Health Organization for Pudendal Education

Excellent news Sunil

I just went to a new PT today, and he reakons my issues are sprain of quadratus lumborum, which is mid back.
I also have the SI joint issues, which he didn't pick up on.

So with this Maines thing.. that he says you have can that impact on vertebrae and nerves lower in the pelvis?
eg pudendal type symptoms?

Well I guess I did a little better than you in that I only had to wait 9 years to get a firm diagnosis of Maigne syndrome from Dr de Melllo. I knew myself what it was 8 years ago but no doctor would believe me. I had one neuro surgeon in 2007 suggest a T12 nerve block but the pain clinic refused to do it and wanted to inject L4/5 instead because my MRI showed a slight problem there and as is typical of Maigne, there is no obvious problem visible at T12. In March this year I also developed PN which Dr de Melllo says has been caused by the Maigne. He suggested, rather than working on the SI joint which had locked as well, it would be better to try to relax the pelvic floor muscles. I'm too far from any of the neuro physiotherapists mentioned but have found a really good osteopath who can do the same thing. My Maigne is quite typical; a branch of the lateral nerve fromT12 is trapped over the top of my iliac crest. Darn annoying to know it could have been completely cured 8 years ago by physio but now the nerve is permanently damaged. There is still a doctor in France who is doing decompression for Maigne but I can't see much point if the damage won't repair itself. I shall just have to get the osteopath to work on relaxing the tension on the nerve.
If anyone else thinks they have Maigne, the best article i have found on it is http://www.maitrise-orthop.com/corpusma ... ndex.shtml written by Prof Maigne himself.

Will Peter Dornan give advice by email?
I do feel that Dr de Mello has little ideas wrong such as the PN starting 9 years ago> I had told him that when the Maigne started I could neither sit nor stand for he pain and he jumped on the "couldn't sit" and decided it was PN. It was absolutely nothing like the PN pain I have now, in fact I had no pudendal pain at all until March this year. The reason I couldn't sit was that being upright caused horrific pain on my hip and abdomen from the femoral nerve. My entrapment is definitely over the iliac crest, not directly at T12. Maigne did give me groin pain but this PN is almost certainly coming from my right SI joint. I haven't been able to be on my feet for more than a few minutes for the past 9 years and use a wheelchair and scooter- or at least I could until the PN started. Now i can't go anywhere because I can't stand for long enough and I sure can't sit on anything hard. My osteopath is doing great at releasing pelvic muscles and adhesions but isn't working on the Maigne directly.

Poppy

I hope that your osteopathy treatment is helpful for you. The one thing to remember with many doctors is that you a different patient than others seen; you are educating them as to the varying effects of nerve problems. I hope that you can get more relief and begin to get a better life back again.

Amanda yes my osteopath is helping a lot. Everything flares up for about 3 days after a treatment but then settles down. Things feel a lot more "relaxed in my pelvis. His first treatment set off my SI joint and the PN so I'm now pretty certain it is the SI causing it because it had been quiet for weeks. I also had a gynae appointment today with a consultant who works closely with urology. He'd never heard of Maigne of course but was pretty clued up on PN and i s sending me to his physiotherapist who he says is excellent at relaxing pelvic floor muscles. I think someone else on here mentioned her in another post. I shall have to be careful that she and the osteopath don't undo each other's work; maybe get them to work together if she's willing.

That sounds great Poppy, at last . I would reiterate Sunil's comment about nerve repair, of course it would take time and maybe Dr De Mellow is right but don't give up hope that some good recovery can happen. I have read articles where people have 'recovered' after many years of problems. Well just look at Sunil after 37 years he has seen improvements along the way with Peter Dornan.
Lets hope your two pronged approach can help you. Everything crossed.
Take care,
Helen

My only slight concern is that the gynae here has referred me to his physiotherapist for the PN pain. The osteopath has done so well with it, I really don't want the physio doing anything to undo what he's done. The appointment form stressed that she worked on people with urinary problems; ie leaks and the approach for that is totally wrong for PN yet I don't really want to refuse the appointment for fear of being seen as uncooperative. I hope she will be willing to work WITH and learn from the osteopath and not against him.

my gyne referred me to a pelvic pain specialist who specialised in urinary incontinence (which I don't have)
She had no clue about PN, and everything she attempted had the goal to strengthen my pelvic floor.
Which was the complete wrong thing to do.
I just stopped going.
And I too only went because the gyne was adamant that she would be good to me.

The gynaecologist has assured me that this woman knows how to relax the pelvic floor so I just hope she does but if she tries to get me to do anything to strengthen it I will most certainly tell her. My osteopath has offered to speak to her to make sure they are not undoing each other's work.

Hi Sunil,
I'm sorry you're still having such a hard time. I was wondering .... have you ever had your SIJ imaged? I don't doubt Peter Dornan expertise and talents, but it appears you're having a difficulty with holding the adjustments. There's got to be a reason why.
Kind regards,
Karyn