CSF leak after removal tethered cord and underlying lipoma

  I April 1997, I had to undergo surgery, during which the tethered cord and the underlying lipoma were surgically removed. After a couple of days, I started to leak CSF fluid from the wound in by back. I was suffering from severe headaches and I was feeling absolutely terrible. After a period of +/- 2 weeks, the leak was closed during a second surgery. Now, more than a year later, I am still having a lot of headaches and pain in the neck, which gets worse when I become tired. A new MRI showed that I developed a CSF cyst and that there is some of the spinal fluid left between the muscle tissue in the lower back. I am worried about this on long term : can this cyst and the remains of fluid between the muscle tissue cause any harm ? Do they cause the headaches, the pain in the neck and the severe pain in the lower back ? Can this be treated in any way ? Why do all the symptoms get so much worse, whenever I bend over or lift something ? I would really appreciate an answer, as I am worried about it and as I don't know if it will get worse. Thanks in advance, Gertie
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Dear Gertie,
There are a few ways to treat CSF leaks in this situation.  After a simple lumbar puncture we often use a blood patch to help seal the leak.  Yours is a bit more complicated.  In some other cases we can use a spinal drain to temporarily drain off spinal fluid and allow the leak to seal.  As you have had time for the leak to 'mature' and form scar tissue around the leak into the soft tissues, this may not work either.
The best thing for you may be another surgery.  The cyst could be drained and the CSF leak closed and a spinal drain could be left in all in the same procedure.  This would close the leak and allow it time to heal.
Speak to your surgeon along these lines and see what he thinks.
Good luck.