A constant headache began after I had had a transpenoidal pituitary surgery to remove a Rathke's Cleft cyst in Jan 2006. The headache is over my eyebrows and forehead. This is being caused by a neuralgia of cranial nerve branches.
I am also panhypopituitary so I have Adrenal insufficiency, Hypothyroidism, Growth Hormone Deficiency, Diabetes Insipidus, Hyperprolactinemia and Hypogonadism. My MRIs show pituitary stalk abnormality, empty sella, and a small remnant from the cyst wall. After my firstt surgery things just weren't right. I felt off. I began to have other body pain, slight tremors and impaired sleep and orthstatic hypotension.
Ends up that I had a CFS leak. It was repaired once in 2008. Then the symptoms came back a year later. Then another leak was confirmed in May 2010. Skull base surgery was done July 1, 2010 to patch leak number 2. After that surgery, I was diagnosed with high intra-cranial pressure which has since resolved. About 18 months ago I started having fluid in my left ear and it was thought that I was leaking again! I went onto bed rest and was able to get rid of that leak on my own.
So at this point, my hormones are good and the headache pain has been dx'd as trigeminal neuropathy early this year. i'm working with a headache specialist in conjunction with a pain center. I had a radio frequency ablation of the Sphenopallatine ganglion that helped in march. Now they are trying to figure out what other nerves are involved. i had another bilateral RFA to the supraoebital nerve and there is talk of more. I am not leaking per an lp last November
Meds are rGH, DDAVP, Hydrocortisone, T3,T4, a minute dose of cabergoline, diazepam, Zolpidem, Cymbalta, Lidocaine, and oxycontin.
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