The British Society for Clinical Neurophysiology - The British professional association representing practitioners of clinical neurophysiology.
The American Association of Neuromuscular and Electrodiagnostic Medicine - The American professional association for physicians interested in neuromuscular disease and peripheral electrophysiology
Adrian Fowle’s site - Adrian is a working neurophysiologist who is interested in IT and maintains a great deal of useful information relating to the speciality on his web site
The International Federation for Clinical Neurophysiology and its European Chapter both have websites which are good starting points for those interested in the speciality.
The International Society for Peripheral Neuromuscular Imaging (ISPNI) is a recently formed multidisiplinary group of people interested in peripheral nerve and muscle imaging. Lectures from the 5th meeting of the society can now be seen online.
'ONE-STOP' CARPAL TUNNEL SYNDROME CLINICS
The dedicated carpal tunnel clinic at the Kent and Canterbury Hospital has been running since 2004 but it was not the first experiment in providing a streamlined treatment service for CTS nor are we the first to provide surgery in primary care or carried out by non-medically qualified surgical practitioners and in recent years there has been increasing interest in this sort of experiment in service delivery. The Shrewsbury and Telford Hospital have a dedicated CTS clinic run by a nurse and hand therapist and there is a nurse led service based at NHS Stockport. I have also seen reports of a highly streamlined service in London described by a research clinical specialist in hand therapy at the Kennedy Institute of Rheumatology in London - though the Kennedy Institute now seems to have moved to Oxford. Imperial College Healthcare (Charing Cross Hospital, Hammersmith Hospital and others hospitals in that group) have a one-stop carpal tunnel clinic which has in the past offered same day surgery but I am not sure whether that is functioning at present. The service is run by the plastic surgery department and has a website. A surgically based one stop clinic ran in Tunbridge Wells in 2005 and published its results for a series of 49 patients in 2009 but I do not know if this is still running.
SURGERY FOR CTS IN PRIMARY CARE
Increasingly, general practitioners who perform minor surgery in their own premises are turning their hands to carpal tunnel surgery. Quite a few of these doctors have got together to form the Association of Surgeons in Primary Care and are clearly very interested in the quality of the services they deliver - indeed they have a document recommending how they would like the outcome of carpal tunnel surgery to be assessed. There is also an independent group specialising in community based surgery which is documenting their success rates and patient feedback publicly, albeit with quite a simple patient feedback tool. In the Kent area the Thornhills Medical Practice in Aylesford have a long history of providing carpal tunnel surgery 'in house' and even provide some information about CTS surgery on their website.
CARPAL TUNNEL SYNDROME
Predictably, with such a common condition, many official and unofficial information sites exist on the web and many professional organisations feel that they have some remit to provide patient information for this. The links here provide a selection of reputable alternative viewpoints on CTS and are not trying to sell you anything themselves, though they may carry advertising.
NHS Choices - This is the ‘official’ NHS information source for CTS. This is a good starting point for UK patients. It includes a neat little narrated animation if you would like to hear someone explain the basics of CTS. The Scottish NHS has their own patient information resource. The section on carpal tunnel syndrome there has improved greatly since the first version and is now unusual in providing a direct link back to the diagnostic questionnaire here (Thankyou Scotland). The Welsh version will feel rather familiar to anyone reading this site as many of its sections are abbreviated forms of information here - indeed the core text of all three versions is now almost identical, though presented with different graphics.
NHS Decision Aid - this website will take you through a structured way of thinking about the options for treatment of CTS and what may be best for your particular circumstances. The decision aid is also available as an iPhone app - search for carpal tunnel syndrome.
Clinical Knowledge Summaries - this NHS site (only accessible from the UK I'm afraid) is directed more at health professionals but provides a succinct and accurate practical guide to applying what evidence there is regarding diagnosis and treatment now a part of NICE - the National Institute for Clinical Effectiveness. The content was revised in September 2016 and has incorporated some material taken from rather poor guidelines on the investigation and management of CTS, though it remains mostly acurate.
The British Society for Surgery of the Hand - as you might perhaps expect, the surgeons feel that surgery is 'frequently' required but the information given here about surgical alternatives is accurate.
The Royal College of Surgeons (search for carpal tunnel syndrome from their home page) has some useful publications on CTS of which their guide to recovery for patients having surgery is comprehensive and gives a fair picture of what patients can expect. Unfortunately it also carries a link to a document called "Treatment of painful tingling fingers commissioning guide" which is both flawed and outdated. A replacement for this document was put out to public consultation late in 2016 and was perhaps even worse but a revised version has not yet appeared at November 2016.
The Arthritis Research Campaign - Again there are minor inaccuracies but there is less of a surgical bias in this information. This page and the associated leaflet are being revised at present.
Map of Medicine - Provides a generally sensible flowchart guide to handling CTS from the point at which it is first suspected. It has a slight bias towards recommending consideration of surgery when it may not be necessary but is well referenced and evidence based. (I have to declare an interest as I had some input in to the content of the Map of Medicine Pages for CTS)
The American Academy of Orthopedic Surgeons - Provide a concise and generally accurate summary, though they are perhaps slightly overoptimistic about surgical outcomes
The US National Institutes of Health - take a rather inclusive view of therapy, describing many things that ’may’ help despite the lack of concrete evidence that they do actually help!
The US National Library of Medicine - has a site which is especially notable for a wealth of weblinks to further information
The Mayo Clinic - Has a comprehensive and well laid out site (albeit with quite a lot of advertising) which presents a well balanced overall view of CTS, but with the usual small inaccuracies.
Patient UK - A UK primary care based information service presents a generally accurate picture of CTS as seen in general practice. Recently it seems to have gained a lot of advertising banners. One rather suspects that the content of these is not directly under the control of patient.co.uk as they include adverts for unproven remedies for CTS at times.
An article from the New York Times gives a very comprehensive overview of all aspects of CTS and is generally accurate though the author is not credited.
Bionity - is a german website providing information apparently directed at the scientific and commerical community but it includes an encyclopaedia of medical information which appears to be well curated. Their section on CTS is generally accurate and can be read in both german and english. I am assuming that the german version corresponds to the english one as I do not read german.
Mr Harry Belcher's website - Has many operative photographs of both traditional open and endoscopic (Keyhole) carpal tunnel surgery for those who wish to see exactly what the operations involve (follow the 'Operative series index' link from his home page), and also provides some information about conditions which are often seen with CTS such as Dupuytrens contracture and Trigger finger.
People searching for exercises to do for CTS, either in general or after surgery, can find a leaflet illustrating some suitable ones at the Chartered Society of Physiotherapists website or in this leaflet from my own hospital physiotherapy department There are no good quality studies to show that such exercises actually help but they are unlikely to do any harm.
A surgeon's view of CTS - most medical review articles on CTS are published in journals which do not offer open access to the public but this comprehensive review article from the Ulster Medical Journal is freely available online and covers the topic of CTS as extensively as this website. It is however written by two surgeons so the perspective is slightly different. It is also intended for a medical audience but should be comprehensible for most people.
The Wikipedia article on Carpal Tunnel Syndrome is comprehensive, well illustrated and is available in several languages. It has improved with some recent edits though it is inevitable with such a multi-author document that there will always be disagreements and a slightly erratic structure. This at least illustrates the range of opinion and is probably a good thing overall. It is now appropriately sceptical about work related CTS. Having watched the wikipedia entry for some time I am now more aware of some of the limitations of the Wikipedia model - what you read in the article can vary from day to day and many edits are made by non-experts who have read one paper and present its findings as established fact, or by individuals with a personal agenda to advance. The only edit I have made to the wikipedia CTS article is to provide a link to this site as I think my own views are adequately set out here.
Carpal Tunnel Syndrome Research Today (no longer available) - was a monthly reference list of scholarly articles on CTS. It took a very inclusive approach and many of the articles listed were of only peripheral relevance to CTS and it also carried some advertising but it was a useful public source for pointers to recent research. Updates stopped for some time in May 2011 with monthly issues after that date containing no new references but new entries then appeared through July 2013, after which they stopped again. I am not sure who was responsible for this page.
The Cochrane Collaboration - publish evidence based reviews of the effectiveness of medical interventions. They have produced several papers concerning carpal tunnel syndrome. There are currently 10 completed reviews all of which you may read in full online. These are long, fairly technical documents, each of which concentrates on a very focussed topic. These reviews tend to pay more attention to efficacy than to risks and side effects.
Local corticosteroid injection for carpal tunnel syndrome - currently being updated (Declaration of interest -I am one of the authors, the new version should be published shortly)
Non-surgical treatment (other than steroid injection) for carpal tunnel syndrome (this review is being re-written as separate reviews)...
A summary analysis trying to pool the results of all these different reviews into a coherent whole is being considered.
I would recommend caution when reading just the abstracts/conclusions of these Cochrane reviews as the very brief 'bottom-line' summaries necessarily do not convey much of the subtlety of the analysis which has been undertaken. To illustrate - the isolated bottom line message from the first of these four reviews (Marshall, Tardiff and Ashcroft reviewing local steroid injection) reads as follows:
Local corticosteroid injection for carpal tunnel syndrome provides greater clinical improvement in symptoms one month after injection compared to placebo. Significant symptom relief beyond one month has not been demonstrated. Local corticosteroid injection provides significantly greater clinical improvement than oral corticosteroid for up to three months. Local corticosteroid injection does not significantly improve clinical outcome compared to either anti-inflammatory treatment and splinting after eight weeks or Helium-Neon laser treatment after six months. Two local corticosteroid injections do not provide significant added clinical benefit compared to one injection.
In reading this conclusion one has to remember that trials comparing steroid injection with surgical treatment of CTS - whatever their methodological quality - were explicitly excluded from the evidence base being reviewed. The statements comparing steroids with NSAID and splinting and with laser treatment are each referring to a single trial which the authors actually consider to be of less than ideal methodological quality.
The Cochrane collaboration have now begun to publish reviews of diagnostic test accuracy and an obvious candidate for a review in the area of CTS would be a comparison of NCS and high resolution ultrasound - a useful link is the Cochrane diagnostics working group.
MOBILE/TABLET/PHONE APPS for CTS
Two free apps available from the apple app store may be useful for CTS patients. I do not at present know whether there are android equivalents:
Carpal Tunnel Syndrome PDA - is a decision aid produced by the British Medical Journal which tries to help patients reach a decision about how to treat their CTS in a logical manner. At least on my iPad the app is a bit erratic but the information within it is generally accurate and the strategy which it suggests of thinking through the pro's and con's of each treatment option is sensible.
HandDecide - though of American origin has some nice illustrations and videos of a variety of hand disorders.
The British Society for Surgery of the Hand guidelines now apparently only available online to members have been withdrawn pending revision. The old set were rather poorly referenced, unattributed and undated. When some new publicly available documentation becomes available I will reference it here.
The American Academy of Orthopedic Surgeons has guidelines for Diagnosis and Treatment - which are properly attributed, referenced and dated. These guidelines are endorsed by the American Society of Plastic Surgeons, the American Association of Neurological Surgeons and the American Academy of Physical Medicine and Rehabilitation - all of the main specialities who treat CTS in the USA. Although the above link will still give you the 2007 guidelines the AAOS has produced a revised guideline in 2016. The full version of this new document runs to over 900 pages. I am currently looking at it and will add some further comments and a link here in due course. A summary of the findings is available on their website too.
The American Association of Neuromuscular and Electrodiagnostic Medicine provides guidelines for how to carry out electrodiagnostic testing in CTS drawn up jointly with the American Academy of Neurology.
The American College of Occupational and Environmental Medicine CTS guidelines have a slightly more generous approach to interventions which are not supported by quality evidence - endorsing a few things which they feel are likely to have "essentially no potential for harm".
Very good UK guidelines are published in the BMJ journal/website bestpractice.bmj.com but are not freely available without subscription - which is a pity
If you wish to know what clinical trials are currently being carried out in carpal tunnel syndrome there are several registers of clinical trials which can be searched online:
The World Health Organisation - International Clinical Trials Registry Platform
The Controlled Clinical Trials Register allows you to search several other registers too
PROSPERO - provides an index of systematic reviews
EVIDENCE-BASED MEDICINE RESOURCES
UK DUETs - A compilation of questions that need answers - things that we do not know about healthcare interventions but would like to. Closely linked to this is the James Lind Alliance, a non-profit organisation dedicated to trying to identify high priority uncertainties in medicine and encouraging work to provide answers.
SIGN - The Scottish Intercollegiate guidelines network - a good source of treatment guidelines.... but they do not have one for CTS as yet!
The Centre for Evidence Based Medicine in Oxford - an excellent starting point for anyone interested in high quality medical care and how to achieve it
Epistemonikos - is a website made freely available by the Evidence-Based Medicine Unit of the Pontificia Universidad Católica de Chile. It provides a very user friendly means of public access to at least the summaries of both systematic reviews and primary research articles which they refer to. Usefully, this content is all available in 9 languages.
The NHS Atlas of Variation - provides fascinating data on variations in healthcare around the UK - I would love to see it do rates of carpal tunnel surgery and injection but I doubt if we will ever see this.
The Neuromuscular Disease Center of Washington University, St Louis, USA - maintains an extremely useful website for nerve and muscle problems - especially useful for keeping track of the ever increasing number of known genetic causes of nerve and muscle disease. The best known generalised nerve disease to present as carpal tunnel syndrome is HLPP (Hereditary Liability to Pressure Palsies) but many other forms of peripheral neuropathy probably also predispose to CTS so this is a useful link if you are researching possible underlying disorders.
INTERESTING MEDICAL PROJECTS ON THE WEB
Patientslikeme - Is a patient community website which enables users to track their individual progress with a chronic disease using standard tools in a very similar way to the CTS scheme here. The range of conditions covered is limited at present with a very neurological bias (such things as Motor Neurone Disease and Parkinsons disease figure prominently) but will presumably grow in time.
Rather similar to patientslikeme but UK based is HealthUnlocked - who also offer systems to facilitate contacts between patients and their general practices - nothing on carpal tunnel syndrome yet though!
The Patient Experience - Was a UK based health blogging site where you could find extensive patient self reports of their experience of illness. Unfortunately, although they had a section devoted to CTS in their old site this was not copied across to their new one and the new site now seems to be just a host for a set of advertising links with the domain up for sale. I have reproduced some posts from the old blog here.
Several renal units share an online facility which allows patients with kidney failure to keep track of their biochemistry results, clinical letters and other information online. This system is particularly notable for the amount of personal, identifiable information which it holds about patients, in a website which is outside the security boundaries of the internal NHS network. It does employ security similar to that used for online banking and as with this site, patients have to opt in to use it, but once the patient has agreed to have an account their doctors can upload confidential information to that record from hospital systems. This system is now widening its scope to include diabetes and heart failure.
MyHealthSpace- is a South African system which can be used cooperatively by patients and doctors to share records
Neurosymptoms - Is a site which is similar in it's origins to this one - a site built and maintained by a single doctor who is interested in a particular condition. In this case it is what are usually now known as 'functional' neurological disorders. These are genuine symptoms with which patients present but where no structural damage to the nervous system can be found. They are hard to understand but this site gives a very good introduction to the subject.
WEB BASED DIAGNOSTIC AIDS
Tools like the diagnostic questionnaire on this site are not common, though there are plenty of medical calculators both on the web and as smartphone apps which facilitate the calculation of all sorts of clinical severity scores and assssments.
The calculator at the Jain Foundation site uses a Bayesian algorithm to attempt the diagnosis of which type of Limb Girdle Muscular Dystrophy (LGMD) a patient presenting with muscle weakness might have. It has so far proved to be fairly accurate in tests, getting the right diagnosis 75% of the time. It is however designed to be used by doctors, not by the patient.
QRISK - Though focussed on risk assessment for cardiovascular disease rather than diagnosis this is interesting for the use of a patient completed assessment online which gives an instant assessment of your risk of stroke or heart attack over the next 10 years. The methods used to evaluate your answers have a lot in common with some of the methods we use for diagnosis.
Although not very 'intelligent' (it just presents you with an online way of doing a lot of established questionnaires the Orthopaedic Scores HomePage has a useful battery of tests available.
OTHER HELPFUL ORGANISATIONS
The British Association for Performing Arts Medicine - is a useful point of contact for musicians with carpal tunnel syndrome and other hand problems (as well as covering all other aspects of medicine in the performing arts)
QUALITY OF HEALTH INFORMATION ON THE WEB
I am interested in the general issues raised by the provision of healthcare information on the internet and the ways in which we can involve people more actively in their own healthcare. It can be very dificult for the searcher using google to assess the quality and reliability of the information they find. I know of two initiatives which are trying to provide certification or accreditation of healthcare information websites - The Health on the Net Foundation (HON) based in Switzerland and The Information Standard, which is an NHS England initiative. At the moment HON has been running for longer and provides a healthcare specific search engine. The Information Standard is currently more orientated towards accrediting the organisations which provide information on the web but will probably also, in time. provide a directory to reliable information sorted by disease. Also in the UK the Patient Information Forum provides an umbrella organisation devoted to improving the quality of health information provided to the public generally.
There is a fair amount of scientific literature devoted to the quality of health information on the web, including several studies which have looked specifically at websites concerend with carpal tunnel syndrome. The most recently published paper provides a good lead in to this literature (Frueh 2015) and like several previous papers points out that much of the information which is easily found through the common search engines is incomplete, misleading, commercially sponsored or of dubious provenance. They used a scoring tool (EQIP) to assess the websites which they reviewed which was designed for the assessment of patient information sheets handed out before a surgical procedure. This is not ideal for scoring patient information which is less focussed on a particular clinical situation (finding out about your forthcoming operation) but at least introduces some uniformity into the assessment. They listed their 'top ten' websites in the article and it is interesting that 5 of them are sites which I have already identified further up this page as being good sources of information. Carpal-tunnel.net also appears in the list and that leaves 4 further sites which I have not previously recommended:
Mount Sinai Hospital - This is a very concise site, effectively just one page, which neverthless manages to include many statements which are poorly supported by evidence and recommends several interventions for which there is little quality evidence of efficacy - such as icepacks, elevation of the hand, and exercises.
Wheelers Textbook of Orthopaedics - This is a very well linked and structured resource but is probably more suited to medical professionals rather than patients. Only the most determined patients who have some grasp of medical terminology are going to find this user friendly and accessible. It is also somewhat selective in the evidence which it links to, for example, a section headed "Factors influencing surgical outcome" links to just 5 references. Three of these are studies of particular issues, diabetes, age and very advanced CTS and one is an odd study which assesses whether symptoms in different anatomical parts of the hand are more or less likely to recover after surgery. One reference alone is to a more generic study of factors influencing surgical results and that is to a small old study from 1992. This is a somewhat odd choice of material when there is an extensive literature on surgical prognosis.
Medscape - The link which is referenced by Frueh et al leads to a Medscape article which is specifically about carpal tunnel surgery and this article is markedly biassed towards consideration of surgical treatment. It is however not the only Medscape article on CTS and the more general article on CTS would have been a better overall reference
Healthline - Like the Mount Sinai site this is just a single page with some internal links and even more abbreviated information. This is adequate as a two minute summary of CTS, though it still manages to blame the condition, incorrectly, on typing.
Another recent study has attempted to assess whether patients who were either directed to, or found by themselves, web based information about CTS were more or less knowledgeable about it when they met a surgeon (Aung 2015). The conclusion in this study was that it made little difference but it is hard to know whether that reflects characteristics of the patient population, the website(s) they were directed to or the quiz used to test their knowledge.
DATABASES IN CLINICAL NEUROPHYSIOLOGY
This website stems out of work done over many years with a database of patient information. Recording clinical information from patients in a standardised manner so that it can be analysed mathematically is essential in medical research but is surprisingly rarely done in the course of ordinary medical care. Two current projects are trying to improve this situation for neurophysiological data recorded in ordinary practice:
SCORE - for the standardised reporting of EEG (electroencephalography)
ESTEEM - for sharing anonymised nerve conduction and EMG data between laboratories in Europe
COLLABORATORS IN THIS PROJECT
East Kent Hospitals University NHS Trust - Home page
Revision date - 2nd January 2017