After I was diagnosed with a brain tumor I needed to find a specialist. My reasons for aversion to the doctor’s office were only affirmed during this entire process. You know when you go to a place and you immediately get a bad vibe? That was the feeling I had when I went to my first endocrinologist. When I was called up I went back with my husband. The doctor pointed out my breakouts — thanks girl, so glad you noticed. At one point she set her laptop down and there was a browser tab open with tacky gold jewelry on the page. Professionalism and bedside manner 3/10.
Anyway, the visit was brief, very brief. She basically told me that this #braintumor was normal — what is normal, huh? — and that a lot of people have it and basically what we can do is monitor it over time. Oh, and here, take these meds that you know nothing about and come back in a year and we can talk about it then. I didn't take the script. I felt like I didn't have enough information to just start taking a medication.
It 's glaringly obvious, this was not a good experience for me. I left without the information I wanted. At that time I knew nothing about this. I had never heard of a #prolactinoma or pituitary tumor until a week before. I needed someone to teach me and walk me through what my life is going to look like now. That didn’t happen here.
I was defeated. I didn’t know where to go until a fast-friend of mine recommended the Mayo Clinic. I requested to be a patient online, uploaded my results, paperwork, and medical history. Not too long after I hit submit I was on the phone scheduling my first series of appointments. They set me up with three different doctors in three different departments — oncology, neurosurgery, and endocrinology. The team of three doctors would meet with me individually and later share and compare their notes. Each of the doctors talked with me and answered all of my questions about the tumor. We even looked at my brain scan film together. The oncologist explained that the tumor is non-cancerous. During the neurosurgery consultation I was reassured that I would not need surgery and that monitoring the tumor over time will allow doctors to measure its growth. And the endocrinologist talked with me about how it affects my hormones. I left feeling educated, with a clearer picture of what my future might look like with a pituitary adenoma.
I’m still searching for an endocrinologist. After my consult I was set up with an endocrinologist at Mayo. She was kind and helpful, but I felt like she was pushing medication. At the time I wasn’t convinced that the medication would be beneficial, rather I thought it would do more harm than good. I asked to be paired with a different doctor. For my next visit I was. But now I am meeting a third #endocrinologist for my next visit. I don’t mind, I just wish I could have a little more consistency. Each time I go in I have to give my full history to this new doctor, even through they have my file and all of the information about my conditions. While I haven’t found a single specialist, I feel really good about the quality of care I’m receiving at Mayo. And that’s what matters.
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