I am having a problem getting doctors to understand that my pain is real. Well only some. My situation is very complex. I have 14 brain abnormalitites, disorders, and disease process. One of them is Adult Onset Obstructive Hydrocephalus. I suffered a seizure black out spell mid 2002 and my life was turned upside down. I began to have horrible head pains, aches, and symptoms every day. Prior to, I rarely remember even taking tylenol for headaches. Many of the things found as abnormal are considered to be birth defects that laid low until this spell. I do have a poorly defined cerebral aqueduct (aqueductual stenosis) and I'm missing the septium pellucidum and agensis of the corpus callosum. I believe my aqueduct possibly collapsed that night or became blocked causing the ICP and hydrocephalus. It took them close to 2 years to figure out all the rare findings and repeated a spinal tap done early on which showed 2x the normal pressure. I was shunted in the right area of my skull in to my laterial ventricles. Initally, I had great improvement. About 4 months later, the symptoms all returned but my shunt was working fine and still is. I also have Chiari malformation, empty sella syndrome, psuedotumor cerebri and more. I am thinking it is one of these other issues causing similar symptoms.
What I get as a response from DRS is that I have a working VP Shunt so I should not be complaining of headaches. It seems simple to me to figure out there is a host of other abnormalities that are rare and have little known information about. How can I explain to these DRS that my pain is real? How can I get them to understand that narcotics due work best for me? I have tried Neurontin, Topamax and other things that had horrible side effects...like leaving me feeling like a zombie with daily rebound headaches.
I am scared. Any suggestions? My biggest worry is that I will end up turning to the streets and I DONT WANT TO DO THAT, but I DONT WANT TO LIVE IN PAIN!
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