What to expect in London?

[Holly]

When I last saw Dr Baranowski in London he recommended I have decompression surgery with Professor Carlstedt, also in London. I think opinions have now changed and surgery is no longer recommended? It is interesting that there is no decompression offered in the capital, does it suggest a lack of confidence or was Dr B unable to find a successor to the Professor?

I'm curious as to what the current thinking is as I am due to see Dr B soon. In the six years since I saw him last have there been any advances?

All the best,

Holly

[Dusty_in_Hope]

Hi Holly,

I wish I could answer your questions. I would be very much obliged though if you would post after seeing Dr B again with what he is recommending now, as I am thinking about asking my GP to refer me to him privately.

I am new to pn and this forum - and don't know how up to date it is - but I found the following information elsewhere on the net about Mr Wong who apparently does decompression surgery:

Mr. Christopher Wong, MB BCH PHD FRCS is a consultant surgeon in Bristol and part of 'The Bristol Team' with Dr. Gareth Greenslade, consultant pain specialist, and Mr N. Patel, consultant neurosurgeon. Their interest in pudendal neuralgia took them to Nantes, France in 2009, to study with Professor R. Robert.
Dr Wong performs pudendal decompression surgery using the TG approach. He practices at:
Spire Cardiff Hospital and Spire Bristol Hospital.
Contact details:
Tel: (to make a private appointment) 01179732562
Private secretary tel: 01173706360
E-mail: christopher.wong@nbt.nhs.uk
AND

North Bristol NHS Trust.

Secretary: Angela Turner, telephone no. 0117 3406505
http://www.nbt.nhs.uk/our_services/a_-_ ... _wong.aspx
Website: http://www.keyhole-surgery.org/

Does anyone know whether there is anyone else in the UK that does the decompression surgery or whether the surgery isn't being recommended here in the UK for some reason any more?

All good wishes,
Dusty

[Bertie]

I am in the UK and have seen Dr B........he does not recommend surgery........under NO circumstances have it done in Bristol I can not emphasise this enough.......your best chance is to,go to France......some people have had it paid for by the NHS .....I will be organising a consult with the French team.

[Holly]

Thanks for the replies.

I have seen Mr Wong and while he was delightful I was concerned that he had carried out so few operations. Not his fault obviously but I would not pick a surgeon who had done 20 something operations (his figures when I saw him) when in Nantes they have done thousands.

Having said that, it is curious that Dr B has gone from suggesting surgery a few years ago to being so against it now. I look forward to hearing his current views.

What I find hardest with all of this is that whatever course of treatment one chooses there will always be some who are also for it and some who are against. It would be great if one day there was a treatment plan for PN that was accepted and the sufferers could then get on with doing their best to live with this appalling condition without the current worry and doubt.

Holly

[Dusty_in_Hope]

My thanks for your responses, Bertie and Holly.

Very understandable reasons for not opting for Mr Wong in Bristol - I am grateful to know this information.

Holly: As you said in your original posting, one wonders why surgery isn't being recommended by Dr B now - as, even though Professor Carlstedt has seemingly retired, I wonder why Dr B isn't suggesting that people go to France instead.

With regard to Prof C though, has he actually retired or only retired from the NHS perhaps? It's just that I found these two websites the other day about him (but maybe those sites just haven't been updated) http://www.londonnervecentre.co.uk/thomas_carlstedt.php http://theharleystreetclinic.co.uk/cons ... -carlstedt

I would be very interested to hear what Dr B does advocate when all else has failed, what with nerve blocks often (usually?) only providing temporary relief. And I agree that it would be so much better if there were an established treatment protocol in the UK for pn/pne. Why does everything have to be such a minefield and battle?!

Bertie: In getting the op funded on the NHS to go to France, I guess there would be all sorts of hoops to go through. I would be really grateful if you'd let me/us know how you get on with that. Do you have any idea approximately what it costs to have the op done in France privately?

Kind regards to you both,
Dusty

P.S. Holly: I came a across a posting by fellow forum member Ms Wise (from back in Sept 2011) about her experience with Prof C., so I am not sure how well you would have fared if you'd have consented to surgery with him, when Dr B suggested it to you:

I saw Professor Calstedt a few weeks ago. I wasn't overly impressed. He is an "auto-didact" he told me and that he only started doing the Pudendal surgery recently because Baronowski asked him to treat some of his patients. He did no physical examination despite me paying him £250 even though I asked him to as I had travelled a long distance to see him. He also said I had piriformis syndrome from his brief request to bend my leg towards me to the side. He didn't go to see how Professor Robert does the TG approach it or see what other Drs. do to treat their patients, he just read up on the surgery himself. He operates one side at a time and he cuts both ligaments. He also makes a large incision on each buttock even though he cuts both ligaments (which would give him the maximum view). I left after an hour of discussion and questioning feeling a little deflated and that I had wasted my time and money. Better to stick with the more experienced Drs in this area was the impression I left with.

[Bertie]

Surgery in France is about £5,000 not horrendous 0% credit card doable.......if some people are getting funding then we all should.......Dr B and his team are hugely against it ( I beleive a surgery went disastrously wrong with the surgeon mentioned ) and from thereon in it was no longer recommended.......I do no patients of Dr Bs still have surgery in France regardless of his opinion.......his bed side manner has a lot to be desired.

My physio Maria Eliot who is a PN physio, said she would only go to France for surgery as there is no one in the UK who can do it........

The UK website called health unlocked which is run be a lady called Judy can be the go between if wanted......I haven't even had a nerve block in the UK, as the French team say they should be done without the steroid injection as it causes more problems with nerve damage......we simply don't no enough in the UK to be messing around with this.....after my mothers nerve block at NHNN Queens Square which went disastrously wrong no one in this country will be doing one on me ( she also has PN ) .

The key to this is research research research .......and just because the experts tell you what to do still research research research..........

[Dusty_in_Hope]

Hi Bertie

Thank you so much for your reply - all of the information you have given is extremely enlightening and helpful.

I'm relieved that the op in France is at a cost that is doable; I'd imagined that it would probably be quite prohibitive.....a £20K - £30K job or something! (I have just read.....in another (old) posting elsewhere.....that someone was having to have the op repeated......as it had worked for them for a while, but then the pn came back......and they were having to return to France for their second op and they couldn't get that second op paid for by the NHS....which makes it even more important to get what we are entitled to on the NHS - at least the first time around.)

Along with signs and symptoms, I gather that improvement in a patient's pain after a nerve block is a main diagnostic test/criteria for pn/pne(?) If I've gathered correctly that that is the case.....and it wouldn't be wise to have a nerve block done here in the UK with them using a steroid injection (e.g. with Dr B)........and I also gather that Dr B would be highly unlikely to refer anyone to France!.......how can we get a diagnosis and referral to go to France with? Would we need to go to France for the diagnosis, i.e. by means of a nerve block done the safer way without a steroid injection?

I am right at the beginning of my 'journey' with pn. (No medic has diagnosed me with pn or pne - and although I have an open mind about it - my symptoms fit the bill and I would be shocked if my pain were down to anything else.....)

So far I have only managed to get a referral to a consultant obst/gynae surgeon who has been recommended to me.....Apparently, he sorts out other surgeons' mistakes (to include mesh messes), is interested in the pain aspects of gynae issues and is also very approachable and thinks 'out of the box'. (He's in London at St Mary's Hospital, Paddington.) However, as my referral is on the NHS, I guess I will be lucky to actually have a consult with him and will be seen by members of his team instead. (As I would already technically be under his care though, I'm hoping that I would be able to see him privately more easily - perhaps without another referral from my GP - if I needs must). I am post-menopausal and have had a rectocele for over 4 years, which has suddenly got bigger and more difficult to live with....I just hope though that my pain won't be erroneously attributed to my rectocele (and/or to any other pelvic organ prolapse that might be going on).

I'm frightened of going down the wrong path and ending up at a dead end. Would you mind telling me how you went about getting a diagnosis and how you plan to get to France for your op, if that's what you are deciding to do?

I am thinking of seeing Maria Elliot; I wouldn't need a referral to see her privately, would I, do you know?

I shall look up the health care unlocked website; it sounds very helpful and promising should I need the op.

Thanks in advance for any further advice you can give me.

Kind regards

Dusty

[stephanies]

Dusty,

You mention that you are at the beginning of the road with PN. I am not sure exactly what your symptoms are, but sometimes by being careful and adjusting your lifestyle, the symptoms will lessen and maybe even go away. It is good to gather information, but please take your time as nerve blocks and surgery are certainly not without risk.

Stephanies

[Dusty_in_Hope]

Hi Stephanies,

Thanks so much for your advice, but please don't worry - although I may appear to be 'gung ho' - I am actually quite cautious and would want to avoid surgery etc., if possible.

I'm following the life style changes that I've read about on this forum and am hoping that things will improve for me. (However, I know from bitter experience how difficult getting a diagnosis and appropriate treatment can be on the NHS in the UK - especially for conditions that are considered to be out of the ordinary - as I also suffer from a relatively rare condition called Myasthenia Gravis.)

I'm trying to pluck up the courage to see a pn PT. (I'm reticent to go to one as I also suffer with fibromyalgia syndrome and the PTs that I saw who claimed to understand fibromyalgia really didn't understand it and caused me months of unnecessary extra pain.)

Kind wishes,

Dusty

[Holly]

Hi Dusty,

I can only echo what others say about doing as much research as possible and being more cautious than your pain tells you to be. I was close to having surgery with Professor C and I'm now so glad I didn't. I will report on what Dr B says as his change of heart was clearly not on a whim.

My pain has been with me 11 years and is always there to a greater or lesser degree. When it is more manageable I put up with it, when it flares I join the "should I go for surgery" bandwagon! I have had the diagnostic blocks which all lead Dr B to think I have PNE but the more I read the more unsure I am that anyone can be sure of anything. My worst fear is to have the surgery and then be told it wasn't an entrapment.

I have tried most things but not PT. Like everything else it has fans but others who say it does nothing. Dr B did not suggest it when I saw him a few years ago. Dr Greenslade did not mention it 2 years ago. Nonetheless it might help? After so long I do wonder but it's a box that probably should be ticked.

You are at the start of a huge learning curve where you will soon know more than most medics you come across in the UK. This forum is a life-saver so stick with it. Take things gently and see if that helps before anything. I wish you all the best,

Holly