CSF leak and bacterial meningitis

[Nicole__0__0]

  My name is Nicole and I have a 4 1/2 year old daughter who, since July of 1996 has had pneumococcal meningitis 4 times.  After the first infection in July 96, through CT Scans and a Cisternogram, she was diagnosed with a cerebral spinal fluid leak in the left mastoid area.  However, the studies could not pinpoint the exact location of the leak but fluid was clearly evident in the left mastoid.  The decision was made to wait in hopes that the hole would close itself.  
  She contracted meningitis again the following summer in August 1997.  This time it was a resistant strain of pneumococcal bacteria.  In October 1997, a pediatric neurosurgeon inserted an LP shunt in hopes of diverting pressure away from the leak so that it might heal by itself.  CT Scans and a Nuclear Medicine study performed the following December showed no fluid crossing over into the mastoid.  We were all very positive that if not healed, at least we were moving in a positive direction.
  But in July 1998, she caught it again.  Once more it was a resistant strain of the bacteria.  In August, a procedure was performed by a neuro-otologist with extensive experience in CSF leaks which would essentially obliterate the middle ear, mastoid and Eustachian tube on this offensive left side (she already had complete hearing loss in the left ear).  
  Sadly, my lovely daughter has just returned home from the hospital after her fourth bout with these dreadful bacteria.  She was diagnosed on 9/27/98 and this time the bacteria was not a resistant strain and is responding to IV Penicillin treatment.  
  
  She has a healthy immune system and has received the Pneumococcal vacine that is available to cover 23? strains.  
  We have a fine team of doctors who have very few options to offer us at this point besides removing the LP shunt and repeating CT Scans, etc.  
  Miraculously, she is a normal, spunky 4 1/2 year old with above average intelligence and normal hearing in one ear.  
  If you are aware of anyone who has expertise in CSF leaks/meningitis, has heard of a similar case and/or is aware of clinical studies being conducted, we would be most anxious and interested to hear from them.  I can make available all discharge summaries, radiologist reports and films.
  Thank you in advance.......NR
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Here at the Cleveland Clinic in the Pediatric Neurosurgery dept we have
one surgeon who specializes inn CSF circulation problems, shunts,
hydrocephalus etc. We have extensive experience with problems in this area,
however The physicain concerned would need to be consulted regarding
his particular experience with this specific area.
The Neurosurgeon concerned is Dr Mark Luciano MD PhD and his appointments
office number is [phone].
The complexity of this porblemmis somewhat beyond the scope of this forum
so I would suggest that you contact his office and discuss the options
available regarding a second opinion.
I hope this all works out well for you.