why do they come come back

[MSFEE]

Why do pitiuary tumors come back? Can you live with out your pitiuary gland? I just found out that I have a pitiuary tumor and I'm afraid. I suffer from migrains, black outs, vomiting, nause, lately now my feet and hands are swelling. Please tell me I have nothing to worry about.

Ms. Fee

[crwstar]

I would love to tell you you have nothing to worry about but its not always the truth. How big is your pituitary tumor? I think it has a lot to do with what stage you are in with your pituitary tumor. Is it large and compressing on your optic nerve or are you in a wait and see stage with your doctor. I too have a pituitary tumor albiet it is considered small at about 5 mm. And so I am on the wait and watch plan. Any sense of worry and nervousness about my diagnosis has only subsided with time and much reading. Plus I saw a endocrinologist who specializes in these.  Have you found a good endocrinologist to work with? No matter what the best advice I can give is to find doctors who specialize in the pituitary - it will save you a lot of time and energy. let me know if you have any questions - There are some others on here who have more experience with this then me but I'm willing to listen and help where I can. Also, for some people the size of the tumor doesn't matter - it can  be small and they can be symptomatic.

All the best.

Crwstar

All the best to you.

[crwstar]

Oh and I've heard of people living without their pituitary gland but they have to take meds for the rest of their lives...someone can correct me on that or add if I'm wrong. Why do they come back.....I'll leave that one to the doctors ;-)

[MSFEE]

Thank you!!!! my tumor is 6mm but it cause all kinds of problems dizziness, vomiting and nausea, massive migrains, almost night blindness, I can no longer drive at night I can no longer make out what light belongs where nor see the lines in the road,

Why are they on the wait and see? I read they wont do anything if its under 10 mm but this thing is getting on my nerves! I just want to be me again and no pain.....: ( I have been dealing with these headaches and migrains for 4 months now. I want to be able to function again, I'm on 7 different kinds of pain killers.

[DrNoopurMD]

Hi,

Hope you are feeling better.
The cause is recurrent pituitary tumors are not well understood as yet. Pituitary gland is a small gland in the brain about the size of a pea which makes hormones that are essential for growth and development.
Pituitary tumors can cause nausea, vomiting and headaches. They can also cause hormonal problems like Cushings disease. In this disease there is excessive secretion of cortisol which causes water retention which can result in swelling of hands and feet.
If the pituitary gland is removed one needs hormonal supplements. Luckily hormonal supplements are available for all the hormones.
Hope this makes you feel better.

[crwstar]

I was told that when they are as small as mine at 5mm that surgery can do more harm than good. Doesn't mean that it will but does mean before I have any kind of major surgery that I want as much information as I can and to know that the doctor doing the surgery has done 100's of these surgeries. From most doctors position the size of my tumor is not what's causing all my symptoms. I don't necessarily agree with this position but am cautious with having surgery. Watching for now will give a good indication for how agressive it is or isn't. I've had the veritgo, nausea, headaches for almost a year and interstingly enough it is harder for me to drive at night.

I so understand the desire to be "me" again. When you've got something growing on or around your pituitary it can disrupts any semblance of normalcy.

Also, were you asking about pituitary gland removal because that's what you would like done? If so, please do yourself a huge favor and do plenty of research on the impact ;-) I've read some not so happy people who have had it done (keeping in mind everyone is different). I'm sorry to hear about the amount of pain you are in, I have had some type of a headache for almost a year solid. Sometimes they spike to the unbearable place but I don't have the classic migraine pain - that must be awful. Oh my goodness and 7 different pain meds. It really sounds like you need to be talking to a top star endocrinologist. What kind of doctor are you seeing? There is another site you can go to that is specific to pituitary tumors - I don't post there but they have really good information. Pituitary Network Association is the name. You can read what many many people have experienced with these. I think they even have a section about meds.

All the best,

Crwstar

[MSFEE]

No I dont want my pituitary removed, that to be is not even an option! I'm seeing the head of neureology tomorrow. Whats the differents between neureology and endocrinologist? If I have to see both then I will be seeing both...this is all semi greek to me...lol I'm learning a new language sort speak....lol know what I mean? Its like before I had know idea about any of these medical terms nor what pituitary was or where it was in my body. I didn't even know how important of a gland it was.

I dont want surgery at all if I can help it. I been very blessed finding this site I be okay here.
I well send you a note when I get home from seeing the neureologist tomorrow.

[crwstar]

Lol, it is greek isn't it. Who knew such a small gland could have such a huge impact.

Difference between a endocrinologist and neurologist - That's a good question, one I'm not sure I could do justice to. A endocrinologist is going to look at blood work and see if the tumor is effecting your hormone out-put from your pituitary. Now I just know there is someone else on here that can explain this so much better than me.....hehe I could totally confuse you with my description. Ok, I digressed, and a  neurologist focuses on the nervous system.

They focus on two different functions of the body although they do interact because your symptoms are what brought you to a neurologist. A neurologist was the first specialist I saw and she had no experience with pituitary tumors but still wanted to try and treat me.
Thankfully, I had done enough reading to know that even though benign that I still needed a treatment plan.

I'll look forward to hearing about your visit ;-)

[MSFEE]

Your so truely awesome thank you!!! I really appreciate your kindness support :-)