scds hole in my head

Writer Recounts Her Struggles with Superior Canal Dehiscence Syndrome

Superior Canal Dehiscence Syndrome (SCDS) is a balance condition that involves a tear in the uppermost semicircular canal. According to the literature, the condition was first described and defined in 1995 by clinicians at Johns Hopkins School of Medicine. It is believed to occur because the bony surface of the canal did not grow to proper thickness during development.  

Individuals with SCDS often report that their ability to hear bodily noises (like their heartbeat) is more acute than normal. Until recently, these complaints were often considered psychosomatic in nature. Patients suffering from Superior Canal Dehiscence Syndrome (a “dehiscence” is a hole or tear) often present with an unusual group of symptoms, including loud noises that cause sudden vertigo and blurred vision. Once considered a rare condition, SCDS has an estimated prevalence of about 1 in a 1000.

Since SCDS was first discovered more than two decades ago, there is still much to be learned about it, including why it occurs in some people.

 

Recounting the SCDS Experience

 

Superior Canal Dehiscence Syndrome writer
Philippa Thomson

Now, a prominent researcher, editor and writer from Scotland, Philippa Thomson, has published a book re-telling her experiences with SCDS, a condition she was diagnosed with in 2006.  Ms. Thomson has enjoyed success in the creative world of picture research, holding the posts of picture manager on Macmillan’s multi-volume Dictionary of Art as well as picture editor at Phaidon Press, among other accomplishments.  Her book, entitled, A Hole in My Life: Battling Chronic Dizziness, describes the insidious onset of her condition and her struggles getting SCDS properly diagnosed and treated.

As Ms. Thomson recently told me:

 

“I was unsuccessfully treated and incompletely diagnosed in the UK, and then had to travel to America for treatment.  I had a grueling time, as do so many others with SCDS. I have written the first personal account of this condition, as a compelling memoir interwoven with an extensive amount of information about all inner ear conditions which are so closely related to the brain.  The medical information (in the book)  has all been read and checked by Dr. Gerard Gianoli in Louisiana, who became my surgeon and has treated more SCDS patients than anyone in the world.”

 

Further, Ms. Thomson informed me that between 1/3 and 1/2 of individuals diagnosed with Meniere’s disease turn out  to actually have SCDS.

Ms. Thomson recently received an award for her 2016 essay on the subject.  

In an era of patient centered care, Ms. Thomson insights and travails about her condition are valuable to clinicians and their patients who may suffer from SCDS.