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I have Acromegaly (Gigantism). Ask me anything
This is my very first post on Reddit so I hope I don’t screw this up too much. The best way to start this is to give yall a little background on my past. Growing up I was always taller, bigger, and stronger than all the other boys in my class. I was never overweight at all but even throughout elementary school I seemed to be just an overall bigger kid such as large head, hands, and feet (I have a size 17 shoe now). Some parents would maybe see this as a slightly concerning matter but that thought never crossed my parents mind because my family is filled with tall people. My dad is 6’3 and I have a couple 6’4 uncles and my parents just figured I had good genes. I was also a sufferer of migraine headaches my entire life starting at a young age and I would often see doctors about that. The conclusion we came to about that issue is that I just inherited the family tradition of migraines since many of my relatives get them.
So, skip to January 2nd of 2011, I am 19 years old. That morning I wake up with a migraine. Nothing is different about this one except for the fact that it lingers for over a week. When the spring semester of school starts I still have the migraine and the whole time I’m just thinking it will run its course and will go away. After having it for several weeks with no relief it gets so bad that one night it literally brings me to my knees so I quickly call my girlfriend and have her take me to the hospital. While I’m there the doctor gives me a brain scan and sends me back to the room where my girlfriend is anxiously waiting. Several minutes pass before the doctor comes in with a look of complete disgust and tells me that she found a tumor on my pituitary gland. She doesn’t say much after that and gives me a prescription for hydros and just leaves. I simply cannot describe to you what it is like having someone tell you that you have a brain tumor. I look over to my girlfriend and she is sobbing while I am just in disbelief. The very next thing I did was call my dad and tell him the news.
The rest of the story I’m gunna keep brief to leave room for questions. The next day my parents pick me up from school, which is a couple hours away from home, and my long medical journey starts. I’m from Atlanta and I have an uncle who is a doctor and knows the best guy in the world for doing surgery on pituitary glands at Emory hospital. This doctor is booked and has a new patient waiting list of a year or so. Because of my connection I get an appointment within 24 hours. Surgery is scheduled for 2 weeks later and it turns out to be a very long surgery with an even longer recovery. Within the 2 weeks before my brain surgery I underwent countless tests on my physical attributes and endocrine system and I am diagnosed with acromegaly. I take the semester off and over the course of the next couple years I am put on countless hormone therapy medicines aimed to lower my growth hormone that I have to inject my self with several times a day. And another hormone therapy medicine that I inject once a month, this one in particular is extremely painful (and expensive… upwards of $10,000 per shot without health insurance). The needle is enormous and the medicine itself has the consistency of a semi frozen jello. These two meds brought my growth hormone down but not enough so I underwent 6 long weeks a radiation (I had to freeze sperm prior to my radiation). Today, I am being told that I will be taking these medicines for the foreseeable future… maybe up to 10 or more years. I still suffer from headaches and take a slew of powerful prescription narcotics to relieve the pain. Down the road I am destined for countless problems stemming from this disease and eventually the total failure of my pituitary gland but I know that part can be fixed by taking a few hormone supplements.
Today I am back at school and I should be graduating in a year. I am happy and enormously blessed and humbled by how lucky I actually am. This whole ordeal could have been much worse. This disease is deadly and more times than not the patient lives a short painful life before succumbing to the disease. It gives me chills just thinking how lucky I was to receive this medical care. I have the best team of doctors who genuinely care about my family and I. I have the most loving parents who have sacrificed so much to make all this happen. And my girlfriend has been there from the beginning and she has helped me every step of the way. Sorry for being extremely vague in the end but I am here for anyone who has anything to ask me at all!
Proof... http://imgur.com/OGCMu (monthly shot) http://imgur.com/SxsWJ (daily shots) http://imgur.com/TWW2e (radiation mask) http://imgur.com/cKkze (radiation mask) http://imgur.com/nbqZW (scannable ID card for radiation)
Photo of me (6'7) standing next to my gf (5'9). Some of yall have messaged me about seeing a picture. http://imgur.com/qpThs
sczmbz35 karma
Sorry to hear about the medical problems though, been down that road before...(completely different from yours)
hcouch35 karma
I have learned that everyone has had their fair share of issues. overcoming them is what makes us human. product of natural selection. Those who don't power through the obstacles in their way tend to not make it to the other side towards greener pastures
Lunney74 karma
Are you offended by the New York Giants or the San Francisco Giants? Like Native Americans are w the Cleveland Indians
thirtythree_fiftytwo42 karma
Your girlfriend is insanely hot with a crazy nice rack.
FYI: I am female. And straight.
memymineown27 karma
What kind of doctor is disgusted by a tumor and then just gives you a prescription and leaves?
hcouch27 karma
sorry maybe i wasnt clear. the doctor that just gave me the prescription and just left was the on-call doctor working in the emergency room where i went to school. my actual neurosurgeon is an amazing individual. along with the rest of my doctors. I have a whole team of them
6_ft_425 karma
Acromegaly is not the same thing as gigantism. Gigantism happens with excess growth hormone before the growth plates have closed. Acromegaly occurs after growth plates have closed. If you have acromegaly you aren't tall because of it, that is solely genetics. Acromegaly will cause things such as the forehead, cheekbones and jaw to enlarge and become more pronounced.
hcouch35 karma
You're very smart to catch that. To be honest I included gigantism in the description simply because no one knows what acromegaly is so I included it because they are similar. I wanted people to have somewhat of an idea when they read the title. I have been told that my height was affected because if the disease. But my huge hands and feet are a direct symptom of acromegaly. As well as my teeth, joint, and blood issues. Along with countless others
hcouch24 karma
BUT in my defense. my case of acromegaly has been categorized as an acute case of gigantism.
hcouch26 karma
I like to think so. I have never wished I wasnt this tall. Im sure people tend to recognize me or my height. and apparently it gives me an advantage when applying for jobs haha. There are times when it sucks though. i dont fit in some cars. mirrors and shower heads tend to be too short for me.
h_p_bitchcraft11 karma
Wow, do you need a specially built shower? Also, with size 17 feet, do you have to get your shoes specially made?
hcouch35 karma
a lot of times i just suck it up and make it work. But sometimes i do go to hardware stores and buy one of those long bendy shower heads that i can raise over my head. As for my feet, there is a very famous shoe store in downtown atlanta called friedmans shoes that have EVERY kind of shoe you can imagine all in very large sizes. all the athletes go there
svenniola10 karma
even being just 6'3 can be uncomfortable.
most of the world is made for 5 foot something people.
going on airplanes especially sucks.
funny when people want to be more tall. :)
hcouch15 karma
oh i forgot to say airplanes! That is definitely a time when i wish i wasnt this tall.
hcouch54 karma
not gunna touch that question with a 10 inch pole... sorry i just couldn't resist
hcouch31 karma
I have never been called "that awkwardly tall kid" I have been told by my doctors (who have examined every square inch of my naked body) that I have the perfect proportions for my height.
YoungSerious25 karma
I like that you stayed classy when that guy was obviously asking about your dick.
ezgirl7 karma
wow, what an amazing story! I hope you have a long & happy life now. so, would you say it impacts any social interactions you have with people? and are you frequently asked dumb shit like "how's the weather up there?"
hcouch8 karma
Thanks! I am an overall confident person so I dont tend to let this bring me down usually so I dont have many social disadvantages. I do my best just to forget about it and just live my life when I'm not feeling any of the side effects. And yes, I get those "tall" jokes ALL THE TIME haha.
matts5347 karma
What's the hardest part about having the condition for your everyday life?
hcouch10 karma
well now that all the surgeries and radiation (worst/hardest experience of my life) are past me the hard part is over. It is just a waiting game now to see if my body accepts all the procedures I have undergone which could take many years. The hardest thing for my everyday life are my migraines. I am prescribed oxycodone which i have to take very often just to get through the days
hcouch14 karma
definitely. he can drink gallons and gallons of wine in a single sitting. People with acromegaly have livers that can metabolize toxins like alcohol at a faster rate
Swag_Turtle11 karma
He drank 156 beers in one sitting.
Challenge all your friends to drinking games, OP.
[deleted]5 karma
made a reddit account just for this even though i'm a bit late to the party (I lurk casually), because woah someone else in this world with acromegaly and look at all of dat somavert.
my dad was diagnosed with acromegaly in 2008, and he's also diabetic. he had a tumor close to the same spot as yours in 2002 and after he had surgery it came back in 2009, but this time we think radiation kicked its ass for sure (and also lots of 20mg somavert shots).
it's been a roller coaster since then (so much better than before, though) but at the time it was almost a miracle to hear that there was at least a name for what was happening to him, and hearing that my dad isn't the only person in the world who has to deal with this. (he still gets curious looks and Q's when he goes for checkups and it's too much of a pain to describe to my friends so I just don't say anything)
wishing you the best with graduation and life, and hopefully someday they'll come up with a cure for acromegaly.
ps: my dad is only 6'0", i'm think he's secretly jealous
pps: did you know that andre the giant had acromegaly? makes sense considering his size, but I thought it was pretty cool when I first heard it.
hcouch2 karma
diabetes is one of the many many side effects of acromegaly. I'm lucky and dont have it. I wish your dad best of luck and tell him that he is part of an elite group of people (maybe not for the best haha). Yes, I knew that he was acromegalic. I think his case might have also been categorized as gigantism too.
hcouch13 karma
no, girls love tall dudes. I have been with my current girlfriend for going on 3 years
hcouch5 karma
Am i expecting any problems in the future? Yes. Eventually my pituitary gland will stop working all together so whatever hormones it is responsible for creating (which is just about all of them) will have to be supplemented by taking vitamins daily. I am at risk for all sorts of cancers so that will have to be monitored.
watetwhut3 karma
You mentioned you had to free your sperm before radiation treatments, does that mean your sperm is now in a sperm bank or something different? Has this changed your ability for future reproduction?
hcouch6 karma
No, no one has access to my sperm except for me. if i die they get destroyed. The reason I had to freeze sperm is because i had radiation on my pituitary gland which could possibly affect my sperm count and overall quality. So just in case the radiation destroys my ability to produce sperm I will have some frozen so I can still have children. But overall down the road I may have a hard time having kids.
albatrossnecklassftw7 karma
First, I imagine the cup was pretty big.
Second, are the sperm proportioned as well? Can't help but imagine tadpoles :P
I am of course just being light hearted, I hope you all the health in the world man.
hcouch11 karma
hahahaha no the cup was not any bigger. and if a bunch of tadpole sized sperm came out i would have been alarmed. I appreciate the wishes buddy
ComradeCube4 karma
Are any of your issues genetic? Wouldn't it be a bad idea to reproduce?
hcouch5 karma
good question. No, they are not genetic so there wont be any issues with my children having these problems. at least i hope not.
ammped3 karma
Did you ever use your size to gain an unfair advantage, such as being a bully or in sports?
hcouch19 karma
Im sure at times I have. but nothing too extravagant. People dont fight me for the front seat because they know I dont fit in the back seat a lot haha.
hcouch2 karma
Hats, gloves, shoes, sometimes ties. and by custom i mean items that are made specifically for large people.
tghetto2 karma
Would you say that at 6'7", 240 lbs that you look like a NBA Player physically speaking?
hcouch2 karma
physically yes. and i never work out. Sometimes i fantasize about what it would have been like if i worked out hardcore and got my weight up to 275 or so which would have been incredibly easy, i gain muscle mass quickly, and played football.
B0oty_Destroyer2 karma
Do you ever experience a lot of stress on your joints? (specifically your knees)
hcouch3 karma
frequently. this past summer i got injections in my right knee to lubricate the joint.
hcouch2 karma
its kind of complicated. the tumor on my pituitary gland cause it to create an extremely high level of human growth hormone along with thyroid and something called IGF. and my testosterone levels fluctuate a lot, along with platelet and white blood cell.
canquilt2 karma
What kind of car do you drive?
What's your inseam? Where do you get clothes?
Is your voice excessively deep?
What do you do for fun?
What's your major?
I bet your feet stick off the edge of the bed.
hcouch5 karma
I drive a land rover. it has a deceptively large amount of head space. I wear a 38/36 pants. most of my height is in my upper body. I definitely have a deep voice no doubt. I can hit all the low notes. I am in a fraternity so i like to have a good time. try to go hunting and stuff when i can. I am an economics major My feet most certainly do stick off the edge of the bed.
DarthHM2 karma
Does it affect your physical conditioning as far as playing sports is concerned? I guess what I really want to know is will you be playing basketball?
hcouch3 karma
I played hockey, football, and i wrestled before i got too tall for it. I was good at basketball and swimming but i was young and wanted a contact sport. I loved using my size and weight advantage and hitting people. I had reconstructive knee surgery when i was in eighth grade and have had knee problems ever since. Which is undoubtedly because of my acromegaly. So sports like basketball were put on a permanent hold. On another note, I was/am able to get into shape much faster than others because of my high HGH
Karalynjulia2 karma
Do people make jokes about your height a lot? What's the best one you've heard?
hcouch2 karma
All the time dude. Seriously haha. And I can honestly say I have never heard a good one
Natural_One2 karma
So with all this growth hormone in your body, why dont you work out like a mofo and put it to work on turning you into a hulk?
hcouch6 karma
Mostly because as I start hitting the weights I start getting joint pain. Especially in my knees
hcouch4 karma
Even in kindergarden i remember being bigger than all the other kids. So even from the beginning in have just been a big guy. I was around 11lb when i was born.
iamfuckinganton2 karma
Do old people still do that "oh my look how much you've grown! You're such a big boy now!" bullshit to you?
hcouch4 karma
No, people just tend to see me and they're immediately shocked as to how big I am. They tell me how big I am as if I don't already know that.
hey_dirty2 karma
Why are there so many posts about his penis here and so few posts about his girlfriends rack!?!?! I will never understand you Reddit.
freemarksix1 karma
If you could go down to a "normal" height like 5 feet, 11 inches, would you?
biochem_forever1 karma
I noticed that you listed the drug Somavert among your medications. Has the addition of that medication help treat your condition more effectively? I only ask because I know the guy who developed Somavert (just had a class taught by him), and I'm curious to know what kind of real impact the drug has had.
hcouch1 karma
yes. it has helped treat my condition. but just not enough. i have had to undergo other hormone treatments which have all helped me but not to the point where I am free of this disease. It is still a waiting game for the response i am expecting for the drugs i have been taking for a while
JJR4hawks1 karma
My brother is 6'7" too. He gets really annoyed about people telling him he is tall like he didn't know. But last year he told me that whenever he sees someone that is just as tall or maybe taller he stands up straight so he looks taller. Do you do the same thing?
hcouch7 karma
Awesome question. Actually I probably do that subconsciously. I feel threatened when other dudes are taller than me haha
picardythree1 karma
How tall is your girlfriend? I imagine things would be a bit weird if she were like 4'11".
dudeniker1 karma
How does it feel to share a disease with Andre the giant, have you ever wrestled because you should.
hcouch1 karma
andre the the giant is famous and I realize that he died because he simply didnt get any treatment for is issues. and yes, I did wrestle. I answered that somewhere in the comment section. I was good but eventually realized that wrestling wasnt the ideal sport for people who was as tall as i was.
Tk143881 karma
I apologize that you are 6 foot 7 and feel its a problem but I'm six foot seven with a size 17 shoe and have minimal problems in life. In fact I'm the runt of the family I am 6 foot 7 my father and uncle are 6-8 and my brother is 7-1 life at 6-7 might not be the easy(bumping my head, and scoliosis) but I'd choose it over being short a hundred percent of the time. Choke it up stop sticking your self with needles and enjoy the view
hcouch2 karma
i dont mind being 6'7 at all. its all a matter of perspective. yeah your family is tall which is great. my family is tall but not as tall as yours. if i don't "stick myself with needles" i will be dead in a matter of years. I appreciate your comment but obviously you dont know what your talking about.
lordezar1 karma
Good luck on your recovery. Why do you think that doctor had a look of disgust on her face and just left after giving you the news?
hcouch2 karma
Im sure she was just uncomfortable with telling a complete stranger who stumbled into an emergency room at 11pm that he has a brain tumor a little smaller than a ping pong ball and there is nothing she can do about it.
Aleksander731 karma
Not to be a dick but there is a difference between acromegaly and pituitary gigantism.
hcouch2 karma
yeah i know i explained it briefly in another comment. Its hard to explain. My acromegaly is serious but ever so often my case is considered to be slightly gigantismatic.
Aleksander731 karma
Acromegaly is an excess of gh after puberty. Thus, long bones don't grow more and make you a giant. What are your gh levels like now? Do you have any brow bossing or continued hand and foot growth?
hcouch1 karma
I'm gunna have to go back and double check on the specific numbers. I'll get back to you about that. But there is a hormone called IGF-1 which metabolizes HGH and the normal level is less than one (don't ask me why) and mine was 9. The reason that hormon was so high is because it has to handle so much HGH. I'll edit my post with my actual numbers when I get them
hcouch1 karma
Luckily, I received great treatment, so I am expected to live a full life because of the care I have gotten. When they diagnosed me, they said my tumor was big enough that if it hadn't been treated within the next couple months I would be dead. As mentioned earlier, I am at risk for several different types of cancer and severe hormone deficiency.
hcouch2 karma
I wouldnt go as far as to say its weird no. if you really want to go get some blood work done. being tall is HARDLY the issue with acromegaly. You probably just have good genes but it wouldnt hurt
KUSH_MY_SWAG_420_69225 karma
jesus christ op just tell us about your dick
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