My prolactinoma has grown :-/

[Kirsten]

Been diagnosed with a pituitary gland tumor ten years ago. Meanwhile, I know it's an active prolactinoma. Since my prolactin levels were recently rising, I had an MRI yesterday and as it turned out, the tumor has grown. So far, I don't know what that means for me, but I'll see my endocrinologist next month. In case she'll suggest medication, I'll decline it. Not only that the side effects are nausea and vomiting (which would be the ultimate hell for me, being emetophobic), there's also the risk of developing a psychosis, and the very thought of that scares me to death. I think I would rather have it surgically removed, and I hope my doctors agree with me.

Also, I wonder to which degree the prolactinoma is responsible for my various health issues. After all, I'm also dealing with Hashimoto's, and both of it are affecting the entire hormonal system big time. I'm so very very tired of all this.

Off to physio therapy now (yes, my spine is another huge issue!), I'll write more later...

[Karen]

I have a friend who had a pituitary tumor removed when she was a teenager, and was basically fine, just had to take a pill every day afterwards, but was able to lead a normal life. Hopefully they can help you!

[Randi]

Oh Kirsten, I hope you can have it surgically removed. Sending my best wishes!

[Kirsten]

Thank you, Karen and Randi.
Yes, I hope surgery would be an option, but I sure hope I won't have to take those meds for the rest of my life (due to the mentioned side effects)!

And then there are still these plans re. a spine surgery, supporting the spine will metal rods. This is something I also fear. What if I cannot move afterwards? What if I can no longer take pictures because I cannot bend my back?

There are just so too many issues to deal with; honestly, I don't know what I have done to deserve all this. and sometimes I wonder if it's really worth fighting for. For what? I'm all alone in this world, and always will be.

[happylabs]

That doesn't sound like any fun at all. I have a similar thing with the parathyroid and possible removal of that at some point.

Hope it works out for you some way or another.

[Kirsten]

That doesn't sound like any fun at all. I have a similar thing with the parathyroid and possible removal of that at some point.

I'm so sorry to hear this! ( What kind of problem does this condition cause? This hormonal stuff is so tricky!

[Catty1]

Kirsten, if you have the pituitary surgically removed, the pill will just replace the hormone it produces. It's not like the one that you would take to treat the tumour, I don't think.

I think surgery would be what the docs go for if the tumour has grown.

About the pituitary gland:
http://biology.about.com/od/anatomy/...tary-gland.htm
The Pituitary gland is also referred to as the "master gland". It administers the functions of the endocrine system.

The pituitary gland is involved in several functions of the body including:

• Growth Hormone Production
• Production of Hormones That Act on Other Endocrine Glands
• Production of Hormones That Act on the Muscles and the Kidneys
• Endocrine Function Regulation
• Storage of Hormones Produced by the Hypothalamus

There is an interesting little video here about the pituitary gland and what it does. You need Adobe Shockwave Player to view it, which is free from www.adobe.com
http://health.howstuffworks.com/huma...dam-200093.htm

[cassiesmom]

For what? I'm all alone in this world, and always will be.

you have us ((((HUGS))))

[Randi]

Kirsten, the medicine you will get, might be something completely different, hopefully with no side effects. Is it an option to train your muscles? When I had back pain years ago, I went to physiotherapi 3 times a week for 7 weeks and it really helped. Still, I cannot carry too heavy bags without getting back pain.

I hope you will find a reason to keep fighting, I know it's hard in this world, and the politicians don't make it any easier.

I wish you all the best - and big hugs!

[happylabs]

I'm so sorry to hear this! ( What kind of problem does this condition cause? This hormonal stuff is so tricky!

Hyper-parathyroid...I'm hyper a lot of the time, feel faint a lot of the time. I am trying not to read all of the symptoms just yet. They found it by doing bloodwork a couple years ago. I have high calcium in my blood which means the calcium is not getting into my system like it should be.

It stinks to get old. And you know the other part of being 50-something which I won't go into because there are boys here.

[Asiel]

So very sorry you are going through this Kirsten, I would opt for the surgery also, have a cousin who had the same surgery and she's doing great. She only takes a pill to replace the natural hormone.
You can't say you're alone, you have a whole forum cheering for you, must count for a bit of something. And you never know what might be around the corner when you last expect it--

[happylabs]

you have us ((((HUGS))))

Yes...you are not alone! We all may be miles away but we are still here for you. I know it is tough going it alone sometimes. But honestly you are not completely alone.

I don't know if you are religious or believe in God but that is what has gotten me through many bad times and I would never have survived my divorce 10 years ago had it not been for my faith.

If you don't have that type of faith, just believe in life itself. And, you have your kitties! I love my kitties and I talk to them and tell them my problems. I don't know if they understand but they certainly are a comfort.

Hang in there!

[pomtzu]

Kirsten - you'll never be alone - not with all of us nutty PTers around and pulling for you!. So get that thought out of your head - right now girl. And that's an order!

As for the pituitary issue, I can't be of any help there. However, when it comes to spinal issues, I'm a pro - unfortunately. I have rods the entire length of my cervical spine, and also in the lower lumbar spine. Without the cervical ones, I would be paralyzed - or dead - thanks to 2 botched surgeries that actually left me with a broken neck, and it took another top spinal surgeon at a top notch university teaching medical center to put me back in working order. Without him, I might not even be here today. Because of the severity of that, I have lost a lot of sensation in my hands, and my right side is weak and I walk with a slight limp, and my balance isn't what it should be, but all of that is nothing that I can't cope with. If I had the proper surgery to start with, I wouldn't be dealing with any of that. But the lumbar issue was totally different - degenerative disc disease, and vertebrae out of line and pressing on nerves. I was in so much pain that I couldn't walk from one end of my house to the other. After a local back specialist sent me to physical therapy, and when that didn't help, referred me to a pain management specialist, I'd had enough. I contacted the doc that did the other surgery - I was in his office 3 days later - and in surgery in less than 2 weeks. I have rods in my lower back, and they in no way affect my movement or range of motion, and I am totally pain free.

So please, don't be fearful of having rods in your spine, if that's what the doctors say you need. You'll feel like a new woman.

Please take care and keep us updated. You're in my thoughts and prayers.

[Kirsten]

Thank you so much for trying to cheer me up. Of course I know I'm not completely alone with my PT family - and my sweet kitty girls... And I do have friends, even though they live far apart, but we're talking the phone. And I'm feeling almost ungrateful that I'm complaining 'cause one of them made this wonderful gift, my new camera...
But often I'm just feeling so empty and lost 'cause I'm always alone in real life, I'm spending every day entirely on my own, and it's hard to change that and build up new friendships here in my hometown with all these health isssues.

No, I'm not religious, I don't have a religion; sometimes I wish I had, I guess things were easier to cope with. I'm trying to be a good person, I'm trying to be tolerant and open-minded, I'm trying not to judge... and I just hope I'll have a better karma in my next life - if there is such a thing anyway.

I don't think I could ever have a relationship. All these health problems are too much of a burden to put this on others. That's why I have to go through this life alone. I'll never be "a part of something", and that is something that's making me very sad for a while now...

Candace, thanks for the link, and the information.

pomtzu, thank you for sharing your experiences with me, re. the spinal surgeries. That's a lot to deal with, and that cervical condition sounds really scary! Glad these surgeries helped.

happylabs, I never heard of hyperparathyroidism before. I was only familiar with hyperthyroidism and hypothyroidism, all these hormonal things are so complex. Besides, my feeling is that there's still a lot of research to be done in that field. I hope you'll feel better!


As for the surgery: I'm not sure if they would remove the entire pituitary gland; it sounded to me as if they would only remove the tumor. Anyway, I have already read that they have a tendency to recidivate, so I would probably need these meds that keep them small... the one that causes psychosis... and I really fear that, as I've seen a person with a psychosis a few years ago, and that was horrible; she was about to destroy everyone around her, she even wanted to kill Luna and Lily, and I would rather be dead than being like that.

[Miss Z]

Thinking of you, Kirsten. It must be tough to go through, but as others have already said, PT always has an ear to lend.

On a side note, never think your health problems would be a burden to others. Those who truly care are always prepared to let the good outweigh the 'bad'