Wish me luck

[helenlegs 11]

Do you think it is because he can't refer anyone on for any pelvic surgery Calluna? And How long is too long?? I am a bit perplexed by this tbh. I know that the longer someone has a nerve problem the less likely a good outcome but surely taking what Dr G described to you (if I remember correctly) as a girder across the nerve which was so much scar tissue in your case, surely trying to remove it at any stage could be helpful?
I think that patients who can be helped by physio or blocks (but how will they ever know until that's been tried and then failed) could be candidates for Dr De Mellow. I would hate to be even partly responsible for recommending him to someone who is say properly entrapped/tethered, someone who physio and blocks will never be able to help long term for instance. . . YOU infact Calluna! What would he do with them once the blocks had failed to cure?
Maybe it's because I don't understand the implications of Maignes syndrome Poppy? as I said I haven't heard of it but did do a little reading about it, will do some more perhaps. It sometimes takes a while to get it through my thick head .
I agree Calluna, the CBT will probably be a lifesaver for you now Poppy. I do hope that you manage the pregabalin without too many problems. I did work incredibly for me, too well as I may have already said Fingers crossed for you with that too.
It is fantastic to be able to talk with someone who does know what you are going on about isn't it. Especially when you have gone on about it for so long to others who should know about it and just don't!! I'm glad that you had the opportunity to speak to him. Did you go privately in the end btw?
Keep in touch, let us know how you get on.
From your recommendation Calluna I did get that book by Neville Shone and would recommend that to you too Poppy. There are also many publications about mindfulness training and some mindfulness courses that could be of help.
Take care
Helen.

[calluna]

That could be it, Helen. I don't think we've heard of anyone having surgery in Manchester...?

And a very good question, how long is too long. I expect it would vary from case to case.

And that reminds me, I need to ring Mr D's secretary, spoke to her last week and she confirmed that I was listed as 'urgent' - it is 4 weeks now and I was told it would be 'definitely done within a month'. Hah, not quite.

Glad the book has been helpful, it is still on the top of the pile on my bedside cupboard.

Poppy - this is the book in question.

[Poppy]

Sorry I didn't notice there was another page of replies.
Helenlegs thanks so much for the link but I actually knew all about Maigne syndrome 8 years ago and have been trying to find someone to treat it ever since. I wanted to go to France to Prof Maigne himself but my GP wouldn't back me for funding. I'm sure I will now cost the NHS far more for the rest of my life than if they'd sent me. It's made me so angry knowing that a complete sure would have been so easy back then but I was totally dismissed as a "self diagnosing internet user". I saw a neuro surgeon in 07 who actually said I shoudl have a T12 nerve block and sent me to Preston Pain clinic for it but they refused to do anything and only wanted to treat L4/5 because that showed up on my scan and T12 didn't. They just ignored his diagnosis.
Dr de Mello only does one clinic a week and only takes two new patients a week so I rather think he's getting inundated. I know he doesn't do surgery but I'm sure I read that there is a surgeon at Wythenshaw who specialises in adhesions so he may be skilled enough to release nerves. Surgery wasn't an option so I didn't ask.
I saw him on the NHS. MY GP did the referral at the end of March so I think I was very lucky to be seen so soon. He did speak about Bristol having lost funding and he knew the people there well; was in the Navy with one of them. He also had high praise for rheumatologist at what used to be called Hope hospital although I wasn't at all impressed when I saw him years ago about Maigne syndrome; he just didn't want to consider it. Maigne syndrome also affects the perineal area so the PN symptoms overlap. He jumped on me having had PN for 9 years because I said I couldn't sit at all when the Maigne started but having thought about it since, I think he's wrong about that. Sitting pain then was caused by a completely different pain which was all up my pelvis and across my hip. It was not where the PN pain is now.
The only thing I wasn't happy about was that he was extremely anti oxynorm saying it's far too addictive and he's never managed to get a patient off it- maybe that's because it actually works! It's the only thing that has helped me at all and he didn't suggest anything that may also help ease the pain like massage or myofascial release for all the muscles that are in spasm around it. He did suggest pelvic floor physio but as I said, that's much too far away for me. He did say not to bother with acupuncture because it was useless for nerve pain.

[Poppy]

Well I have to report great progress. After seeing Dr de Mello and thinking about his suggestions to see one of the two physiotherapists, I decided they are too far away for regular treatments so I searched locally and have found an osteopath who knew just a little about Maigne syndrome but an awful lot about PN. He said he was willing to research Maigne so I booked an appointment last week. I was extremely cautious but he said he would only work gently on trying to release my pelvic floor muscles and adhesions. He did nothing painful. Next day my piriformis was sheer agony; couldn't put on foot in front of the other. I did the treatments he'd showed me. After 2 days my SI joint locked solid as I reached to put my shoe on and I couldn't straighten up. Next day was a little easier and day 4 was fantastic. I can sit- not for hours but long enough to talk to my GP today who said he could see a big improvement not just in how I sat but the way I walked and my general well being. I really think this osteopath can help judging by how I am so far. He has a tremendous knowledge of pelvic structure and which muscles can affect them. MY GP reckoned the improvement was so marked that he doesn't want me to start on pregabalin yet but to carry on with the osteopath and see how it goes. I know the nerves are permanently damaged but if relaxing the muscles around them can take the tension off them my pain should go down even further.

[Laura]

Great news, Poppy! You go girl!

[cotton]

You gonna find a good guy.My appointment lasted over an hour. Within 10 minutes Dr de Mello announced "You have typical Maigne syndrome". I burst into tears just to hear someone who actually knew what it was. The bad news is that I've had it so long the nerve is too badly damaged to ever recover. I'm stuck with it for life. If it had been treated when I fist knew what it was, it could have been cured.

[Poppy]

Spoke too soon! Have all the PN back again today. OH well osteopath again on Wed; he will fix it again. That's what comes of sitting on doctor's waiting room chairs! Trouble is because of the Maigne syndrome, I can't stand while waiting. In this heat it's a good excuse to just lie down an do nothing. Does anyone else who has fibro or even with chronic pain, really suffer with the heat? My sjogrens is really playing up; can't even swallow food without a drink at the same time.

[helenlegs 11]

I do hope that the next appointment with this physio goes as well if not better for you Poppy. really glad that you have found something that works at least for a while. . . . .that progress should give you hope
take care,
Helen

[Poppy]

I'm coming to the conclusion that I flare up after every treatment for about 3 or 4 days then it settles down and is just a bit better than the time before . I can put up with that if it is making an improvement.