Sara (40) , living in Ibiza, contracted Rheumatic Fever 3 years ago, the complications she has been left with are: Post Strep Arthritis - this is usually manageable , except during flare ups when very heavy duty pain meds are required. Sydenhams Chorea progressing to Paroxysmal Dystonia /Dyskinesia - intermittent attacks appear to be brought on by stress , hormonal changes, excitement , exercise and exertion Treatment currently, is primarily self injected Valium - when required - to reduce the length and severity of these seizures/ Dystonic storms. Unlike epilepsy the patient is always conscious and the unnatural contortions and severe muscle contractions are exceptionally painful. These can last for several hours without intervention. Saras Dystonia is unfortunately full body. All other medications that have been tried have an unacceptably high level of side effect rendering quality of life to be untenable. As well as the actual dystonic storms which now may be two or three a month, there are a significant number of almost daily chronic symptoms including a permanent three year headache, brain fog, faintness , breathing problems , pre attack aura, lack of concentration, sight disturbance etc etc. the list goes on. These lower grade symptoms severely affect quality of life almost more than the full blown seizures as they are constant. Her relentless amateur research has recently unearthed there is a strong link between TMJ disorders and Dystonic type problems. ie her own problem/ Tourettes/ some types of Parkinsonism etc. Without doubt Sara is a Clencher! and whilst TMJ problems have not yet been officially diagnosed , there seems little doubt all is not well in the TMJ department. A relatively simple device that relieves the pressure on the typically clenched joint and thus reduces the pressure on the nerve and subsequent build up of inflammation and synovial fluid appears to have an almost miraculous effect for many sufferers. The unusual thing seems to be that whilst one might normally be trying to achieve a 1-2 mm separation, these devices appear to be around 8mm in some cases. It is perhaps an indicator of how miserable the life quality can be for these patients, that are more than willing to wear these somewhat uncomfortable devices. The two video links give an insight into what we are trying to pursue. The first link shows a patient with Parkinsonism, but the dystonic attacks are typical of what Sara experiences. The second link is closer to Saras actual condition but does not show detail of the appliance. The third link is of a Dr Stack whose videos include more technical detail on Xrays, MRI and actual prosthesis design. dystonia-foundation.org/what-is-dystonia/forms-of-dystonia/paroxysmal-dyskinesias/more-on-paroxysmal-dyskinesias https://youtube/watch?v=VUlaHvrgZME tmjstack/videos.html
Posted on: Sat, 17 Jan 2015 09:33:24 +0000
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