I have a pituitary tumor that grew in 8 months from rostral caudal from 5 mm to 7 mm and from 7.5 mm to 10mm lateral diameter. My last MRI was in May 2012 and I am not having one again until May2013. I have new symptoms of room spinning that started one month ago (woke me up from sleep) and is positional during the day. ENT gave me antibiotic and prednisone which helped somewhat then spinning came back again bad and another antibiotic. I am still having the room spinning and nausea. Also, I started having blurred vision yesterday. I had hormone testing in 2011 that was normal.
I will call and make an appoint with opthalmology to have my eyes checked, but the local neurologist (saw the np) didn't look at the measurments even though i had copies of the reports that my other doctor gave to me and left up to this neuro to decide what to do about it, so I told her i knew the size grew. She only said well the radiologist said no change.
I am worried, how do I know if watch and wait is the right move. No mention of what normal growth is or anything, just radiologist said no change. I'm so frustrated and don't feel well. Any advice is appreciated if anyone has gone thru this. I thought maybe I'd go see a different doctor, but they don't seem too concerned so far.
You don't need a local neurologist - who sadly has not a clue how to treat a pituitary lesion clearly - but a pituitary specialist who can test for what this lesion is and get you to an experienced surgeon and get this removed or controlled either with medications or surgery.
The neurologist is thinking the lesion is small and the doc is correct - but the doc is NOT thinking about the location and the effect hormonally or the possible permanent effects of this lesion. You need the correct doctor. Look in the health pages for more information and resources. It is great that you are getting copies - I advocated getting copies of everything as so many times I was told all was ok when it was clearly not.
I would also get the hormone testing - you probably did not get enough testing.
You can find the doc you need at a larger hospital or university - neuro-endo. Pred is not a good idea for you - it will throw off testing. You need a neuro-optho too - your lesion can be near your optic nerve. Your tumor is now a macro - it has to go.
With regard to the room spinning, this is exactly what happened to me back in Sept. It was so bad I couldn't stand up and had to call an ambulance. They found a pituitary tumor but also my prolactin level was about 850 and this is what caused the spinning (vertigo). I am on bromocriptine now (5 mg a day) and my prolactin level is all the way back to normal. My thought is you should for sure have your prolactin tested if that hasn't already been done. Also, am just telling you my story--I am as uneducated about all this as can possibly be.
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