Please post your story. Mine is from an ACDF surgery.

BACKGROUND: Complications following a routine ACDF surgery 05/10/19. Possible dural tear thus a drain was inserted into my neck however following 3 days of strict bedrest and no fluid retained from the drain, (though extremely nauseated when upright), I was discharged.

Readmitted within the week and endured a lumbar puncture, countless tests, a 48-hr lumbar drain and a blood patch. All this with the worst headaches of my life (10 out of 10 - and I have quite a high pain tolerance).. Once again I was discharged 05/28/19 but extremely ill and about 15 pounds lighter and obviously malnourished.

I continue to have headaches every day along with vision, speech (now resolved), an unsteady gait, hyper sensitivity to light, sound and smell, and arm/shoulder/leg pain and weakness. Been to urgent care several times.

All day and night with constant ice packs on my forehead, I lay horizontal with just enough time to shower, eat, and use the restroom. As we CSF leaking sufferers know, our heads feel the severe pain and the nausea will set in if we are upright for too long.

That being said, I have left the house (other than to the hospital) less than 6 times in the last 2.5 months just for 30 minutes at a time with plenty of painkillers beforehand just to try and feel like a “normal” person.

I temporarily stay with my parents since they have a downstairs bedroom since the thought of a staircase overwhelmed me.

Had another blood patch but didn’t seem to help as it did once before. . Now I am being referred to Dr. Schievink, a world renowned CSF leak specialist for review at Cedar Sinai. Files should have been received by his team today via overnight delivery.

REQUEST: Will someone please tell me exactly what had been done for them and their outcome (# blood patches, types of surgeries for repair, continued symptoms, etc.?)

It’s ok if the stories are not all bright and cheery although I hope some will be - I simply would like a realistic sense of what type of life is to be expected post CSF leak.

Thank you for taking the time to read and please post regardless if you feel it is relevant or not it may just help someone else. Thank you.