Health Organization for Pudendal Education

Hi Earl,

I could be wrong but anatomically, it seems that if you are having problems with sitting that it's unlikely the dorsal nerve that's the problem but rather a part of the nerve more proximal to the spine. I'm not sure where Dr. Filler decompressed the nerve but as I understand it he takes a minimally invasive approach so it's possible the section of nerve you needed to have released was not released. Do you know from the surgery report what he did?

I think you are smart to have the Potter MRI and then make a decision. I know that none of the diagnositc tools are 100% accurate but each one adds a bit of info to the puzzle. Just curious -- what was your response to the nerve blocks from Antolak? Did you have any temporary (several hours) of relief? Given your history, clearly there was some sort of injury. If you haven't had an evaluation by a good PT who understands the mechanics of the pelvis and pudendal neuralgia that might be something you want to do. I don't know if Dr. Wise's protocol addresses sacroiliac joint dysfunction/pelvic misalignment etc. or if they are focused primarily on myofascial release of the pelvis. If they didn't address the pelvic mechanics you really owe it to yourself to have that done. Also, a lot of people are saying hip injuries are turning out to be the cause of their pelvic pain -- might be something to pursue based on your history of injury.

Best,

Violet

Hi violet,
I am hoping my 3t MRI will show more and also I'm hoping Dr Hibners pt maybe will help too in the diagnosis.
I did have some benefit from the 2nd set of injections but then the last set with the ct guided (not by Antolak himself but ordered by him)injections actually made me worse for a time. Looking back I think I may have made a mistake switching from Dr Antolak to Dr Filler. At the time a neurologist seemed more qualified . Dr Antolak is a very compassionate man with tons of experience in PNE. I am hoping dr Hibner is better yet because of his training with France and elsewhere .
I feel too that dr Filler missed my actual problem spot. He described my surgery as a bilateral transglutial approach for resection of the periformis muscle,neuroplasty of sciatic nerve ,pudendal nerve,and obturator internus nerve. I hope it was as you said 'minimally invasive ' . At least in terms of its potential to cause damage elsewhere. I do feel the periformis problems I was having improved quite a bit. I could not even handle a wallet in my pocket before surgery it was so sensitive back there. I'm actually glad I may not have a dorsal nerve issue because that seems less successful to treat.At the present I'm anxious that I haven't treated this problem quicker because the longer it goes the less likely there will be resolution. I've been on the spine problem trail and the urology trail too long before I got on the PNE trail.

Earl, do you know if Dr. Filler transected the sacrotuberous ligament or sacrospinous ligament to free up a possible compression at the ischial spine area?

The last injection in the series by Dr. Antolak that's done by ct guidance is into the alcock's canal slightly distal to the ischial spine. I had my injections from Dr. Antolak (and team) and that's the injection that gave me the worst flare-up afterward too.

I've never heard of anyone who got worse from surgery from Dr. Filler -- but I can only think of one person who got better and that was for piriformis surgery, not pudendal. I'm glad you got a bit of relief from surgery but I'm sorry it didn't work out better.

Violet

Hi Violet'
Sorry about my very slow reponse. I am so glad to have found this site because i am still learning the anatomy and terminology in regards to the surgerys . I had to research what you meant by the Sacrotuberous an sacrospinious ligament at the ischial spine.I'm not sure but I'll write what my surgery report says.'progress was made between layers of gluteal musculature until the pre-periformis fascia was reached.......the sciatic nerve as well as the superior ,inferior, and glutial nerves were identified and carefully protected.'then it mentions ,'further neuroplasty was carried out along the sciatic nerve proximally and distally'. I think that so far only the periformis surgery is described. Then the surgery report goes on to say, 'Attention was then turned to the retro sciatic dissection. The obturator internus nerve and pudendal nerves were identified and proved to have some moderate adhesions in one particular point of fixation. The point of fixation with a fibrous band was mobilized by releasing the fibrous band and both nerve elements were freed along their course from within the greater sciatic notch thru the retro-sciatic space and then thru the lesser sciatic notch alng toward the Alcox canal.' This description is similar on left and right .
It does say they used 'Supra film ' to prevent adhesions .I hope that is not causing me problems as shown by Dr Dellon with other types of adhesion preventors.
I don't like how it says 'along toward the Alcox canal '. That must mean the Alcox canal was not inspected.
Sorry about such a long post. I thought maybe all that surgery jargon would allow you to help me know if he did look at those ligaments at the ischial spine.
Im hoping to have a 3 Tesla MRI in Phoenix the same trip I see Dr Hibner. I was hoping Dr Potter could still read it in addition to Others in Phoenix. I haven't yet cancelled my NY MRI but hope to. Has anyone else had that work out ?
I wish the best to all suffering with this!! "This too shall pass"

Hi Earl,

Well, it doesn't specifically say that any compression or entrapment was released at the ligamental grip where the ST and SS ligaments criss-cross. I think that if either of those ligaments had been cut to release the nerve the surgical report would have made note of it but I could be wrong. Typically surgery reports do say if those ligaments are severed so it seems unlikely that Dr. Filler did any nerve release there -- but it's possible he looked at the area and decided it didn't need to be released. Not sure how he would have made that determination though because it's my understanding that in order to see the nerve if you are coming in through the glutes you have to sever the ST ligament in order to see the pudendal nerve.

So, if I understand you correctly -- you have an appt for the Potter 3T MRI in NYC and also an appt with Dr. Hibner and a 3T MRI in Phoenix. Last I knew, Dr. Hibner's team only had access to the 1.5 MRI but maybe they have improved their imaging capabilities. You might want to check with them for sure on whether it is 3T or 1.5T. If Hibner now has the 3T -- you might want to postpone your trip to NY for the Potter MRI until after you get the Hibner MRI report back because you may decide you don't need both.

Take care,

Violet

Hello guys. Interesting points.

Can I ask those who have attended the 'Headache in the Pelvis' clinic how much it cost? Also how intensive it is - 7, 8 hours a day or more?

Also, if any of you have heard of anyone who has benefited from it?

I guess one of the principles underlying it is the theory that the problem is basically subconscious and not physical, so wouldn't help with actual PNE....

J

The 'Headache in the Pelvis' clinic actually does deal a lot with the physical aspects of nerve compression with many personal sessions with a PT who teaches internal as well as external muscle tension release. Each clinic participant receives the internal wand . They also teach relaxation and are each given an mp5 of relaxation sessions to be continued along with the PT or trigger point release .
The thinking behind the program is that the pelvic muscles compress nerves which pass thru them causing pain and disfunction and that by relaxing these muscles by muscle tension release ,as well as stretches and reducing stress ,these nerves and muscles will return to there normal state over time. Dr Filler,whom ive lost some confidence in ,did say that he felt if my obturatur inturnus muscle would stop spasming that the pudendal nerve running thru it could possibly heal.
Part of the problem is that if there is trully entrapment nothing other than surgery will correct it. They are strongly against surgery . I feel they lump all pelvic conditions into one as if most can be corrected with their method. They would almost deny there is such a thing as PNE against a host of doctors to the contrary.
The clinic costs about 3600$ and lasts about 6 days with 7 or 8 hours a day sessions.
I feel some are trully helped by the program and would not discourage anyone from going but even they would say it does not fix every one. It did feel good to meet others with similar problems and recognize I'm not alone .

Earl,
Dr.Filler has 3 entry points for his surgery as described in one of his papers. He has only proximal access to the nerve from any entry point.
From the first entry point, he can only address the nerve around the piriformis. From the second entry point, he has access to the pudendal nerve between the ligaments. Finally via his third lowest entry point, he can access the alcock's canal.
Theoretically he uses his MRN to determine what entry point to use. So to have a complete TG decompression with Dr.Filler, you would need 3 separate surgeries.

Hi Earl,
do you have any news? Have you been examined by dr. Aszmann?
I am suffering with similar condition and considering the dorsal nerve decompression. although the summer vacation brought some relief and I had some very good days, I am afraid that this is not final solution.
dr. Aszmann found some fibrotic thickening in my dorsal canals and thinks that I might benefit from operaion, but am still far away from that decision. one of my friends who dont post here, has siginificantly benefitted from dr.Aszmann operation, made in early June, having reported significant decrease of penile pain and better sensitivity.
the other results are quite mixed - see e.g. German section, there are some reports.
Still waiting for plausible answers and researching the option to have dorsal nerve operated laparoscopically,

One more remark - every intrevention is risky, I hade terrible flare-up after ECSW therapy, ferocious worsening for 4-5 months and would warn you of ECSW....

all the best

I have tried conservative stretching as recommended by my PT and it only made things worse. I never stretch anymore - it irritates the nerve and tissues.

kone