Pituitary Macroadenoma

[TallGirl40]

In December 2008 I was diagnosed with a pituitary macroadenoma. My neurologist decided to take the wait and see what happens treatment plan so I was retested with blood work in Feb. 2009 and another MRI on March 16. Turns out the tumor has grown and now encompasses the pituitary area and is now pressing on the optic chiasm causing me to have a dull pain behind my eyes. My symptoms are: headache on the top of my head, constant dizziness, nausea, vomiting, severe insomnia, irregular periods, experience imbalance while walking and even fell in January and fractured my L4. I'm also fatigued, sometimes I'm irritable, which is unusual for me, I have facial numbing, my right ear rings and clicks (by the way, the initial MRI was done to check for postural vertigo, turns out, my ears are fine). What is the best course of treatment? I believe they said it is a non-functioning tumor. Are all these symptoms the cause of the tumor?

[rumpled]

I just hope you get a great outcome and you find the best of the best as far as doctors!

[TallGirl40]

I left you a Note on your site, but I just wanted to thank you again for all you good information. I really appreciate it and you.

[TallGirl40]

Thank you so much for your concern and information! I will look for an endo dr. tomorrow and I was just searching online and found a pituitary neurosurgeon specialist who is in Colorado!!

[MICFOX]

PS.  pituitary tumour causes high cortisol. High cortisol robs bones of calcium, hence broken bones. Move fast now before your heart goes for a burton too !
Its your life, do not let this doctor make you lose any more health, act urgently.
Mic

[MICFOX]

Same advice as rumpled I'm afraid.
DO NOT WAIT. I had my pituitary NF macroadenoma discovered by an opthalmologist because I was losing my sight fast, once the tumour hit my optic chiasm.
I had been sent away from doctors 30 times in 7 years as a malingerer. If they had treated me sooner, I would not have lost so much of my endocrine system, or have lost so much general health and strength. Also put on too much weight every year that went by.
I nearly lost my sight and my mind and my life.
GET SEEN TO SOON, by an endo team.
Good luck
   Mic from Cambridge UK

[rumpled]

You need to leave the doctor that  you are seeing after getting copies of the meager tests and films and run to a neuro-endocrinologist and neuro-opthomologist and get treatment, proper treatment. Wait and see is not a proper treatment. On what blood and urine testing did he determine that it is non-functioning?

If you have symptoms, odds are it is doing something. Even the size now will cause issues. It is also going to shut down your hormones if action is not taken. You need to find a proper doctor who knows how to treat  your disorder and how to test for it. You may have to travel because, as you have experienced, not everyone knows what they are doing.

The fracture was caused likely by the hormones weakening your bones.

Please seek out a university center that has a pituitary center experienced in treating macro-adenomas. Thanks to the other doctor, you are now much more difficult to treat - you should have been treated at the very first time you were seen. Now that it has effected your eyes, surgery alone now may not be enough to remove the tumor.

Please do no wait any longer but search for competent doctors.