I am new to this and any forum. This post regarding csf leaks reminds me of myself. My Canadian, BC and Seattle Washington doctors have advised me to learn to cope with my symptoms but do not have any help to offer. I do not have any medications or suggestions other than look for help to cope.
I do not have a diagnosis but have every symptom of CSF Ottohrea and a family history of connective tissue disorder, and ascending thoracic aortic aneurysm. My face is swollen on the side that weeps fluid near my ear but also on my cheek and chin and one side of my forehead and all over my scalp. I have symptoms of POTS or some kind of autonomic problem. It’s very frustrating. I can not even get a doctor to look for a leak even knowing I have had two epidurals during caesarian sections.
We can not get the beta transferrin test here. The eye doctor even remarked that i have unusual fluid in my eyes! I think I’ve always had high intracranial pressure. I have tortuous blood vessels in my neck and large hepatic hemangioma. My neck is always stiff. I frequently have facial and body spasms. Apparently no chiari herniation on mri. My shoulders are always extremely tense. And I’m a very calm reasonable 53 year old woman.
I have three children with various skeletal problems of scoliosis and kyphosis and fatigue, heavy head feelings are familiar in this family. Any help to at least get the test to locate a leak would be appreciated. Thank you to Dr. Diana for your support!