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Profile picture for catherinemneubauer @catherinemneubauer

36 years ago I had terrible dizziness and pressure in my head. I lived in CA and had an MRI and was told I had a pituitary tumor. Neurosurgeon did a biopsy, no cancer. Tumor continues to expand. Three doctors didn’t know what was wrong. Hormones were normal. Was finally approved for treatment at UCLA in Los Angeles. Removed 90% of my pituitary gland, not for a tumor, but because it looked very abnormal. Both times after surgery, I was inpatient for 8 days. Treated really well. Started on replacement hormones and did ok for many years. I had lots of joint and muscle pain and was told it was from the replacement meds. I get dehydrated really easily because of diabetes insipidus. I have been having ear pain, facial pain, eye pain and sharp, stabbing pain and pressure all around my head, since August, last year. I now live in MN to be near my granddaughters. My doctors have different opinions on what is or isn’t happening. One said that I don’t have a pituitary gland, but a small tumor that is not causing my problems. Another doctor said he agreed with the first doctor and said I had a gland, but it is not working and I just needed my meds adjusted. I have lived 33 years without a pituitary gland and am now experiencing symptoms that is similar to when I had my surgeries in CA. I am so frustrated with the health care system and insurance companies

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Replies to "36 years ago I had terrible dizziness and pressure in my head. I lived in CA..."

@catherinemneubauer, searching for answers is hard, especially when doctors don't have the answer readily at hand either. Since moving to MN, are you seeing neuro specialists at Mayo Clinic? What is the next step for you?