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My son diagnosed with Pituitary Adenoma

Thu, 11/22/2007 - 13:09
Hello, my name is Susana. My son, Joey, 14 years old, was diagnosed with having Absence Seizures due to Generalized Epilepsy after a near-drowning accident in August 2007. A brain scan MRI also revealed a pituitary tumor. Joey's neurologist referred him to an endocrinologist who confirmed Joey has a pituitary adenoma. The doctors will do another MRI for a re-check in four months, but say not to worry at this point. The endocrinologist said that if Joey's MRI were that of an adult, they'd have to begin treatment immediately, but because Joey is in puberty, we should wait for signs and symptoms (including gigantism, exaggerated cave-man-like facial features, enlarged hands, darkening of the skin, vision problems, increasing blindness, etc.). The doctor refused to continue naming symptoms so he wouldn't give Joey nightmares. He added that it's rare for the tumor to become a concern because it often goes away in adolescents. At this point, neither doctor thinks the tumor is related to the seizures. Has anyone else with Epilepsy ever been diagnosed with a Pituitary Adenoma? Has anyone else heard of benign tumors "vanishing" during puberty? I'm concerned about following the doctors' approach to just "wait and see" if and how the tumor develops. It may be rare for it to cause any harm, but I thought Epilepsy was rare, too. Joey is adamant that he will never allow anyone to operate on his brain! Any advice is appreciated.

Comments

Grand mal seizures due to Pituitary Adenoma

Submitted by mmliucci on Thu, 2008-03-13 - 18:40
Hi Susana - My name is Midori and I have a 13 year old girl who has been having grand mal seizures since 11/26/07.  I requested paperwork from the hospital where she was treated so that I can change neurologists, and noticed that the paperwork referred to a mass on the pituitary fossa and a doctor's note requesting an MRI with slices of the pituitary.  Needless to say, this was not done since the doctors do not communicate.  I spoke to her pediatrician and he in turn spoke to the radiologist who did confirm that they think it is a pituitary adenoma.  She will be going for an MRI with the slices on Saturday.  I strongly believe that this tumor is causing her seizures.  Please let me know how your son is doing.  Thanks.  Midori

Re: My son diagnosed with Pituitary Adenoma

Submitted by ROCKNROLL on Thu, 2008-03-27 - 23:52

HI SUE, I HAD SEVERAL PITUITARY ADINOMAS AND A GREY MUSHY AREA OF THE PITUITARY, WHICH WAS FOUND WHEN I HAD SURGERY IN 1977. I WAS TOLD AT THE TIME THAT I HAD PROBABLY HAD THE TUMORS ALL MY LIFE. I HAVE LEARNED THAT A VAST MAJORITY  OF PEOPLE HAVE PITUITARY TUMORS AND NEVER KNOW IT. ALSO, FOR THE MOST PART, THEY ARE ALMOST ALWAYS BENIGN PITUITARY ADIMONAS (TUMORS)  AND THERE IS NO NEED FOR SURGERY. HAVING HAD THE SURGERY, AND HAVING EXPERIENCED NO CHANGES IN MY HEALTH, I WOULD COMPLETELY AGREE WITH THE DOCS ON THIS ONE. UNLESS THE ADINOMA CAUSES A PROBLEM, JOEY CAN LIVE HIS ENTIRE LIFE WITHOUT ONE SINGLE PROBLEM FROM THAT ADINOMA. I UNDERSTAND HOW FRIGHTENING IT CAN BE TO HEAR NEWS LIKE THAT. MY FIRST THOUGHT WAS GET THOSE OUT OF MY HEAD. HINDSIGHT, I WOULD NOT HAVE HAD THE SURGERY. THE PROCEEDURE THEY WERE USING THEN CAUSED ME A GREAT DEAL OF PROBLEMS AND I HAVE BEEN PLAGUED WITH ENDOCRINE AND ALLERGY PROBLEMS SINCE THEN. OF COURSE, THEY HAVE NOW HAD MANY YEARS TO LEARN MORE ABOUT THE PITUITARY, ITS FUNCTIONS AND THE NECESSITY FOR SURGERY. I HAD SEIZURES AFTER THE SURGERY, NOT BEFORE. FOR HIS SAKE, I WOULD DEFINITELY LISTEN TO THE DOCS. LIKE I SAID, HE CAN HAVE IT HIS ENTIRE LIFE AND NEVER HAVE A PROBLEM BECAUSE IT IS THERE. ALWAYS MAKE SURE YOU GET OPINIONS FROM SEVERAL DOCS BEFORE YOU EVER EMBARK ON ANY SURGERY, ESPECIALLY BRAIN SURGERY.....FROM ONE WHO KNOWS.....GOD BLESS YOU AND JOEY, JAN

HI SUE, I HAD SEVERAL PITUITARY ADINOMAS AND A GREY MUSHY AREA OF THE PITUITARY, WHICH WAS FOUND WHEN I HAD SURGERY IN 1977. I WAS TOLD AT THE TIME THAT I HAD PROBABLY HAD THE TUMORS ALL MY LIFE. I HAVE LEARNED THAT A VAST MAJORITY  OF PEOPLE HAVE PITUITARY TUMORS AND NEVER KNOW IT. ALSO, FOR THE MOST PART, THEY ARE ALMOST ALWAYS BENIGN PITUITARY ADIMONAS (TUMORS)  AND THERE IS NO NEED FOR SURGERY. HAVING HAD THE SURGERY, AND HAVING EXPERIENCED NO CHANGES IN MY HEALTH, I WOULD COMPLETELY AGREE WITH THE DOCS ON THIS ONE. UNLESS THE ADINOMA CAUSES A PROBLEM, JOEY CAN LIVE HIS ENTIRE LIFE WITHOUT ONE SINGLE PROBLEM FROM THAT ADINOMA. I UNDERSTAND HOW FRIGHTENING IT CAN BE TO HEAR NEWS LIKE THAT. MY FIRST THOUGHT WAS GET THOSE OUT OF MY HEAD. HINDSIGHT, I WOULD NOT HAVE HAD THE SURGERY. THE PROCEEDURE THEY WERE USING THEN CAUSED ME A GREAT DEAL OF PROBLEMS AND I HAVE BEEN PLAGUED WITH ENDOCRINE AND ALLERGY PROBLEMS SINCE THEN. OF COURSE, THEY HAVE NOW HAD MANY YEARS TO LEARN MORE ABOUT THE PITUITARY, ITS FUNCTIONS AND THE NECESSITY FOR SURGERY. I HAD SEIZURES AFTER THE SURGERY, NOT BEFORE. FOR HIS SAKE, I WOULD DEFINITELY LISTEN TO THE DOCS. LIKE I SAID, HE CAN HAVE IT HIS ENTIRE LIFE AND NEVER HAVE A PROBLEM BECAUSE IT IS THERE. ALWAYS MAKE SURE YOU GET OPINIONS FROM SEVERAL DOCS BEFORE YOU EVER EMBARK ON ANY SURGERY, ESPECIALLY BRAIN SURGERY.....FROM ONE WHO KNOWS.....GOD BLESS YOU AND JOEY, JAN

Re: My son diagnosed with Pituitary Adenoma

Submitted by katufts87 on Tue, 2009-12-01 - 14:07

It's nice to see that others have been left in the dark about this as well! I have experienced extreme fatigue for a good portion of my life. I'm 22 years old and have never felt youthful and full of energy as many say I should. I just ignored it always thinking I was lazy. Finally I went to the doctor and discovered I had a pituitary gland tumor. But my neurologist keeps wanting to treat me for seizures and thinks that the tumor isn't a problem because it's so small. But after doing research on my own, I'm starting to learn that the tumor could be the cause of the seizures and possible other symptoms I have experienced. I.e. fatigue, clumsiness, short term memmory issues, slight vision problems. I'm about to go crazy paying all the copays and testing fees and taking different drugs for depression and epilepsy. What is wrong with me!!

 Here are a link I think may be helpful to others. If anyone has any insight about what I'm dealing with PLEASE share! I'm sick of wasting my life away hoping to feel better.

 

http://www.medicalnewstoday.com/articles/23612.php

 

It's nice to see that others have been left in the dark about this as well! I have experienced extreme fatigue for a good portion of my life. I'm 22 years old and have never felt youthful and full of energy as many say I should. I just ignored it always thinking I was lazy. Finally I went to the doctor and discovered I had a pituitary gland tumor. But my neurologist keeps wanting to treat me for seizures and thinks that the tumor isn't a problem because it's so small. But after doing research on my own, I'm starting to learn that the tumor could be the cause of the seizures and possible other symptoms I have experienced. I.e. fatigue, clumsiness, short term memmory issues, slight vision problems. I'm about to go crazy paying all the copays and testing fees and taking different drugs for depression and epilepsy. What is wrong with me!!

 Here are a link I think may be helpful to others. If anyone has any insight about what I'm dealing with PLEASE share! I'm sick of wasting my life away hoping to feel better.

 

http://www.medicalnewstoday.com/articles/23612.php

 

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