Experiences from treatment in Belgium
Experiences from treatment in Belgium
Hello, I have been through a thorough investigation of my left-sided pudendal neuralgia (neurophysiology twice, MRI, QST with temperature and sensory thresholds, duplex ultrasound of pudendal arteries) and thereafter a treatment period of 4 pudendal nerve blocks, with good temporary effect. I have all the typical symtoms of the illness, and neurophysiological findings consistent with the diagnosis. What I can conclude from my thorough investigation is that MRI adds very little to the diagnostic work-up, and that the diagnosis is made up from several elements. Finally I have now done the transperineal surgery with Dr Jacques Beco, very recently. It is much to early to know if the surgery will be beneficial for me, but I can really recommend the overall caretaking from Dr Beco. I have also been in contact with the other prominent physicians within this field, and Dr Beco is absolutely outstanding regarding being available, being empathic and explaining, and he is also very meticulous in his work, and most importantly he is rather reluctant to propose surgery, due to the potential side effects. I think this is a sign of wisdom. He has a scientific approach and wants all patients to be followed up postoperatively with questionnaires and neurophysiological exams. My surgery was uneventful. If somebody wants additional info and is considering consultation in Belgium, I can give him/her more info if desired. Send med an e-mail. Best regards Johannes Jacks Sweden. E-mail: johannes.jacks@sodersjukhuset.se
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Experiences from treatment in Belgium
Hi Johannes,
I do hope that things go well for you. It would be great if you could post with any update as your recovery progresses, wishing you all the best and thanks for the information.
Take care,
Helen
I do hope that things go well for you. It would be great if you could post with any update as your recovery progresses, wishing you all the best and thanks for the information.
Take care,
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: Experiences from treatment in Belgium
Johannes, thanks for your report on your surgery with Dr. Beco. He has done a lot to advance the PNE cause -- through his publications and his website. I wish you all the best in your recovery and would also appreciate occasional updates.
Best regards,
Violet
Best regards,
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: Experiences from treatment in Belgium
Johannes
Thank you for your update regarding Dr Beco. i attend Dr Van Buyten in Sint Niklaas so I am familiar with Belgium and i attend there annually now and will hav eto for life to update my Stimulator.
I wish you best of luck following your surgery and hope that your pain is reduced as a result.
Thank you for your update regarding Dr Beco. i attend Dr Van Buyten in Sint Niklaas so I am familiar with Belgium and i attend there annually now and will hav eto for life to update my Stimulator.
I wish you best of luck following your surgery and hope that your pain is reduced as a result.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Experiences from treatment in Belgium
Dear Violet and Helen,
I will keep you informed about my postoperative evolution! Prior to the surgery, I had a period of CBT therapy and that restored the emotional consequences of the pain. I would maybe not have been emotionally "fit" enough for the surgery if I had not done the CBT. Personnally, I regard the period of all investigations, infiltration blocs and surgery as finished once and for all (a relief in itself), and now I will dedicate all energy to rehabilitation and maintenance of quality of life. Best regards Johannes
I will keep you informed about my postoperative evolution! Prior to the surgery, I had a period of CBT therapy and that restored the emotional consequences of the pain. I would maybe not have been emotionally "fit" enough for the surgery if I had not done the CBT. Personnally, I regard the period of all investigations, infiltration blocs and surgery as finished once and for all (a relief in itself), and now I will dedicate all energy to rehabilitation and maintenance of quality of life. Best regards Johannes
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Experiences from treatment in Belgium
Good for you Johannes,That determination will serve you well.
Take care,
Helen
Take care,
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: Experiences from treatment in Belgium
Wishing you a speedy and full recovery! Please keep us posted.
I have been in contact with Dr. Beco over the last few months and I have nothing but the highest regard for him, he truly cares about peoples well being who are dealing with this problem.
I have been in contact with Dr. Beco over the last few months and I have nothing but the highest regard for him, he truly cares about peoples well being who are dealing with this problem.