"Gosh, good question, where to start?
Your ruling out pituitary probes might be a good step since yours is sh owing up as enlarged.
I would ask your GP to refer you to a neuro endocrinologist. They are usually affiliated with Pituitary ..."
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About Me: Female, HI, member since Aug 2008
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.
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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. [Less]
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. [Less]
Interests:
CFS leak, Headaches, pituitary, Diabetes insipidus, Thyroid, Hypopituitarism, cortisol, pituitary tumor, Thyroid Disorders, Pain, Chronic Pain, Fibromyalgia, Headache
Best Answers: 11
Jul 08, 2014
"Hiya,
I read your post. My surgery recovery took about 3 months. But the hormone part can take a year, and will require periodic changes for the rest of your life. I also have DI. I hate it!!! At the beginning you have to be very caref..."
Jul 06, 2014
"One thing that comes to mind is growth hormone. I've also gained weight but can lose it VERY slowly if I count calories, for me I lose at 1200 kcal same day...only one beer a day for me, ouch. But I could not lose at all before the growt..."
http://atsvid.uthscsa.edu/mediasite/Viewer/?peid=8756db7905d149199e49d80b60385d1e
This is a great video to watch about pituitary surgery by the best of the best!
A link to Dr. Katznelson speaking about various pituitary topics
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