Health Organization for Pudendal Education

Hi I'm in need of some help from anyone in the UK please. Having been referred to a Specialist for pain management/nerve block, my Insurance Company AXA PPP have told me today that the Specialist, Dr. B. Lobo is not on their list and so I am not insured to see her. They couldn't give me the name of anyone and advised me to look on the Internet! I feel as though I have had the stuffing kicked out of me with this news. Can anyone give me the name of such a Specialist in the UK so that I can check if my Ins. Company recognise them. Hope someone can help, 'cos I'm feeling pretty low at the moment, and of course that doesn't help with the pain.

John

Hi John

All my treatment has been through the NHS. The consultant that I saw is an anaesthesiologist, based at Bath RUH, at the Pain Clinic. There is a lot of information available online about the Clinic, including the names of the consultants - link. Procedures including nerve blocks are done at the clinic - I did ask about this a while ago, and was told that in my case there is no doubt about diagnosis so need to do one on that account, and that they haven't seen long term improvement with PN using nerve blocks so they don't necessarily recommend them.

I know that they do also refer to hospitals in Bristol if necessary - this isn't done routinely as it is a different PCT. Dr Gareth Greenslade at Frenchay Hospital has been mentioned - I know he has been for training on PN at the clinic in France.

I see that you are in Kent. It would seem likely that whichever consultant you end up with for your nerve blocks, will be a specialist in pain management and will therefore be based at your local Pain Clinic. You may find there is information available online about the different consultants there. I would suggest that the best way for you to choose a consultant is to speak with your GP. He/she should know the consultants there, as referrals to Pain Clinics come from GPs, not from other consultants.

You might want to consider going through the NHS, perhaps. I have found in the past that private medicine is excellent for elective procedures - no waiting! - but when you are really unwell it is better (and sometimes safer) to be with the NHS. I know also that there are many consultants who don't work in private medicine. As your insurance company could not give you the name of a local pain specialist, it may well be that none of them do private work.

And if there is a waiting list for your local Pain Clinic, the sooner you get on the list, the better, I'd suggest.

Hi calluna, thankyou for your reply, what you say makes so much sense. I must confess that when I got the news today from my Insurance Company I panicked somewhat and so I trawled this site for names and came up with Professor Thomas Carlstedt. I phoned my Ins.Co. and they have said that he is on their list although they will not pay the full amount of his costs. I contacted the Hospital that Prof. C. works at when in London and I got an appointment for this Monday coming. Whilst I have a lot of faith in the NHS, my concern is the length of time it takes to get treatment, so in for a penny.......!

Wish me luck calluna, and thankyou again for being there.

John

I do wish you luck, John! I will be very interested in hearing how you get on with Dr Carlstedt, I have been doing a bit of research myself and his name came up several times, many people speak highly of him.

Hi John
I know that Dr Gareth Greenslade does CT guided nerve blocks and prefers to do these at the NHS hospital at Frenchey because the equipment there is more sophisticated than at the private hospital where he is also a consultant!!

Good luck with it. I'm from the UK too and sounds like you've had pretty much the same journey I've had over the years with many many diagnostic tests that don't find anything. I'm grateful to this site because that's how I came across Dr Greenslades name and I went to see him in October last year, and I also got the appointment on the NHS. I'm currently controlling my PN with meds Dr G prescribed, so let me know how you get on with the nerve block.

Cheers
Peaches

Hi Peaches, thanks for your reply, it does give me some faith that the NHS can in some locations at least provide good treatment for our condition. As a matter of interest, why have you not had the nerve blocks?

Kind regards,

John

Hi John,
I was just about to suggest the two names already given above. I haven't any direct knowledge of Prof Carlstedt, although second hand knowledge of a lady who has had recent pudendal surgery with him and is back to work after 3 weeks, although not completely cured.
Like Peaches (Hi ) I have seen Dr Greenslade too, consultation and then a guided piriformis injection 2 weeks ago. I am to have a nerve block on 24th Nov and will let everyone know how it goes. The piriformis injection was a fantastic improvement especially at first, so I am just counting down the days until I see him again for the next procedure.
Dr G is part of a team that studied with Prof Robert in Nantes and I know that surgery can be offered if neccessary although I don't know the surgeons name.
Living at the opposite end of the country I was unsure who to 'pick'. Easy Jet made my mind up for me, I know ridiculous ! but I was still after a diagnosis at that stage and it seems more difficult to get someone who recognises piriformis problems as well as pudendal. Even then Dr G descibed it as 'the glamorous diagnosis', there is absolutely nothing glam about it! Nearly hit him with my Gucci handbag!
I do hope that you get on the right track re treatment soon, the whole thing 'does your head in'
Have just read back and realise that your nerve block is today, let us know how it went please. I would also be interested in how it was administered.
Just to echo something Calluna mentioned re NHS, I know that the equipment that Dr G uses at Frenchay NHS hospoital is far superior to his private practice (his secretary made no secret of it) but I can understand your wanting to get things in motion.
I had my consultation with him privately but was then referred (reluctantly by my GP, don't get me started!) to his NHS practice. I was quoted at least 6 months wait for any treatment but it took only 1 ~ still don't know how that happened, but I am asking no questions. . . . . Hope all went well today.

Take care
Helen

Hi Helen, in fact my nerve block did not take place yesterday, the referral was a 'wrong 'un' on a number of counts, won't bore you with the details. Anyway, saw Professor Carlstedt yesterday, very nice chap and has performed a number of PNE operations, but he wants me to see Dr. Baranowski first for a proper diagnosis/nerve blocks before he would agree to surgery. In hindsight Helen I realise I should have approached Dr. Baranowski before Prof. Carlstedt, I just picked the first name of the two listed.

Prof. C told me that Dr. Baranowski approached him some time ago and asked him if he would like to do the surgery once Dr. B. had diagnosed PNE. They now work together in this process. So, I have to wait for an appointment with Dr. Baranowski, but Prof. Carlstedt told me he thinks PN is the problem.

You're so right about it 'doing your head in', just made worse by the lack of awareness within the medical profession.

Stroke of luck for you getting the treatment within one month, makes you think they deliberately try to push you in the Private direction. Wish you loads of luck for the 24th, won't come soon enough I guess for you.

All the best

John

Well you may have had to get there in a more roundabout route but Dr Baranowski is famed on forums for his pudendal work. Must admit that Dr Lobo, that you mentioned first, is not one I recognise (but I have been concentrating more on piriformis than pundendal problems) It does show what fantastic help forums are !
Another thing that you may consider is a pelvic MRN. My scan showed pudendal entrapment at Alcocks canal. There is a great informative debate on here at the moment about these neurography scans under DIAGNOSIS & TREATMENT . . . go to the bottom and . . .MRI/MRN
It centers around Dr Hollis Potter and other American radiologists but scans are available here. Medtel in Harley St are to get a 3T scaner in the new year (that is where I went, but a 1T) Mine cost £720 (or there abouts) but others in Cheltenham are avilable for under £400. There seems to be no gaurantee that the entrapment will show up, it's all down to the imaging equipment, programmes for reading the images, the radiologist and then a combination of all of those factors.
I think the best Britain has to offer will be the 3T in Harley St when it arrives as the radiologist there, Dr Blease, is taking an interest in pudendal entrapments. I know this is available on some private medical insurance policies.
You will not get the same indepth, quiality reading as listed in the discussion forum provided by Dr Potter ( a forum friend of mine is not even going to bother with a scan here and is hopefully travelling to New York in spring for hers) but if you can get it 'free' it might be worth looking into here.
Having this invisible painful problem, validated pictorially and/or diagnosticaly helps 'the head' enormously.
Helen