My Unknown Health Condition Connected to Abraham Lincoln and Andre the Giant.......

reply to post by davethebear


Davethebear,
I am thankful for the time you took to answer my questions! Was scared I was going to scare you away with my eagerness! I just feel the same, it is so unlikely to meet another with this condition and when I saw your post I literally just lit up!

I STILL wonder to this day, the 'why me' question, the 'Why my father out of the millions'?? So I know the exact feeling of wondering the answer to that question.

A few other things we can completely relate to you on..

Apathy- my father used to be a very active person, cycled in races, and stayed on the bike at the gym and lifted weights on a weekly basis. When this was onset, it was a hugely drastic change and we all noticed it, and felt for him, so I feel for you. He could not get out of his recliner, did not even want to go to places as close as the store, and yes another thing you mentioned, couldn't even make himself want to or have the energy to do things around the house which was such a huge huge change, I was young and he used to be the one who would take me to all my ball games, he could not even find the strength or will to make himself go watch me play anymore.

The depression was, and still is uncontrollable. It does come and go, but when it is here, it hurts my heart. Especially since things that I mentioned above helped attribute to it.. He could not work out anymore and be active which used to help release endorphins to stay happy, that was not even in the cards anymore. Depression has got to be one of the hardest things he has struggled with even over a lot of the physical aspects. Not to mention the older he gets, the worse it gets. We have not yet found a way to medicate it or treat it as I do not even know if there is a way, so you would laugh at how hard I try to come around and just find any way I can to make him laugh or to have in depth discussions with him that always keep his mind off of feeling that way.

The weekly and monthly shots and treatments, boy is it a toll on his patience and wallet! He literally has to go have a shot (in the rear end lol) every 2 weeks! And there are many other shots and treatments he has to have and be monitored for on a monthly basis! Some shots the needle is the size of a think toothpick he tells me, it hurts to think about! He said he has now had to deal with it so long he is used to it, but, He has stated to me that 'If he did not have such a "hot" nurse, it would make it a lot harder to go every other week!' Ha, that is just my dads personality, and actually, I saw her, she is pretty cute! Lol! I again commend you for your strength having to do that so often in life, a lot of people will never know the amount of time you guys will have to spend in a doctors office.

You have got to be one of the strongest men I have come to learn about. Radiation therapy is EXTREMELY hard and taxing, physically and mentally and in every way you could think of! You are so strong for going through that. You are a trooper! It is hard to know you are doing that, yet there is still a chance it could come back! Especially since little things, actually big things like the fact your growth hormone level could take 5 to 10 years to even return back to normal after the radiation therapy! As if the levels weren't already abnormal anyways! You are so so so strong for going through that, I wish I could hug you for that!

Unfortunately, and I hope you haven't had to deal with this, my father broke both of his hips due to acromegaly, long story short, the hip is a ball and socket hinge, as his legs and the balls of his hips continued to grow, the socket which the balls fit into did not grow whatsoever, causing his hips to literally crush from the pressure and abnormal growth pattern. He now has had 2 metal hips replacements, which are causing so many problems and more pain than before, not 5 years ago did he get them, October he is going back to get a new plastic compound type of hip because he is suffering severely from metal poisioning from them, specifically chromium and cobalt poisoning.. Which has made him so so very sick recently, because this poisioning has literally enhanced every single detrimental symptom acromegaly had already brought about..literally enhancing his condition in every way. He can't even walk anymore, it is so sad, I have bought him a cane, but it doesn't help much, since he is so big and the upper body being a lot larger than the lower, it is painful to watch him even attempt to stand and walk..
So if you ever have more trouble with your shoulder or any body part due to acromegaly, steer clear from the metal replacements!!

Sometimes I feel I was brought to ATS for a reason, and reading storied like yours and meeting people such as you makes me know I did not stumble on this site by chance. I immediately told my father I had found another like him, who actually shared some interest of ours. He lit up and automatically read your story, therefore we may have a new ATS member soon here to share the experience! It's so rare to find another with such a familiar story, I am SO thankful!

reply to post by davethebear


Continued..

I feel I, especially my father can relate to you on so so many levels others do not understand about this situation. It is actually refreshing to meet you, it gives my dad some hope he is not alone.

And boy oh boy I feel with your son about being relieved it is not passed down! Even though it is not usually ever passed down to the next generation, I have always been told I am the spitting image of my father (& I know I am and actually embrace it) I have come to inherit such attributes like the large nose and forehead, and chin, my hands and feet are abnormally large for a females, they look like mini versions of my fathers, I have since the age of 15 been able to palm a men's basketball with one hand to give you an idea. We have similial blood patterns and both have excessive perspiration and hormonal imbalances (tmi im sorry) But one thing I got from him I love, a big brain and strange way of thinking! I would never change his looks nor mine for a thing because taking on traits from my father makes me feel closer to him, when the saying 'daddy's little girl' came about, they were talking about the bond people like me and him share. I will forever take care of him and study him and am actually determined to do something with my life that helps patients with acromegaly!

You and him both with the mood swings! It is just good knowing that you really can't control it! Because sometimes Daddy switches as fast as a women! Ha! But I love him just the same!

Also might I just add, you have EVERY right to be angry with that doctor! If He had any knowledge or even thought that 'hey that guy has acromegaly' He should have made it a point to you and made more than a passing effort to educate you on it and suggest you get tested, I just feel that way because of the things it does bring about, that is not something you (especially as a doctor) just make as a passing comment! You address it! Period!

Once again I thank you for posting your story and urge you to continue to write about yourself when you more strength and energy to! Because you will always have a fellows ATSer to discuss it and embrace it every step of the way with you! It is SO great to finally meet another acromegalic! You are so interesting and finally, someone my dad can read stories from and relate to everything and once again not feel alone.
It is uncanny the similarities your stories share even half a world away! Life is funny, isn't it?

Originally posted by davethebear
(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………….

edit on 11-9-2012 by davethebear because: (no reason given)

edit on 11-9-2012 by davethebear because: spelling

I, and my father live in the states! But my mother has a career that takes us all over the world for travel! Also me and my father are almost obsessive about studying our genealogy and are planning a trip to the UK in the future because we are (and our family) actually from Essex! And he has sworn to take me so we can attemp to trace our geneaology back even further! Me and him both have already said we would absolutely love to meet you, to even shake your hand and share stories would make our life's oh so complete, and my father would be so so excited! He has always said about how hard it is never even meeting or seeing someone who has what he has or felt how he has. That is why coming across your story is so refreshing!

P.S. I am not religious either, more spiritual. But ever since I have read the story of David and Goliath and seen how my father had grown, from a young age I never ever doubted that Goliath had Acromegaly, and I will continue to believe so until someone proves me wrong! You even made a great point about how the stone was hit right where the pituitary gland is to take him down, it furthers my point even more and boy is that fascinating to think about!! How cool it is to know or believe stories like yours go back so far. One thing that should always make you feel great no matter how hard times are due to acromegaly, You are a part of history, and a very interesting one! And not many at all, such a small percentage will ever be able to experience or say they were a modern day giant. I will make sure to keep stories like yours and my fathers live on, and don't doubt at all that your doctors are doing the same thing!

reply to post by Katharos62191

Katharos, I think my first post to davethebear got sort of lost in the shuffle-- I was asking about my sister and the surgery she had way back in 1978 where they ended up removing her entire pituitary gland because it became entirely engulfed by a benign tumor. His information made me wonder if she had his condition, before removal of her pituitary. All that aside, it does lead me to a question for you or davethebear either one: Have the doctors ever considered removal of the pituitary gland as a means of stopping the progression of symptoms of this condition? The pituitary is an important gland, but a person can live without it. My sister has been thriving for 35 years since the removal of her pituitary gland. She does have to take medication daily to replace the important hormones she is missing-- but that is nothing compared to what you guys describe in the way of the progression of Acromegaly.

Just wondered if the doctors have ever mentioned removing the pituitary gland entirely? (If that sounds crazy, read my post about my sister- 1st page- and you'll see why I am asking.)

Originally posted by new_here
reply to post by Katharos62191

 

Katharos, I think my first post to davethebear got sort of lost in the shuffle-- I was asking about my sister and the surgery she had way back in 1978 where they ended up removing her entire pituitary gland because it became entirely engulfed by a benign tumor. His information made me wonder if she had his condition, before removal of her pituitary. All that aside, it does lead me to a question for you or davethebear either one: Have the doctors ever considered removal of the pituitary gland as a means of stopping the progression of symptoms of this condition? The pituitary is an important gland, but a person can live without it. My sister has been thriving for 35 years since the removal of her pituitary gland. She does have to take medication daily to replace the important hormones she is missing-- but that is nothing compared to what you guys describe in the way of the progression of Acromegaly.

Just wondered if the doctors have ever mentioned removing the pituitary gland entirely? (If that sounds crazy, read my post about my sister- 1st page- and you'll see why I am asking.)

I apologize for posting so erratically that I caused yours to get mixed in!! I read your post about your sister and it touched me to learn of a women with such similar situations.
I've actually wondered the exact thing you asked, if it would be alright to remove the whole pituitary gland since they could not get the whole tumor removed from it. Knowing your sister had it done and is living fine and actually healthier lets me know it probably could be done, but what I believe is the only reason my fathers tumor could not be completely removed, was the fact the tumor also had grown onto an important artery on the front of the brain(not sure which artery that is, I'll have to look it up) but the danger or injuring that artery could have been fatal! So I have no doubt they might have considered removing the whole thing if the artery hadn't come into play.
Also there is a very similar disease to acromegaly that more women carry, that is so close to acro that it is misdiagnosed quite often, your post reminded me of something called Cushing's Syndrome, have you heard of it?

     Cushing's disease/syndrome is best treated with the surgical removal of the pituitary tumor, usually with a technique called transsphenoidal resection (behind the nose) by a neurosurgeon. Occasionally, the entire pituitary gland will need to be removed or injured in order to cure the Cushing's disease, leaving the person with a deficiency of ACTH and the other pituitary hormones. This can be treated by giving replacement hormones for cortisol, thyroid and gonadal (sex) hormones. Fertility can be restored with special hormonal therapies. If the pituitary tumor cannot be removed, radiation therapy to the pituitary can be used, but the improvement in the Cushing's Syndrome is much slower.
^^ quote^^
This is what your sisters situation made me think of! Although she could still have acromegaly and the removal of the pituitary gland could have helped her light years to keep her from the other symptoms! If not, Cushings Syndrome literally is just a form acromegaly but more found in women than men, it still is about just as rare as acro too. It causes abnormal growth in women's physical features and other things such as organs and tissues!
I am just thankful that whatever your sister did or does have, that the removal of the whole pituitary helped so much!

reply to post by Katharos62191
Thank you for the information-- that answers a lot, and I had heard of Cushings, but did not realize it was in any way related.

Do I understand correctly that neither one of these conditions are of genetic inheritance or predisposition?

There has just simply GOT to be a way to block either the production or the receptors of this wayward growth hormone! Not because of physical appearance-- everyone is beautiful. But because of pain and suffering. I know some have stated they are not religious; nevertheless I DO believe in the power of prayer. Your father and davethebear will be in mine. I do not wish to offend by saying so- it is just my way to show caring!

Originally posted by new_here
reply to post by Katharos62191

 

Do I understand correctly that neither one of these conditions are of genetic inheritance or predisposition?

There has just simply GOT to be a way to block either the production or the receptors of this wayward growth hormone! Not because of physical appearance-- everyone is beautiful. But because of pain and suffering. I know some have stated they are not religious; nevertheless I DO believe in the power of prayer. Your father and davethebear will be in mine. I do not wish to offend by saying so- it is just my way to show caring!

You are correct! These conditions are 'completely random' so to say! Which is what makes them so much more interesting/odd! No one knows why or how people like your sister, my father, and davethebear come about with conditions such as these!

Also- that does not offend at all! Actually, it's flattering! I pray too! Just in a different way Because I also believe in the power of prayer! I thank you so much for caring enough to take the time to pray for my father! It really does mean a lot, you never know, prayer can go along way.