Pituitary Tumors

[MEDEN1970]

I HAVE BEEN DIAGNOSED WITH A MACRO PITUITARY TUMOR.
I WAS SENT FOR AN MRI AND AN MRA AFTER I HAD COMPLAINED OF SEVERE HEADACHES EVERY DAY FOR 4 MONTHS.
I AM ABOUT TO SEE A NEUROSERGEON TO HAVE HIM CHECK ALL OF MY FINDINGS AND HE WILL LET ME KNOW WHAT HE THINKS.
WHAT CAN I EXPECT? SURGERY MAYBE? AND IF I GET SURGERY, HOW LONG OF A RECOVERY TIME AM I LOOKING AT?

[rumpled]

Depending on the tumor you have, steroids may interfere with testing and or make you far worse than you are - I would ask for other options!

I had a steroid-secreting tumor and to dump in more steroids on top would be horrid.

Pain is rather awful to deal with - I use acupuncture, heating pads, and non-steroid medications.

[MEDEN1970]

I HAD A CONSULT WITH THE SURGEON AND HE IS SENDING ME TO AN OPHTHALMOLOGIST AND A ENDOCRINOLOGIST SO I DO FEEL A BIT BETTER NOW.
I KEEP HAVING THE HEADACHES EVERYDAY AND NOW MY REGULAR DOCTOR CALLED IN A SCRIPT FOR A STEROID PACK FOR INFLAMATION?
I DONT THINK THAT WILL WORK BUT I GUESS I WILL TRY ANYTHING.
I AM ON VICO PROPHEN 750 WHICH HELPS AND ALSO DOLGIC PLUS ITS JUST THAT THEY DONT HELP FOR LONG.
ANY SUGGESTIONS.

[rumpled]

Prolactinomas are treated as a first line with medications - so I find it very strange that they are sending you to a surgeon. Especially with a larger tumor, you would be taking medication FIRST to reduce the size of the tumor and only if the medication does not work (which is less than 10% of cases) or that the side effects are intolerable - that surgery is done.

You also need to see a neuro-opthamolagist (something I just cannot spell) so you can get visual fields and a very thorough eye exam.

You really want to be at a pituitary center.

[MyDaughtersAdvocate]

Sounds like they are saying you have a prolactin-secreting pituitary macro-adenoma.  Find out the size.  Anything greater than 10mm is considered macro.  Get copies of ALL of your test results (MRI, labs, etc.) and keep with you.  

Just a heads up:  Listen to your doctor but also listen to your intuition when it comes to treatment and/or surgery.  Make sure the person you are working with (doctor) has extensive experience with these types of pituitary adenomas / tumors.  Sounds like the tumor may be pressing on your optic nerve - causes headaches.  

best of luck!

[MEDEN1970]

Thank you also for the feed back.
I am just doing what my doctor is telling me thats why I am seeing the sergeon.
I will keep all that you told me in mind because of course I want the best care I can get for my condition.
I do have copies of all my MRI's and plan on keeping copies of everything else as you suggested.
I have my appointment with the neurosurgeon tomorrow 10/12 so I will listen to what he has to say and find out if he is associated with a pituitary center and works with a neuro-endo.
I will keep you posted and thanks again!

[MEDEN1970]

Thank you for the feed back.
I also have all the pain on my left side, headaches bad headaches, left eys waters alot, vision is blurry like if i need glasses so its a little hard at work as I sit at a desk on the computer all day.
I was told at first I had blood near my pituitary gland so thats why the pituitary MRI and the MRA to make sure there was no anurism.
Now they say I have a macro tumor and my prolactin level is up.
Im a bit new at this and thats why im trying to get all the feed back I can.
Thanks for the help.

[rumpled]

I would say to cancel the appointment with the neurosurgeon unless the surgeon is associated with a pituitary center and works with a neuro-endo. You need to go to a pituitary center and you need to be seen first by a neuro-endocrinologist. The endo can determine some very important things such as the type of tumor. You need to do that as some tumors can be treated with medical intervention instead of surgery. So you have to know the type of tumor.

You also need to have a very experienced pituitary surgeon not just any general neuro-surgeon do the surgery especially with the larger tumor when the risk of stroke and loss of eyesight can be greater - it depends on the location of the tumor.

You can have good outcome but you need a very very good set of doctors. Recovery depends on the tumor - on the treatment. Get copies of everything - now starting with the report and MRI so you have details.

[wcdirish]

Hello,Menden 1970
           I had similar symptoms as u have described along with fatigue, nausea vomiting and vision loss in my left eye.I ignored all of this for about 5-6 months because i was scared what the he doctor would say and then i went to see the doctors. I was diagnose with pituitary brain tumor and i had a blood clot on my optic nerve.  I had successful surgery in Boston on july 10,2002.      My recovery time was, well i was out of work for 3 months and i got so bored i had to return.It took a while to start to fell better because the doctor said that i had the tumor for about 12 years.All is better now just have to take dostinex once a week.Please write back with any questions and good luck.