Spinal CSF Leak - my husbands symptoms are worsening. Help.

Posted by cholloway @cholloway, 3 days ago

My husband has been dealing with symptoms of spinal CSF leak and all imaging is clear which is typical and often times they won’t show for 80% of people. He is on the waiting list but his symptoms are worse everyday. If I take him to the ER they won’t admit him, his doctors don’t know what to do and some have dismissed him because of the negative results on imaging. I’m at a loss and just don’t know what to do. If you have anything you would recommend, please help.

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dlydailyhope | @dlydailyhope | 2 days ago

@cholloway
Has your husband had a myelogram? What would have caused his CSF leak? Is he seeing a neurologist or neurosurgeon? Could something else be causing his symptoms and has he been properly tested to rule things out?

1. https://neurosurgery.weillcornell.org/condition/csf-leaks/diagnosing-csf-leak

2. https://www.mayoclinic.org/diseases-conditions/csf-leak/diagnosis-treatment/drc-20522247

3. https://www.hopkinsmedicine.org/health/conditions-and-diseases/cerebrospinal-fluid-csf-leak

4. https://spinalcsfleak.org/about-spinal-csf-leaks/diagnosis-of-spinal-csf-leak/

cholloway | @cholloway | 2 days ago

He has all of the appropriate imaging and tests performed to rule out anything else - my insurance requires this. He is bed bound and now is vomiting because of the brain sag he has. We are on the waitlist for Mayo, and currently being reviewed for further evaluation at Duke and UCHealth in Colorado. His neurologist at Emory has ruled out everything. His leak is not appearing on imaging which is common for 80% of Spinal CSF Leakers. We fear for him to pursue a myelogram because of the severity of his symptoms. The leak was possibly caused by surgery in April. Every time he has a blood patch his symptoms dissipate.
Thank you for the information, trust me I have done my fair share of researching and advocating for my husband. I’m just at a loss at why doctors won’t view this as serious. Going to an ER won’t help. They will just give him pain meds or a headache cocktail and send him home.

buffalo69 | @buffalo69 | 2 days ago

I believe I have a cranial leak I have been diagnosing myself for (5yrs) I have all the symptoms that are listed and been fighting for (HELP) with none. I have been ignored, yelled at, threaten and called a liar. Had a Nuclear Medicine Cisternogram in Oct and have absolutely heard nothing on the results I have been TOTALLY miserable (each and every day) for five years Why will they not give me any answers?