08-24-2009, 02:10 AM
I was 29 yrs old when I was diagnosed with Chairi Malformation. I had the decompression surgery for this on July 9th 2008, to relieve chronic headaches, blurred vision, loss of hearing in left ear, and mild blackouts. Surgery was successful and I was recovering faster than expected, when on Aug. 30th 2008, I became extremely ill and was rushed back to the hospital with to diagnoses, (pseudo tumor cerebra, and spinal meningitis). None of my doctors could confirm either condition, and due to the large amount of CSF fluid building around my brain, my neurosurgeon placed a Lumbar shunt in my back to relieve the pressure. He stated he did not believe I had developed hydrocephalus due to my ventricles,(fluid chambers), not being enlarged. It took me a long time to recover from this surgery due to the increased pressure my brain put on my optic nerve, causing my eyes to be crossed so bad they did not expect them to return to normal and leaving me with extreme double vision. A few months later my normal vision was restored, but the lumbar shunt only drained while I was standing, making it impossible to sleep. This led to the removal of the lumbar shunt and insertion of a ventriculoperitoneal shunt on Oct.1st 2008. This seemed to be the answer, and was working fine except for the intense lower abdominal/pelvic pain. I woke up in the recovery room with this pain and was told it would go away in time. Well like many of yawls posts Iíve read, this is where I started to feel like I was crazy! About a hundred tests, CT scans, MRI scans, ER trips with multiple DRís later, I was told by my neurosurgeon that he could no longer help me and I was going to have to live with the pain. This led my wife to find me a new neurosurgeon, and on Feb.4th 2009 I had a shunt revision to place the tubing in another location in my abdomen, with no improvement. This led to yet another shunt revision on March 4th 2009, this time changing it to a ventriculopleural shunt. It was amazing that as soon as I woke up from this surgery I had no more abdominal pain. Since then I have had off and on sharp stabbing pains in my right side chest cavity, and now I am having intense headaches/migraines behind my right eye, and what I believe is directly under the shunt pump in my head; also causing slight double vision when migraine is at its worst, and severe sleep ad mea! My Neurologist has only tried to treat these symptoms with sleep aids, and pain pills, which do not really help much, and time for my body to adjust to the shunt. I guess my question to you Ďall is what do I do now? Am I supposed to live on pain pills and sleep aids for the rest of my life? How much time does my body need, and if it is adjusting why are my symptoms getting worse? I am a Police Officer and am finding it extremely hard to do my job with these symptoms! I have not contacted my neurosurgeon since last shunt revision for fear of having to have another surgery, and possible losing my job! I would greatly appreciate any help or advice in this for I believe Iím at a standstill! Thanks in Advance!!