I have Gigantism and I had Brain Surgery two days ago to remove my Pituitary Gland AMA!

The surgery was a success! There was some leakage on the tumor but that is normal. Everything is going splendidly!

How tall are you currently, and is gigantism hard to live with, like dwarfism is? Also, what are some of the health concerns involved with being diagnosed with gigantism?

Currently I am 6"4', I am 15 and have been dealing with the jokes for my whole life (not to mention all the physical stuff the kids did) I am a "gentle giant" and would not even hurt a fly. It is very hard being a tall teenage girl. I cannot find any clothes or shoes without spending a fortune or looking like a guy. I can not fit in any new cars or air planes. I have to stretch every ten minutes if we go on a road trip. And in the movies I always end up being yelled at for kicking the seat. But it is not all bad, I don't play sports but I do sing, draw, paint, etc. Also if you ever had a large dog before you know that the die faster because their heart has to pump all that big body, well that is how it is for me. If I did not have this surgery I would not have made it to see my 20th birthday.

How old are you now? How early were you diagnosed? Do you have any siblings? What are the chances of your children, if you can have children (can you?) Will also have it? Good luck! Speedy recovery!

I am 15 almost 16, I was diagnosed at the age of 10. I have 4 half siblings, non fully blood related. I can not have children.

Thanks for responding. How are you feeling?

I am getting remarkably better, I am out of the ICU and am in a real hospital room. I am able to eat solid foods and am able to walk around. I am doing homework right now.

Awesome!! Do you feel any different? I've never had major surgery so I can't imagine what it's like. Especially knowing they were fishing around your brain!

Well this was my first major surgery so I had no idea on what to expect. But I do feel different, I feel the same I just have to take pills to substitute for the hormones. I do feel kind of lighter in my head haha.

Has your condition been hard on your dating life?

Yes it has effected my dating life dramatically. People are very rude and selfish that they think I will "stomp them" or "crush them" It is very annoying.

There have been lots of famous people with Gigantism, but do you see any of them as role models or heroes?

Andre the Giant is my all time hero. You see I first was introduced to him in my younger years by watching the movie "The Princess Bride" I then became so obsessed with him, Even though he did have his problems he was a great man. Most famous people with giganticism are or were wrestlers and I am not into that stuff but Andre is my favorite person ever! I will always love him, he game me so much hope!

Awesome. I'm not into wrestling either, but yeah, he always just stood out to me.

He is a "gentle giant" that is also what I am if you could say. I could never hurt anyone, even though my size is threatening for some.

He is a "gentle giant" that is also what I am if you could say. I could never hurt anyone, even though my size is threatening for some.

What height are you?

6 feet 4 inches

I play the Eiphonium (baritone or "mini tuba") I am very good at it because of my large lungs make it easy to play loud and proud!

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some things like playing sports and doing more active recreational exercises has become difficult for me.

some things like playing sports and doing more active recreational exercises has become difficult for me.

What is it like having Gigantism? Sorry for the vague question...

It is like being in a class with four year olds yet those four year olds are social piranhas that feed off of your hurt when they call you names. So I guess you could say it's a struggle.

Jeez, I'm sorry to hear that...

Don't apologize, you had nothing to do with it. I have learned to love everyone (and I mean EVERYONE) It is a blessing that I have had that experience with the wicked children because it taught me so much.

How are your regular social interactions? Do people seem to be warry of you?

With the few people I can truly call friends that are with me we have fun, but people are not nice about this kind of thing so it can get rough in this life, but I keep trucking along.

Don't worry. There are lots of guys that love tall girls. You'll focus on school, learn as much as you can and with time they will come.

I do hope so, I very much enjoyed your questions and am very thankful you spent time out of your day to talk to a girl in a hospital. It is people like you that give me hope.

How early was this caught? I know that if untreated, it will often result in acromelagy once the growth plates have closed.

Also, is there some reason they would prefer to remove the entire pituitary rather than leaving some small part of it intact to carry on its usual duties?

Well people are born with giganticism, but at the age of ten they did a MRI scan because I was having psychiatric problems. After the fourth visit they did the MRI.

Are psychiatric problems a common symptom of gigantism? If so, is it from the problems with the pituitary gland?

Most people with giganticism do have psychiatric problems but not everyone, I do have those problems unfortunately and yes it is caused fro,m the gland. The gland releases chemicals in the brain that causes psychotic behaviors that only are stimulated by medicine, we do not know for sure if my problems will go away.

That really sucks :( I hope your surgery cures those problems too!

Thank you, I very much appreciate your questions, they have been making the day so much less boring.

Good thing they caught it, then. Did they explain why they wanted a total removal rather than leaving a portion? I assume it's because they had worries that any remaining bits might come back full strength and cause this to happen again.

The pituitary gland is connected to two vital blood vessels, and if they removed it all I would have bled to death so they did have to leave some in there to keep my brain from bleeding out. There is a chance that the gland might grow back which is why we will keep doing MRI scans and more tests/scans.

My recovery is going smoothly. I am 15 years old and we found out about this when I was 10. They took out what they could (most of it) the rest was connected to the blood vessels. I am so happy you asked me this question

Keep your chin up. I know I'm not exactly huge, but I'm 5'9, and in my asian family, I'm like a mutant. Stay proud. Everything you go through will temper you to appreciate the gifts of life. Keep in mind everything you work hard at are things you can only get better at! I guess this isn't really a question, but I hope you continue to live long and prosper.

Thank you so much, you have no idea how happy I get when people like you post this amazing stuff. I am so thankful for people like you in this world. You make life worth living!

I'm not sure if you're still reading this, but I wanted to let you know that I remember what a bunch of dicks teenagers can be. They see you as some sort of threat so they try to break you down. I went through it for totally different reasons, I just wanted to make sure you know (warning: cliche ahead) it really does get better. Once your out of school, the jokes slow down tremendously, as do the stares, the snide comments, and the general rudeness. What you're left with is respectful questions and comments, and the occasional child in a grocery store yelling "MOM! Look at HER!!" But that's kinda funny when it happens, because the mom gets SO embarrassed.
You seem to have a good head on your shoulders. Just stay positive.
And if you are still answering questions, what do you want to be when you grow up?

I am sorry I did not answer sooner, I very much love this post it makes me look forward to the future. When I grow up I want to be a teacher for the special ed. kids (junior high, through high school ages) I am very passionate about teaching kids, especially kids that need just a little help. I have helped and volunteered with kids with special needs my whole life. My mother has made a big imprint on that part of my life.

I am sorry I did not answer sooner, I very much love this post it makes me look forward to the future. When I grow up I want to be a teacher for the special ed. kids (junior high, through high school ages) I am very passionate about teaching kids, especially kids that need just a little help. I have helped and volunteered with kids with special needs my whole life. My mother has made a big imprint on that part of my life.

How much did the procedure cost and what are some difficulties you had to solve financially?

My insurance covers most of the financial costs. The most costs are clothes that fit, and food that will fill me.

Do you have to get hormone injections, I know the pituitary gland releases quite a few hormones that is required for homeostasis.

Every week for the rest of my life I will need hormone injections. I will also take tablets for hormones

Every week for the rest of my life I will need hormone intjections. I will also take tablets for hormones

Do you judge people with a weird part in their hair?

Haha, no I do not. I have been judged my whole life so I know how it feels to be judged, so I try not to do so.

Haha, no I do not. I have been judged my whole life so I know how it feels to be judged, so I try not to do so.

At what age did this manifest itself? Example, were you a large baby, toddler, ect?

I was quite a large baby but my family is very tall so that did not raise any flags, at the age of ten I started to have psychiatric problems. After four trips to the mental hospital they did a MRI scan and found out my pituitary was way past normal size, then it just got worse from there.

I apologize for not answering any questions yet, I am new to reddit so please be patient (pun intended) again I apologize.

Are you still there?

Yes, I am in the hospital still.

Do most giants (is that even the right term for someone with gigantism?) have to have their pituitary glad removed to cease the growth? I always figured they grew the same as everyone else, just a lot more of it

The surgery is optional, so it is all their decision, for this surgery it does cease growth but will not make you shrink.

If I may ask, what made you decide to have it removed? Were there medical complications, other than the never ending growth, that lead to your decision for removal?

If I kept my pituitary I would become blind, the pituitary presses on the octipt nerve and causes vision lose. My pituitary was so big I almost went blind, also my body kept growing making a 15 year old heart pump more than it should, which makes me die.

well not dying is certainly a plus! Did the surgery restore your vision?

Yes it did! There was an immediate response with my vision. My father did a little test on me and it showed remarkable change. Think of a horse with blinders on, that is how it was for me.

I play the Eiphonium (baritone or "mini tuba") I am very good at it because of my large lungs make it easy to play loud and proud!

What interests or hobbies do you enjoy? Does Gigantism make doing any of those things difficult?

Some hobbies I like are arts, music, writing, and more. Yes my diagnosis does get in the way of these things, but I am passionate about my hobbies so nothing is out of reach for me (pun)

What type of positive experiences have you had with your condition? Any great relationships you've encountered because of your uniqueness or influential stories?

I have had wonderful relationships with the staff here, they really strive for my recovery, In my life I have been blessed with many life changing experiences. You see with my height it is easy to tell when someone is a real friend and is not just using you, so I have met some very beautiful souls. I appreciate your question, for these help my recovery. Thank you.

I don't know if this has been asked, but do you think there will be more sophisticated solutions to gigantism that the complete removal of the pituitary gland in the future?

Yes. I do believe that chemo and radiation will help, the doctor said we still might do that, other than that there is no solution.

I thought that Gigantism had nothing to do with cancer, but apparently it does have to do with tumors. It seems like there are a lot of medicinal and neurochemical treatments as well. I don't see why the doctor would suggest radiotherapy when the tumorous gland had already been removed.

I am told that too, but I have no idea for sure.

Does she look up to anybody who suffers from gigantism as inspiration? I know a lot of people who suffer from it have gone on to achieve great things, of course I won't lie most of them are male and for whatever reason pro wrestlers, but anybody in particular she relates to?

I really look up to andre the giant. He is so sweet, he passed away from his gigantism but he will always be with me.

I want to wish you all the best with a speedy recovery!

I have just one question please. Was the surgery painful? I have a pituitary adenoma that may need to be surgically removed. I was wondering what to expect if I do end up having surgery.

Take care and thank you in advance for any surgical information! :)

I barely remember the day of the surgery, the aftermath is kinda painful but you will get morphine. It is all worth it though. Don't be afraid if for a while you have a tube all the way up inside you (capeter) it will stay for a while. Also make sure your ears have NO fluid what so ever because if it does that is really bad. They will do many tests on you and for a while you will be extremely thirsty and can only drink clear liquids for a few days. You will not be able to taste anything and your nose will hurt for the longest time. But it is all worth it.

I barely remember the day of the surgery, the aftermath is kinda painful but you will get morphine. It is all worth it though. Don't be afraid if for a while you have a tube all the way up inside you (capeter) it will stay for a while. Also make sure your ears have NO fluid what so ever because if it does that is really bad. They will do many tests on you and for a while you will be extremely thirsty and can only drink clear liquids for a few days. You will not be able to taste anything and your nose will hurt for the longest time. But it is all worth it.

Is there anything you will do now that you couldn't do before?

I can now play sports. When I had my gland I could have gone blind if I got hit in the head in the right spot. But I don't like sports so I will just continue band :)

I hope that you are doing well and recovering from your surgery. I was wondering if you have problems with your joints or blood vessels? I know that this can be a problem with some people who have overactive pituitary glands, but i never really understood the connection between the two other than the stress that are put on them. Again i hope you are doing well. I have my own medical issues and know how scary being in hospitals can be when you are a teenager.

Well yes and no, I do not have problems now but later on in the future I will. My heart will have to be under close observation because it has to pump so much. Blood clots are a major worry for me because of the surgery. But not yet!

What are the longterm effects of having your pituitary gland removed and having to go on hormone pills for the rest of your life? Thanks for doing this AMA! I wish you all the best with your recovery :)

Well I will forever be on hormone pills, my pituitary gland controls ny bladder and my kidneys so I will be a little extra thirsty and will have to take pills to control my bladder. I will be on lots of pills.

What is the most niticable change you have noticed? Is there any changes in your moods etc?

The biggest change is getting my brain to function without the gland, also the pituitary gland controls the bladder and kidneys so that makes me extra thirsty and needing to go to the bathroom allot but with the right pills that will be covered!

Just out of curiosity, if you were diagnosed at 10, was there any reason you couldn't have the surgery then?

What's your favorite subject in school?

They did not do anything at ten because they thought with the right meds it could be cured (huge mistake) Soon my mental doctors and my physical doctors (give me a break I'm fifteen I don't know the right names) were at a stand off on what to do, finally a amazing pediatric doctor went straight to the top and planned surgery for me right away.

My favorite subject is literature, and art. I am in love with both, I am the president of the art club in my school and I am a excellent writer and can read at a college level. You see as a kid no one played with me so I just isolated myself with books and art supplies :)

Is anything besides your height affected? How is your school reacting to the surgeries and medical stuff? Has it effected your social life? (Friends, relationships?)

Other than my height, my vision has been badly affected. I used to only see through tunnel vision, and my vision changed on a daily basis. I would go cross eyed at any movements. My social life has been affected also, many kids my age or around my age are jerks (you may know) The people where I live are very judge mental about appearances, so when ever I would walk in somewhere or say something, someone always had a comment. My taste has also been affected by the gland. I used to have distorted tastes (sweet was sour, sour was sweet, etc.) Also my judgement was affected which is why I had to go to the mental hospital so many times (11 times to the local hospital, and 1 time to the state hospital) There were also little changes such as smells and textures (when I would touch something it would feel like something else) Since the surgery all of that (or most of) is gone or will go away soon. I am very blessed that the surgery went well and that everything will most likely get better.

This means you will shrink to normalsize right? RIGHT?!?!

Unfortunately no I will not shrink, yet fortunately I will not go.

Hows the weather up there

I just got that post...

Outside it is 28 degrees. Inside it is 72 degrees. Best first question ever!

Outside it is 28 degrees. Inside it is 72 degrees. Best first question ever!