Wow that’s scary! I’m glad you are doing better (hopefully). What you went through is no joke. Do you happen to have any auto immune disorders? I have a friend with RA and she went through the same thing years ago.
I have a pituitary adenoma (benign tumor) that has been growing for the past 4 (going on 5 in May). It’s been growing a few mm each year (I have to get MRIs every 6 months). It’s highly possible I could have had it since puberty but I didn’t start to experience migraines until I had a seizure in 2016 and it was found on my MRI when I kept getting migraines. I have had no hormone involvement all this time until this summer (now adrenal insufficiency - low cortisol) so I was finally bumped up to a biopsy back in September as the tumor also started to touch my optic chiasm and started experiencing blurred vision. The neurosurgeon was able to do the biopsy and slice a little more off of it of the part touching the chiasm so my vision has improved. However my latest MRI last week has shown it’s still growing. However my team of docs still can’t figure out if it’s auto immune (like inflammation vs tumor tissue) despite the pathology reports saying it’s a benign tumor. Though my neurosurgeon said it didnt necessarily have clearly defined borders so if I were to get it removed in the future, he would most likely have to remove part of the gland itself and that would lead to more issues (hormone issues). So I’m kinda stuck now...
Daily headaches still persist and migraines are still there. I take topamax daily and use nurtec for when I feel a migraine come on. Yet I don’t feel comfortable knowing it’s still growing inside me and still can cause further abnormal hormone issues in the future. My thyroid is borderline hypothyroid now.
I’m taking hydrocortisone to help with the low cortisol but it’s been so difficult not to take just some Tylenol or ibuprofen daily or frequently during the week. I know medication overuse can make things worse but I’m miserable regardless.
