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04/18/2012 12:48 AM

Diagnosed in India

Posts: 5
New Member

I am an American expat living in India with my husband and two sons. I have been a migraine sufferer most of my life. Two weeks ago, I had a headache that was a bit different. It radiated out of my upper neck/base of head and around to my forehead. During my second ER visit in three days, I was given a CT scan and MRI and diagnosed with a non-functioning macroadenoma.

My hormone levels are steady and I have no vision loss, even though the tumor is resting on my optic nerve. The doctors here say they want to monitor my tumor, but eventually I will need surgery. My headache has not gone away. It is really starting to bring me down.

I plan to get a second opinion from a U.S.-based physician, but just do not know where to start. It seems there are so many pituitary clinics across the U.S. I am not sure how to initiate a conversation with one, with my being on the other side of the world. Any advice you can provide would be great.

My scans have been digitized as have all my medical records/tests from the past two weeks. But, I need to find someone to send them to.

I go back to my local neurologist Friday to see if she will change my headache meds. Crossing my fingers this works!



04/18/2012 07:11 AM
Posts: 74

As you've probably seen in your research, UVA in Virginia is one of the top pituitary centers in the country. If you'd like, I can forward you their contact information and you can send an email to them. They are very quick at responding and can advise you on sending them all of your labwork and scans. They'll get back with you about coming in to see them, if neccessary. UCLA in California and Emory University in Atlanta have great pituitary centers, too. We dealt with Dr. Nelson Oyesiku at Emory and I could give you his contact information as well.

What size is your tumor? Depending on it's size and the fact that it's already resting on your optic nerve, I'm not sure that waiting and watching is the best advice.

04/18/2012 05:57 PM
Posts: 24
New Member

St. John's in Santa Monica, California has an excellent pituitary center. Dr. Kelly, who runs the center has years of experience and is highly regarded in the area of minimally invasive pituitary ademona/tumor removal.

I visited both UCLA and St. John's and talked to the neurosurgeons at each one before I made a decision. Ultimately, I choose St. John's. Please be sure to go with the surgeon you feel most confident in and who has a lot of experience.

04/18/2012 08:01 PM
Posts: 5
New Member

Thank you both for your quick replies. Those centers are already on my short list. Any contact info you can send would be great. I need email addresses, as it is difficult to reach centers by phone with the time difference between the U.S. and India.

I need to find a doctor who is willing to work with me long distance until I can get back to the U.S.

Thanks again!


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