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Neurology (Expert Forum)
Susac Syndrome
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Susac Syndrome
by Christa, May 02, 2001 12:00AM
Anyone out there with Susac Syndrome? I would like to share information and concerns.
I have had Susac for the last 10 years,and I have managed to complete my college education and get married, but in 1996 I had my second attack. I am regaining my mobility and cognitive ability and would like to hear from anyone who has a similar handicap.
Please post a reply if you know of anyone who shares my experiences and would like to talk about it in this forum.
I have had Susac for the last 10 years,and I have managed to complete my college education and get married, but in 1996 I had my second attack. I am regaining my mobility and cognitive ability and would like to hear from anyone who has a similar handicap.
Please post a reply if you know of anyone who shares my experiences and would like to talk about it in this forum.
Doctor's Answer
by CCF Neuro[P]-M.D.-RPS, May 02, 2001 12:00AM
Dear Christa:
I am sorry that you have this rare condition. I hope that treatment is helping (although many times one wonders if medical treatment is helpful) and are you getting hyperbaric treatment to help visual symptoms? For those on the forum who don't or haven't heard of Susac syndrome it is a microagniopathy of the brain, retina, and inner ear. It affects mostly adult women. It is unrelated to arterial hypertension or diabetes and is characterized by arteriolar branch occlusions of the brain, retina, and inner ear, with resultant encephalopathy, vision loss, vestibular dysfunction and asymmetrical sensorineural hearing loss. Treatment is usually with steriods, cyclophosphamide or antcoagulant therapy. Hyperbaric treatment may help visual symptoms.
Sincerely,
CCF Neuro MD
I am sorry that you have this rare condition. I hope that treatment is helping (although many times one wonders if medical treatment is helpful) and are you getting hyperbaric treatment to help visual symptoms? For those on the forum who don't or haven't heard of Susac syndrome it is a microagniopathy of the brain, retina, and inner ear. It affects mostly adult women. It is unrelated to arterial hypertension or diabetes and is characterized by arteriolar branch occlusions of the brain, retina, and inner ear, with resultant encephalopathy, vision loss, vestibular dysfunction and asymmetrical sensorineural hearing loss. Treatment is usually with steriods, cyclophosphamide or antcoagulant therapy. Hyperbaric treatment may help visual symptoms.
Sincerely,
CCF Neuro MD
there is a support group there for Susac Syndrome.
Good luck!