New Person with Pudendal Nerve Disorder

[Violet M]

Jim, as I understand it, Dr. Conway does the same approach as Dr. Antolak -- he went and studied the procedure under him. Last I heard they use the TG approach in which they make a vertical cut in the sacrotuberous ligament rather than a horizontal cut. This allows them to spare the ST ligament but some surgeons would argue that it does not allow for adequate visualization and access to fully decompress the nerve. Dr. Robert and Dr. Ansell sever the ST ligament horizontally which may allow for the best visualization but some patients have reported SI joint instability afterward.

I'm not suggesting one way or the other -- I honestly don't know which is the best and I can't tell you their success rates. I can tell you anecdotally what I've read on the forums but it's not a scientific study. Dr. Robert and Ansell have published success rates but Dr. Conway and Antolak have not.

You're right, there is no definitive test for PNE. Did you have an internal rectal exam of the nerve yet? Do you have pain along the course of the PN? What does your PT think?

Violet

[konedog4]

I was initially diagnosed by Dr. Antolak in 2011, about 1 year ago. He did a pudendal motor neuron latency test and found both sides showed slower transmission. I do not have pain along my entire pudendal tract. Sitting is the biggest factor that makes me worse. However, any lifting or squatting makes me very sore too. I have pain in the perineum floor and in the inferior rectal nerve. I have no hip girdle pain whatsoever. I have no pain in the dorsal branch of the pudendal nerve. I believe I am somewhat lucky in that I can still work, provided I sit a limited amount of time on cushions and then be careful in terms of my physical activity. I don't have a lot of pain unless I sit too much or lift too much.


I believe the damage I have in my perineum was done when I rode an exercise bike and got a bruise in that area. It healed after 2 weeks, and about 2 weeks later, i could not longer sit down. I do not stretch, as this makes symptoms worse. I do walk about 4 miles a day and this has more beneficial therapy than anything I can do. My PT has actually made me worse, which the stretches, so i have discontinued going for the time being. I will return to the PT after shockwave therapy.

I am hoping to schedule the shockwave therapy next month.

kone

[Violet M]

Surgery would definitely be a last resort for you since your pain levels are manageable through lifestyle changes. Good luck with ESWT -- hope to hear good news back from you afterward.

Violet

[konedog4]

Just a quick note... I have been to two local well-known, highly-respected doctors who deal with the pelvic floor and colon, and neither one really knew much about pudendal disorders. Neither doctor could give me a diagnosis, and neither could advise further treatment. It goes to show how little this disabling condition is known in the medical community, even by surgeons who work on the pelvic floor area.

If all goes through, next week is my shockwave therapy in Canada. I have to admit that I am not getting prompt replies from the staff or doctor in Cornwall. This is a bit discouraging, considering how much trouble one goes to get there and have treatment. Most of my calls and e-mails have gone unanswered. I hope to give readers here a full report of the therapy and results when I get back.

kone

[Violet M]

Kone, I know what you mean about the clueless docs. I used to think I was the only person in a city of hundreds of thousands who had my symptoms -- based on what my docs were saying.

We'll be thinking of you and wishing you all the best next week. Maybe a little extra pain medication in your suitcase will be in order?

Violet

[helenlegs 11]

Good luck with the ESWT kone. Let us know how you get on.
Take care,
Helen

[konedog4]

Thanks for our good wishes. I have a bottle of Tylenol #3. Hope I don't have to use too much of it as I don't like to take pain meds as they make my ears ring (I've already got hearing loss).

kone

[konedog4]

I just completed 5 days in Cornwall with Dr. Andrews and shockwave therapy. I had 8 treatments over the 5 days. It is too early to state how much improvement I will have, as I still have some swelling in the perineum and alcock's area (from the treatment). I am encouraged by several early signs, namely, he was able to replicate my symptoms by treating alcock's canal bilaterally, I was able to sit on a chair after treatment for a short time without significant pain, and I have more feeling in the area than before treatment. It is a very painful process, extremely painful at times, but it is not to be feared. Dr. Andrews is a true professional, extremely competent and thorough, and addressed all my potential areas of entrapment. No guarantees were given on expected results, and none were expected, as each case is unique. I am cautiously optimistic however, and will continue to post updates as the post-treatment swelling and pain subsides.

Undergoing shockwave therapy is certainly a form of treatment that is effective for some forms of PN. Unfortunately, one does not know if their particular form of PN will respond, and I think for most people in the US, insurance will not cover the treatment. I chose to undergo the therapy because I want to try every valid therapy before deciding on surgery. In my opinion, surgery is the absolute last resort, and the approach and surgeon must be chosen carefully. If anyone has any particular questions on my experience of Shockwave, I am happy to answer your inquiries. Shoot me an e-mail here or at konedog4@yahoo.com.

Hoping for the best, and wishing you all well too,

kone

[helenlegs 11]

Looking forward to your updates konedog. No one can say you haven't explored every option hopefully this will be the last one
Take care,
Helen

[janetm2]

Hoping the best for you and will stay tuned for updates. Thanks for posting as others may be able to learn from it and as you said avoid surgery.