Pituitary Adenomas Support Group

I recently found out by mistake that I have a 1.7x1.6 x 1.2 pituitary tumor. I have been to sooo many Drs., including cardiologist (blood pressure spiked to 185/115. All of my blood and urine test are normal,however, the MRI stated it pressing on the optic chiasm. I did see a neurologist, and endocrinologist and go for my second appointment with the neurologist on Wednesday. He would not give me an opinion until I saw my opthamologist for a field vision test which came out 20/20. I will find out what he recommends this week. My first instinct was to have it removed as soon as possible, but now I am getting second thoughts, as I am realizing this is not like removing your tonsils. As suggested by my friends, I am hoping to get an appointment with a well-known neurosurgeon who specializes in Pituitary tumors. I am really nervous and this is certainly putting a damper on the Holidays. I get these faigue headaches and just don't feel right. I am not sure if it's real or just a form of depression. I now have to take a salvia swap test for three weeks.

Hello - I am glad you joined our group but sorry to hear of your news. This is a difficult situation you are in and it can be very stressful, but be assured that you will come out of this ok. I had a 5 cm pit tumor diagnosed this past August 20 and had it removed and am doing very well. I was back at work on day 13 after surgery. Not everyone is as fortunate as my outcome appears to be so far but many many are.

If it is pressing on optic chiasm then you need to make it stop doing that! You mentioned that your blood tests are normal - did they run prolactin in your tests? I would think if the endo was involved they certainly would have. If it is a prolactinoma, meds may be able to help you (bromocriptine or cabergoline) and you may never see the inside of an OR for this. But if it is NOT a prolactin secretor, you may need to have it removed to protect your vision.

My advice is get a GREAT endocrinologist that has pit tumor experience and let them steer you through the chemistry side of this. If it is truly non-functioning then the neuro will be your best guide through this adventure.

Keep us posted on how your next appointments go.

Ed

Post edited by: escinkc, at: 11/27/2010 02:58 PM

Thanks so much for responding to my email........I respect you so much for encouraging all of us that are going though this difficult time in our life. You have been there and still take the time to respond to our concerns and fears. Thank u so much. I am fortunate enough to live n NY Metro area and am hoping to get an appointment with an specialist. Will let you know if it works out on Monday. Thanks so much for your encouragement

Sandy

Post edited by: Chantelle, at: 11/21/2011 08:01 AM

Hello,

i had my surgery on 9/8. It seems like a bad dream now. But, there is light at the end of the tunnel. I think this forum is helpful. But, the most help is time and your doctors. My advise is to find a doc who does a number of these procedures. Mine was at Emory an I think he did a pretty good job. Good luck and keep us posted about your decisions.

Don

Thanks Don,

Getting a little nervous now....I am confident with my Dr. But also realize there may b more to deal with than I expected.

Sandy

Hi,

like Don said, focus on the light at the end of the tunnel, . I had surgery this year in June which went really well, I was lucky to be able to have time off work to recover which is different for eveyone... best of luck

Thanks Cavb, I appreciate everyone's support. Just a little scary right before the Holidays. Have tried to Pretend it's just another Xmas, and got the tree up, but not Into doing much more. Will keep the group informed!

Sandy

HI,

Sounds like you and I are in the same boat this hoilday season. I too am so worried about what all of this means and how to cope with it. You just never know what kind of curve ball gets thrown your way. I'll be waiting and watching with you, so hang in there. I've read a lot of these posts here and am so greatful to find a place to experss my concerns. I especially get a lot of hope from those who have posted their stories of their experience. So with the Christmas spirit, I wish the best for everyone!

Keep us posted.