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headaches and Pituitary Tumor 24F

Hello, about a month ago I posted a question in regards to Fibromyalgia. After many tests - i was finally told on Jan31 that a pituitary tumor was found on my MRI scans. I saw a neurosurgeon yesterday and he apparently was unable to view my pituitary gland due the small size of the MRI films. I now am having to undergo ANOTHER MRI (my third) focused on my pituitary gland and also am going to get my hormone labs sent to the MAYO clinic. On my paperwork he did not write "tumor" but rather "enlarged pituitary". I am confused as to why one doctor would say tumor and the other would not. I have become extremely frustrated and realize that some people undergo this for months and/or years. The symptoms I have are numerous. From my hair falling out to decrease libido to constant dizzy/fain spells. I have also noted once that I had milk leaking from my breast and missed menstrual cycles, causing me to think i was pregnant and after 3 tests found out i was not. I initially had my MRI to look for signs of Multiple Sclerosis and was told this was an "accidental finding" and that my intense THROBBING headaches are more than likely non-related to this issue. I guess my question is  what am I to expect? My neurosurgeon is well-known in Alabama, but i also saw that there is a pituitary center at Vanderbilty in Nashville - any views on this? Any helpful tips or understandings would be great. I am only 24 and have a 2 year old son. I have become so weak and dizzy that it is difficult at times for me to carry him. THe headaches are intense and happen daily. Please help!
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Avatar universal
Hi.  About 8 years ago I went to the Pituitary Center at Vanderbilt University in Nashville, TN. They do deal in pituitary problems and are very good.   I have neurocardiogenic syncope which means my neurologic system when triggered will cause my cardio system to shut down and I will pass out quickly.  I went to Vanderbilt to 2 different centers at 2 different times and was checked out for both metabolic problems, pituitary problems, and the neurologic problems.  They ruled out other issues and I know my triggers and avoid them.  They are things like extreme fatigue, heat, fever, etc.

I would recommend this center if you think about going to a specialty center.  We went to the area and stayed in a hotel for a few days.  They were very nice, ran many, many tests and very quickly were able to give me feedback.  They then tell you if they feel more should be done by your doctors where you live.  I lived 5 hours away in TN and didn't have anything like their facility nearby so they were a godsend to me at that time when we didn't know if I had something really, really bad wrong with me.

Good luck.

Avatar universal
I totally understand where you're coming from.  I was diagnosed as to having an enlarged pituitary gland because I had the same exact symptons you talk of.  The only difference is that I went for 3 MRIs: 2 didn't take and the 3rd one I couldn't even go through because I'm extremely claustrophobic and they put something so tight on myentire head, that I freaked out and couldn't go on.  I'll be honest, I have yet to go back to get an MRI (even though I have found a facility that do give open MRIs{NOTHING OVER MY Head-but like a ring going over the entire head, if ya know what I mean}!) and that's because I no longer have medical insurance (I've recently lost my job).

The only answer that I have is to read up on it.  Look up Enlarged Pituitary Gland and it's symptoms and solutions to help shrink it's size and/or treatment.  My then doctor told me that it sometimes has to do with unhealthy eating habits (I use to eat 2-3 meals a day and/or binge eat-not healthy; sometimes I had no appetite but should've pushed myself to eat something), nonactive lifestyle (I rarely got physical but power walked not as much as I should've), STRESS (I had and still am trying to deal with and eliminate stress-It's so hard!).  I read that it can also be hereditary (I might have to read that one again, though.  Forgive if I'm incorrect).  If you need anymore help(which I need as well), let me know.  If you need info on surgery, it's not as bad as some say.  If you can use medication to decrease the size, there is a way for them to go through your nose to eliminate it.  

Just to let you know, I'm a bit scared, too.  But, don't worry yourself so much because there's a lot that can be done to help, you just have to have a community along side with ya and search for more information.  And, like I said before, if you need help, let me know and I'll try to do my best.
327385 tn?1378364331
i understand what you are going threw.i had a pituitary tumor.i had the same symptoms you are having.except my periods were non stop.my breast leaked to.nero said it was prolaction realeasing tumor from pituitary.i stayed so tired and dizzy all the time.i got headaches to EVERY DAY.nero said it was from pressure from tumor.bright light and loud noise would make my head hurt.nero wanted to wait &see if it was going to grow .went to a pituitary endo.he tested me for hypopituitary & see if my thyroid was working good.had about 4 mri  a year, for 2 and a half yrs.it got in my optic nerve and had a crainotmy almost 2yrs ago.have no vision loss.i was scared to i have 3 kids at home.ask all questions you can think of. ask to see a headache specalist for your headaches.im sorry if it seems im talking all about me but thats every thing i went threw with my tumor.you can beat this im tumor free almost 2yrs now.i wish you the best.
Avatar universal
Thanks for the responses!! To answer a few questions or statements in regards to above, i will try my best! i assumed that ppl didn't want to read my whole life story; therefore, i tried to spare some details =D I was wrong! but this is good. it helps to have people understand what i am going through!

i lived in Nashville for 7 years, actually attending college on the other side of downtown, next to Vandy. I know Vandy's reputation and know a few ppl who work there. I actually never knew they had a pituitary center until lately, silly me. funny how you overlook things until they become relevant to you! I played college soccer and have played my entire life. I became pregnant with my son a month after college graduation and admit that my body was used to high amounts of activity until then. I try my best to go for streneous walks/workouts involving my son, but i have been so weak/tired the last 6 months that it is almost unbearable... I have also prob been under stress, but feel i have been handling it pretty well. i recently lost a very dear friend very tragically in Oct.
      I have seen my PCP, neurologist, my headache doctor and most recently a neurosurgeon - all of which "diagnosing" me with something different. My headache doctor told me I am suffering from nerve pain in the back of my head and they are watching that for 8 wks, i have to log my headaches every day. I asked him about the throbbing pain and he says that is not a normal case w/ nerve pain. i ask my neurosurgeon and he says headaches are not common w/ this type of situation... My dizzy spells are so bad that any time i bend over and stand up, it takes my breath away. My eyes are blurry and have a hard time at night - especially w/ lights (a year ago i told my eye doc this and i tried out contacts for astigmatism, but there was no change - i never got ann answer to this either). My pain is also in my neck and shoulders (headache dr said this is normal for nerve damage in my specific location - this is all in regards to a previous soccer injury from college)... my hair breaks and falls off in clumps, especially in the shower. Lights do not bother my headaches, but loud noises do. My skin is dry and itchy. My fingers are stiff and i sometimes have a difficult time typing. Twice i have had "tingling in my arms and fingers" - but underwent a nerve test by my neuro and he found nothing abnormal (hence, his checking for MS). My libido is almost non-existent and i'm only 24! I just feel like no one is listening to me. Any time i mentioned any of the above over the last 2 years, ppl always said it was bc i just had a baby and my body is going thru changes. Four times in the last 4 months i have been out and about and became so faint and dizzy i felt as though i was going to pass out in the middle of the store. I feel like i'm not getting straight answers from my doctors. my blood work is being sent to the MAYO clinic, but only bc i requested it. I really just feel lost at this point. i have researched and find myself doing so constantly at work. I'm trying to stay ahead of the game, all the while i'm having to take Lortabs to make it through the day. Not to mention that I feel I sound like an addict when i call my dr to ask for any pain meds.

like i said before, thanks for your tips and insight. i will be in touch. if you have any other tips - questions to ask - names of doctors...ANYTHING i'm open for it all. Thanks again and GOD BLESS
Avatar universal
Hi PinkPatty... do you have any recommendations for a doctor at Vanderbilt? I've done researched and saw there was a Dr.George Allen there with a good reputation. I'm just trying to ask around. Thanks again for your inspiring words.
Avatar universal

I went to see Dr. Lewis Blevins at Vanderbilt lewis.***@**** .  I also saw Dr. Biaggioni about the fainting which was something different.  I get things which are different from other peoples, like I have secondary hypothyroidism, the neurocardiogenic syncope, a pineal cyst (which could be causing some of my headaches), etc.  So the doctors say I am particularly hard to diagnose.

The thing about Vanderbilt is that they have a team of doctors who can go over all of your prior tests and try to put together a picture of what's going on, do more tests, and follow up further.  I had emailed back and forth with Dr. Blevins about tests and results to see what he recommended.  If they think you have more than one thing going on, they can handle it.

Good luck.  I hope these doctors are still there but if not, I'm sure their replacements are good also.  I went to their website and found the highest ranked, most experienced doctor I could to make the appointment with.  They will usually have younger doctors start out the testing and then the older doctor doesn't come to see you until they've gotten a bit of testing done.  They try to cover all the bases.

I had lots of tests done and was very nervous but nothing they did hurt and they put me at ease.  I felt much better afterwards that we had ruled out all the life threatening options I had been worried about.  I think you'll feel better after being thoroughly checked, it's a lot easier than seeing numerous doctors for a long period of time and having them each look at your situation independently.

It also didn't cost us any more through our insurance than it did going for the tests with the individual doctors.  It was actually a lot easier and I felt we covered all the bases a lot faster.

I wish you a lot of luck, in the future, I'd go to a specialty center in a heartbeat.

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