Journal entry by Jackie Brown —
Jackie’s Medical Emergency:
This took me a minute to write as I usually inform everyone about my family’s health emergencies, however, this one is for me.
In August 2023, I was diagnosed with a 6.5mm Pituitary Adenoma (tumor) which caused my pituitary gland to swell three times its normal size (usually the size of a single pea) which is not including the actual size of the tumor of an additional 6.5mm (a little bigger than the top of the eraser of a #2 pencil). After numerous hospital visits/stays and seeing specialists, my pituitary tumor decided to move unexpectedly.
This shocked multiple specialists, and the search was on to find out where it went. After further scans they were able to find swelling on my pituitary stalk (in between my pituitary gland and hypothalamus gland). Due to this occurrence being so rare my healthcare was transferred over to the U of M.
After a long wait of ever-changing symptoms and procedures (e.g., lumbar puncture, multiple scans, lab work, not being able to drive, etc.), I finally met with an Associate Professor in Endocrinology at the U of M today. She believes that the pituitary gland swelling is either the original tumor or inflammation (possibly intracranial hypertension). Due to this we are waiting for tumor marker lab results.
I will be getting a high-end specialty MRI in March with the U of M Research team and then seeing a specialty Neurosurgeon to review the results. I am also continuing to see other members of my care team (e.g., Optha-Neurologist, ENT, etc.) to try to lessen my never-ending symptoms until a more in-depth diagnosis can be determined and proper treatment can begin.
Since this is so rare has anyone experienced symptoms or been diagnosed with a pituitary tumor like this situation before? As my situation is acute and not chronic my care team is deep diving into possibilities of origin.
Please keep me and Jody in your thoughts and prayers as the family ventures down this new road. We will keep everyone informed when we have further updates.
This took me a minute to write as I usually inform everyone about my family’s health emergencies, however, this one is for me.
In August 2023, I was diagnosed with a 6.5mm Pituitary Adenoma (tumor) which caused my pituitary gland to swell three times its normal size (usually the size of a single pea) which is not including the actual size of the tumor of an additional 6.5mm (a little bigger than the top of the eraser of a #2 pencil). After numerous hospital visits/stays and seeing specialists, my pituitary tumor decided to move unexpectedly.
This shocked multiple specialists, and the search was on to find out where it went. After further scans they were able to find swelling on my pituitary stalk (in between my pituitary gland and hypothalamus gland). Due to this occurrence being so rare my healthcare was transferred over to the U of M.
After a long wait of ever-changing symptoms and procedures (e.g., lumbar puncture, multiple scans, lab work, not being able to drive, etc.), I finally met with an Associate Professor in Endocrinology at the U of M today. She believes that the pituitary gland swelling is either the original tumor or inflammation (possibly intracranial hypertension). Due to this we are waiting for tumor marker lab results.
I will be getting a high-end specialty MRI in March with the U of M Research team and then seeing a specialty Neurosurgeon to review the results. I am also continuing to see other members of my care team (e.g., Optha-Neurologist, ENT, etc.) to try to lessen my never-ending symptoms until a more in-depth diagnosis can be determined and proper treatment can begin.
Since this is so rare has anyone experienced symptoms or been diagnosed with a pituitary tumor like this situation before? As my situation is acute and not chronic my care team is deep diving into possibilities of origin.
Please keep me and Jody in your thoughts and prayers as the family ventures down this new road. We will keep everyone informed when we have further updates.
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