Finally hope after 1.5 years
I’ve had one or more spontaneous spinal leaks for 1.5 years. One non targeted blood patch after being inpatient for a week due to the severity of my symptoms. Then two embolizations and glue patches I’ve a year after a CT Myelogram showed the root cause is venous fistula, with “many suspicious areas.” While all of this has taken me from non functioning 8-9/10 pain down to 4/10 pain and somewhat functioning, I’m still not ok and haven’t had hope for a long time. My current doctors have admitted they can’t do anything more for me and recommended I contact Cedar Sinai.
I did intake at Cedar Sinai and sent my medical records over a month ago. And I’ve been fighting and following up with my current hospital/practice for weeks to get them to release and send my images to Cedar Sinai. I received a call a couple days ago from Dr Schievink himself who completely validated everything and wants me to come out for testing and treatment. I cried tears of joy and relief to be validated and to speak to a world renowned expert in CSF leaks who is willing to not only speak to me but see and treat me SOON. The thought that this horrible experience could soon be over seems unreal.
I’m sharing because I’ve been through hell. Ive been gaslit since day 1 by hospitals, ERs, doctors, surgeons, you name it. I’ve fought, cried, given up, been bed ridden, came back and fought again because i had no choice - I’m a mom who needs to be strong for my daughter. I’ve gone to school for many years to get to where i am with my career and refuse to give it up for a mystery illness that nobody will help me with. I’m too young to never be able to do normal things again with my family. So i keep fighting, trusting my gut, pressing forward, and sharing. I have hard days and weeks when i can’t do anything but wallow. But i always come back angrier, more determined, and ready to burn things down until I get answers and get to the bottom of this. And you can do it too.
I’ll come back and share about my Cedar Sinai experience if it’ll help anyone. Sounds like I’ll be able to get out there in the next month or two.