New Person with Pudendal Nerve Disorder

[konedog4]

Progress report - approximately 3 months after last shockwave treatment session.

I feel great. I no longer need to sit on cushions. I can run, sprint, exercise, exert, and do all the things I could not when I had PN. I am now leading a "normal" life again as far as disability from PN is concerned. I feel about 95% healed.

I am still not doing pull-ups or squats, as both of these triggered bad relapses in my past. Perhaps someday again I will slowly introduce these back into my routine.

I feel like I have a new lease on life. I am very grateful for this forum, for without it, I never would have heard of shockwave or Dr. Andrews.

KathyD, I appreciate your entry. Thank you for your kind words.

No progress yet on getting shockwave here in the US for PN use.

kone

[nyt]

Fantastic news!! I am so happy for you. Thanks for coming back and sharing your successful treatment with us.

[konedog4]

I'm sitting, literally, in the Ottawa Airport awaiting my return flight home. I have just had three more shockwave treatments with Dr. Andrews. Each session concentrated on the last area to have symptoms - the midline area of the perineum. All three were painful sessions to endure, but I've grown accustomed to that. No pain, no gain. Had about 20000 pulses of energy each session. Dr. Andrews is superb at finding the key areas to treat.

When I first went to see Dr. Andrews two years ago, I could not sit at all without terrific pain. Prior to this session, I can sit again mostly comfortable in all but a few chairs. I can also exercise vigorously as well. I came here again, as I have one spot that is still tender. We hit this spot three times, so I am confident that the correct area was treated.

I am sore, but not terribly so. The soreness wears off after a week or so. My job now is to keep limber by daily sessions of stretching, and then to continue stretching as a daily discipline. Stretching has never set me back; it has always been beneficial.

I will write again in a week or two to update. I am optimistic.

Unfortunately, I am not optimistic in regards to getting shockwave in the USA. I write the FDA, and they need a petition by a medical group of doctors and professionals citing the need for shockwave in this application. I cannot do anymore myself. If anyone knows of a doctor or a group of doctors or therapists who would be willing to submit a petition, please send me their names.

Shockwave is a valuable therapy and it dhod not be excluded from the therapists in the U.S. and elsewhere.

Kone.

[Violet M]

Kone, it may take a credible study by Dr. Andrews, published in a credible journal, to get things moving in the US. It seems like peer-reviewed literature is what "talks" in the US. Thanks for your efforts.

Hope you will be fine within a week.

Violet

[konedog4]

4 weeks post-op from my fourth session of shockwave therapy in Ottawa. I iniially had a flare. It increased all my usual symptoms quite a bit. Now, after it all has settled down, I have very few symptoms. I am sitting with only very minor discomfort - nothing like it was initially. I can exercise, run, lift weights, etc. I can stretch as well, with no increase in symptoms. I am overall pleased with the results. I still have some minor symptomology, but it does not really impact my life. Now I hope the improvement stays and I can remain mostly symptom free.

kone

[wannagetbetter]

Is this shockwave therapy effective for PNE or just PN?

[Violet M]

My understanding is that Dr. Andrew treats people who have symptoms of PN/PNE. I'm not sure you can always tell whether there is an entrapment without actually going in surgically to see.

Violet

[konedog4]

Yes, shockwave can reduce entrapment. I initially had bilateral entrapment. After several sessions of shockwave, my left side completely cleared up, but still had symptoms on the right side (but not as severe). I have been working on the right side the last two visits in Ottawa (this year) and that side is more resistant to treatment than my left side. My right side is so much better, but it is not completely gone like it is on the left. I have almost no pain anymore, but if I sit in certain chairs for an extended period of time, then I can feel some soreness/tenderness. So I still sit on a pad most of the time just to prevent relapse.

[solarmom]

Is this shockwave the same as the eswt that I see advertised for plantar fasciitis and tennis elbow?
For example if I find an orthopedic group that does this can they try it in areas such as near the sacrotuberous ligament or do they need FDA approval?

[Violet M]

My understanding is that it's the same type of ESWT and that it has been FDA approved for certain conditions. http://www.bcbsms.com/com/bcbsms/apps/P ... ESWT).html
Often when treatment becomes FDA approved for one disease it may also be used "off-label" for other conditions similar to off-label drugs -- for instance steroids being used in epidural injections which is very common even though it is not FDA approved.
http://www.fda.gov/ForPatients/Other/Of ... efault.htm

I don't know if you could get your ortho group to use ESWT for pelvic pain -- or how well trained they would be to do it. Good luck with it. I would be interested to hear if the ortho group will do the procedure for you.

Violet