Thursday, September 11, 2014

Ok So I know you all have been waiting.... Here is the complete update of my saga!

Tuesday 9/9 (AM)

7 years ago I was diagnosed with Chiari Malformation Type 1 (CM1). The good news is right now the herniation is stable but I still have symptoms. But 6 weeks ago I was diagnosed with Idiopathic Intracranial Hypertension (IIH). This is causing my optic nerves to swell and causing me to go blind. I FINALLY had an appointment with the neuro-opthamalogist to figure out our plan since I have both CM1 and IIH. Also this week just happens to be Invisible Illness Awareness Week, and Sept is Chiari Malformation Awareness fitting right....

I am attaching links to some important website regarding my diseases and would love for you to become more informed!

Tuesday 9/9 (PM)

The dr did the same tests as the previous opthamalagist. He said that the blindness wasn't too bad and he changed my rx to a slow release Diamox and the dosage went from 1000mg to 2000 mg. He was really surprised my optic nerves were as swollen as they were with the rx dosage I was taking. He wants me to go ahead and see the neurosurgeon to see what he thinks and see if it is my Chiari causing this. Plus I haven't seen a neurosurgeon in 7 yrs. After I see that dr I go back to this dr for another field test (checks for blind spots) and sees what the neurosurgeon recommends. So really I am back to square one which is waiting with no real answer. Blah!

And such is the vicious circle of our disease!

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