Left trapped / Right Pain

[Newdad]

Hi everyone,
I am posting here to gain further understanding of this condition which I have recently been diagnosed with. I am hoping other can assist me with my current situation.

I am a 37 y.o male in Sydney and have been suffering this for about 4 years, it has only been in the last 18 months that my symptoms were troublesome enough to effect normal day living.

Like others on this site my quest to find out what was wrong started approx 2 years ago when I was thinking I was having some sort of food intolerance with the excessive amount of toilet breaks at work. 6 months later a long return trip to Europe resulted in extreme nerve pain throughout my pelvis and could only manage sitting for 10mins without being buckled over in pain. My entire perineum area was red/inflamed and swollen and I had terrible sciatic pain in my left and right leg also.

However over the last 18 months through Endep, physio, stretching and changed working conditions my pain is minor (from an 8/10 to a 4/10) compared to 18 months ago, regardless there is still an underlying issue which is brought on by sitting if I was to do more of it. The majority of my pain initially was left sided but after a few months of physio/stretching Endep etc the pain seems to have switched to be predominately right side.

So about 2 months ago I ended up in Prof Vancaille office here in Sydney, went for a diagnostic nerve block (both sides) which worked for 48 hours as advised. My MRI report came back as
Left Pudendal Nerve : “Delayed separation of the sacrospinous and sacrotuberous ligaments. The adjacent pudendal nerve segment above the ischial spine cannot be clearly separated. Pudendal Nerve compression cannot be excluded”……..
Right Pudendal Nerve: Relatively Normal separation of the sacrospinous and sacrotuberous ligament. No significant narrowing of the adjacent perineural space…..

The follow up with Prof Vancaille in which he advised physio was not a great solution and that I consult an Orthopedic Surgeon regarding the Nerve entrapment. This week I met with the surgeon who suggested the TG approach with severing the sacrotuberous ligament.

So I am hoping people who are more versed in this condition can help with clarifying a few things before I book surgery or go back to Prof Vancaille for his thoughts.

- Why is it that my right side is extremely tight and sore down to the knee (understand the sciatic is also at play here) compared to my left which is relatively 100% normal. Surely an entrapped left pudendal nerve would affect the left more than the right side of the body? Or is this referred pain?

- Re the surgery, I was given the following ratio 33% excellent results, 33% good results, 33 no change but no worse than when they walked in from 70 or so surgeries. The surgeon did not seem to have answers re the above dilemma of left and right and suggested they could cut both… I don’t want to open a can of worms here, but surely this has long term effect of severing ligaments.

- Although physio was dismissed initially has anyone in Syd or Australia had good long term results from a physio/chiro/osteo for treatment of this condition? Since this was a gradual onset rather than a trauma to the area is it possible to work on the left side to try and realign the ligaments?

I have an appointment with my physio in a week and as a third party will discuss the severing of sacrotuberous from a biomechanical perspective.

Does anyone have any thoughts on the above?

Thanks

[Violet M]

Hi Newdad,

My pain was primarily on the right side but the left side had a worse PNMLT score -- the point being that none of the diagnostic tests, including the MRI are 100% accurate for locating a pudendal nerve entrapment. If you have an entrapment that is due to some type of mechanical entrapment related to a pelvic misalignment it won't necessarily show up on the MRI. Just because the right didn't show anything on the MRI doesn't necessarily mean there is no entrapment on that side. You can start out with pain in one area but as the pelvic muscles go into spasm in response to the pain other new problems can arise.

Has your ligament and pelvic stability been evaluated by a physical therapist or manual therapist? Some docs think that post-op pelvic stability can be a concern after having the sacrotuberous ligament cut and some patients have complained of this being a problem after having that ligament cut. It's just something to be aware of before trying surgery.

Not sure where you live but if you could be evaluated by Peter Dornan in Australia (or someone who knows his methods) that might be worthwhile because he really focuses on the biomechanics of the pelvis. The fact that PT helped you improve some and that the pain has moved around makes you wonder if there are some biomechanical issues going on that could be corrected without surgery.

Best,

Violet

[Newdad]

Thanks Violet for your reply.

I appreciate you sharing information of your condition of left vs right. I have moved my physio appointment to this Friday so looks like I have a little more to discuss with them.

Yes I have heard of Peter Dornan, unfortunately Peter is in Brisbane and I am in Sydney. But I will raise this with my physio who practices under one of the best pelvic physio’s here in Sydney to see if she has had some prior dealings with Peters techniques.

I have spent 12 months with this physio and although this condition has become more manageable, I also wonder how much Endep plays in reducing the pain as this physio recommended I start on Endep on my first session. I know when I have missed a couple of days of Endep it seems there is a tightening of my pelvis and the pain is more noticeable. Ideally I want to get off these drugs but only when ready.

[Newdad]

Thought I would post an update to my condition.

On Friday 10th Jan I underwent pudendal nerve surgery here in Sydney, the surgery was performed by Dr Loefler with Prof Vancaille.

On my left side which showed up as an entrapment on my MRI had actually turned out to be the nerve had grown through the ligament, this is a genetic condition and had been there all my life. They ended up freeing the nerve by removing the ligament. This condition is apparently very rare.

On the right side (which the MRI showed no entrapment) they found that the nerve (inferior anal) had branched off early and took the long way around the ligament, not 100% sure which ligament as I was still a little groggy when they told me, but they ended up freeing the nerve which I have noticed over the last couple of days has immediately reduced the redness and soreness around my anus (which was my main symptom of this condition)

I have a follow up with the surgeon 1 week after the surgery and Prof Vancaille 3 weeks after. Although a little sore now where the incisions were made I am off the hard core pain killers and just on panadol every 4 hours to take the edge off the pain (which isn't that bad). I am mixing my time up between standing, walking and the occasional sitting, I have been told to take 3 weeks off work to recover which I plan to do.

So, I would have to say that already my pudendal nerve symptoms have subsided significantly already, still early days as yet but I remain positive that surgery was the right decision to make to alleviate my condition.

Will keep you posted of my progress.

[janetm2]

So happy for you. It seems you were a definite candidate for surgery. Wish you further success and pain relief. Thanks for posting this is what people need to know.
Janet

[catherine a]

Hi New Dad,

Just wanted to say welcome to our forum here in Australia. I'd be interested to know which ligament was removed in order to free the nerve. Do you have your surgical report? Does it say if the whole ligament was removed or just a portion? I know I had the lower third of the sacrospinous ligament removed and although it has taken many years to overcome the procedure and the recovery of the ligaments I have improved tremendously.

At least now you know where your pain was coming from. Something no other doctors in Australia could diagnose. You're in good hands with Dr. Loffler & Prof. Vancaillie. Given time you will heal slowly. All the best and thank you for posting your update. I plan to see Prof. Vancaillie next time I visit Sydney. Without his research we still wouldn't have the answers to this problem. Fortunately, he is allowed to treat males too along with Dr. Loeffler.

Take care and treat yourself well. You've been through the most difficult decision to have surgery or not to have surgery. Here's to much improvement in 2014.

Catherine A (Perth WA)

[Newdad]

Sorry No surgical report Catherine, I have to put in a written request and at this stage to Dr Loeffler but I have no real need for it.

Almost 6 weeks post surgery and the difference is night and day from pre surgery. My pelvis is no longer a locked up mess, no longer have any sciatic pain running down my legs and the anal burning although still slightly red on the skin does not burn anymore and only gets better. I can sit on a coccyx cushion at work and can now last 7-8 hours with only some minor dull ache pain at the end of the day. I get up and walk around or go home and stretch and that dull aching pain subsides and does not linger. Its still a little while before I ditch the cushion however.

My mental state has gone from "Will I ever get over this condition, its going to effect me for the rest of my life" to "It shouldn't be long before i am over this and back to 100%!". I am back to doing normal things in my life with my family and friends without worry about the effect on my pelvis and the pain it will bring. I have even returned to swinging a golf club.

Looking back at the process, Im glad Prf Vancaille put it to me straight after seeing my MRI and Nerve block procedure and advised you need to do the surgery, physio was not going to help me in the long term, I had to remove the problem. Thanks to Violet also that reaffirmed the left/right thing for me as I had problems on both sides even though the MRI did not show issues on both sides. I have no pelvic stability issues by losing 4 ligaments but I will continue to do physio to ensure everything stays in the right state.

There is a lot of information out there on the internet, until you go and see the right specialist who can diagnose and advise your condition I think going in with preconceived notions may rule out the right course of action. I was hesitant about the surgery due to what I have read out there but now extremely pleased with the results by Prf Vancaille and his team have brought.

[catherine a]

Oh I have tears of joy for you New Dad Such positive news is a like a breath of fresh air on this forum. Make sure you don't overdo the golf swings etc. Treat your body gently and things will improve for the better. Our support group here in Perth will be discussing the possibility of bringing Prof. Vancaillie to Perth again for a seminar later in the year. Nothing has been discussed as yet but it's on the agenda. Will update you when I have more information.

I'm so happy for you. Such a short time too....Stay positive. It's such a relief on the stress levels knowing that you've taken the right decision and it went well. You are such an inspiration to other men who can't find the help they need. Great news.

Take care and enjoy every moment of every day.

Catherine

[Newdad]

Thanks Catherine,

Dont worry I wont overdo the golf thing, I was quite surprised when Prf Vancaille gave me the OK to start practicing again. However my Physio has told me wait for the 12 week mark to actually play as both 6 and 12 weeks are significant points in the muscle recovery (glutes) after surgery.

The anesthetists who kept me sedated throughout the surgery mentioned in his pre op consult how early I had found the problem compared to others who had been operated on. He believed that my symptoms and the relatively short period of time that I have had this will assist in the recovery time. I was skeptical but I am glad he was right!

As I mentioned I am not back to 100% but would say 90% + at this stage, I just hope that my good news will help others to see that surgery is not a futile waste of time and money. I know there are people who have had the surgery and are still suffering, I hope they find relief through whatever other avenue that works for them.

[Redevil]

Hi Newdad,
Firstly congos for breaking the vicious circle of PNE. Mate could you tell me if you had tingling sensation around your scrotum area specially when were trying to get aroused.
I've been to Dr loefler he isn't sure about surgical intervention at this stage as he wants to monitor my position for more period of time.