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Csf leak again many years after being sealed

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    Csf leak again many years after being sealed

    Got knocked over by a car a couple weeks ago, although at the time thought I was ok, the dreaded headaches are back. My csf symptoms are back, I’ve been sealed for years, so so worried. I had this before for 6 years after a back operation. I’ve not seen neurologist yet probably 2 to 3 month wait for referral and trying to remain led down as much as I can. Hoping and praying it stops. So scared, operation to fix a leak is not an option for me, I have an extensive venous malformation around the spinal area so makes any treatment difficult, any additional ideas about self help for healing would be helpful. I’m currently trying to stay led down, and keep well hydrated. My life was all back on track ……unable to do hardly anything now.

    Hi lisalailey,
    Since I'm mainly on the MS board, I'm no authority on CSF leaks but it sounds to me as if you're having such disabling symptoms that you need medical attention sooner than 2 or 3 months from now. In fact you probably need immediate medical attention. Have you tried making it clear to the neurologist's office that you'd like to be seen ASAP? I believe most doctors can make provisions for squeezing a patient into a busy schedule if there is a need, and you have a need.

    Maybe a different neurologist? A trip to the ER without waiting for an appointment is probably best. Please ask the neurologist's office about this.
    Last edited by agate; 06-10-2022, 05:23 PM.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.


      ((((((lisalailey)))))) ~

      I am so very sorry that you were hit by a car. Was an accident report submitted by the driver to insurance? Were police called to the scene? You should have been taken to an ER immediately after the accident. I gather that didn't happen.

      I agree with agate that you should go to the ER. I don't think you should wait to get a neurologist appointment. You are suffering, in pain, and you have a CSF history. The possibilities for your symptoms could be any of a variety of injuries. It could be anything from a concussion to a CSF leak. You won't know until you are tested and examined. You at least need a CT scan and/or an MRI.

      The ER is your best option now. I hope you will go, and then please return and let us know the results and how you are.

      Love & Light,



      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.


        Hi its been a few months now, I went to A & E who sent me home for rest, and had the referral a couple of months later for the neurologist, my symptoms did improve and I could manage to stay upright for increasing amount of times, the neuro explained that scar tissue had sealed the leak site at T7 years ago but due to the car accident it reopened it, she told me that this area will now be prone to reopen and it seems that I briefly seal only to then re leak with anything such as bending, lifting the usual things you do on a normal daily basis, I was improving so much and was still being very careful but in the last few days now back to square one, I must have aggravated it, surgery is not an option as the vascular malformation all around my spine makes any surgery extremely complex and is very risky. Back to lying on sofa all day. This is such a frustrating and soul destroying condition.

        Thank you for all the kind comments, sorry it took me so long to respond. Xx


          So sorry you've had this setback. I hope you're hanging in there and taking one day at a time. Sorry I can't offer any sage advice other than to hope you can do a few things while lying on your back all day. Look at an iPad, maybe, or watch TV? Listen to audio books?
          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.