13Jan/14
Lumbar spine MRI scan

MRI for back pain – does the report content affect the management?

Lumbar spine MRI scan

Lumbar spine MRI scan

Lumbar MR Imaging and Reporting Epidemiology: Do Epidemiologic Data in Reports Affect Clinical Management? This is the question posed by the authors of this recent study, seeking to determine whether adding details about changes seen on an MRI scan in those without symptoms had any impact. The conclusion was: ‘Patients were less likely to receive narcotics prescriptions from primary care providers when epidemiologic information was included in their lumbar spine MR imaging reports’. 

Why may this be?

We can start by saying that jumping down the route of an MRI scan for back pain is not a given, but rather it requires wise thought. The American College of Physicians published a paper in 2011 stating: Diagnostic imaging is indicated for patients with low back pain only if they have severe progressive neurologic deficits or signs or symptoms that suggest a serious or specific underlying condition. In other patients, evidence indicates that routine imaging is not associated with clinically meaningful benefits but can lead to harms. Addressing inefficiencies in diagnostic testing could minimize potential harms to patients and have a large effect on use of resources by reducing both direct and downstream costs. In this area, more testing does not equate to better care. Implementing a selective approach to low back imaging, as suggested by the American College of Physicians and American Pain Society guideline on low back pain, would provide better care to patients, improve outcomes, and reduce costs’. 

One immediate issue is that an MRI scan can show structural changes that could be assumed to be the cause of the back pain. On making that assumption, both the clinician and the patient can be pulled down a route of thinking to somehow alter the structure, or remove the tissue will henceforth change the pain. Of course there are many cases of intervention, including surgery, that lead to pain relief. Is it simply because the structure has been removed? The same is true of joint replacement when relief is frequently obtained. However, there are many cases when this does not happen, with pain and other symptoms persisting. We know that this is because pain is not an accurate indicator of tissue damage — see Lorimer Moseley talking about this here. Phantom limb pain is the ultimate example of pain without body.

A scan does not show pain

A scan does not show pain

Including information about common scan findings in people without back pain appears to be a potent message that affects the patient journey. In essence that is what we are seeking to change, the trajectory of the condition and the patient experience, for the better. Cultivating the conditions for the body’s physiology to adapt and develop in such a way as to emerge with healthy function.

What are we doing with this message? Normalising. The key point is the fact that we can have certain changes in the body, in the spine, that do not cause problems. Clearly, the person sitting in the clinic does have a pain problem that needs to be solved, but not necessarily via an MRI scan. If a scan has been taken and shows no serious pathology, this is great news. Having said that, many people describe uncertainty and anxiousness at the lack of a structural explanation for their pain. This is entirely understandable as they have not had their pain explained to them at that time, hence there is no meaning. No meaning creates further worry and this most certainly affects pain.

So, the first point of action once all the information has been scrutinised, is to create a perspective based upon what we know about the body and pain. Describing the pain mechanisms, the underpinning biology that involves many body systems, and the influences upon pain such as fatigue, previous experience, self-analysis of the situation, stress, anxiety, movement and other factors that are all biological. Everything is biological — this is a key data point. A movement, a thought, an emotion; they are all underpinned by brain activity that often creates and colours sensations in the body. We can use the different yet inter-related dimensions of pain (physical – cognitive – emotional) to construct bespoke programmes to tackle both the sources of pain and the influencing factors.

The second point of action is to plan an individual programme that encompasses specific training to re-programme the way in which the body has been working. This sits alongside techniques to develop confidence and awareness of the body, both vital for normal functioning. The patient’s role in this training cannot be over-emphasised, hence why motivational factors, and barriers, must be considered and addressed.

The third point is the monitoring and progression of the training and treatment, sculpting the change in pain and function that is entirely possible once the right conditions have been set for both understanding and action.

The questions regarding MRI and other investigations will continue to be asked and rightly so. We must continually challenge our own thinking about the best route forward for each individual patient. Understandably, patients will continue to expect and hope for the fullest assessment including MRI, the gold standard, and from this we must use the information wisely and objectively, explaining the findings and creating a perspective that makes sense and propels the best possible treatment.

If you are suffering with back pain or persisting back pain, perhaps with leg pain — sciatica — come and see us to find out how to move forward 07932 689081

 

09Jan/14
Postural Tachycardia Syndrome

PoTS — Postural tachycardia syndrome

Postural Tachycardia Syndrome

Postural Tachycardia Syndrome

The autonomic dysfunction that manifests as PoTS is poorly understood yet can cause alarming and distressing symptoms that hugely impact upon an individual’s quality of life. The experience of PoTS includes dizziness, palpitations and syncope, triggered by a range of stimuli such as heat, exertion, food ingestion and others. The variable nature and the plethora of symptoms that can be subtle on occasion, extending to the more overt collapse, can mean that day to day living becomes extremely challenging. The shift in the sense of self with PoTS as with other conditions, defines the suffering that the individual bears.

PoTS is often associated with hypermobility, joint hypermobility syndrome (JHS) and Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT). Many patients who visit the clinic with chronic pain and functional pain syndromes will demonstrate hypermobility on moving — lumbar spine, knees, elbows, thumbs, little fingers. It makes sense then, to be vigilant for symptoms of PoTS and dysautonomia.

For further information about PoTS, visit the PoTS UK website

There are several very good reviews of PoTS:

Postural tachycardia syndrome–current experience and concepts -Mathias CJ, Low DA, Iodice V, Owens AP, Kirbis M, Grahame R.

Abstract
Postural tachycardia syndrome (PoTS) is a poorly understood but important cause of orthostatic intolerance resulting from cardiovascular autonomic dysfunction. PoTS is distinct from the syndromes of autonomic failure usually associated with orthostatic hypotension, such as pure autonomic failure and multiple system atrophy. Individuals affected by PoTS are mainly young (aged between 15 years and 40 years) and predominantly female. The symptoms–palpitations, dizziness and occasionally syncope–mainly occur when the patient is standing upright, and are often relieved by sitting or lying flat. Common stimuli in daily life, such as modest exertion, food ingestion and heat, are now recognized to be capable of exacerbating the symptoms. Onset of the syndrome can be linked to infection, trauma, surgery or stress. PoTS can be associated with various other disorders; in particular, joint hypermobility syndrome (also known as Ehlers-Danlos syndrome hypermobility type, formerly termed Ehlers-Danlos syndrome type III). This Review describes the characteristics and neuroepidemiology of PoTS, and outlines possible pathophysiological mechanisms of this syndrome, as well as current and investigational treatments.

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Postural tachycardia syndrome: a heterogeneous and multifactorial disorder — full article free here
Benarroch EE.

Abstract
Postural tachycardia syndrome (POTS) is defined by a heart rate increment of 30 beats/min or more within 10 minutes of standing or head-up tilt in the absence of orthostatic hypotension; the standing heart rate is often 120 beats/min or higher. POTS manifests with symptoms of cerebral hypoperfusion and excessive sympathoexcitation. The pathophysiology of POTS is heterogeneous and includes impaired sympathetically mediated vasoconstriction, excessive sympathetic drive, volume dysregulation, and deconditioning. POTS is frequently included in the differential diagnosis of chronic unexplained symptoms, such as inappropriate sinus tachycardia, chronic fatigue, chronic dizziness, or unexplained spells in otherwise healthy young individuals. Many patients with POTS also report symptoms not attributable to orthostatic intolerance, including those of functional gastrointestinal or bladder disorders, chronic headache, fibromyalgia, and sleep disturbances. In many of these cases, cognitive and behavioral factors, somatic hypervigilance associated with anxiety, depression, and behavioral amplification contribute to symptom chronicity. The aims of evaluation in patients with POTS are to exclude cardiac causes of inappropriate tachycardia; elucidate, if possible, the most likely pathophysiologic basis of postural intolerance; assess for the presence of treatable autonomic neuropathies; exclude endocrine causes of a hyperadrenergic state; evaluate for cardiovascular deconditioning; and determine the contribution of emotional and behavioral factors to the patient’s symptoms. Management of POTS includes avoidance of precipitating factors, volume expansion, physical countermaneuvers, exercise training, pharmacotherapy (fludrocortisone, midodrine, β-blockers, and/or pyridostigmine), and behavioral-cognitive therapy. A literature search of PubMed for articles published from January 1, 1990, to June 15, 2012, was performed using the following terms (or combination of terms): POTS; postural tachycardia syndrome, orthostatic; orthostatic; syncope; sympathetic; baroreceptors; vestibulosympathetic; hypovolemia; visceral pain; chronic fatigue; deconditioning; headache; Chiari malformation; Ehlers-Danlos; emotion; amygdala; insula; anterior cingulate; periaqueductal gray; fludrocortisone; midodrine; propranolol; β-adrenergic; and pyridostigmine. Studies were limited to those published in English. Other articles were identified from bibliographies of the retrieved articles.

Visit our Hypermobility Clinic page here or call 07932 689081 to book an appointment

08Jan/14
Turn 'no' into 'yes'

Too many cases of “I can’t” — the effects of persisting pain

Turn 'no' into 'yes'

Turn ‘no’ into ‘yes’

Frequently patients tell me at the first meeting that they cannot do x, y and z. Naturally, when something hurts we avoid that activity or action because pain is unpleasant. It hurts physically and mentally. In the acute stages of an injury or condition, it is wise to be protective as this is a key time for the tissues to heal, and although some movement is important for this process, too much can be disruptive. As time goes on, gradually re-engaging with normal and desirable activities restores day to day living. However, in some cases, in the early stages of pain and injury, the protection in terms of the thinking about the pain and subsequent behaviours becomes such that they persist beyond a useful time. The longer that this continues, the harder it becomes to break the habits.

Don’t feed the brain with “I can’t”, feed it with “I can” — cultivate the natural goal seeking and creative mechanisms of the brain

The vast majority of patients who come to the clinic have had their pain for months or years. I would like to have seen them earlier so as to break the habits of thought and action that are preventing forward movement. As a result of the longevity and severity of the pain, the impact factors, distress and suffering, a blend of experiences, expectations and thinking about the problem, it is common to slip gradually into a range of avoidances that are strongly linked with thoughts that “I can’t do …. or …..”. These thoughts may have been fuelled by messages from care providers.

As a general statement, most activities that someone avoids because they fear that it will be damaging or painful can be approached with specific strategies that address both the thinking about the activity and the actual task itself. Recalling that pain is a protective device, an emergent experience within the body in an area that is perceived to be under threat and requiring defence, by diminishing the threat we can change the pain. And there are many ways of doing this on an individual basis — as pain is an individual experience with unique features for that person.

One of the main aims of our contemporary approach is to ensure that the individual understands their pain and problem so that the fear and threat value dissolves away. This leaves a more confident person willing to engage in training that promotes normal activities and re-engagement with desired pass-times.

To learn how you can do this, call us now 07932 689081

08Jan/14
Skiing - aches and pains

A quick note on… skiing — pain and injury

Skiing - aches and pains

Skiing – aches and pains

It is that time of year when many set off for the slopes for the joy of being on a mountain, the freedom of sliding, or bumping, down the piste and finishing the day with a favoured tipple, preferably in the sun. Sadly this is not always the case as there will be aches and pains, to be expected, and more serious injuries that require medical and surgical attention.

Firstly, the aches and pains. When we are active in a different way it usually hurts and that is normal. Waking up and trying to get out of bed with stiffness is never fun but it commonly eases off by the time a shower has been had and movement has been initiated. By and large, these aches and pains lessen as the week progresses and we are used to all the physical labours of carrying skis, poles and general clobber by the time we are heading home. I do not know how many people actively seek to improve their fitness before going skiing but many threaten to do so. If you are preparing, starting the week before will probably not do too much, but you may as well give it a go. Don’t go mad and pull a muscle. Ideally, several months before you should be undertaking exercises that in some way replicate skiing. Simple measures such as warming up and cooling down are often forgotten. Warming-up should involve easy mobilisation exercises of the whole body and cooling down in a similar way interlaced with a few stretches of the back and legs. Please note that you should always seek specific advice on exercises that are appropriate for you.

The more serious injuries involving ligaments, bones and tendons will need accurate diagnosis, good early management — that includes you knowing what has happened and everything that you should be doing physically and mentally to optimise healing; and there are many many things that you can do — pain control and a clear route forward of what needs to be done.

If you wish to prepare for your skiing trip and want to know more, or if you’ve suffered an injury that requires rehabilitation, please contact us now to find out how to go about getting back on the slopes and to normal living: 07932 689081

08Jan/14
Hypermobility

We must think more widely on hypermobility and joint hypermobility syndrome

Hypermobility

Hypermobility | EDS | JHS

Commonly when a patient presents with hypermobility or joint hypermobility syndrome (JHS) there are a range of other problems that are painful or at least involve some sensitivity. This can include headaches, migraines, pelvic pain, chronic and widespread musculoskeletal pain, irritable bowel syndrome (IBS), fibromyalgia and fatigue. The underpinning sensitisation is the thread that runs through all of these conditions and can be targeted with a range of strategies. These functional pain syndromes are increasingly a problem, affecting large numbers of people, more women than men and at the seat of a great deal of suffering. This does not need to be the case.

Comprehensively looking at an individual’s situation, allowing them to tell their story, reveals much of what we need to know and understand. The narrative is key, providing all the clues that can be confirmed in the main by a simple examination. Of course in some cases further investigations are required, such as an MRI, blood tests or an x-ray.

Once the problems have been identified by listening and observing — much like good detective work! — then a programme can be designed to target the pain sources (mechanisms) and the influences upon these sources such as anxiety, stress, fatigue, negative thought processes to name but a few.

This recent paper seeks to raise awareness of hypermobility – Ehlers-Danlos Syndrome (EDS) –  Joint hypermobility Syndrome (JHS), much as I do via these writings and talking to others in the profession. There are the more notable features of these conditions but then there are the factors that impact, the suffering caused, the limitations, the expectations and beliefs of the patient and the range of other painful presentations that are in fact part of the same picture, and must be addressed as such. The mission continues…

See our hypermobility clinic page here — or call us to start your treatment and training programme: 07932 689081 — we are always delighted to chat.

Am J Med Genet A. 2013 Dec;161(12):2989-3004. 

Re-writing the natural history of pain and related symptoms in the joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type.

Castori M, Morlino S, Celletti C, Ghibellini G, Bruschini M, Grammatico P, Blundo C, Camerota F.

Abstract
Joint hypermobility syndrome (JHS) and Ehlers-Danlos syndrome, hypermobility type (EDS-HT) are two clinically overlapping connective tissue disorders characterized by chronic/recurrent pain, joint instability complications, and minor skin changes. Fatigue and headache are also common, although are not yet considered diagnostic criteria. JHS/EDS-HT is a unexpectedly common condition that remains underdiagnosed by most clinicians and pain specialists. This results in interventions limited to symptomatic and non-satisfactory treatments, lacking reasonable pathophysiologic rationale. In this manuscript the fragmented knowledge on pain, fatigue, and headache in JHS/EDS is presented with review of the available published information and a description of the clinical course by symptoms, on the basis of authors’ experience. Pathogenic mechanisms are suggested through comparisons with other functional somatic syndromes (e.g., chronic fatigue syndrome, fibromyalgia, and functional gastrointestinal disorders). The re-writing of the natural history of JHS/EDS-HT is aimed to raise awareness among clinical geneticists and specialists treating chronic pain conditions about pain and other complications of JHS/EDS-HT. Symptoms’ clustering by disease stage is proposed to investigate both the molecular causes and the symptoms management of JHS/EDS-HT in future studies.

07Jan/14

Lesser known problems associated with Ehlers-Danlos Syndrome and Loeys-Dietz Syndrome

Here is a selection of reports and studies that discuss lesser known features of Ehlers-Danlos Syndrome (EDS):

Unexpected association between joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type and obsessive-compulsive personality disorder.

Rheumatol Int. 2013 Nov 23. — Pasquini M, Celletti C, Berardelli I, Roselli V, Mastroeni S, Castori M, Biondi M, Camerota F.

Joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type (JHS/EDS-HT) is a largely unrecognized, heritable connective tissue disorder, mainly characterized by joint instability complications, widespread musculoskeletal pain, and minor skin features. In a case-control study, 47 consecutive JHS/EDS-HT patients were investigated for the prevalence of psychiatric disorders and compared to 45 healthy controls in a single center. The psychiatric evaluation consisted of structured clinical interview for DSM-IV criteria by using the SCID-I and the SCID-II. Symptom severity was assessed using the Hamilton Anxiety Rating Scale (HAM-A), the Hamilton Depression Rating Scale (HAM-D), and the Brief Psychiatric Rating Scale (BPRS). The Global Assessment of Functioning Scale (GAF) was used to assess the overall severity of psychological, social, and occupational functions. JHS/EDS-HT patients had significantly higher mean scores for all questionnaires: HAM-A (6.7 vs. 3.8), HAM-D (6.4 vs. 2.7), GAF (75.0 vs. 86.1), and BPRS (27.5 vs. 25.6). The JHS/EDS-HT group had a 4.3 higher risk of being affected by any psychiatric disorder, and in particular, a 5.8 higher risk of having a personality disorder. In particular, 5 JHS/EDS-HT suffered from obsessive-compulsive personality disorder with an observed prevalence rate of 10.6 % (3.6-23.1). Psychiatric assessment of JHS/EDS-HT patients showed an extremely high prevalence of personality disorders (21 %), and of Axis-I disorders (38 %), mostly depressive. This study did not confirm the previously reported increased rate of panic disorders in JHS/EDS-HT.

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Ocular features in joint hypermobility syndrome/ehlers-danlos syndrome hypermobility type: a clinical and in vivo confocal microscopy study.

Am J Ophthalmol. 2012 Sep;154(3):593-600.e1. — Gharbiya M, Moramarco A, Castori M, Parisi F, Celletti C, Marenco M, Mariani I, Grammatico P, Camerota F.

To investigate ocular anomalies in joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type (JHS/EDS-HT).
DESIGN: Prospective, cross-sectional study.
METHODS: Forty-four eyes of 22 consecutive patients with an established diagnosis of JHS/EDS-HT and 44 eyes of 22 age- and gender-matched control subjects. Administration of a standardized questionnaire (Ocular Surface Disease Index) and a complete ophthalmologic examination, including assessment of best-corrected visual acuity, slit-lamp biomicroscopy, intraocular pressure measurement, indirect ophthalmoscopy, tear-film break-up time, Schirmer I testing, axial length and anterior chamber depth measurement, corneal topography, corneal pachymetry, and confocal microscopy. Main outcome measures included comparing ocular anomalies in JHS/EDS-HT and control eyes.
RESULTS: JHS/EDS-HT patients reported dry eye symptoms more commonly than controls (P < .0001). Scores of tear-film break-up time and Schirmer I test were significantly lower in JHS/EDS-HT eyes (P < .0001). Minor lens opacities were significantly more common in the JHS/EDS-HT group (13.6%; P < .05). Pathologic myopia with abnormal vitreous was found in 7 JHS/EDS-HT eyes (15.9%) and 0 controls (P = .01). Corneas were significantly steeper and the best-fit sphere index was significantly higher in JHS/EDS-HT group (P < .01). By confocal microscopy, the JHS/EDS-HT group showed lower density of cells in the superficial epithelium (P < .001) and higher density of stromal keratocytes in anterior and posterior stroma (P < .0001).
CONCLUSIONS: The most consistent association of eye anomalies in the JHS/EDS-HT group included xerophthalmia, steeper corneas, pathologic myopia, and vitreous abnormalities, as well as a higher rate of minor lens opacities. These findings indicate the need for ophthalmologic survey in the assessment and management of patients with JHS/EDS-HT.

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The cornea in classic type ehlers-danlos syndrome: macro- and microstructural changes.

Invest Ophthalmol Vis Sci. 2013 Dec 11;54(13):8062-8. — Villani E, Garoli E, Bassotti A, Magnani F, Tresoldi L, Nucci P, Ratiglia R.

To analyze in vivo corneal morphology and ultrastructural features in patients with classic Ehlers-Danlos syndrome (EDS).
METHODS: Fifty patients with classic EDS and 50 age- and sex-matched control subjects were studied. A clinical evaluation was made with the Ocular Surface Disease Index (OSDI) questionnaire and a complete ophthalmic examination, including assessment of the best-corrected visual acuity and refraction, slit-lamp biomicroscopy, tear break-up time, intraocular pressure, Schirmer test without topical anesthesia, and corneal diameter. Scheimpflug camera topography and in vivo confocal microscopy (IVCM) were used to investigate corneal morphology and corneal ultrastructural features respectively.
RESULTS: Classic EDS patients, compared to controls, had thinner and steeper corneas (P < 0.001 and P < 0.05, respectively; independent samples t-test). IVCM showed thinner stromas, lower keratocyte densities (P < 0.001), increased applanation-related stromal folds (P < 0.001; Mann-Whitney U test), and increased endothelial hyperreflective dots (P < 0.05) in these patients. The study group also had increased symptoms (OSDI score: P < 0.01, independent samples t-test) and signs (tear break-up time and Schirmer test: P < 0.001 and P < 0.05, respectively) of tear film dysfunction.
CONCLUSIONS: Patients with classic EDS had macro- and microstructural changes of the cornea, which is a target tissue of the disease. These findings should be considered to optimize clinical management of these patients and to evaluate the opportunity of adding ocular findings to the classic EDS diagnostic criteria.

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Neurologic manifestations of inherited disorders of connective tissue.

Handb Clin Neurol. 2014;119:565-76. — Debette S, Germain DP.

Inherited disorders of connective tissue are single gene disorders affecting structure or function of the connective tissue. Neurological manifestations are classic and potentially severe complications of many such disorders. The most common neurological manifestations are cerebrovascular. Ischemic stroke is a classic complication of vascular Ehlers-Danlos syndrome (type IV), homocystinuria, and arterial tortuosity syndrome, and may occasionally be seen in Marfan syndrome and pseudoxanthoma elasticum with distinct underlying mechanisms for each disease. Vascular Ehlers-Danlos syndrome can also lead to cervical artery dissection (with or without ischemic stroke), carotid-cavernous fistula, intracranial dissections and aneurysms potentially causing subarachnoid or intracerebral hemorrhage, and arterial rupture. Other neurological manifestations include nerve root compression and intracranial hypotension due to dural ectasia in Marfan and Loeys-Dietz syndrome, spinal cord compression in osteogenesis imperfecta, and mucopolysaccharidosis type I and VI, carpal tunnel syndrome in mucopolysaccharidosis type I, II, and VI. Impaired mental development can be observed in homocystinuria, mucopolysaccharidosis type II, and the severe form of mucopolysaccharidosis type I. For the neurologist, being aware of these complications and of the diagnostic criteria for inherited connective tissue disorders is important since neurological complications can be the first manifestation of the disease and because caution may be warranted for the management of these patients.

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Pediatr Radiol. 2011 Dec;41(12):1495-504;

Loeys-Dietz syndrome: cardiovascular, neuroradiological and musculoskeletal imaging findings.

Kalra VB, Gilbert JW, Malhotra A.

Loeys-Dietz syndrome (LDS) is an increasingly recognized autosomal-dominant connective tissue disorder with distinctive radiological manifestations, including arterial tortuosity/aneurysms, craniofacial malformations and skeletal abnormalities. LDS exhibits a more aggressive course than similar disorders, such as Marfan or the vascular subtype of Ehlers-Danlos syndrome, with morbidity and mortality typically resulting from complications of aortic/arterial dissections. Early diagnosis, short-interval follow-up imaging and prophylactic surgical intervention are essential in preventing catastrophic cardiovascular complications. This review focuses on the cardiovascular, neuroradiological and musculoskeletal imaging findings in this disorder and recommendations for follow-up imaging.

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J Bone Joint Surg Am. 2010 Aug 4;92(9):1876-83.

Musculoskeletal findings of Loeys-Dietz syndrome.

Erkula G, Sponseller PD, Paulsen LC, Oswald GL, Loeys BL, Dietz HC.

BACKGROUND: Loeys-Dietz syndrome is a recently recognized multisystemic disorder caused by mutations in the genes encoding the transforming growth factor-beta receptor. It is characterized by aggressive aneurysm formation and vascular tortuosity. We report the musculoskeletal demographic, clinical, and imaging findings of this syndrome to aid in its diagnosis and treatment.
METHODS: We retrospectively analyzed the demographic, clinical, and imaging data of sixty-five patients with Loeys-Dietz syndrome seen at one institution from May 2007 through December 2008.
RESULTS: The patients had a mean age of twenty-one years, and thirty-six of the sixty-five patients were less than eighteen years old. Previous diagnoses for these patients included Marfan syndrome (sixteen patients) and Ehlers-Danlos syndrome (two patients). Spinal and foot abnormalities were the most clinically important skeletal findings. Eleven patients had talipes equinovarus, and nineteen patients had cervical anomalies and instability. Thirty patients had scoliosis (mean Cobb angle [and standard deviation], 30 degrees +/- 18 degrees ). Two patients had spondylolisthesis, and twenty-two of thirty-three who had computed tomography scans had dural ectasia. Thirty-five patients had pectus excavatum, and eight had pectus carinatum. Combined thumb and wrist signs were present in approximately one-fourth of the patients. Acetabular protrusion was present in approximately one-third of the patients and was usually mild. Fourteen patients had previous orthopaedic procedures, including scoliosis surgery, cervical stabilization, clubfoot correction, and hip arthroplasty. Features of Loeys-Dietz syndrome that are important clues to aid in making this diagnosis include bifid broad uvulas, hypertelorism, substantial joint laxity, and translucent skin.
CONCLUSIONS: Patients with Loeys-Dietz syndrome commonly present to the orthopaedic surgeon with cervical malformations, spinal and foot deformities, and findings in the craniofacial and cutaneous systems.

07Jan/14
Hypermobility

Hypermobility – Ehlers Danlos Syndrome and gastrointestinal problems

Hypermobility

Hypermobility

Hypermobility is common and is certainly a feature that we often see in patients at the clinics. Some patients have been diagnosed with hypermobility but do not know what it really means and need clarification, some are suffering aches and pains that are limiting and troublesome and still others visit with chronic pain and hypermobility is seen at the assessment.

See hypermobility blogs — blog 1 — blog 2 — blog 3

I always begin with an explanation that includes pointing out that many top athletes are hypermobile and hence there can be advantages. Per se, hypermobility is not necessarily a problem and in fact many who come for advice do not have any significant issues. They may need a programme that includes spatial awareness training, balance and proprioceptive exercises, but in essence, they can continue as normal.

Those patients who suffer pain and on-going pain, often widespread, require a different approach that considers the pain source and the influences upon pain. The training will include proprioception and spatial awareness exercises, but the baseline start point will be different. Before this even, there is often a need to tackle the sensitivity in several ways, termed top-down and bottom-up. Top-down refers to how we can target the brain including education, strategies to deal with thoughts that create anxiety and adaptations to the body maps that change our body sense and experience. Bottom-up is the use of the body tissues to change sensory processing and hence pain and sensitivity. There are many ways of doing this, and altering the combinations of the top-down and bottom-up  strategies creates potent ways of tackling pain.

Frequently, those who suffer persisting musculoskeletal pain will also bare pain through other body systems, especially the gut. See this recent review:

BKW5H0_stomach-ache_342x198Functional digestive symptoms and quality of life in patients with ehlers-danlos syndromes: results of a national cohort study on 134 patients. Zeitoun JD et al.

Abstract

BACKGROUND AND OBJECTIVES:

Ehlers-Danlos syndromes (EDS) are a heterogeneous group of heritable connective tissue disorders. Gastrointestinal manifestations in EDS have been described but their frequency, nature and impact are poorly known. We aimed to assess digestive features in a national cohort of EDS patients.

METHODS:

A questionnaire has been sent to 212 EDS patients through the French patient support group, all of which had been formally diagnosed according to the Villefranche criteria. The questionnaire included questions about digestive functional symptoms, the GIQLI (Gastrointestinal Quality of Life Index), KESS scoring system and the Rome III criteria.

RESULTS:

Overall, 135 patients (64% response rate) completed the questionnaire and 134 were analyzable (123 women; 91%). Mean age and Body Mass Index were respectively 35±14.7 years and 24.3±6.1 kg/m(2). The most common EDS subtype was hypermobility form (n=108; 80.6%). GIQLI and KESS median values were respectively 63.5 (27-117) and 19 [13.5-22]. Eighty four percent of patients had functional bowel disorders (FBD) according to the Rome III criteria. An irritable bowel syndrome according to the same criteria was observed in 64 patients (48%) and 48 patients (36%) reported functional constipation. A gastro-esophageal reflux disease (GERD) was reported in 90 patients (68.7%), significantly associated with a poorer GIQLI (60.5±16.8 versus 75.9±20.3; p<0.0001). GIQLI was also negatively impacted by the presence of an irritable bowel syndrome or functional constipation (p=0.007). There was a significant correlation between FBD and GERD.

CONCLUSIONS:

Natural frequency of gastrointestinal manifestations in EDS seems higher than previously assessed. FBD and GERD are very common in our study population, the largest ever published until now. Their impact is herein shown to be important. A systematic clinical assessment of digestive features should be recommended in EDS

It is routine in our clinic to ask about other body systems as this tells us a great deal about the level and type of sensitivity, which in turn guides the comprehensive treatment and training programme.

Increasingly, patients are being referred for irritable bowel syndrome and other functional pains (e.g./ migraine, headache, chronic back pain, chronic joint pain, pelvic pain, vulvodynia). Due to the underpinning sensitivity residing within the central nervous system — this is not a disease but rather an adaptation; neuroplasticity at play — we can target these mechanisms with a range of effective strategies to re-learn or re-programme the way in which the neuroimmune system is expressing itself. These systems are fundamentally designed to change, learn and grow. They simply need the right conditions to do so, and all too often there is a belief that a situation cannot change and hence all the choices and behaviours prevent any form of forward movement. This is just not true and through our understanding of the body systems and their adaptability, we are creating increasingly effective and diverse ways of tackling pain and suffering.

If you have been diagnosed with hypermobility or are suffering with chronic pain, call us now to discover how you can change your experience and move on: 07932 689081 — Specialist Pain Physio Clinics in London: Hypermobility Clinics

05Jan/14
Basal Ganglia | Dystonia

Dystonia — facing the world

Basal Ganglia | Dystonia

Basal ganglia | Dystonia

Dystonia — the term used to describe uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain. It is estimated to affect at least 70,000 people in the UK; Dystonia Society — has varying impact upon the individual. By this I refer to the way in which it makes the person view themselves, their sense of self, and how the world sees them.

Our physical persona, the way we represent ourselves to the world via body language, posturing and movement to an extent defines us and how we feel. This is bi-directional as we will respond physically to how we are feeling and what we are thinking as much as noticing how our body feels to then ascribe an emotion; for example, butterflies in the stomach will typically trigger thoughts that we must be anxious.

Having spoken to many people with dystonia, this significant part of the experience is rarely addressed. It must be. On a practical level, understanding that movement is affected by a number of influences such as where we are, who we are with, how we are feeling, where we are and what we have been doing, helps to cope and deal with the unwanted motion on several different levels. Further, to know that the brain is constantly predicting what actions will be required next and planning how to use the body, provides insight into how certain involuntary movements can be initiated.

In dystonia, the way in which the brain perceives the body is altered as is the way movements are planned and executed. A loss of precision means that there is unwanted and uncontrolled actions in both a sensory and motor context. This is why training must be multisensory and embrace the sensorimotor system as a whole, from a planning stage through to actual movement.

How we face the world and whether we choose to face the world will be dependent upon how we feel. Being able to cope with this will impact upon the extent to which socialisation continues or is voluntarily curtailed. Cultivating skills in dealing with the thought processes and being able to intervene independently has a positive effect, reducing and minimising the impact. This is also a key skill to use in optimising the outcome of the training programme, by changing the way that the brain is functioning in a motor sense, so that the focus and quality is of a high level. Practice is key.

Focused attention training or mindfulness should form part of a comprehensive treatment programme. It can be thought of as setting the scene, creating a brain state of calm and readiness for the actions that are required to re-train precision of movement and body sense. It is a state that can be cultivated that means troubling thoughts do not get played through the body (tension, altered movement, involuntary movement).

There are many healthy, physical and mental benefits of mindful practice, tackling the so significant non-motor factors that are barely mentioned, yet play such a huge role in the individual’s suffering. We are understanding the brain changes associated with this practice as neuroscientists study the effects upon the wiring — a crude analogy of the brain’s function — and how this translates into a positive experience of life.

Stand alone, mindfulness practice can change our interface with the world. Combined with specific sensorimotor training and the creation of new habits, the potency is magnified. On a practical note, mindfulness can be used at all stages of dystonia, acute through chronic. The sensorimotor training often requires a degree of quiescence and hence will usually begin after botox treatment. The design of any treatment and training programme will depend very much on the individual need and circumstance.

As I have argued recently in writing and speaking at several conferences (Dystonia Society DayBritish Neurotoxin Network meeting 2013) , to address dystonia — and chronic pain — we must consider the biology of the condition but also the biology of the influencing factors that are such a significant part of the narrative.

Appointments — please call us on 07932 689081

 

 

03Jan/14
The fulcrum point

Changing pain and suffering in 3 steps

The fulcrum pointLogically, anecdotally and empirically, understanding one’s pain is a foundation from where action can be taken to initiate change. Conversely, lacking insight into the cause of pain and being unaware of the contributing factors creates anxiety that forms its own cycle of problems. This is certainly true when pain persists with no obvious structural or pathological reason — a common scenario.

The initial feeling of pain could be termed the primary sensation. The location, quality and intensity are noted, motivating responses: have a look, move, perhaps touch and seek advice. From the primary feeling comes an automatic thought that is deeply grounded in a belief system about pain, injury, life, health and the landscape of our world. This automatic thought triggers a range of emotional and physical responses that are experienced as secondary effects. The secondary effects of limitation, suffering, further pain and sensitisation — an often downward spiral accompanied by despair,  a perceived loss of control — accounting for much of the impact upon quality of life.

There is a fulcrum point between the primary and the secondary that is so potent; a fulcrum point being the place where leverage can be applied to affect a process. In physical therapy — for this is my background — this could be the careful and reasoned application of a hands-on technique to effect change in the way the brain processes sensory information from the body; the basis for relief as the brain alters it’s outputs and hence the sense of physical self. Similarly, to intervene at the point of feeling pain so as to minimise or even prevent the secondary effects that are driven by the automatic thought is a practice that can be cultivated.

  • Pain -> thought — meaning? -> increase in pain, tension, suffering
  • Pain -> thought — mindfulness -> reduced pain, tension, suffering

3 steps to easing pain & suffering 

There are several steps to developing the practice. Firstly, understanding your own pain is vital. What are the biological mechanisms and sources? And what can influence this biology? The latter includes stress, fatigue, movement, thinking, beliefs and the environment. A further point to consider is always that of perception. We all have our own unique perception that is created by our mind~brain, again based on our view of ourselves and the world, moulded by years of experience that blends with our genetics. No matter what the situation, our own reality is the one we respond to, and in the case of pain and sensitivity, the responses can increasingly be triggered by non-threatening situations and environments that are perceived now to be threatening.

The second step is to develop awareness of one’s own thinking and perception at the point that pain is noted. It is by becoming aware that we can then make the necessary change and apply leverage. To be aware means that you must be present as opposed to the autopilot mode where the mind drifts into the past, replaying tapes of previous events — that can equally trigger emotional and physical responses — ruminating on what has been, or fantasising or constructing a future. Neither fundamentally exist, yet we respond and behave as if this is the case; it is our reality for that moment. In doing so, the present moment is missed and we follow the mind and it’s wanderings. All minds do this, this is normal, but if the wanderings create suffering, angst and discomfort, it does not bode well for a happy existence.

The third step is to practice. Being aware is being mindful; the way in which pain and suffering can be eased. Creating a habit of regular practice is certainly achievable with a little motivation, guidance and support. Within a few weeks, people often report a significant difference in how they feel in terms of pain but also in their ability to deal with pain, their resilience. Mindfulness practice changes how the body physically feels and there is a fortified sense of facing life. The release of tension, the removal of the sandbags from the shoulders is welcome in all cases.

Specialist Pain Physio Clinics in London for chronic pain and injury — mindfulness is part of a comprehensive treatment and training programme to reduce pain and suffering, and guide individuals back to a fulfilling life — call us on 07932 689081

01Jan/14
The patient journey

Humanising the patient journey

The patient journeyModern healthcare features innumerable methods of technical investigation such as the MRI scan, blood tests and nerve conduction tests. All provide detailed information about structures and physiology state yet none tells us about the person, the human being.

Many people will undergo tests and often this is necessary to determine whether there is a serious pathology or changes in body that require specific procedures.

No matter what the test or investigation, it must never be forgotten that it is a human being ‘tested’, not a number in a line, or a condition, but an individual with thoughts, beliefs, expectations and fears. It is by addressing these that we can make the patient journey a human one that has meaning.

The patient journey usually begins when something feels wrong: a pain, a change in the way the body works or is experienced, a sudden incident or a gradual realisation that there is an altered sense of self. This threshold and realisation prompts action. A visit to the doctor or in the alarming situation a rapid transfer to a hospital, may be the first encounter with the healthcare system.

Those first moments of the experience, the thoughts, the feelings, the interactions, the words, the fear evoked by all of these, will impact upon the trajectory of the journey and of course the immediate care for an emergency.

At each of these points, when there is an opportunity to reassure, calm, listen, just be, they should be taken. These simple yet potent interjections that can be administered with ease in amongst the hullabaloo of tests, wires, medical language, white coats, stethoscopes, needles, injections and trolleys. Let them not be lost.

As we stroll into 2014, as the science progresses, it is reassuring to see some authors drawing upon philosophical thought, in particular phenomenology, so we can keep a firm footing in the patient’s experience, for this is where the real story resides. The patient narrative is the key thread that must be given room for expression via firm description, vague terms and bodily expression. The examination that follows; who examines who? The connection, the information flow that requires sound mind, as this is the function of the mind that must interact with the examiner.

So let us in healthcare be mindful of the human being at the centre of the story. The experience that they share with us is unique and an expression of their perception build upon a set of entrenched beliefs about their life, the World and their expectations — and hopes and dreams. We are in a strong position to oil the wheels that need to turn smoothly for a patient journey to lead anywhere meaningful.