This treatment is something I would chose to try given the opportunity. I know that the ESWT equipment is something that is used in Britain but it has not been employed for pelvic issues at allVery glad it has helped you.
Helen
New Person with Pudendal Nerve Disorder
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: New Person with Pudendal Nerve Disorder
This all sounds so very positive Kone This treatment is something I would chose to try given the opportunity. I know that the ESWT equipment is something that is used in Britain but it has not been employed for pelvic issues at all
Very glad it has helped you.
Helen
This treatment is something I would chose to try given the opportunity. I know that the ESWT equipment is something that is used in Britain but it has not been employed for pelvic issues at allVery glad it has helped you.
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: New Person with Pudendal Nerve Disorder
I too went to see Dr Andrew and feel that I am slowly improving. My improvement has not been as quick as I would have liked but it doesnt help that I'm an accountant and in the middle of tax season right now working long hours. I still require a special seat in order to sit for long periods of time. I do feel the muscles in my lower body are slowly improving. However I've ran into a few stumbling blocks with pain in other areas along the way as my body adjusts. I got orthotics from Dr. Andrew and I think my body may be having a tough time adjusting to them. I too will soon be contemplating a second visit to Dr. Andrew.
Presently I'm still working on developing a team of therapists locally who can help me. I've recently stopped going to physiotherapy and started going to a fitness trainer. The trainer has changed some stretches Dr. Andrew gave me that were causing me to have knee pain. My knees are back to normal after implementing the trainers modifications and new stretches. We are going to start working on strengthening this week.
Kone, I'm glad you've benefited so much from Dr. Andrews treatment. Did you modify your daily activities a lot since seeing him? I have continued working 8 hours a day at a desk and am wondering if I would have seen better results if I had taken time off.
Presently I'm still working on developing a team of therapists locally who can help me. I've recently stopped going to physiotherapy and started going to a fitness trainer. The trainer has changed some stretches Dr. Andrew gave me that were causing me to have knee pain. My knees are back to normal after implementing the trainers modifications and new stretches. We are going to start working on strengthening this week.
Kone, I'm glad you've benefited so much from Dr. Andrews treatment. Did you modify your daily activities a lot since seeing him? I have continued working 8 hours a day at a desk and am wondering if I would have seen better results if I had taken time off.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: New Person with Pudendal Nerve Disorder
Hi spizer,
A belated Welcome to HOPE.
Glad that the ESWT and revised physio with your fitness trainer has been of some benefit. I hope this improves further of course. My nephew is a fitness trainer and keeps giving me helpful tips (although I don't always see it that way
) It will be interesting to see how well you do on your second visit to Cornwall. I have to admit that this is something I am very interested in as if scar tissue can actually be broken down with this procedure I do think I could benefit too. I hope you are able to update us on your experiences there.
Wishing you all the best.
Helen
A belated Welcome
to HOPE.Glad that the ESWT and revised physio with your fitness trainer has been of some benefit. I hope this improves further of course. My nephew is a fitness trainer and keeps giving me helpful tips (although I don't always see it that way
) It will be interesting to see how well you do on your second visit to Cornwall. I have to admit that this is something I am very interested in as if scar tissue can actually be broken down with this procedure I do think I could benefit too. I hope you are able to update us on your experiences there.Wishing you all the best.
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: New Person with Pudendal Nerve Disorder
Spizer,
I can't really answer your question with any degree of accuracy. It seems like the less we sit the better, but that said, I no longer avoid sitting as it does not seem to make matters worse. However, I still sit on a pad just because I want to limit pressure on the perineum. I am happy to hear you got better. I am still not convinced that I can get "cured" by following the Shockwave protocol, however, I cannot deny that I feel better and can do more things. My first visit I made the most progress, perhaps 50% better. The second visit I got another 10-15% better. I still have a ways to go and am doing my stretches and exercises hoping to make more improvements. I will consider a third visit if i have a relapse. This may be the best I can get through shockwave. It's not great, but it is better.
kone
I can't really answer your question with any degree of accuracy. It seems like the less we sit the better, but that said, I no longer avoid sitting as it does not seem to make matters worse. However, I still sit on a pad just because I want to limit pressure on the perineum. I am happy to hear you got better. I am still not convinced that I can get "cured" by following the Shockwave protocol, however, I cannot deny that I feel better and can do more things. My first visit I made the most progress, perhaps 50% better. The second visit I got another 10-15% better. I still have a ways to go and am doing my stretches and exercises hoping to make more improvements. I will consider a third visit if i have a relapse. This may be the best I can get through shockwave. It's not great, but it is better.
kone
Re: New Person with Pudendal Nerve Disorder
Has anyone on this board, or does anyone know of anyone who was cured of PN by the steroid injections? If the answer is "no", then why do PN doctors keep giving them? (I heard the rate of cure was less than 5%).
My shockwave therapy gains have stayed. I can still for hours at a time, which makes my life much more enjoyable. My only therapy is stretching - I stretch for 1/2 hour daily, mostly my legs, perineum and buttocks. I was walking quite a bit, but developed a bad ankle and now need surgery on it to repair a torn ligament. Plan to swim and walk to rehab the ankle.
kone
My shockwave therapy gains have stayed. I can still for hours at a time, which makes my life much more enjoyable. My only therapy is stretching - I stretch for 1/2 hour daily, mostly my legs, perineum and buttocks. I was walking quite a bit, but developed a bad ankle and now need surgery on it to repair a torn ligament. Plan to swim and walk to rehab the ankle.
kone
Re: New Person with Pudendal Nerve Disorder
Kone, this is my 9th year of moderating the PNE forum and I can't remember anyone who has posted that they were cured by nerve blocks. I remember a few people have posted improvement and a few people who have posted long-term worsening of symptoms. My understanding is that nerves blocks are done partly for diagnostic purposes and that the protocol of a series of 3 steroid nerve blocks was developed from the protocol used for carpal tunnel syndrome. I haven't read any literature on the protocol for carpal tunnel so I can't say for sure if that's true. I think the conventional wisdom is that nerve blocks are less invasive with less risks than surgery so it's worth trying them first. It would be interesting to see more studies/peer-reviewed literature on how effective they really are.
Glad to hear your are still experiencing pain relief after ESWT.
Violet
Glad to hear your are still experiencing pain relief after ESWT.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: New Person with Pudendal Nerve Disorder
Kone,
I have only heard of injections being used for the same as what Arlene posted. I am happy to hear that your shockwave therapy produced some lasting results. Sorry to hear about your ankle though. Watch your rehab. I have a bad foot that lead to incorrect walking thus putting strain on my legs,pelvis and low back. I still cannot get the hang of walking correct but my chiro has a huge bag of tricks so we are continuing to keep trying and headed in the right direction. I hope that your ankle just heals and does not kick up a flair with your PN. Good to hear your updates.
Rita
I have only heard of injections being used for the same as what Arlene posted. I am happy to hear that your shockwave therapy produced some lasting results. Sorry to hear about your ankle though. Watch your rehab. I have a bad foot that lead to incorrect walking thus putting strain on my legs,pelvis and low back. I still cannot get the hang of walking correct but my chiro has a huge bag of tricks so we are continuing to keep trying and headed in the right direction. I hope that your ankle just heals and does not kick up a flair with your PN. Good to hear your updates.
Rita
perineal pain started may 2011
continue to take Tramadol daily, Vicodin as needed
Dr Antolak diagnosed PN in Jan 2012, not sure about his diagnosis
recomendations he gave me were injections....which I decided not to do
currently seeing Dr Chad Beiler for chiropractic treatment. all of my many practitioners have diagnosed me with pelvic instability, a rotated right leg and pelvis,femoralacetabular impingement left hip,muscle spasm in obturatur internus muscle
about 70% better
continue to take Tramadol daily, Vicodin as needed
Dr Antolak diagnosed PN in Jan 2012, not sure about his diagnosis
recomendations he gave me were injections....which I decided not to do
currently seeing Dr Chad Beiler for chiropractic treatment. all of my many practitioners have diagnosed me with pelvic instability, a rotated right leg and pelvis,femoralacetabular impingement left hip,muscle spasm in obturatur internus muscle
about 70% better
Update
Severely sprained right ankle needed surgery, so had it done last Wednesday. Casted from knee to toe. Very difficult to get around (on crutches). More PN symptoms as a result of crutching and hopping around. Hope I can make it through this 6-8 week recovery without making PN much worse.
kone
kone
Re: New Person with Pudendal Nerve Disorder
Sorry about your ankle, Kone. I hope you are taking it easy.
Violet
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: New Person with Pudendal Nerve Disorder
Thanks Violet,
The ankle needed fixing, so after the improvement in the two sessions of Shockwave Therapy, and now with the ability to sit down again, I decided to have it done. So far, I have not noticed any intensification of symptoms. Once the cast comes off in 2-3 more weeks, I can begin stretching again and start strengthening my withered frame. Laying around all day is not good for one's constitution!
God bless,
kone
The ankle needed fixing, so after the improvement in the two sessions of Shockwave Therapy, and now with the ability to sit down again, I decided to have it done. So far, I have not noticed any intensification of symptoms. Once the cast comes off in 2-3 more weeks, I can begin stretching again and start strengthening my withered frame. Laying around all day is not good for one's constitution!
God bless,
kone