Friday, August 5, 2011

Questions for Dr. Lori Jordan

-Superficial Siderosis is a disorder, has “Z” contracted this disorder/disease because of the trauma he experienced? No,not contracted, but has this disorder from a bleed that he experienced in the accident. 
-Does everyone who has this disorder start with a traumatic accident? No, but for other reasons for bleeding in the brain. She does know of one teen who has this disorder he lives in South Africa and Dr. Levy works with him.
-Did the diagnosis change at all upon discovering the severity of the accident? No,
very sure of SS and arachnoid ?bleeding?  - she’s looking for any other infections or causes of the pain and wants to be meticulous and doesn’t want to miss any possible infection or aneurysm 
-Will therapy help Z to regain his mobility? Yes, depends on helping the inflammation in his back, if we can decrease his inflammation then mobility should return.
-This “dry blood”, has it attached itself to Z’s spinal cord? Yes, and will stay there , goal is to decrease the inflammation. Something is making this active and we want to be sure of what that is
-Is there someway to break this pocket of fluid up? No, only decreasing it
-Is surgery out of the question because of how he has developed around this clot?
-I’m confused by this diagnosis I found that it is a disorder where hemosiderin (free iron) is deposited in parts of the central nervous system (brain and spinal cord tissue). It is often caused by repeated periods of bleeding in the brain (subarachnoid space). Did Z have repeated periods of bleeding in the brain? Yes, at some point he has or he could have a leak we want to do a scan of his head we only scanned from the base of his neck to the base of his spine. Or did he bleed from somewhere else? As far as we can tell he bled from his head. How does this get missed?
-The symptoms of SS: progressive ataxia (lack of muscle coordination), Spasticity, hearing loss, dementia, depression, impaired vision, pyramidal signs, fine motor control impairment, facial palsy, numbness in legs, abnormal sensation in legs. These things do not match up with Z’s symptoms. Why? Superficial siderosis (SS) of the CNS is caused by repeated slow hemorrhage into the subarachnoid space with resultant hemosiderin deposition in the subpial layers of the brain and spinal cord. Despite extensive investigations, the cause of bleeding is frequently undetermined. He has pain in the backs of his legs with occasional spasms, stiffness in his back and stiffness in his legs, and he is losing mobility in these areas. These are caused from the inflammation that is occurring at the base of his spine.
-Is there a support group? No, I don’t think there is one I will look into that. This only occurs mostly in adults.
-Are there other children with this and where are they? No, only the teen in Africa that we are aware of.

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