Long term effects of spinal fluid leak

[girlieon4north]

Hx- Five back/neck surgeries. All discectomy w fusion. Last surgery, in 2003, was at C4-C5. It resulted in a tear in the dura and subsequently a CSF leak. Severe enough that a lumbar drain was inserted for 6 days to drain the fluid. It was removed and within 24 hrs. I had swelling again at the incision site at the front of my neck so another lumbar drain was inserted. This remained for another 7 days. While it was in I was draining up to 250 ml p/day. I was given a two day pass to come home for a visit because of SARS I was not allowed to have visitors. I was in hospital for a total of 6 weeks. The dressing was changed before going home and the nurse that did the change did not use sterile technique and a couple of days after returning to hospital I had a severe infection and was put on IV antibiotics. As recent as this summer I had a MRI and it shows that I still have small amounts of CSF that are pooling in my upper back and neck area. I have a headache every day and have also been having problems with my right arm having major pins and needles and also pain. The pin and needles are mostly at the interior part of my arm and my thumb and index finger. The pain is at times very severe and also gives a burning sensation. The fusion itself at the site appears to be intact.My concern is that the problem is now with the next vertebrae down, C5-C6. Also when I had this particular surgery in 2003 I had a problem when I was attempting to fall asleep my legs would jump, either one or both. I would seem to happen when I was at my most relaxed state. This went away without any further notice but it is back now and has been for at least 6 months.  Is there any long term effects that this type of leak could result in? Obviously the headaches are getting the better of me and have been off work for the last 6 weeks d/t the pain and decreased mobility in my neck as well as the increased severity of the headaches.Any advise would be appreciated.

[Billsdaughter]

Thank you for your reply and information. My father's doctor said if they could locate the leak they would definitely fix it, each situation is different I'm sure but searches on this say that also. Maybe yours is slowly resolving? that seems a long time to have those symptoms. He has some headache, not alot, more ear discomfort but neck discomfort too and that may be true about a bone spur causing a tear, wouldn't they see that on the scan?  his shows collection of fluid in the head. These can be from a fracture in the base of the skull which may be hard to see and in his case may have healed by now. I see the test cisternogram mentioned, maybe that would help him figure it out. I wonder if they have mentioned a blood patch to you? I see that as a repair for leaks when it happened after lumbar puncture. Maybe they worry they may make your problems worse by going back in? do they say it will go away? do you have any nasal or ear drainage of csf? could the jumpy legs be restless leg syndrome? have you gotten other opinions? your symptoms are affecting your quality of life and the headaches sound worsening.

[girlieon4north]

thanks for your support! My tear happened during surgery but it was because of the arthritis in my neck. Since arthritis creates calcified boney nodes it was this that caused the tear during surgery. It may be that your father may have, and likely does have, arthritis as well and the fall could have resulted in a spontaneous tear of the dura to cause the leak he is experiencing now. Does he experience headaches on a regular basis as well? My doctors have not made any plans to do anything about the leak at this time. They are just treating my symptoms, the neck and arm pain with an increase in my meds which includes Methadone 200 mg daily and Lycria 300 mg daily.  

[Billsdaughter]

Sorry to hear of all this trouble you are having, that's alot of surgery! I have read that it is important to repair these leaks. There can be risks for infection and your symptoms sound pretty bad as well. What is your doctor's plan?
My father has a spontaneous csf leak, can't locate where it's coming from. He did have a fall 6 months ago, plans to see another doctor. All they have done is put in an ear tube to drain fluid as the eardrum was bulging and painful.  Good luck to you.