- CASE FILE
In the past year I have suffered through my brain leaking, my spine leaking, and my brain acting like I have a brain tumor. I need help.
ABOUT THIS CASE FILE
The past year or so, I have been to over 8 different specialist. I have had a Cranial CSF leak. Mine was spontaneous, which is extremely rare. Yes, I had cerebral fluid pouring out of my nose. Anytime I had my head slightly tilted downward, and every night when I slept. After months of that, I finally met with a Skull Based surgeon who fixed my leak. Over a week after the surgery, I ended up with a spinal leak. Now, my spine was leaking and my symptoms were extremely dibilatating. I then received a bloodpatch to fix my leak. This caused me to have Intercranial Hypertension.
With my IH, my brain thinks I have a brain tumor. I have all the symptoms of a brain tumor, except there is no tumor to get rid of and cure my pressure.
I tried medicine for my symptoms, including Diamox, which helps eliminate the extra fluid my brain is creating. Unfortunately, Diamox caused me kidney stones and metabolic acidosis. My neurologist sent me to a Neurosurgeon and I ended up getting a shunt put into my brain to help drain the fluid. My first shunt broke and I had to have another surgery.
Now presently, I have had my shunt setting changed numerous times, trying to get the right setting. It has helped, bit I am still in pain daily.
I have now had 3 brain surgeries in the last year, and my day to day life is worse. I have been on medical leave for months now. I have head pain, migraines, occipital neuralgia, nerve pain, tinnitus, dizziness, nausea, palpations, brain fog, memory loss, vertigo, blurry vision, visual snow, photophobia, phonophobia, and sinus issues.
If they could find the cause of my leaks, it may help with my treatment and also prevent new leaks. I have no known trauma, and so far have not been diagnosed with a connective tissue disease or autoimmune disorder, which are mostly the cause of leaks.
If only they could find a treatment for my IH that worked, as there's no cure for IH. I have been on and take several different medications that barely seem to help.