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Spinal Fluid Leak?

pvbarebellbabeppvbarebellbabe Posts: 1
edited 02/05/2015 - 3:13 AM in Back Surgery and Neck Surgery
I had a micro-discectomy on my L5-S1 on January 6th. Recovery was going well. Started PT. Felt really good. I put on my pants on day and came up too fast and felt something very odd like a pop but it was not my back/incision. Later that day I had stroke like symptoms. My following symptoms were severe headache, balance issues, sensitive to light, sensitive to loud noises, nausea, severe fatigue, metallic and odd tastes in my mouth, some muscle spams. I went to the ER after my stroke like symptoms, they said it was me coming off Valium. That didn't sit well with me. I went back to my spine surgeon, they were concerned, ordered an MRI and MRA and sent me to a neurologist. My MRI and MRA came back negative but I am not sure for what as my doc is not calling me back to go over them. I did some research and it sounds like I may have a spontaneous spinal fluid leak. Any suggestions? I am planning to get a second option.

Thank you!


  • RunnerHKTRRunnerHKT Posts: 231
    edited 02/05/2015 - 4:34 AM
    I had a CSF leak after an injection (I moved my head, not the MD's fault at all). I felt terrible for about 3 days every time I tried to get up and do anything, then it sealed itself and I felt fine. Not too much to do about a CSF leak if you are fine now.
  • They would see it in the MRI If it was a spinal leak, although your symptoms do sound pretty spot on. Where abouts is your headache? And does it get better or worse when you lie down? Is your wound still nice and dry?
  • One of the best ways to see if it's a CSF leak is to see if the headaches go away when you lay down flat, then test to see what happens when you stand or sit up. I had a build up of fluid around the surgical site with my CSF leak. Was the worst thing I've ever experience.
  • Hey there-
    I know this is an old post but I wanted to reach out incase the problem is still there. CSF leaks can be very difficult to diagnose and there is very little known about them causing it to be a long lasting problem with no results. There are a couple of CSF leak specialists in the US but very minimal.  The thing that makes CSF leaks so difficult to diagnose and treat is the fact that imaging commonly misses them. We tend to believe that MRI's are the best testing for everything and hold them up on as the best testing for everything. The truth is they commonly fail when it comes to CSF leaks. They can sometimes show signs of CSF leaks such as Celebellar slump or Chiari Malformation which can be caused by a CSF leak however they tend to miss the actual leak its self. The correct test to find a CSF leak is a CT Mylogram- however, with you having this leak and it sounds like you have spine issues as well you should also get looked at for EDS or other connective tissue issues. Spontaneous CSF leaks are normally caused by a weak dura allowing for lower durability which is a sign of EDS. Having EDS changes a lot of what you should and should not do medically, including Lumbar punctures and any needles in your spine or around your neck etc as it can cause another leak. Therefore, if you do have EDS you can potentially become worse by getting a CT Mylogram to find the leak because they put a needle in your back and can cause yet another leak.. If this is still an issue please do some research by looking into DR Carroll in California. He has a Youtube video that explains all of this... Also, if you are leaking fluid out of your nose you can test it with glucose strips or test it on a brown paper back to see if it is indeed CSF. My best wishes with you.. I had brain surgery for Chiari in May of last year.. I had a pop noise in my head two weeks later and just went to hell since then.. I have been fighting for care for over a year.. I hope you find help.. If you need more help please send me a message and I can give you more connections 
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