I am going over a referral my Dr. sent me a copy of. I'm trying to understand a few things. It says, "Diagnosed January 2012....MR showed 5x6x7 mm pituitary tumor. MR scan in August 2012 was stable showing abnormal enhancement surrounding the pituitary left greater than the right, measuring .8 superior-inferior by .8 AP dimension." What is abnormal enhancement and is this suggesting the tumor has grown or am I misunderstanding the measurement from August?
Your doctor is not skilled in treating pituitary lesions/tumors.
An MRI has some use - but only tells the size. Once it was discovered you should have been sent to a neuro-endocrinologist at a pituitary center so that you would have gotten the series of testing to determine the type of tumor. Just knowing *pituitary tumor* is not very useful - you need to know what type of tumor so you know how to treat it. So without that information and a tumor that has grown in 8 months, you still don't have what you need to get treatment.
So, you need to find a larger hospital or university hospital with a pituitary center and take all your records (get copies of everything forever and always) and find a decent doctor. You are going to have to learn so that you know if the doc is good or a dud. Errors can hold you up.
And hopefully you can educate the silly doc that keeps sending you for MRIs and NOT testing or treatment??? What is up with that...
To offer a bit more clarification, I have been treated in the past months with Cabergoline and Bromocriptine, both giving me untolerable side effects, bad headaches, nausea, dizziness and Rhinitis. I have a Prolactinoma. My referral is to Mayo Clinic, I will be seeing both an endo and a neurosurgeon then. It sounds like you are interpreting this referral as saying the tumor has grown as well? I was certain that was the reading but my endo I'm seeing now had said 'not really'. I don't have confidence in him at all at this point and am relieved to be seeing a specialist at Mayo. I am currently not taking any meds and have been off them for about 4 weeks. I feel like I am playing roulette. : (
I just came back from vacation and the beds were like sleeping on tables - so I did not sleep for days... so my brain is not functioning! Uck. I hope after a good nights sleep I am more sane. But .8AP is not 8mm as in .8cm? I usually encounter CM or MM in reports and that was not noted. To me that is an increase in size - and since pit tumors tend to be stable or slow growers... but imaging is not exact on sizing. Was it a dynamic pituitary MRI?
So you have a prolactinoma. Abnormal enhancement is simply that *something is there* - so something is enhancing - it is darker or lighter on the scan.
It can take a while for the medication side effects to calm down - so if you only gave one medication a short time, you did not have enough time. If you took both at the same time (not sure, hope not) that would have been rough... did you try altering how you took it - as in tapering up dosages, eating with it, time of day changes etc?
Thanks for getting back to me. I hope you are getting some better sleep on your own comfy bed. : )
As far the .8 AP....well, it's all foreign to me. That's just what it said? I don't know about the type of MRI. I know that they used contrast, if that helps.
As far as medication, I tried the Cabergoline first on 1/2 pill 1x/week. No side effects but my prolactin levels would not come down. When I started this in January, they were at 79. My endo then increased to 1/2 pill 2x/week. My levels came down over the course of a couple months to 29 but the headaches were relentless. We decided to try the Bromocriptine. Same thing, 1/2 pill 1x/day was ok but...my prolactin climed to 108. I then started on 1/2 pill 2x/day and I had horrible dizziness and Rhinitis. I am a business owner/appraiser and do alot of driving and office work. I just couldn't function. In the end, even taking the meds 2x/day, it wasn't bringing down the prolactin. I then started back on Cabergoline thinking I could just tolerate the headaches but even starting on a small dose, the headaches came back strong. I really need to feel well again. A few short years ago, I was running 1/2 marathons. Now, I feel like a darn slug!
Just a little more info, the headaches are what prompted the MRI in August. Also, you don't sound thrilled about Mayo. Concerns? From my research, it seems like a good place to be. ??
The AP and all are dimensions - it just says where the tumor is placed sort of as in how tall - but the other report was easier to me.
Some just don't do well with the meds.
Not every place is good for everyone, but most I know that have gone to a Mayo have not been helped as well as they could have at a pituitary center. They are tops in endocrine according to the magazines. I just don't know pituitary people that have diagnosis help there - but you are already diagnosed and I am pretty sure surgeons are tops. I just hear a lot about other places, not them.
For small tumors these little monsters can wreak havoc!
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