You need to go to a pituitary center - and see a neuro-endocrinologist. A regular endo does not have the skills to treat pituitary issues (even though some will say they can, 99% cannot), and a neurologist cannot and does not treat pituitary lesions - they are not trained on them and will frequently give you bad information as since the lesions are small, may tell you something wrong like to watch and wait based on size when it is the hormonal activity that is the issue.
So, please go to a pituitary center - found at larger hospitals and universities. It may take a while to find a good doctor. Do research on testing and make sure that testing is done correctly - for instance, if you have a 1pm appt, and they do testing at that time, most of the testing will not be useful for diagnosis!
Headaches are a frequent symptom - but pituitary symptoms can vary a lot - from skin to fatigue to lactation to depression to weight to cholesterol to heart to gyne to gastro - so you may have other symptoms and not realize it. An MRI can only show the lesion - lab testing has to show what type of lesion to some extent and then if necessary, they may treat with meds or remove.
I had a couple myself - it seems really scary and overwhelming at first. While you don't understand the jargon now - you will get the hang on it. Make sure you get copies of everything! There are some links in the health pages that may help you learn and find a doc - look towards the bottom of the page here.
I am going to a pituitary tumor program at a university. I feel good about my decision to go there. I have a few symptoms that I'm hoping will be resolved with treatment, but the headache was the symptom that demanded attention,lol. I get a few twinges now and then through the day but it's no where near as bad as it was. My prolactin was tested and it was normal. What is the difference between a lesion and a tumor? What treatment did you have for your lesions? It's hard to believe that a pea-sized part of my brain is causing so much havoc!
Hi Jenny, this is Angelo from Athens Greece, I just read your post, it remind my case 3 years ago.
It started with headake, then pain in my left aey, It was something terible.
Anyway, I had a serjury for pituitary removal and everithing went fine, may be I was luky, not any madication 3 months after the operation, not any headake since then.
I wish the best for you, are you going to have an operation ?
Check at my name AngeloGR and you can reed all that I had posted.
Feel free to contact me.
Take care
Angelo
Hi Jenny, rumpled gave good advice. I'm going through similar circumstances although I'm having difficulty getting a referral to the university hospital I need. My primary care, neurologist, and regular endocrinologist are treating me like "oh its just a little incidental tumor we found, just don't worry about it. It's pretty common." I'm having a lot of bothersome symptoms, however, so I will not give up. Good luck, Jenny!!
Lesion is just a generic name while a tumor is a tumor - the docs call things lesions until they know the nature (could be a cyst etc).
They cannot just test prolactin - other hormone can be off. I ended up having surgery - but 12 years after my tumors were found!
Yes - these teeny things can be nasty.
SugarrMannolia, I would get my mri films and schedule for a second opinion with a doctor that cares and has experience with this. Rumpled, I really appreciate your advice. I find that my symptoms get worse around the time for my cycle. As if it weren't bad enough :( I wonder if there is any connection between the two. I'm really hoping my issues can be remedied with medication. Removal by endoscopy looks invasive enough to me!
Periods can make things worse! That does happen.
It really depends on the skill of the surgeon whether or not the surgery is all that bad - a good one you can walk out almost the same day, some will release you the same day now. Really the issue is more the hormones than the surgery.