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Heide's Story

Diagnosed with pit tumor and was stable on dostinex for a few years until April 2001 when I developed diplopia and then had to have pit tumor removal.

To make a long story short, started having awful headaches following the surgery (transphenoidal). Unfortunately original surgeon had left the country, so kept going back to different neurosurgeons at Tulane. All kept telling me I was having migraines and they would prescribe pain pills.

About a year later ended up with the pediatric neurosurgeon and he had them re-evaluate my original path slides from pit mass removal. It was not a tumor, but lymphocytic hypophysitis. The inflammation caused my internal carotid arteries to occlude, hence the debilitating headaches etc.

Waas lifeflighted to Phoenix AZ where Dr. Spetzler did bilateral STA-MCA bypass surgeries to restore blood flow. Felt great for almost a year following that, but then started to develop headaches again. Left side had occluded and right side was a little open. Have been on steroids for about 4 years now and have now developed Cushing's from that. About a month ago had a bad cold/virus and woke up with double vision again. Was admitted to hospital and given dexamethasone IV in massive doses. Noticed vision became darker and shadowy in right eye and found out I now have glaucoma, probably from the dexamethasone. Started on eye drops for it, but I'm pretty sure the damage sustained is permanent. Also still have the double vision and it is driving me nuts! Can't do much of anything these days.

Underwent 12 radiation treatments to pituitary area. No more headaches and am weaning down off my prednisone, but no change in vision unfortunately.

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