Friday, 25 February 2011

SCDS - Superior Semi-Circular Canal Dehiscence Syndrome

Natural sounds are not a problem, so the ripples of the river over a long forgotten ford, patterns of sound and light, are pleasant.

Man made sounds are a huge problem ... plastic bags rustling, air-con, traffic, crowds, amplified sound - but not acoustic instruments, so the orchestra causes no pain in the auditorium, until the cymbals clash.

Yes, its real. Its not me, its not emotional, stress-related, neurotic, histrionic or hypochondrial.
Its a named and recognised (since 1998) medical condition.

Its located in the inner ear, the superior semi circular canal - and I think I am right in saying that 'dehiscence' means thinning or holes in the bone, that surround the organ/s of the inner ear. Due to that dehiscence, sound travels inter-cranially - direct into the brain cavity, not via the proper channels - is it any wonder I get brain tired ! My poor brain ! And SCDS incorporates 'Autophony' and Tullio's Phenomenon.

What are REAL and ACKNOWLEDGED now are the sound-related problems that I have had since the early 1990s - that stopped me circle dancing, swimming in indoor pools (so not much swimming at all in the UK where its to to to c - c - cold to swim in outside pools most of year and in the sea rarely) ... and eventually singing in choirs. All noise related inhibitors to my favourite leisure pursuits, but I could still work full time, in a quiet environment. But then I got .... (or rather, I had a flare of what I was born with, but no one knew it .... ) LUPUS.

Its the Lupus - SLE - Systemic Lupus Erythematosus - that brought me the electric wheels, which was a great help with the SCDS / Meniere's Syndrome /Tullio's Phenomenon - related dizzyness.

My Goodness Me - what a list of ailments. But, actually, life is pretty good.

I have a lovely accessible home in a lovely part of the world and good friends, and just enough support from social services to make the necessary bits of life (not forgetting housework) work.

There are links on the list on the right of this page to support and information. If you too have any of these medical issues, and the links don't answer your questions, leave a comment below and I may be able to suggest further sources of information.


Sunday, 6 February 2011

Sally's Syndrome exists !

No, not a weird sea creature, but the canals and labyrinths of the inner ear, showing Sally's Syndrome, except I will never get to call it that, as it has been named already, but only as recently as 1998, first described by Dr Lloyd B Minor of John Hopkins University, Baltimore, USA.

Found by me after an incubation period of only one month, since my writing on 6 January 'In the Days Before We Knew ...', (click on post title on right hand side) when I bemoaned the fact that many crips have their own peculiar impairments and symptoms, unknown to the medics or anyone else. Writing that blog page must have set in motion some percolation of information through the universe, such that I have found a clinical description of one of my weirdest symptoms, which will profoundly alter the care I get from the medical profession, and support my care and occupational therapy assessments by social services.

Fanfare of trumpets, whoops of joy, general throwing of hats into the air ...

Superior Canal Dehiscence Syndrome with Autophony and Tullio's Phenomenon.

Thanks to The Meniere's Society's publication SPIN
Edition No. 70 Winter 2009 page 5 ~ Systemic Lupus as a known cause of Meniere's Syndrome
Edition No. 72 Summer 2010 page 14 ~ Tullio's Phenomenon
and also
Wikipedia page on Superior Canal Dehiscence Syndrome modified 8 January 2011
and also the Diagram of Superior Canal Dehiscence with Tullio, or alternatively, with Autophony, (I think I have both !) which with Adobe Flash Player turns into lovely coloured moving pictures, courtesy of Google Images at Delaware Biotechnology Institute, Michael Teizido MD.
(No, again, I cannot get that link to work.)

It has taken me four days to bring together all the various sources of information, dating from the Osteopath's description in 1993, through ENT, Rheumatology and Osteopathy investigations and consultations, and collate them into a coherent description of my symptom history.

None of this would have been possible, but for the three monthly treatment with 120mg of DepoMedrone pinged into my butt from a huge needle a week ago by the Rheumatologist. Within seven to ten days, it clears my brain fog, returns suppleness to my hands, and gives me the physical capacity to sift through documents, the cognitive capacity to read them, then the energy to sit upright at my desk and type it all up.

So I have written to my General Practitioner (GP), my Rheumatologist, my Doctor of Osteopathy, my social worker and my Occuptional Therapist, with eleven pages of supporting documentation, and closed with these remarks:

It is important and necessary to my well being that these symptoms are diagnosed and named. This is in order that I have the various diagnoses in writing for evidence for the many times I have to prove my disabilities for state benefit and grant purposes and investigations, to social services (DCC Adult and Community Services) and various other agencies and charities. State benefits and grants provide for my home, my wheelchairs and my wheelchair accessible vehicle. Social services support is essential for my day to day living.

I think my GP will be the lead in progressing this, and when I see her next week I will ask for a referral to an Otolaryngologist.

Progress !