 11]

I can understand your reluctance to consider this surgery, just because it's the only surgery PN available doesn't mean that it is right for you.
It has only been recently discovered that entrapment can be as far along the nerve as the dorsal branch but there are specific doctors for this surgery. Dr. A Lee Dellon in the Baltimore area or Dr. Oskar Aszmann in Vienna,Austria as it seems to be that there has to be a different procedure altogether (seemingly less invaisive? ?which would be a bonus)
Hopefully some of the others will be able to advise you more specifically.
Helen

[HerMajesty]

Hi, I think you are approaching this very logically. A surgery will only work if it is the correct type of surgery to fix the underlying condition.
I have to admit I went through your post a little too fast, but the impression I got is that you do not have enough data yet to know if you are truly entrapped and if so, where and why? It seems like at the outset at least, you could not have had a true entrapment because it subsided with rest. More like inflammation. Although chronic inflammation can lead to scarring so you could be entrapped now, but not necessarily at the level of the ligaments. I know a lot of cyclists become entrapped where the pudendal nerve runs througfh alcock's canal, and that alcock's canal can be narrowed by inflammation of the obturator internus muscle. Has anyone looked into the status of that muscle?
I am one of those people that did not fall into the neat little box of "can be fixed with pudendal decompression surgery", not everyone does. I am sorry to say I am in the USA and do not know what resources are available to you over there, but I would suggest more investigation into your underlying cause first. If you haven't seen it yet, there is an Australia section of this Board which might be a more helpful place to read through looking for resources.

[catherine a]

Hi PN,

Welcome to HOPE, You are in the right place for support and information and we do our best to support you through this horrendous pain.
There are few of us from Australia, you will find us in the Australia/New Zeland section. I'm from Perth and have had PNE surgery myself. Only 1/10 people will eventually progress to surgery so don't become too stressed worrying about that just yet as you may or may not get to that stage. Unfortunately, this condition is very frustrating for both the sufferer as well as the doctors. The medical profession know about it but don't know how to treat it. (Until now) Most of us have been passed from doctor to doctor for many years before finding this website to direct us to the few people who are working hard on research into this problem.

Are you seeing Prof. Vancaillie for your PN issues? Sheryn Jarvis (the physio who works with Prof. V has seen great results in the males she has treated in the past.) Also Sunil (he's from Canberra) he travels to Brisbane to be treated by Peter Dornan another physio who's treating cyclsits with PN. although Peter hasn't had a patient as yet with severe entrapment. This pain can take years to settle down on it's own providing you avoid cycling etc. The nerve needs time to heal and calm down.

Australia has very few medical professionals treating this condition with good results. Prof. Vancaillie, although he's a gynaecologist/pain specilaist is also treating males.
I will PM you with my email contact and phone number.

First thing you have to do is to stop cycling and see a good pain specialist for pain mangement. If you're seeing Prof. V then you've made a good start. Treatment is going to be a long process but you can and will find the answers if you stick with it and don't give up hope. I met a young man from Sydney when I was there who has since moved on with his life after having physio with Sheryn Jarvis. He doesn't post on this website but I could find his email for you. Last time I spoke with him, he was really good and had put his PN problems in the past. It is possible for you to get better without surgery but it's going to take time.

Hang in there. Catherine

[Violet M]

PN Down Under,

You might want to send Ali (username AliPasha1) a private message because he has done quite a bit of research on the anterior (distal) alcock's canal and dorsal penile nerve -- which are the areas you are referring to. The TG approach as performed by Robert does not access the dorsal penile nerve and does not have direct visualization of the distal alcock's canal although some of the TG surgeons use special techniques/tools to access as much of the alcock's canal as they can -- some claiming to go almost to the inferior ramus of the pubic bone.

The TIR approach as performed by Vancaillie does not have direct visualization of the distal alcock's canal and does not access the dorsal penile nerve either. Dr. Dellon in the US and Dr. Aszmann in Austria are the experts on the dorsal nerve.

Hang in there, we've had guys post on the forums who are in similar situations as you and they have gotten their lives back.

Take care,

Violet

[grerichm]

Hey there, i read your story, i understand it, because i have it as well. Its a rough road. My name is gregg, i work with ali, and brian aka surfsup. We have alot of data but unfortunately, we have no concrete solutions, just procedural, surgical options, theories, and testing. But i have suffered with this for about 2 years, and its a killer. I had it hit me in the late summer of 2009, and it has not been cured. I have had my mri in nyc, i had injections into the pudendal region, prolotherapy to the low back, and cortsione injections into the low back as well. I have a labral tear in my hip, and have had injections into that area as well. I use a u shaped cushion, you can go to a garden store and get garden pads cut out a portion to make a u and that will give you some relief. It will save you some money as well

As for what we know. The dorsal surgery can be done by dr azmann in austria as well as dr dellon in baltimore, md. Dr azmann will charge about $8000 or so, and the total will be about 10 to 12k for the trip. He does bilateral for that amount. Dr. Dellon charges about 12k for one side, plus your trip over here will make it a bit more as well. Both are quite capable of the procedure. You have to find out if the dorsal is causing a problem before doing the surgery.

As for the reasons for this pain, no one knows for sure. It could be from weak ligaments, scarring of the nerves, child-birth, hip problems, pelvic instability, etc... The TG approach is used alot. However there are other options, and in some cases, only cutting the SS ligament will not cause pelvic instability, its the ST ligament that seems to be the topic for debate as to whether we develop instability of the pelvis after surgery, and cutting of the ligaments.

my email address is grerichm@gmail.com, please email me, its easier to chat that way. I can answer alot of your questions, and so can ali. Most of all, we know what your going through, and to the extent that support can make you feel better, w can provide that...but the rough part is, that nothing has been curative for a large part of the members as a whole. Some get better through surgery, others dont. Its a risky bet, but in many cases, its our only option, unfortunately. Ali, has worked tirelessly as a patient advocate, for better treatment, better surgical options, and better pain managment. He has also worked to assist in the area of affordability, since many of us are on disability.

I wish you well, please email me,
Regards,
Gregg

This will likely be a long rambling post, but I hope you can stick with me. I am desperate....

I am a 29 y/o male in Australia. I developed PN symptoms after cycling back in August 2010. Initially I had complete numbness of the genitals and erectile dysfunction that was complete for 24 hours. Severe pain (electrical & aching) through the perineum and penis lasted for approximately 3 days, but then completely subsided. Stayed off the bike for a week or so more, felt fine (assumed I had just pinched the nerve), so went for another ride. The same thing happens again after an hour or so. Feeling worried after having never had these symptoms before (I had been cycling consistently to and from work for the previous 2 years), I went and saw a doctor for some advice.
He performed a physical examination and found a deep bruise on the left side of the perineum, between my scrotum and anus. His diagnosis was too much pressure from bicycle seat with resultant bruising and inflammation putting pressure on the nerve. I was to stay off the bike for a month to give the bruising time to subside and then I would be "back to normal".
That seemed to be the case. No problem sitting/jogging/skiing etc for the period of the following month. The only symptom I noticed was a moderate loss of sensation in the penis with an erection and after sex. So once the month had expired, I tried another ride on the bike. This time after just 20 minutes I start to feel uncomfortable and stopped. Too late! Mild uncomfortableness developed into severe genital pain over the next 3 days. Could not sit, severe shooting pain on the underside of the penis and through perineum, erectile dysfunction, felt like I had a ball bearing stuck in the perineum etc. This time my doctor referred me to an urologist, who was completely uninterested. Gave me a good poke (ouch!!!), said I had squashed the nerve against my pelvic bone and to stay off the bike for a good while to give it time to heal. Gave me some anti-inflammatory and sent me on my way. This time symptoms persisted for about 2 weeks before gradually subsiding away. I was able to sit fine (all day in office), general physical activity was no problem...and then I made the biggest mistake of my life (we are about 2.5 months after the initial manifestation of symptoms).
I decided to go for a jog, but after about 3 km, I started feeling a sensation of friction (like rubbing rope) in my perineum with every stride. I slowed down to a gentle stroll and noticed that the genital numbness had returned. Over the next 3 days the symptoms started slowly returning, this time with a vengeance. Pain through perineum and penis was the most severe I had ever experienced. Could not sit, complete erectile dysfunction, and any physical activity was impossible. After 2 weeks of complete bed ridden hell, the symptoms had still not subsided. My erections started slowly to return, but caused excruciating pain (many a night I woke almost screaming out in pain due to the 'morning glory' effect).
After a bit of research I found out about PN, and managed to get a consultation with a Sydney doctor who just happened to have a clinic set up to treat PN. Immediately put onto anti-inflammatory and pain med and then MRI. The results were as follows:

The pudendal nerve appears to be normal from nerve roots at S1-S3 until "suggestion of thickening of the peroneal nerve in the distal portion of the left pudendal canal. It appears to extend along the course of the peroneal branch in particular and possibly the adjacent dorsal nerve of the penis"

This made sense as those areas seemed to be where the pain was predominant (and consistent with the nerve being compressed directly by a bicycle seat with resultant thickening and inflammation). The diagnosis was pudendal neuritis and I was prescribed 2 months of complete rest (at the time I could barely walk to the letterbox and back anyway), and then would have a follow up MRI to judge nerve recovery. Symptoms slightly improved in the time, but were still very prominent (consistent aching perineum pain daily, not able to walk for more that 10 minutes before feeling the friction feeling through the perineum, no ability to sit etc.) Follow up MRI had similar results:

“The thickening of the left pudendal nerve with possible extension into the adjacent dorsal nerve of penis remains present. It appears to be a little less prominent.”

So the doctor says after 2 months of rest the initial severe inflammation had subsided and that I would get gradual improvement over the following 2-3 months until I was effectively recovered (with the provision that cycling should be avoided).

Well it's now been 7 months and I am still battling this horrible condition. Daily pain through perineum and genitals, can’t sit for more than 10 minutes without causing the onset of more severe pain, limited to walking for 15-20 minutes only, decreased genital sensation, sexual activity causes increase in pain level etc etc. Effectively my life is a living hell and I am getting desperate.
I was given a nerve block about 6 weeks ago, which resulted in the pain temporarily disappearing for a period of 12 hours or so. Additionally, contrast was injected into the 2 branches of the nerve (at the level of the ligaments) to observe if the fluid spread consistently. This is meant to show if there is nerve compression in the area. So, yep we know the issue is the pudendal nerve (although I don’t know how the results of the MRI didn’t already show that!) and the left branch contrast supposedly did not spread very well, so it is “suspect”. So now I have to go in for an additional nerve block with the addition of a steroid injection with the view of justifying surgery. Although all these injections are going into the upper level of the nerve, rather than the area's which the MRI results highlighted.

My issue/dilemma is this. The doctor is focussing purely on entrapment at the ligaments, while the injury history, MRI results, and my pain locations point to the nerve compression being lower down in the peroneal branch and dorsal nerve. I am suspicious that this area is being focussed on purely because the only surgery option provided by the clinic is the French procedure (Robert). As a result, I am extremely pessimistic with the prospects of this particular surgery procedure providing any benefit, and just leaving me with further problems due to pelvic instability.

Given a lot of people on this board have a vast knowledge about this condition; I would appreciate some advice on whether my logic is sound. Would my history, symptoms, and MRI results point more towards nerve compression in the groin causing a tunnel syndrome in this area? Surely, if the compression were at the level of the ligaments, the nerve inflammation would be at that level, the pain would be more spread out through the pelvis and would cause pain/paralysis in the rectum/anus as well? Is there not a procedure that could open and have a look at the lower half of the Alcock canal and dorsal nerve area? Any input would be extremely appreciated!

[PN_down_under]

Thank you all for your kind words and advice.

I have stopped all cycling for a good 8 months now, in fact I am ready to throw the bloody things on the rubbush dump! The only physical activity I do now is to swim a few days a week, when I am feeling able, to try and keep my sanity (previous to PN my wife and I were very physically active with sport etc). I stand all day at work (work installed a fancy adjustable workstation) and very rarely sit. I do have a cushion for when I have to sit however (driving etc). As long as I keep all physical activity and sitting to a minimum, I can keep my pain levels to a 2-3 out of 10 on most days (probably makes me sound like a sook compared to other peoples daily levels). So I have not been taking any medication, for pain or otherwise. My thinking was, 'if I can't feel it hurting, I don't know if I am doing an activity that is aggravating the nerve'. But, I can see now that that is pretty silly, so I will follow up with getting some pain meds to stop the 'bed in' of the pain signal.

I guess I am particularly anxious to 'do something' and not just wait and see, as all the research seems to suggest that the longer I leave it, the less likely I will have a good recovery. Also, just with the current period in my life where we are starting to look at buying a house, having a family etc and I don't want this ruining everything. My pain levels have not changed for the past 4 months or so, so I don't see how just waiting will help. I would be happy to sit it out (so to speak!) if I was getting constant, gradual improvement, but I am not seeing that. What if I wait another 6-12 months and all that results in is increased damage to the nerve which is not recoverable? That is my fear.

I am seeing Prof Vancaillie in Sydney, who treats PN. I did not want to name names in my original posting as I knew I was very frustrated and wasn't in a good state of mind (a particularly bad pain flare up) and just needed to vent. I did not want to say anything against someone who has been very helpful and supportive from the beginning, but is very busy with lots of other patients. I also saw Sherrin (pelvic physio) in the intial 2 months of the major pain flare. The first session found pain points on the left side of my pelvic muscles, but 2 months later, when I saw her for a follow up, that was all fine (2 months of laying on the floor will do that). She said everything was normal, as far as my pelvic floor muscles were concerned, so no need for PT. Would that satisfy the question over the inflammation of the obturator internus muscle?

My line of work has taught me to solve problems through logic and a process of elimination, which is what i am trying to do now. If I can get the doctor to inject the nerve block in the alcock canal or lower then I will be happy, because the results from that will help us to identify which section of the nerve is the issue (and the steroids would actually be focussed on the area with inflammation). But I am not sure if that is possible or not via a doctor in Australia.
I am fairly convinced that my situation is as described by HerMajesty. Inflammation of the dorsal &/or peroneal nerve has led to thickening or scarring at the level of the pudendal canal/distal alcock canal and resulted in a tunnel syndrome. I just need a way to confirm or eliminate that, but I am not sure how, beside actually proceeding with surgery down there. It sounds like the dorsal nerve surgery does not go back to the level of the pudendal canal anyway? Can anyone confirm the extent of that surgery procedure?

[Pelvis Stressly]

It sounds like the dorsal nerve surgery does not go back to the level of the pudendal canal anyway?

This is true. It only addresses entrapment at the site Dellon, Aszmann, et al. have deemed the 'dorsal canal'. Links to their 2 papers on the subject can be found halfway down this page... http://www.pudendalhope.info/forum/view ... &start=110 (and if you go back to pg. 1 of that same thread & scroll through the whole thing, you'll likely find all the info you'll ever need on the subject of dorsal nerve entrapment/compression!).

Good luck, PS.

[Cora]

Hey down under - I wanted to welcome you too and you have already had some good suggestions and not sure I have much to add. Other than... I was an avid cyclist too and athlete. I chose physical therapy and pain management and right now, I am doing well and it was slow improvement. Over the years I've discovered that there are similarities for many of us, meaning people who have led very very active lives and emotionally and on all levels this is a big adjustment as you search for what is the best approach for you. So please know you have immense support here. I did give away my bike, but these days I swim and I can now hike about 2 hours a day. I usually do two one hour hikes. I made my own rather unique cushion ( since folks are talking cushions again) and I needed a rather hard one. What I did was take a soft toilet seat and then on top of that I strapped one of those U cushions and I put them in a square tote and that is what I use when I drive. I'm at a point now, due to pain management where I can sit at restaurants without a cushion. All this has taken me a lot of time. I hope that while you are sorting things out you have some decent pain management options. Not sure if others mentioned this or not, but ice becomes a familiar friend to us all. Hang in there, and post often. It helps- and please, bitch away, it's why we are here and there are times that it is much better to bitch here than take it out on anyone at home.
My best,
Cora