That's great that you the MRI place will be able to follow the Potter instructions! Let us know how it goes. Yes, I'm not surprised that a phone consult is out of the question, at least at this point. But, it's good that they suggested sending in your health history. Have you been formally diagnosed with pn? If not, I think that will be the first step with Hibner or the French doctors. Someone just had surgery in France (within the past few weeks), so you could review his posts for info on his doctor and how he contacted him.
April
Leviator ani syndrome or pudendal neuralgia or just Coccydy?
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
Dr. Stephane Ploteau does PNE surgery in Nantes now. I'm not sure how to contact him but you could probably try the contact number on this website: https://www.chu-nantes.fr/gynecologie-59164.kjsp
I think it would be much cheaper to go to Dr. Ploteau than to Dr. Hibner and since he used to work with Prof. Robert he probably does a similar approach to what Dr. Hibner does.
Violet
I think it would be much cheaper to go to Dr. Ploteau than to Dr. Hibner and since he used to work with Prof. Robert he probably does a similar approach to what Dr. Hibner does.
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: Leviator ani syndrome or pudendal neuralgia or just Cocc
Thanks a lot April and violet. I hope you are doing well recovering. I have contacted dr Ploteau and he replied the next day 
such a nice dr and told me to send the reports directly to him I am waiting for the mri results to send everything to him yea you are totally right violet, it is much cheaper also it is only 4 hours flight. The us will be 18 hours which in my situation is a big deal. Yes April I have been officially diagonised with PN and the positive nerve block further proved it, however we get diagnoses orally in Egypt so I will need to ask for an official report ( I am now collecting the official reports). However I was finally able to find a good pt who knows about PN ( al amal physical center in maadi). He diagonised me with sijd, very tight pelvic floor muscles and PN. I am so discouraged by this, he did trigger points release ( I almost had all the trigger points that could possibly exist) it was VERY painful. I was so diheartened. I will keep seeing this pt until I visit dr Stephane. Up to this point I dunno if I have PN or PNE. I read an abstract written by dr Stephane about a minimally invasive procedure where they insert a camera to see where the entrapment exactly is before invasive procedures . I am willing to try it before doing any more invasive surgery because I am suspecting a performis problem and sijd. I am waiting for the result of the Potter MrI even though I doubt that they will be able to read it here but I will send it to dr Ploteau. I will keep you guys updated.
Thanks a lot April and Violet
such a nice dr and told me to send the reports directly to him I am waiting for the mri results to send everything to him yea you are totally right violet, it is much cheaper also it is only 4 hours flight. The us will be 18 hours which in my situation is a big deal. Yes April I have been officially diagonised with PN and the positive nerve block further proved it, however we get diagnoses orally in Egypt so I will need to ask for an official report ( I am now collecting the official reports). However I was finally able to find a good pt who knows about PN ( al amal physical center in maadi). He diagonised me with sijd, very tight pelvic floor muscles and PN. I am so discouraged by this, he did trigger points release ( I almost had all the trigger points that could possibly exist) it was VERY painful. I was so diheartened. I will keep seeing this pt until I visit dr Stephane. Up to this point I dunno if I have PN or PNE. I read an abstract written by dr Stephane about a minimally invasive procedure where they insert a camera to see where the entrapment exactly is before invasive procedures . I am willing to try it before doing any more invasive surgery because I am suspecting a performis problem and sijd. I am waiting for the result of the Potter MrI even though I doubt that they will be able to read it here but I will send it to dr Ploteau. I will keep you guys updated. Thanks a lot April and Violet
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
Who does the minimal invasive camera procedure?
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
https://www.researchgate.net/publicatio ... ical_study
it was a study conducted by dr stephane Plotau in Nantes, when I e-mailed dr Plataue ,I told him I am more than willing to try it.
I don't know if they perform it on a normal basis (or it is still under study), since the study was published in 2017. we will know after I send him all my documents. I will update you if I was able to do the procedure. it sounds so promising
it was a study conducted by dr stephane Plotau in Nantes, when I e-mailed dr Plataue ,I told him I am more than willing to try it.
I don't know if they perform it on a normal basis (or it is still under study), since the study was published in 2017. we will know after I send him all my documents. I will update you if I was able to do the procedure. it sounds so promising
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
Here is my MRN and Potter MRI results, thanks to you April I can prove the PNE and seek proper treatment.
-mild bilateral pudendal neuropathy is seen, where the pudendal nerves appear to be slightly swollen with high signal inside being more evident on the left side.
-this high signal is most evident at the Alcock’s canal and at the level of the ischial spine.
-there is mild thickening noted at the left sacro-tuberous and sacrifice-spinous ligament, accentuating the entrapment of the left pudendal nerve at the left greater sciatica foraman.
-no compressive masses noted either within the pelvis or at the Alcock’s canal bilaterally.
-this comprise is more evident on the left side and is best demonstrated on the PSIF image. Where the left nerve is showing signal alternation at the level of the ischial spine and the sacro-spinous ligament
- a note is made of bilateral gluteus Maximus muscle high signal being more evident on the left side especially at its outer and upper fibers with overlaying subcutaneous tissue changes, likely due to intra muscular injection
The crazy thing is my pain is predominant in the right side!! I have sciatica like pain even though my spine is perfectly fine, maybe it is because of si-joint disfunction
Please tell me how should I adress this, pt seems to improve my sciatica like pain. However since I really have PNE I think that pt will likely be useless for the pudental nerve pain.
I used to lay down on my side for months prior to my PN symptoms with my knees bent and a pillow inbetween. When I changed the position to laying flat on my back and taking Valium for a month the sharp ball in my rectum was gone. I still have horrible burning pain in my rectum and all the pudendal region
Thanks a lot Violet and April
-mild bilateral pudendal neuropathy is seen, where the pudendal nerves appear to be slightly swollen with high signal inside being more evident on the left side.
-this high signal is most evident at the Alcock’s canal and at the level of the ischial spine.
-there is mild thickening noted at the left sacro-tuberous and sacrifice-spinous ligament, accentuating the entrapment of the left pudendal nerve at the left greater sciatica foraman.
-no compressive masses noted either within the pelvis or at the Alcock’s canal bilaterally.
-this comprise is more evident on the left side and is best demonstrated on the PSIF image. Where the left nerve is showing signal alternation at the level of the ischial spine and the sacro-spinous ligament
- a note is made of bilateral gluteus Maximus muscle high signal being more evident on the left side especially at its outer and upper fibers with overlaying subcutaneous tissue changes, likely due to intra muscular injection
The crazy thing is my pain is predominant in the right side!! I have sciatica like pain even though my spine is perfectly fine, maybe it is because of si-joint disfunction
Please tell me how should I adress this, pt seems to improve my sciatica like pain. However since I really have PNE I think that pt will likely be useless for the pudental nerve pain.
I used to lay down on my side for months prior to my PN symptoms with my knees bent and a pillow inbetween. When I changed the position to laying flat on my back and taking Valium for a month the sharp ball in my rectum was gone. I still have horrible burning pain in my rectum and all the pudendal region
Thanks a lot Violet and April
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
oh, that's great! I was overjoyed when my MRI report matched what I had been feeling for all those years. And I'm sure it's a relief for you too. But, it is odd that your pain is greater on the right than the left. You do have pn pain on both sides, though, right? The left side pain could be referred pain, but it's surprising that it is stronger than on the right. I had burning on both sides but only got stabbing-like pain on the left.
Your report notes mild thickening between the SST and SSL (the most common place for compression): "-there is mild thickening noted at the left sacro-tuberous and sacrifice-spinous ligament, accentuating the entrapment of the left pudendal nerve at the left greater sciatica foraman." I'm guessing that is scar tissue (I had scar tissue on my nerve in that area). And there must be asymmetry with more on the left than the right. But since the reports says it's thick on both sides, the radiologist must have some absolute measure of thickness to use as a base of comparison.
I don't know what "high signal" means: "-mild bilateral pudendal neuropathy is seen, where the pudendal nerves appear to be slightly swollen with high signal inside being more evident on the left side." Violet will probably know. It's not clear where this swelling is. (I had edema between my SST and SSL, which the radiologist described as highly suggestive of pne).
What is your next step? Did you send this to the French doctors and Hibner? Hopefully, one of them can help you interpret these results and let you know if you are a good candidate for surgery. I'm not sure what side they'd want to do surgery on, though.
April
Your report notes mild thickening between the SST and SSL (the most common place for compression): "-there is mild thickening noted at the left sacro-tuberous and sacrifice-spinous ligament, accentuating the entrapment of the left pudendal nerve at the left greater sciatica foraman." I'm guessing that is scar tissue (I had scar tissue on my nerve in that area). And there must be asymmetry with more on the left than the right. But since the reports says it's thick on both sides, the radiologist must have some absolute measure of thickness to use as a base of comparison.
I don't know what "high signal" means: "-mild bilateral pudendal neuropathy is seen, where the pudendal nerves appear to be slightly swollen with high signal inside being more evident on the left side." Violet will probably know. It's not clear where this swelling is. (I had edema between my SST and SSL, which the radiologist described as highly suggestive of pne).
What is your next step? Did you send this to the French doctors and Hibner? Hopefully, one of them can help you interpret these results and let you know if you are a good candidate for surgery. I'm not sure what side they'd want to do surgery on, though.
April
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
Hii April thank you dear. I hope you are doing well after your surgery. Yes I have pain in both sides but it significantly greater on the right side also my pain inside the rectum is at 6 o’clock towards the coccyx. My pt says my sijd caused the coccyx and pudental problem, he says it is the root cause. Dr ismail Shafik urologist says I probably have a problem from my back that caused the PN because I have thight radiating pain. My neurologist dr ihab el refaee said the root problem is my coccyx because it is tender and I have mild coccgeal scoliotic which is concave to the left side, he said that’s why my right side is more painful. He said that the coccyx is hyper mobile so it inflame the pudendal nerve. He wants to perform prf close to the rectum. Even though I had several steroid shots to the coccyx which only worsened my pain. He said that my sijd can’t be my problem because it is not tender to palaptation. However I can’t really trust him, since he said if I can’t sit then the only possible cause will be from my spine. He refused to give stronger meds, he actually wanted me to stop taking my current meds ( said it is too strong! Even though compared to any one with PN my dose is very very little). I am so lost, I sent my documents to dr platoe and I will send them to dr hibner too. Forgot to say my pt is insisting that he can free the nerve by physical therapy since it is in the mild stage. Every doctor is saying a very different thing. My neuro said that the prf is zero risk ( I know that nothing is zero risk). Also, dr ismail shafik said that he will give me a course of nerve injections 3 times per week for couple of weeks that will free the nerve but he refused to tell me the ingredients of the blocks. He said it is a mixture of 5 components. I am so scared of doing the prf, since anything I do here only worsen my symptoms. I have never been that lost.
Thanks April,
Lelej
Thanks April,
Lelej
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
Oh, that is confusing! Hm... well, I do think it's true that nothing is zero risk, and it also seems unlikely that pt could decompress a nerve. I think it would be useful to get a full diagnostic assessment and treatment plan from one of the French doctors or, if possible, Hibner. So, I think your approach makes a lot of sense. In the end, I was glad I did not try some of the procedures that were available. I think in my case, at least, they may not have worked. So I think waiting until you can meet with a more experienced doctor makes sense. Thanks for the updates!
April
April
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
Thank you April, you are totally right. I didn’t go with the prf procedure. After I underwent a coccyx manipulation under anesthesia amid oct and ended up with a full fledged PN pain in all the pudendal nerve branches ( the doctor said it is a simple procedure that can’t make my pain worse. Yet in the follow up I asked about the possibility of the pudendal nerve being the culprit, he said I have never heared of such a nerve! He is a ortho prof! I became so careful in choosing what procedures to go through and not to follow blindly.
However I have some good news that I ought to share that might help someone else. I stopped pt for a week and went with the blind PN shots with dr Ismail Shafik (he said that the shots might work for mild entrapments, if not I will have to do decompression surgery). I took 3 shots last week ( he said the course is from 7-10 shots, 3 per week). And after a week I see significant improvement! The burning pain is so much better! I still have pain in the rectal branch (it was better until I did an internal rectal message 2 weeks ago following my pt advise ( I guess I just got to close to the coccyx which gave me a very bad flare up- I was back to the sharp razors rectal ball! Horrible! After the 3 shots I still have pain but not like before. My burning bikini lines are Much better... I still have hip pain close to the inbetween hips area on the right side and rectal or coccyx pain ( I can’t really differentiate because they are so close).
-another thing I noticed is my sciatica pain is unrelated to the PN pain. Because the shots contain anesthetic, however I still experience Burning pain on my hips and aching pain on my coccyx upper joint close to the sacrum.
I still couldn’t sit after the block because of the horrible hip burning so I guess it must be related to the si-joint or coccyx, or possibly both. I guess if I really have si-joint dysfunction I am a bad candidate for the t-g approach, if I had to resort to surgery. I have contacted every possible French dr who knows about coccyx and PN pathologies, but I never get a reply back
I almost begged some of them like dr jj labat and Maigne Jean-yves, he is an expert in coccyx diseases. So I wanted to rule out coccyx pathology before going for decompression. He refused to look at my scans, or reports and said I will have to go for an appointment in Paris first. For 2 days stay in Paris to give me an assessment before he can make any treatment plan. I begged him to extend the period so I can at least get an initial treatment or look at my scans. I offered to pay for online assessment, phone consultation, appointment fees and/or hospital stay upfront. Because it if the appointment is 2 days I will most likely get a visa for only 2 days. So I have to travel from Egypt to Paris for 2 days assessment then go back to Egypt, apply for another visa to go back to Paris. Forget about the expenses (I am lucky enough to be from a wealthy family) each visa issuing takes from 1-3 months and I can’t sit !! Let alone fly back and forth. The only dr I trust in Egypt is dr Ismail Shafik. I contacted dr attaman for treatment for coccyx or si-joint, he wanted me to stay at least 2weeks in the US, however I haven’t read many good reviews about his treatments.. so I dunno
I will continue the treatment with dr Ismail Shafik. Also dr Ismail said he will help me with the other pathologies but we need to work at one thing at a time. I will update u all in hope that this might help someone in a similar situation
However I have some good news that I ought to share that might help someone else. I stopped pt for a week and went with the blind PN shots with dr Ismail Shafik (he said that the shots might work for mild entrapments, if not I will have to do decompression surgery). I took 3 shots last week ( he said the course is from 7-10 shots, 3 per week). And after a week I see significant improvement! The burning pain is so much better! I still have pain in the rectal branch (it was better until I did an internal rectal message 2 weeks ago following my pt advise ( I guess I just got to close to the coccyx which gave me a very bad flare up- I was back to the sharp razors rectal ball! Horrible! After the 3 shots I still have pain but not like before. My burning bikini lines are Much better... I still have hip pain close to the inbetween hips area on the right side and rectal or coccyx pain ( I can’t really differentiate because they are so close).
-another thing I noticed is my sciatica pain is unrelated to the PN pain. Because the shots contain anesthetic, however I still experience Burning pain on my hips and aching pain on my coccyx upper joint close to the sacrum.
I still couldn’t sit after the block because of the horrible hip burning so I guess it must be related to the si-joint or coccyx, or possibly both. I guess if I really have si-joint dysfunction I am a bad candidate for the t-g approach, if I had to resort to surgery. I have contacted every possible French dr who knows about coccyx and PN pathologies, but I never get a reply back
I almost begged some of them like dr jj labat and Maigne Jean-yves, he is an expert in coccyx diseases. So I wanted to rule out coccyx pathology before going for decompression. He refused to look at my scans, or reports and said I will have to go for an appointment in Paris first. For 2 days stay in Paris to give me an assessment before he can make any treatment plan. I begged him to extend the period so I can at least get an initial treatment or look at my scans. I offered to pay for online assessment, phone consultation, appointment fees and/or hospital stay upfront. Because it if the appointment is 2 days I will most likely get a visa for only 2 days. So I have to travel from Egypt to Paris for 2 days assessment then go back to Egypt, apply for another visa to go back to Paris. Forget about the expenses (I am lucky enough to be from a wealthy family) each visa issuing takes from 1-3 months and I can’t sit !! Let alone fly back and forth. The only dr I trust in Egypt is dr Ismail Shafik. I contacted dr attaman for treatment for coccyx or si-joint, he wanted me to stay at least 2weeks in the US, however I haven’t read many good reviews about his treatments.. so I dunnoI will continue the treatment with dr Ismail Shafik. Also dr Ismail said he will help me with the other pathologies but we need to work at one thing at a time. I will update u all in hope that this might help someone in a similar situation