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My Unknown Health Condition Connected to Abraham Lincoln and Andre the Giant.......
page: 1share:
Well I have been a member of ATS now for nearly two years and thought that it was about time I did a proper introduction about myself, but more
regarding the last 5 of my life since my life changed in 2007…
Have you ever thought that you were adopted or that your parents were not your real biological parents? This question went through my head for many years, the reasons I will go into within this thread…
Through my child days and through all my teenage years I was a normal everyday looking kid; in fact I was quite a nice looking young man who had the occasional zit here and there like everyone else growing up, but nothing too drastic…
But as I got towards my early twenties people kept on saying and asking if my parents were my real parents and if I was adopted or not, basically because I looked nothing like what my supposed biological parents did…
Over time I got the nickname The Bear, which was probably due to my size, I have never been over tall (I am 5ft 10 in), but all my other extremities such has my hands, head, chest, feet, nose, ears, jaw, forehead and even my tongue when I stick it out would appear to be getting larger and larger by the year…
Anyway, I just thought that this was the norm, after all, we all appear to change as time goes on. But has time went on I would start to get called names such as caveman, Neanderthal, boxer, big head, wrestler, bear man and on some occasions I was even called Shrek…
It was at this time in my life why I was starting to question why I had suddenly started being called all these names, I had never been called all these names when I was younger, in fact I was called totally the opposite…
I wouldn’t say that I was/am overly ugly, I have never been without a girlfriend since the age of thirteen, but all this name calling started to have an affect on me and my confidence levels started to drop, I couldn’t understand why it was all happening…
I was a very strong young man, in my youth I worked hard in the metal industry and foundries, I was a hard working man. People used to come from all over to arm wrestle me in the pub and have a drink with me and I just went along with it….
Anyway, to cut a long story short, in early 2007 I was on the verge of migrating from the UK and move to Australia with my girlfriend. I had to go for an Australian medical in order to get my permanent residency visa. I thought nothing of it and just went along to the medical so that I could get my visa as soon as possible….
So I walked into the consultation room to see the doctor and almost immediately he just stood right in front of me and asked if I had ever been diagnosed with a condition called Acromegaly. Now like you people who are reading this I had never even heard of the word Acromegaly and I certainly had never heard of this particular health condition…
But he told me that I had to go for tests to find out to be on the safe side. He also told me that it was the best thing to do due to the fact that at the time I was 42 years of age and if I did have Acromegaly I could be dead by 43. So as you can imagine this really scared me. So I went for tests and the tests came back positive that I was indeed an Acromegalic, or as I word it, an Acromegliac…..
I was then told that what I had was very rare and knowledge of it was not that well known either medically or indeed within society, and at the time there was only about between 1 or 2 people in a million who had the condition..
It was then that I learned the reasons as to why I had been changing over the years to appear to look like someone I never did before. Some of the main signs and symptoms of Acromegaly are as follows:-
Soft tissue swelling visibly resulting in enlargement of the hands, feet, nose, lips and ears, and a general thickening of the skin…..
Soft tissue swelling of internal organs, notably the heart with attendant weakening of its muscularity, and the kidneys, also the vocal cords resulting in a characteristic thick, deep voice and slowing of speech…
Generalized expansion of the skull at the fontanelle…
Pronounced brow protrusion, often with ocular distension….
Pronounced lower jaw protrusion with attendant macroglossia (enlargement of the tongue) and teeth gapping….
Carpal tunnel syndrome…..
Apparently all these changes occurred over quite a few years, but quite slowly. If I were to show you a photograph of myself from my early twenties and a photograph of how I look now, you would not believe that the person you were looking at was the same person. I have bumped into old school friends and they have not recognised me at all. I could even go to an old school reunion and sit there all night and nobody would even recognise me. That’s how much I have changed…
So basically Acromegaly is a Greek word that means “extreme" or "extremities" and is a syndrome that results when the anterior pituitary gland produces excess growth hormone (GH) after epiphyseal plate closure at puberty. A number of disorders may increase the pituitary's GH output, although most commonly it involves a GH-producing tumor called pituitary adenoma, derived from a distinct type of cell (somatotrophs).
Acromegaly most commonly affects adults in middle age and can result in severe disfigurement, serious complicating conditions, and premature death if unchecked. Because of its pathogenesis and slow progression, the disease is hard to diagnose in the early stages and is frequently missed for many years, until changes in external features, especially of the face, become noticeable.
Acromegaly is often also associated with gigantism.
So Acromegaly is the production of too much growth hormone from a tumour in the Pituitary gland. If you were to put your fingers in both ears, where your fingers would meet in the middle is approximately where your pituitary gland is situated. So I had to have the tumour removed from the pituitary gland in order to give myself a chance of getting older than 43…
The surgery is done by going up through the nasal cavity and going through the bone at the back of the nose in order to get to the tumour so it can be removed. My first operation was unsuccessful, but the second time they managed to take most of it but not in its entirety. Then after the surgery I then had to undergo 5 weeks of daily radiation therapy to try and shrink what was left of the tumour. Although I am never going to be completely cured of the condition the radiation still works to try and reduce the amount of growth hormone for up to ten years. But there is still a chance that the tumour can reappear in time, let’s hope not…
Just a few of the other complications that I now suffer with are:-
Severe headaches, Arthritis and carpal tunnel syndrome, Enlarged heart, Hypertension, Diabetes mellitus, Heart failure, Kidney failure, problem with vision, memory loss, apathy, mood swings, tiredness, arthritis and severe depression…
As things stand at the moment I have gone from being quite an active person to a person who spends most of the time lying down and haven’t got the energy to do very much. I am not working at the moment; I was a teacher for 17 years previously, but now I am unable to focus, mind swings from one extreme to the other and looks as though I may never be able to teach again, well not in a classroom setting anyway.
(Continued)
Have you ever thought that you were adopted or that your parents were not your real biological parents? This question went through my head for many years, the reasons I will go into within this thread…
Through my child days and through all my teenage years I was a normal everyday looking kid; in fact I was quite a nice looking young man who had the occasional zit here and there like everyone else growing up, but nothing too drastic…
But as I got towards my early twenties people kept on saying and asking if my parents were my real parents and if I was adopted or not, basically because I looked nothing like what my supposed biological parents did…
Over time I got the nickname The Bear, which was probably due to my size, I have never been over tall (I am 5ft 10 in), but all my other extremities such has my hands, head, chest, feet, nose, ears, jaw, forehead and even my tongue when I stick it out would appear to be getting larger and larger by the year…
Anyway, I just thought that this was the norm, after all, we all appear to change as time goes on. But has time went on I would start to get called names such as caveman, Neanderthal, boxer, big head, wrestler, bear man and on some occasions I was even called Shrek…
It was at this time in my life why I was starting to question why I had suddenly started being called all these names, I had never been called all these names when I was younger, in fact I was called totally the opposite…
I wouldn’t say that I was/am overly ugly, I have never been without a girlfriend since the age of thirteen, but all this name calling started to have an affect on me and my confidence levels started to drop, I couldn’t understand why it was all happening…
I was a very strong young man, in my youth I worked hard in the metal industry and foundries, I was a hard working man. People used to come from all over to arm wrestle me in the pub and have a drink with me and I just went along with it….
Anyway, to cut a long story short, in early 2007 I was on the verge of migrating from the UK and move to Australia with my girlfriend. I had to go for an Australian medical in order to get my permanent residency visa. I thought nothing of it and just went along to the medical so that I could get my visa as soon as possible….
So I walked into the consultation room to see the doctor and almost immediately he just stood right in front of me and asked if I had ever been diagnosed with a condition called Acromegaly. Now like you people who are reading this I had never even heard of the word Acromegaly and I certainly had never heard of this particular health condition…
But he told me that I had to go for tests to find out to be on the safe side. He also told me that it was the best thing to do due to the fact that at the time I was 42 years of age and if I did have Acromegaly I could be dead by 43. So as you can imagine this really scared me. So I went for tests and the tests came back positive that I was indeed an Acromegalic, or as I word it, an Acromegliac…..
I was then told that what I had was very rare and knowledge of it was not that well known either medically or indeed within society, and at the time there was only about between 1 or 2 people in a million who had the condition..
It was then that I learned the reasons as to why I had been changing over the years to appear to look like someone I never did before. Some of the main signs and symptoms of Acromegaly are as follows:-
Soft tissue swelling visibly resulting in enlargement of the hands, feet, nose, lips and ears, and a general thickening of the skin…..
Soft tissue swelling of internal organs, notably the heart with attendant weakening of its muscularity, and the kidneys, also the vocal cords resulting in a characteristic thick, deep voice and slowing of speech…
Generalized expansion of the skull at the fontanelle…
Pronounced brow protrusion, often with ocular distension….
Pronounced lower jaw protrusion with attendant macroglossia (enlargement of the tongue) and teeth gapping….
Carpal tunnel syndrome…..
Apparently all these changes occurred over quite a few years, but quite slowly. If I were to show you a photograph of myself from my early twenties and a photograph of how I look now, you would not believe that the person you were looking at was the same person. I have bumped into old school friends and they have not recognised me at all. I could even go to an old school reunion and sit there all night and nobody would even recognise me. That’s how much I have changed…
So basically Acromegaly is a Greek word that means “extreme" or "extremities" and is a syndrome that results when the anterior pituitary gland produces excess growth hormone (GH) after epiphyseal plate closure at puberty. A number of disorders may increase the pituitary's GH output, although most commonly it involves a GH-producing tumor called pituitary adenoma, derived from a distinct type of cell (somatotrophs).
Acromegaly most commonly affects adults in middle age and can result in severe disfigurement, serious complicating conditions, and premature death if unchecked. Because of its pathogenesis and slow progression, the disease is hard to diagnose in the early stages and is frequently missed for many years, until changes in external features, especially of the face, become noticeable.
Acromegaly is often also associated with gigantism.
So Acromegaly is the production of too much growth hormone from a tumour in the Pituitary gland. If you were to put your fingers in both ears, where your fingers would meet in the middle is approximately where your pituitary gland is situated. So I had to have the tumour removed from the pituitary gland in order to give myself a chance of getting older than 43…
The surgery is done by going up through the nasal cavity and going through the bone at the back of the nose in order to get to the tumour so it can be removed. My first operation was unsuccessful, but the second time they managed to take most of it but not in its entirety. Then after the surgery I then had to undergo 5 weeks of daily radiation therapy to try and shrink what was left of the tumour. Although I am never going to be completely cured of the condition the radiation still works to try and reduce the amount of growth hormone for up to ten years. But there is still a chance that the tumour can reappear in time, let’s hope not…
Just a few of the other complications that I now suffer with are:-
Severe headaches, Arthritis and carpal tunnel syndrome, Enlarged heart, Hypertension, Diabetes mellitus, Heart failure, Kidney failure, problem with vision, memory loss, apathy, mood swings, tiredness, arthritis and severe depression…
As things stand at the moment I have gone from being quite an active person to a person who spends most of the time lying down and haven’t got the energy to do very much. I am not working at the moment; I was a teacher for 17 years previously, but now I am unable to focus, mind swings from one extreme to the other and looks as though I may never be able to teach again, well not in a classroom setting anyway.
(Continued)
I write books and paint, and I also do the occasional bit of stand up comedy which is a great love of mine, but that is not too difficult as most
stand up routines only last between 5 and 8 minutes in length, even I can stay awake that long…hahaha
I have been all over the world and people think that they know me, but they don’t know where they think they know me from. They say that I have the face that they know well. They think that I am off the TV; some people believe they have seen me in the movies. I have even had photo’s taken with people, but they have no idea who the hell I am. I have been in bars, I have gone to the toilet and when I have returned my girlfriend has been surrounded by people asking if I am famous and want to find out where they think they know me from, my missus just laughs and finds it all quite amusing.
I have been in places where people just stand and stare at me, this happens quite regularly when I am on a bus or a train, I am never short of conversations with people.
I am just pleased that I am quite an outgoing person who takes it all in their stride. I suppose over time I have mellowed and began to understand more and more about myself and how I got to be who I am….
So that is where I am up to at the moment, I moved back to the UK, late last year from Australia, things didn’t go too well, it was hard to find work and I didn’t realise how long the recuperation period was going to take, but it’s nice to be back home in the UK and land of the living…
One step at a time as they say…….
Anyway, I am not going to go on too much more I just wanted people to be aware of Acromegaly and how it can affect people. I have left a couple of links on this thread if people want to find out a little more about it. If you do happen to see a person with any of the above extremity similarities then tell them, don’t be scared it could save their life, and I really mean that……
During my realisation of my illness obviously I did a great deal of web searches to find out more information and while I was doing so I came across some famous people who also had Acromegaly, here are some of them, some of them you may know, but you didn’t know the reason why they looked like they did, but you do now…..
Here are a few of them….
Abraham Lincoln, André the Giant (I believe died at 43), Richard Kiel(Jaws from the James Bond movies), Rondo Hatton (Horror actor in the 1930’s and 40’s), Ted Cassidy (also known as Lurch in the Addams Family). Apparently Punch out of the Punch and Judy show was also based on a man with Acromegaly, there are quite a few more, but you can look for yourself if you are interested to find out more….
Take care everyone, if you have any questions then please ask, don’t be bashful. I may be asleep, but I promise to reply to everybody who wants to know more. I want the knowledge of Acromegaly to be thrown more into the world outside which may also be able to save a few lives……
Thanks for reading and here are a few pictures of some famous Acromegliacs…..
Abraham Lincoln
Andre the Giant
Richard Kiel
Ted Cassidy
Punch (Punch and Judy)
Rondo Hatton
en.wikipedia.org...
www.patient.co.uk...
www.ncbi.nlm.nih.gov...
I have been all over the world and people think that they know me, but they don’t know where they think they know me from. They say that I have the face that they know well. They think that I am off the TV; some people believe they have seen me in the movies. I have even had photo’s taken with people, but they have no idea who the hell I am. I have been in bars, I have gone to the toilet and when I have returned my girlfriend has been surrounded by people asking if I am famous and want to find out where they think they know me from, my missus just laughs and finds it all quite amusing.
I have been in places where people just stand and stare at me, this happens quite regularly when I am on a bus or a train, I am never short of conversations with people.
I am just pleased that I am quite an outgoing person who takes it all in their stride. I suppose over time I have mellowed and began to understand more and more about myself and how I got to be who I am….
So that is where I am up to at the moment, I moved back to the UK, late last year from Australia, things didn’t go too well, it was hard to find work and I didn’t realise how long the recuperation period was going to take, but it’s nice to be back home in the UK and land of the living…
One step at a time as they say…….
Anyway, I am not going to go on too much more I just wanted people to be aware of Acromegaly and how it can affect people. I have left a couple of links on this thread if people want to find out a little more about it. If you do happen to see a person with any of the above extremity similarities then tell them, don’t be scared it could save their life, and I really mean that……
During my realisation of my illness obviously I did a great deal of web searches to find out more information and while I was doing so I came across some famous people who also had Acromegaly, here are some of them, some of them you may know, but you didn’t know the reason why they looked like they did, but you do now…..
Here are a few of them….
Abraham Lincoln, André the Giant (I believe died at 43), Richard Kiel(Jaws from the James Bond movies), Rondo Hatton (Horror actor in the 1930’s and 40’s), Ted Cassidy (also known as Lurch in the Addams Family). Apparently Punch out of the Punch and Judy show was also based on a man with Acromegaly, there are quite a few more, but you can look for yourself if you are interested to find out more….
Take care everyone, if you have any questions then please ask, don’t be bashful. I may be asleep, but I promise to reply to everybody who wants to know more. I want the knowledge of Acromegaly to be thrown more into the world outside which may also be able to save a few lives……
Thanks for reading and here are a few pictures of some famous Acromegliacs…..
Abraham Lincoln
Andre the Giant
Richard Kiel
Ted Cassidy
Punch (Punch and Judy)
Rondo Hatton
en.wikipedia.org...
www.patient.co.uk...
www.ncbi.nlm.nih.gov...
edit on 9-9-2012 by davethebear because: (no reason given)
reply to post by davethebear
I am honored to meet such a truly unique individual. Your honest and open post touched my heart. I would love to sit with you in person over a cuppa, and chat with you, on your journey through life. You seem to be at peace with yourself. I hope to learn that quality from you. I enjoyed reading your post, and story. I now understand the history behind your username, davethe bear. Thank You for sharing.....
Des
I am honored to meet such a truly unique individual. Your honest and open post touched my heart. I would love to sit with you in person over a cuppa, and chat with you, on your journey through life. You seem to be at peace with yourself. I hope to learn that quality from you. I enjoyed reading your post, and story. I now understand the history behind your username, davethe bear. Thank You for sharing.....
Des
edit on 9-9-2012 by Destinyone because: (no reason given)
reply to post by davethebear
Davethebear,
You have an amazing story.. I automatically clicked on your thread as I read you shared a health condition connected to Abe Lincoln and Andre the Giant because those are 2 famous figures who were carriers of acromegaly, as I learned when studying about it because my father too is a carrier of this phenomena.
I am extremely interested to learn more about you and hear about your experiences because such a low percentage of the population carries this and I would seriously love to talk more with you about your condition.
I find acromegaly to be one of the most interesting conditions I have ever heard of and come across and have been studying for years and am striving to find the answer of who gets it, and why. I find the symptoms to be very intriguing, and yes it also scares me that if untreated it can lead to premature death and many other debilitating health problems.
You said if we looked at a pictures of you in your 20's and then now, we would see the difference.. That is exactly how my father is, he looks nothing like the man he was and has undergone a lot if physical changes over the years but I would never ever put the physical conditions of acromegaly as ugly, ever. I say unique, and beautiful in their own way. If you ever do have the time or interest to put up your photos, please let me know! Or u2u me!
I have been working on a thread about my father and his condition for some time and actually plan to write a book on his situation some day and learning more about you will do nothing but help me and further my understanding about you guys condition. I also plan on posting his before and after and progression pictures in between, of course only because I've gotten his permission.
I believe acromegaly is fascinating,I feel I will forever strive to find out why it happens to only a few, because I do not believe it is all random.
I like to believe that if way back in olden times, stories that are orally recited and written in history about giants, that you guys would be those guys. The carriers of this fascinating gene, of course that is my imagination taking off but hey a girl can dream. I believe acromegaly and gigantism are the genetic reasoning for fairy tales and legends about giants. That is one reason I find you is fascinating.
I also have found that the protruding jaw, forehead, big extremities, ie hands and feet have made you a piece of art, and a genre of your own. My dad is so interesting looking, that quite a few actually find him attractive from the big jaw to big chest among other things, and I am sure you look good too.
If you don't mind me asking what are the most challenging things you have had to deal with since learning you are a carrier of acromegaly?
& I have always wondered since it is slow progressing, do you necessarily feel the growing changes in your body?
I also know you have a different system of the way your blood flows and works through your body, are you also a carrier of things like reynards phenomena that come with it?
My fathers started with a tumor on his pituitary gland, that caused the growth hormones to cause his body to continuing growing after it should have stopped after puberty.
Another question for you since you said you think it was progressing for years is,
Did doctors ever suspect anything while you were younger? Or did it take until that time at the age of 43 to doctors to even put 2 and 2 together?
I apologize for such a long response I am just so fascinated to read of another ATS member who is a carrier! If I could, I would study you until I couldn't anymore! Lol!
I also take from your post that you are very intelligent, so is my father, I wonder if that has anything to do with this condition. It was almost weird how my father came to learn he had it, when he was teaching, a child's parents of his class walked up to him at a conference walked up to him and shook his hand, then grabbed his hand to look at it, and told him to stick his tongue out (weird I know) and automatically said I believe you are a carrier and set up an appointment, thank goodness because if not we may never have found the tumor on his brain.
Do you realize just how interesting you are? You are one of the few in this world (few of course I mean very low in numbers left out of how many people are here on this earth) who carry this 'giant gene'?
What has been the most challenging part of your condition?
Do you feel you were random selection or do you believe there was tinkering with your DNA somewhere along the line? (another weird question I know)
Are you upset you are a carrier, since it does have its down side health wise? Or are you okay with it?
You are a modern day giant in my eyes and I find that so interesting...
However I do feel for you and your issues health wise from the condition, coming from a girl who has watched her father grow
Davethebear,
You have an amazing story.. I automatically clicked on your thread as I read you shared a health condition connected to Abe Lincoln and Andre the Giant because those are 2 famous figures who were carriers of acromegaly, as I learned when studying about it because my father too is a carrier of this phenomena.
I am extremely interested to learn more about you and hear about your experiences because such a low percentage of the population carries this and I would seriously love to talk more with you about your condition.
I find acromegaly to be one of the most interesting conditions I have ever heard of and come across and have been studying for years and am striving to find the answer of who gets it, and why. I find the symptoms to be very intriguing, and yes it also scares me that if untreated it can lead to premature death and many other debilitating health problems.
You said if we looked at a pictures of you in your 20's and then now, we would see the difference.. That is exactly how my father is, he looks nothing like the man he was and has undergone a lot if physical changes over the years but I would never ever put the physical conditions of acromegaly as ugly, ever. I say unique, and beautiful in their own way. If you ever do have the time or interest to put up your photos, please let me know! Or u2u me!
I have been working on a thread about my father and his condition for some time and actually plan to write a book on his situation some day and learning more about you will do nothing but help me and further my understanding about you guys condition. I also plan on posting his before and after and progression pictures in between, of course only because I've gotten his permission.
I believe acromegaly is fascinating,I feel I will forever strive to find out why it happens to only a few, because I do not believe it is all random.
I like to believe that if way back in olden times, stories that are orally recited and written in history about giants, that you guys would be those guys. The carriers of this fascinating gene, of course that is my imagination taking off but hey a girl can dream. I believe acromegaly and gigantism are the genetic reasoning for fairy tales and legends about giants. That is one reason I find you is fascinating.
I also have found that the protruding jaw, forehead, big extremities, ie hands and feet have made you a piece of art, and a genre of your own. My dad is so interesting looking, that quite a few actually find him attractive from the big jaw to big chest among other things, and I am sure you look good too.
If you don't mind me asking what are the most challenging things you have had to deal with since learning you are a carrier of acromegaly?
& I have always wondered since it is slow progressing, do you necessarily feel the growing changes in your body?
I also know you have a different system of the way your blood flows and works through your body, are you also a carrier of things like reynards phenomena that come with it?
My fathers started with a tumor on his pituitary gland, that caused the growth hormones to cause his body to continuing growing after it should have stopped after puberty.
Another question for you since you said you think it was progressing for years is,
Did doctors ever suspect anything while you were younger? Or did it take until that time at the age of 43 to doctors to even put 2 and 2 together?
I apologize for such a long response I am just so fascinated to read of another ATS member who is a carrier! If I could, I would study you until I couldn't anymore! Lol!
I also take from your post that you are very intelligent, so is my father, I wonder if that has anything to do with this condition. It was almost weird how my father came to learn he had it, when he was teaching, a child's parents of his class walked up to him at a conference walked up to him and shook his hand, then grabbed his hand to look at it, and told him to stick his tongue out (weird I know) and automatically said I believe you are a carrier and set up an appointment, thank goodness because if not we may never have found the tumor on his brain.
Do you realize just how interesting you are? You are one of the few in this world (few of course I mean very low in numbers left out of how many people are here on this earth) who carry this 'giant gene'?
What has been the most challenging part of your condition?
Do you feel you were random selection or do you believe there was tinkering with your DNA somewhere along the line? (another weird question I know)
Are you upset you are a carrier, since it does have its down side health wise? Or are you okay with it?
You are a modern day giant in my eyes and I find that so interesting...
However I do feel for you and your issues health wise from the condition, coming from a girl who has watched her father grow
reply to post by Katharos62191
Cont..
Grow to enormous sizes and deal with the health issues it brings about.
Once again I apologize for such a long reply I am just so interested to learn more about you and your story!
Do you suffer any serious debilitating health problems from this condition?
You are truly fascinating and I am very happy and intrigued to find and acromegaly ATSer!!!
My father also struggles with the deep voice from the changing of the vocal chords you stated and large everything of course, except his legs, so when everything else grew, his legs stayed the same causing him to look distorted..
I do wish you the best and tell you there is hope for a long healthy life as an acromegaly carrier, just interesting and challenging! I would love to read anymore about you that you'd like to share! Please do!
Kudos to you and your strength dealing with such a condition that so few can relate with!
Cont..
Grow to enormous sizes and deal with the health issues it brings about.
Once again I apologize for such a long reply I am just so interested to learn more about you and your story!
Do you suffer any serious debilitating health problems from this condition?
You are truly fascinating and I am very happy and intrigued to find and acromegaly ATSer!!!
My father also struggles with the deep voice from the changing of the vocal chords you stated and large everything of course, except his legs, so when everything else grew, his legs stayed the same causing him to look distorted..
I do wish you the best and tell you there is hope for a long healthy life as an acromegaly carrier, just interesting and challenging! I would love to read anymore about you that you'd like to share! Please do!
Kudos to you and your strength dealing with such a condition that so few can relate with!
edit on 9-9-2012 by Katharos62191 because: (no reason given)
reply to post by Katharos62191
Just a few of the other complications that I now suffer with are:-
Severe headaches, Arthritis and carpal tunnel syndrome, Enlarged heart, Hypertension, Diabetes mellitus, Heart failure, Kidney failure, problem with vision, memory loss, apathy, mood swings, tiredness, arthritis and severe depression…
As things stand at the moment I have gone from being quite an active person to a person who spends most of the time lying down and haven’t got the energy to do very much. I am not working at the moment; I was a teacher for 17 years previously, but now I am unable to focus, mind swings from one extreme to the other and looks as though I may never be able to teach again, well not in a classroom setting anyway.
^^ quote ^^
You are VERY strong and I commend you for that, kidney failure, vision problems, tiredness arthritis among many of the things you stated my father suffer with too.
I admire your strength and want you to know just how strong you are...
Also it is fascinating you were also a teacher. I do hope you stay strong with all of these ailments, I am rooting for you!
Also I wonder because of how familiar your story is to my fathers regarding your tumor, after several surgeries there is still a chance his tumor could grow back, they said they could never fully take it all out.. Is it even possible to fully get rid of? I wonder.. That is such a familiar feeling reading that..
P.S. So sorry for blowing up your thread.. You are just very interesting to me, I want to learn as much as I can about acromegaly, why and how it happens, and how it effects you physically and mentally..
Just a few of the other complications that I now suffer with are:-
Severe headaches, Arthritis and carpal tunnel syndrome, Enlarged heart, Hypertension, Diabetes mellitus, Heart failure, Kidney failure, problem with vision, memory loss, apathy, mood swings, tiredness, arthritis and severe depression…
As things stand at the moment I have gone from being quite an active person to a person who spends most of the time lying down and haven’t got the energy to do very much. I am not working at the moment; I was a teacher for 17 years previously, but now I am unable to focus, mind swings from one extreme to the other and looks as though I may never be able to teach again, well not in a classroom setting anyway.
^^ quote ^^
You are VERY strong and I commend you for that, kidney failure, vision problems, tiredness arthritis among many of the things you stated my father suffer with too.
I admire your strength and want you to know just how strong you are...
Also it is fascinating you were also a teacher. I do hope you stay strong with all of these ailments, I am rooting for you!
Also I wonder because of how familiar your story is to my fathers regarding your tumor, after several surgeries there is still a chance his tumor could grow back, they said they could never fully take it all out.. Is it even possible to fully get rid of? I wonder.. That is such a familiar feeling reading that..
P.S. So sorry for blowing up your thread.. You are just very interesting to me, I want to learn as much as I can about acromegaly, why and how it happens, and how it effects you physically and mentally..
edit on 9-9-2012 by Katharos62191 because: (no reason given)
Pleased to meet you, enjoy your posts on Song Game . You have the love of a good woman and an outlet for your creative juices, you are home. Many
blessings! Thank you for allowing us into who you are, I am touched by your faith in us.
Originally posted by Destinyone
reply to post by davethebear
I am honored to meet such a truly unique individual. Your honest and open post touched my heart. I would love to sit with you in person over a cuppa, and chat with you, on your journey through life. You seem to be at peace with yourself. I hope to learn that quality from you. I enjoyed reading your post, and story. I now understand the history behind your username, davethe bear. Thank You for sharing.....
Des
edit on 9-9-2012 by Destinyone because: (no reason given)
Thank you for your kind words Des..........I would love to chat over a cuppa some day, that would be good.....you never know what is around the corner................believe it!!!
cheers davethebear
reply to post by Katharos62191
Wow Katharos, you certainly blew me out of the water with all that you have written so far on this thread....
Your understanding and knowledge of something that hardly anybody else knows about has astounded me......
I wanted to post my story with the hope that the condition of Acromegaly would reach somebody, somewhere, but to have a reply in such a short space of time from an ATS member who's father has the same health condition out of all the millions of people in the world, well what can I say, AaAAAAAAAAAAAAAAHH.....Just crazy.......
I will write more to you in a little while and answer all the questions you would like answered in your posts so far....I am just off to bed world.......
Take care
Davethebear
Wow Katharos, you certainly blew me out of the water with all that you have written so far on this thread....
Your understanding and knowledge of something that hardly anybody else knows about has astounded me......
I wanted to post my story with the hope that the condition of Acromegaly would reach somebody, somewhere, but to have a reply in such a short space of time from an ATS member who's father has the same health condition out of all the millions of people in the world, well what can I say, AaAAAAAAAAAAAAAAHH.....Just crazy.......
I will write more to you in a little while and answer all the questions you would like answered in your posts so far....I am just off to bed world.......
Take care
Davethebear
Originally posted by Iamschist
Pleased to meet you, enjoy your posts on Song Game . You have the love of a good woman and an outlet for your creative juices, you are home. Many blessings! Thank you for allowing us into who you are, I am touched by your faith in us.
Thanks for your kind words.................and going by the Song Game you also seem to have quite a good taste in music....haha
Thanks again
davethebear
I commend you for your thread, very brave.
I don't have or know anyone who has acromegaly, although I have heard of it. (it's a hobby of mine-medical stuff.)
But my whole family has a rare disease called Ehlers Danlos Syndrome (EDS) including my hubby.
Basically it's where our joints come out and most days we are in pain.
I have also heard a theory that Abraham Lincoln had Marfans, which is one up from EDS. But It's more likely acromegaly.
Good intro thread. Starred.
I don't have or know anyone who has acromegaly, although I have heard of it. (it's a hobby of mine-medical stuff.)
But my whole family has a rare disease called Ehlers Danlos Syndrome (EDS) including my hubby.
Basically it's where our joints come out and most days we are in pain.
I have also heard a theory that Abraham Lincoln had Marfans, which is one up from EDS. But It's more likely acromegaly.
Good intro thread. Starred.
Originally posted by AriesJedi
I commend you for your thread, very brave.
I don't have or know anyone who has acromegaly, although I have heard of it. (it's a hobby of mine-medical stuff.)
But my whole family has a rare disease called Ehlers Danlos Syndrome (EDS) including my hubby.
Basically it's where our joints come out and most days we are in pain.
I have also heard a theory that Abraham Lincoln had Marfans, which is one up from EDS. But It's more likely acromegaly.
Good intro thread. Starred.
Well AriesJedi, you have certainly gave me something else to look into, I have never heard of Ehlers Danlos Syndrome before, so there is some reading for me. Never ends on here does it with the things you pick up on a daily basis?
Thanks again
davethebear
Dear DaveTheBear:
Thank-you for opening a window unto your world to connect to us. Your honest, candid approach and strong writing skills made for a fascinating read of an already interesting topic. I've known of the condition, though not by name.
I have a question-- what percentage of people with (I already forgot the name of it, sorry!) ...what percentage are women? I'm asking this because of my sister. She is now 54, but when we were growing up, she suddenly (it seemed) began to grow taller than me and my other sisters. And now that you mention it, her feet were large, her hands, and even her head seemed larger. Also, she complained of being tired. (I remember my mother fussing at her for being lazy sometimes.) This was all before the age of 18, but in late childhood. Then, when she was 17, my mother expressed concern to the doctor that she had not begun her menstrual cycle. He referred her to an endocrinologist who, through a series of tests, determined that my sister had a tumor on/in her pituitary gland. He referred her to a surgeon.
The surgeon planned to go through the nasal canal, just as you described; however, tests showed that the tumor had grown rapidly in the space of a few months, so the nurses came into her room and shaved her beautiful long, brunette hair completely off so that the surgeon could cut into her skull and remove her entire pituitary gland. She has a scar along her hairline, from ear to ear almost. (This was back in 1978. I feel certain laser surgery could be used in her case today.) Since the removal of her pituitary, she has had to take medicine daily to make up for the hormones she is not getting from that gland. I remember them saying that she did not need to take the growth hormone because she 'had her height' already whereas a young child would still need that hormone.
Looking back, her rate of change became normal after that. She still has somewhat larger hands, feet and head than my other sisters and myself, and she is taller than any of us, but that was already true at age 18 when the surgery took place. Reading your very detailed post has made me wonder... did my sister suffer from this condition up until the surgery? I used to think they cheated her by taking out the whole gland when they were supposed to remove just the tumor. (She could never have children.) Now I am left wondering if they saved her life.
You mentioned a specific kind of tumor. I do not know what kind of tumor she had-- just that it was not malignant and that, according to the surgeon, it grew to engulf her pituitary, rendering the organ useless, so they removed the entire thing.
I am happy to say she is alive and well. Also she is beautiful, smart, intuitive, and very talented. (She and I both love to paint and write, like you!)
Thank-you for opening a window unto your world to connect to us. Your honest, candid approach and strong writing skills made for a fascinating read of an already interesting topic. I've known of the condition, though not by name.
I have a question-- what percentage of people with (I already forgot the name of it, sorry!) ...what percentage are women? I'm asking this because of my sister. She is now 54, but when we were growing up, she suddenly (it seemed) began to grow taller than me and my other sisters. And now that you mention it, her feet were large, her hands, and even her head seemed larger. Also, she complained of being tired. (I remember my mother fussing at her for being lazy sometimes.) This was all before the age of 18, but in late childhood. Then, when she was 17, my mother expressed concern to the doctor that she had not begun her menstrual cycle. He referred her to an endocrinologist who, through a series of tests, determined that my sister had a tumor on/in her pituitary gland. He referred her to a surgeon.
The surgeon planned to go through the nasal canal, just as you described; however, tests showed that the tumor had grown rapidly in the space of a few months, so the nurses came into her room and shaved her beautiful long, brunette hair completely off so that the surgeon could cut into her skull and remove her entire pituitary gland. She has a scar along her hairline, from ear to ear almost. (This was back in 1978. I feel certain laser surgery could be used in her case today.) Since the removal of her pituitary, she has had to take medicine daily to make up for the hormones she is not getting from that gland. I remember them saying that she did not need to take the growth hormone because she 'had her height' already whereas a young child would still need that hormone.
Looking back, her rate of change became normal after that. She still has somewhat larger hands, feet and head than my other sisters and myself, and she is taller than any of us, but that was already true at age 18 when the surgery took place. Reading your very detailed post has made me wonder... did my sister suffer from this condition up until the surgery? I used to think they cheated her by taking out the whole gland when they were supposed to remove just the tumor. (She could never have children.) Now I am left wondering if they saved her life.
You mentioned a specific kind of tumor. I do not know what kind of tumor she had-- just that it was not malignant and that, according to the surgeon, it grew to engulf her pituitary, rendering the organ useless, so they removed the entire thing.
I am happy to say she is alive and well. Also she is beautiful, smart, intuitive, and very talented. (She and I both love to paint and write, like you!)
I knew a man growing up who had this. He lived well into his 70s (with the biggest head & hands I'd ever seen before!) and died of an unrelated
illness.
So here's to not being limited by any diagnosis - and best wishes to you!
So here's to not being limited by any diagnosis - and best wishes to you!
reply to post by davethebear
Touching post my friend.
I believe your best bet to remove the tumor with no side affects would be with the use of a sonic endoscope where the 'sound' vibration kills the tumor naturally while leaving the pituitary gland (very sensitive organ) intact and unharmed. The endoscope would allow the doctor to focus the sonic wave/frequency at just the Right angle to 'dissolve' the tumor altogether while leaving the pituitary gland intact/unharmed.
.
This will work though you may have difficulty finding a doctor whom can do this let alone afford it. It is my hope that with this knowledge you may find your way. I will pray for your recovery and take care.
Touching post my friend.
I believe your best bet to remove the tumor with no side affects would be with the use of a sonic endoscope where the 'sound' vibration kills the tumor naturally while leaving the pituitary gland (very sensitive organ) intact and unharmed. The endoscope would allow the doctor to focus the sonic wave/frequency at just the Right angle to 'dissolve' the tumor altogether while leaving the pituitary gland intact/unharmed.
.
This will work though you may have difficulty finding a doctor whom can do this let alone afford it. It is my hope that with this knowledge you may find your way. I will pray for your recovery and take care.
edit on 11-9-2012 by Bluemoonsine because: (no reason given)
reply to post by Katharos62191
Hi Kitharas……..
Just thought I would answer some questions that were within your posts on my Acromegaly thread……
The most challenging things that I have had to deal with since being diagnosed is probably the main question of , ‘Why me?’ What did I do to deserve this out of all the millions of people in the world?
Then your mind starts to think back over the years as to why I was always tired all the time and had no energy to what I wanted to do, plus the apathy….I was married for fifteen years and my wife always stated that I was lazy and couldn’t be arsed….the thought of mowing the lawn, painting a wall/fence or even fitting a new plug in the wall was too much trouble at certain times, this used to drive me nuts because I hadn’t got the drive to do such simple things…and I didn’t know why……..
Then you have the surgery and how is all that going to take place and how will it effect me. Then the radiation therapy that makes you feel as low as before you were even diagnosed…..
Then all the times you have to go to somewhere clinical such as the endocrine unit, and scans for this and scans for that. Then the monthly injections such as Somatuline Autogel, plus injections for libido, the tests and never ending days of depression and trying to see above the dark hole is most draining on a daily basis….
That’s all I am going into on that question….
No, you don’t feel the growing changes in your body….
I am not familiar with Reynards Phenomena, but I will look into it…..
No doctors ever suspects or mentioned anything to me through all the years. One thing that did happen in about 2004, three years before I was diagnosed was that I had a frozen shoulder so I went to the hospital for an x-ray. After the x-ray I was standing waiting to be seen by a nurse for medication when a doctor just walked by me and said, ‘Have you ever been diagnosed with Acromegaly?’ and then he just walked away with one of his colleagues.
I didn’t have time to respond to his question because the nurse came back to deal with me. Obviously I had no idea what the doctor was talking about, plus I tried my hardest to remember the word Acromegaly, but it just faded from my mind, although I did try and Google things put nothing ever came back with my search…then I just forgot about it until it was mentioned again 3 years later when I was diagnosed..
I suppose I was well pissed off due to the fact that with that particular doctor knowing about Acromegaly he should have told me in a very loud voice to go and get myself tested. I suppose that really made me angry for his lack of knowledge towards me and pointing me in the right direction.
I believe that if a doctor or indeed a member of the public suspect a person may have Acromegaly, then they should say something to be on the safeside…
I suppose the most debilitating part of the condition is my lack of muscle strength, I was a very strong man, I worked in heavy industry for many years, but now at times I can hardly put my socks and pants on. I used to be a roadie for a few bands and I used to carry/lift organs and piano’s up flights of stairs, but now I struggle to sweep the drive with a broom..
The most debilitating part as I said before is the depression and mood swings. The depression is the most wicked and hated illness I believe anybody can have and never goes away. I have tried so many types anti-depressants and other meds and none of them made a difference, some days I am good and other days I am at the bottom of a dark pit and just lie waiting for it to go away. Some days I just try to go to sleep as this is the place where I am more at peace. Suicide has crossed my mind on many occasions as this is the closest I can think of to a long sleep without having to wake up and facing the blackness of the day…
As for mood swings they come and go on a daily basis, I never know from one day to the next how I am going to be. I have always been a very gentle man with a strong personality and charisma as people tell me with a good sense of adventure and humour. But sometimes I can be the devil incarnate…..hahaha….but you just deal with it in the best way you can….
The tumour could grow back, some say within 5 years, others state within10 or even longer. So this has to be looked at every year by brain scans etc to see how things are or are not developing…..I am just glad that it is not genetic and cannot be passed on from one person to another. My son was most pleased of that when he found out…
I have tried to answer any questions that I could see within your posts, some questions overlap and have the same answer so that’s the way I approached it…..
(continued)
Hi Kitharas……..
Just thought I would answer some questions that were within your posts on my Acromegaly thread……
The most challenging things that I have had to deal with since being diagnosed is probably the main question of , ‘Why me?’ What did I do to deserve this out of all the millions of people in the world?
Then your mind starts to think back over the years as to why I was always tired all the time and had no energy to what I wanted to do, plus the apathy….I was married for fifteen years and my wife always stated that I was lazy and couldn’t be arsed….the thought of mowing the lawn, painting a wall/fence or even fitting a new plug in the wall was too much trouble at certain times, this used to drive me nuts because I hadn’t got the drive to do such simple things…and I didn’t know why……..
Then you have the surgery and how is all that going to take place and how will it effect me. Then the radiation therapy that makes you feel as low as before you were even diagnosed…..
Then all the times you have to go to somewhere clinical such as the endocrine unit, and scans for this and scans for that. Then the monthly injections such as Somatuline Autogel, plus injections for libido, the tests and never ending days of depression and trying to see above the dark hole is most draining on a daily basis….
That’s all I am going into on that question….
No, you don’t feel the growing changes in your body….
I am not familiar with Reynards Phenomena, but I will look into it…..
No doctors ever suspects or mentioned anything to me through all the years. One thing that did happen in about 2004, three years before I was diagnosed was that I had a frozen shoulder so I went to the hospital for an x-ray. After the x-ray I was standing waiting to be seen by a nurse for medication when a doctor just walked by me and said, ‘Have you ever been diagnosed with Acromegaly?’ and then he just walked away with one of his colleagues.
I didn’t have time to respond to his question because the nurse came back to deal with me. Obviously I had no idea what the doctor was talking about, plus I tried my hardest to remember the word Acromegaly, but it just faded from my mind, although I did try and Google things put nothing ever came back with my search…then I just forgot about it until it was mentioned again 3 years later when I was diagnosed..
I suppose I was well pissed off due to the fact that with that particular doctor knowing about Acromegaly he should have told me in a very loud voice to go and get myself tested. I suppose that really made me angry for his lack of knowledge towards me and pointing me in the right direction.
I believe that if a doctor or indeed a member of the public suspect a person may have Acromegaly, then they should say something to be on the safeside…
I suppose the most debilitating part of the condition is my lack of muscle strength, I was a very strong man, I worked in heavy industry for many years, but now at times I can hardly put my socks and pants on. I used to be a roadie for a few bands and I used to carry/lift organs and piano’s up flights of stairs, but now I struggle to sweep the drive with a broom..
The most debilitating part as I said before is the depression and mood swings. The depression is the most wicked and hated illness I believe anybody can have and never goes away. I have tried so many types anti-depressants and other meds and none of them made a difference, some days I am good and other days I am at the bottom of a dark pit and just lie waiting for it to go away. Some days I just try to go to sleep as this is the place where I am more at peace. Suicide has crossed my mind on many occasions as this is the closest I can think of to a long sleep without having to wake up and facing the blackness of the day…
As for mood swings they come and go on a daily basis, I never know from one day to the next how I am going to be. I have always been a very gentle man with a strong personality and charisma as people tell me with a good sense of adventure and humour. But sometimes I can be the devil incarnate…..hahaha….but you just deal with it in the best way you can….
The tumour could grow back, some say within 5 years, others state within10 or even longer. So this has to be looked at every year by brain scans etc to see how things are or are not developing…..I am just glad that it is not genetic and cannot be passed on from one person to another. My son was most pleased of that when he found out…
I have tried to answer any questions that I could see within your posts, some questions overlap and have the same answer so that’s the way I approached it…..
(continued)
(Continued from above)
Where do you live Kitharas? I don’t suppose you are in the UK are you? It would be nice to meet up with you and I would dearly love to meet your father. I don’t get much chance to meet with other Acromegliacs and sometimes it would be nice to discuss with another similarities on many different levels about coping in life in general and coping with the illness on a daily basis….
I would like to write a bit more but I am pretty tired today, but please don’t be scared to ask whatever you want, I don’t really care, but you are not having my bank pin number……hahaha
I wish both you and your father well…..
Cheers
davethebear
ps………I am not religious in any way, but I believe that Goliath from the bible had Acromegaly. Isn’t it funny how the pebble that David hit him with from his sling was in the centre of the forehead which is not too far away from the Pituitary Gland….makes you think………….
Where do you live Kitharas? I don’t suppose you are in the UK are you? It would be nice to meet up with you and I would dearly love to meet your father. I don’t get much chance to meet with other Acromegliacs and sometimes it would be nice to discuss with another similarities on many different levels about coping in life in general and coping with the illness on a daily basis….
I would like to write a bit more but I am pretty tired today, but please don’t be scared to ask whatever you want, I don’t really care, but you are not having my bank pin number……hahaha
I wish both you and your father well…..
Cheers
davethebear
ps………I am not religious in any way, but I believe that Goliath from the bible had Acromegaly. Isn’t it funny how the pebble that David hit him with from his sling was in the centre of the forehead which is not too far away from the Pituitary Gland….makes you think………….
edit on 11-9-2012 by davethebear because: (no reason given)
edit on 11-9-2012 by davethebear because:
spelling
Originally posted by davethebear
ps………I am not religious in any way, but I believe that Goliath from the bible had Acromegaly. Isn’t it funny how the pebble that David hit him with from his sling was in the centre of the forehead which is not too far away from the Pituitary Gland….makes you think………….
That is a fascinating theory, I must say. Considering what you have said about your feelings of lethargy and muscle weakness, if Goliath did in fact have Acromegaly, it would have been easier for David to prevail, and thus he would not be such a hero in that story after all.
Now, you said that if someone suspects Acromegaly in another person, they should say something. I agree wholeheartedly-- about that and about any info that could potentially better a person's life/situation. So I throw this out to you (and all) for what it is worth...
Did you know that tumors flourish in an acidic environment, and are inhibited by alkaline? The modern human diet creates a frighteningly acidic blood pH level, so it is no wonder cancer and other tumors are alive and well. That sounds all so depressing (like you need more depression, right?) but there is a proven and inexpensive way to safely regulate your blood pH and inhibit tumor growth. MANY Sources
So I had uterine fibroids, so large that doctors wanted to remove my uterus. As I wish to leave this world with everything I came here with, wherever possible, I suffered years of pain and heavy menstrual (sorry if that is TMI) until our beloved Internet came along and I searched for an alternative.
Wow, is all I can say. These tumors did not shrink overnight, but one effect of drinking 1/2 teaspoon of baking soda in water was IMMEDIATE... Energy! (Yes, I thought you would like that!) It truly oxygenates the blood and you can suddenly feel it with each breath you take after you drink this simple, cheap, safe concoction.
If you are looking to prevent tumor growth, baking soda (sodium bicarbonate) is your new-best-friend!!! And if nothing else, I, my husband and my daughter can attest to the fact of immediate energy following the ingestion of a glass of this. I now drink this 2 - 3 times a day will no ill effects and many positive one.
Like telling someone they may have Acromegaly, I felt it was my duty to share this with you.
Kindest Regards,
New_Here
Originally posted by new_here
Originally posted by davethebear
ps………I am not religious in any way, but I believe that Goliath from the bible had Acromegaly. Isn’t it funny how the pebble that David hit him with from his sling was in the centre of the forehead which is not too far away from the Pituitary Gland….makes you think………….
That is a fascinating theory, I must say. Considering what you have said about your feelings of lethargy and muscle weakness, if Goliath did in fact have Acromegaly, it would have been easier for David to prevail, and thus he would not be such a hero in that story after all.
Now, you said that if someone suspects Acromegaly in another person, they should say something. I agree wholeheartedly-- about that and about any info that could potentially better a person's life/situation. So I throw this out to you (and all) for what it is worth...
Did you know that tumors flourish in an acidic environment, and are inhibited by alkaline? The modern human diet creates a frighteningly acidic blood pH level, so it is no wonder cancer and other tumors are alive and well. That sounds all so depressing (like you need more depression, right?) but there is a proven and inexpensive way to safely regulate your blood pH and inhibit tumor growth. MANY Sources
So I had uterine fibroids, so large that doctors wanted to remove my uterus. As I wish to leave this world with everything I came here with, wherever possible, I suffered years of pain and heavy menstrual (sorry if that is TMI) until our beloved Internet came along and I searched for an alternative.
Wow, is all I can say. These tumors did not shrink overnight, but one effect of drinking 1/2 teaspoon of baking soda in water was IMMEDIATE... Energy! (Yes, I thought you would like that!) It truly oxygenates the blood and you can suddenly feel it with each breath you take after you drink this simple, cheap, safe concoction.
If you are looking to prevent tumor growth, baking soda (sodium bicarbonate) is your new-best-friend!!! And if nothing else, I, my husband and my daughter can attest to the fact of immediate energy following the ingestion of a glass of this. I now drink this 2 - 3 times a day will no ill effects and many positive one.
Like telling someone they may have Acromegaly, I felt it was my duty to share this with you.
Kindest Regards,
New_Here
Thanks new_here.........................I shall certainly have a look into the baking soda idea and tumours, quite fascinating and oh so much cheaper then other medicinal products...haha..............but seriously thanks for the info, I will let you know how I get on.........I am just wondering about what it tastes like........
cheers
davethebear
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