A Pituitary World News interview with esteemed pituitary neurological surgeon Dr. Manish Aghi at University of California, San Francisco on September 24, 2014.
I'm going through this right now, and I was able to get some tests started by physically showing my doctor what my body was doing to me with messed up hormones. I was almost walked out of the office as just "another fat guy doesn't like his manboobs." I've had these left-eye headaches, where it feels like an ice pick directly into your brainstem for up to 10-15 seconds. My estrogen levels, as a male btw, are hundreds of times more than a pregnant female. I progressed into gynecomastia, and now I literally have women's breasts. I produce milk as a male. I've been disregarded and told I'm making things up since I was a child. My hormones are so screwed up since puberty that my brain doesn't function like other peoples - I've developed pseudo-bipolar disorders, depression and anxiety attacks that will hit you for no reason with no triggers and completely incapacitate me. Recently these random attacks would hit me in the middle of almost any activity, and I've never experienced anything like this before, but several times now I've straight up ran away to a room alone, broke down and couldn't stop crying. Over nothing. I'm not sad or thinking about anything particular when it happens or as it is happening, but for some reason it physically hurts me, idk how to really describe it. If you or someone you know might be showing signs or symptoms described in this video or in the comments, I URGE YOU to go get your bloodwork done, specifically hormones like prolactin, cortisol, testosterone, ya know what check it all. Pituitary tumors affect your entire body through the screwing up of your hormones. If there's anyone in this situation feel free to reach out, there's not really a support group. Especially for males - this is extremely humiliating to not be a normal man: no facial hair, no body hair, almost zero testosterone production, overproduction of estrogen, hypogonadism, and even micro-penis and unascended testicles from the abdomen can occur if you had this since childhood untreated like so many other men.
My wife has had Pituitary surgery three times since 2010. The first two through the nose and the third through the skull. Discussed the headaches with the neurosurgeon and his response was, take some Tylenol, there is nothing more i can do. He did suggest that we get a second opinion. He didn't recommend any other doctor locally. Wants us to go to MD Anderson or Mayo clinic. Hard to believe that there are no other doctors we can see here in Dallas.
I am a UK Prolactinoma patient, and have been on Bromocriptine / Cabergoline treatment for 15 years, with a tumour that stubbornly refuses to shrink. An operation has been considered and excluded as a treatment option due to the risk of damage to the Carotid artery around which the tumour has spread. Also, any operation is deemed unlikely to remove sufficient tumour. I have been complaining of complex headaches for at least 10 years, and my Endocrinologists have all said it is not due to the tumour (no evidence of elevated rates above the general population). Can you think of a reason nobody has read the evidence of your research, which is 5 years old? I have even raised it at the National Pituitary Foundation (The UK charity supporting pituitary tumour patients) but told the same thing. Your evidence should be more widely known.
I had a large pituitry tumour de bulked 5 years ago extended crainiotomy. had severe headaches for three years after have had raditherapy and take daily injections to reduce growth hormone only since the radio therapy have headaches become less severe.
Hello Stanford, I have had a pituitary tumor since diagnosed in Rutland Vermont on May 12, 2003. The PC and also Dartmouth neurosurgeons said it was too risky to do transphenoidal and that I would have serious problems. Since living in Burlington Vermont, any time I have complained about the tumor, which is now a macroadenoma, since 2008, noone will do even anything at all here at UVM medical center in Burlington. They have told me not to worry about it, be lucky it has not killed me, or BS that pills will boost sugar levels. I appealed to neurosurgery directly and they had patient advocates call me. Nowhere. THEY WILL NOT DO ANYTHING. I have all types of symptoms in which they said is a mental problem. Lots know here but noone cares or not their problem in Vermont.
Very interesting, I had my tumor in my pituitary removed in 1988, and I still remember today the massive headache I had in recovery. It was nasty and painful but after about six months, Doctor was right no more pain just pills for the rest of my life. I thank God I was lucky the acromegaly I was diagnosed with at a young age.
If your doctor starts giving you the go around or refusing blood work or imaging orders just leave them and find someone else. Took me over 4 doctors to finally get something done. Also it seems doctors are more comfortable working with the same sex patient for some reason.
Great doctor and he has removed two of my brain tumors from the pituitary gland and if not for him my tour's overseas in the military would have more than likely have killed me and the thing that saddens me the most is when I was having a second brain tumor removed from my putitary that was bigger than the last one I had a SPCA no kill animal shelter watch my PTSD and TBI service dog and well I lost my second Dad during this time and after being told once released from the hospital I would be able to get my service dog back and we'll I got out and the SPCA in Goleta CA Santa Barbara CA area animal shelter coordinator Lisa Kenyon adopted my dog out three times last time out of state and forged the animal surrender form and lied to myself my wife and saying we would get the service dog back but there Congress official myself were lied to and during recovery from surgery I lost my dog and my second Dad and I was really ready to give up on my life cause I was told by SPCA they would watch the dog and then they violated municipal code and lied to everyone and then said to me and my wife she wouldn't be giving me my boy back and Lisa Kenyon asked my wife and I if we owned any property or if we could afford the dog so why would she do this need your power and help America please help me with this issue or exposing her dascrimantio lama4120David@gmail.com
Yes I am also going through this headaches pain behind the eye one side are the other hair feels like it’s been pulled all-night tenderness in the front of face and ear ache and tooth ache with drainage down to the stomach and the pressure from the eye never got any better
11:43 I get used get ocular migranes. But now they moved into something different, what i get now is it feels like pressure on the top of my head no real pain just pressure and then i get physically wiped out for 2 days. Lately i've been waking up at night with screaming headaches and I can hear the blood flowing though my ears. And my blood pressure is perfect every time it's been checked.
In 2010 I was diagnosed with pituitary tumor my breast started producing breast milk and always have up to this day. No treatment ever I'm ignored by doctors I'm so miserable
We need to have a program for pituitary tumors unless you have one you can't know everything about you is different, bad panic attacks sleep disorders such as nite terrors,g leaving your house at nite sleep driving what cortisol does to you extreme fatigue arthritis all through your body vestibular problems suddenly not having the strength to move double vision people don't have a clue how many people 3out of 10 people have them some are born with it with Cushing syndrome, it's time people are aware before it kills them I have been through my life had all these things got made fun of that I was stupid with big feet and hands, passing out a lot constantly nausea and vomiting we need our illness brought out from the shadows, it's time for us to be counted with a yes severe illness that can an will shorten our life if you think I am going on about nothing how many people are in your immediate family 10 what 3 has it so ignoring the serious and frequency that's 30percent,47 percent of people under 40 who die from unknown cause when autopsy was performed they found a pituitary tumor we need to get the medical society to get a group therapy for us
Janet Bosworth in the UK there is an association for patients called the Pitutary Foundation. They are there to support people like you & me. I’m sure you could contact them wherever you are, and they would help you in whatever way they can. They would also know what is available wherever you are. They can be googled or found at pituitary dot org dot uk. Hope you find some support. It can feel pretty lonely, I know.
Oh yeah I have all those symptoms for the last 10 plus years so I have an MRI scheduled finally have insurance. I hope they find nothing and I just start feeling better. Some people say it’s menopausal symptoms or panic/anxiety attacks. I hope that’s it but the night terrors as soon as I wake up in the morning and go back to sleep with the head pressure and I’m in instant REM sleep? That’s newer to me.. could it possibly be related?
I had the first tumor removed in 1993, 2.5 CM. Second surgery in 2004, 2.5 cm again. In 2011 I had gamma knife radiation and according to a 2016 MRI, it's gone. BUT suddenly, out of nowhere, I'm getting agonizing headaches/eye aches on the left side only. Time for another MRI. So sick of this.
I have a 5mm adenoma on the right side, accompanied with headaches on the right side....and my doctor said, "well.....we'll just do another MRI in a year. Bye." No treatment of any kind. Should I seek a second opinion?
i think that's wrong. headaches for 20 years, the first half an hour when i wake up is typically the best i'll get all day. my headache is constantly moving in patterns and cycles. i will say has gotten worse at the front of the brain the last few weeks. some peoples problems are complex and you have many things working in tandem so to dismiss someone as not having a brain tumour because they don't fit your perfect pattern is grossly negligent. i am so sick of doctors sending me away at the first hurdle you're all a bunch of twits and i will probably die from it.
and once i learned to read my own blood tests i see low thyroid levels (secondary) ie pituitary. never trust your primary doctors especially when it comes to thyroid
I had surgery to remove my tumor in 2009. I have had post surgery headaches ever since. They are located in the left side of my head. The frontal left lobe and top of my head. The pain is dull at times but sharp and sudden at other times. What is a woman to do? Give up coffee!
I lost my vision and rush to the VA hospital there I had a CT scan they said I had tumor but it was bleeding and wrap around optical nerve had emergency surgery the next day for pituitary tumor surgery .it was 5 cm had second surgery 3 month 2024
I'm going through this right now, and I was able to get some tests started by physically showing my doctor what my body was doing to me with messed up hormones. I was almost walked out of the office as just "another fat guy doesn't like his manboobs." I've had these left-eye headaches, where it feels like an ice pick directly into your brainstem for up to 10-15 seconds. My estrogen levels, as a male btw, are hundreds of times more than a pregnant female. I progressed into gynecomastia, and now I literally have women's breasts. I produce milk as a male. I've been disregarded and told I'm making things up since I was a child. My hormones are so screwed up since puberty that my brain doesn't function like other peoples - I've developed pseudo-bipolar disorders, depression and anxiety attacks that will hit you for no reason with no triggers and completely incapacitate me. Recently these random attacks would hit me in the middle of almost any activity, and I've never experienced anything like this before, but several times now I've straight up ran away to a room alone, broke down and couldn't stop crying. Over nothing. I'm not sad or thinking about anything particular when it happens or as it is happening, but for some reason it physically hurts me, idk how to really describe it.
If you or someone you know might be showing signs or symptoms described in this video or in the comments, I URGE YOU to go get your bloodwork done, specifically hormones like prolactin, cortisol, testosterone, ya know what check it all. Pituitary tumors affect your entire body through the screwing up of your hormones.
If there's anyone in this situation feel free to reach out, there's not really a support group. Especially for males - this is extremely humiliating to not be a normal man: no facial hair, no body hair, almost zero testosterone production, overproduction of estrogen, hypogonadism, and even micro-penis and unascended testicles from the abdomen can occur if you had this since childhood untreated like so many other men.
Where i can find u ?Fb,insta?
My wife has had Pituitary surgery three times since 2010. The first two through the nose and the third through the skull. Discussed the headaches with the neurosurgeon and his response was, take some Tylenol, there is nothing more i can do. He did suggest that we get a second opinion. He didn't recommend any other doctor locally. Wants us to go to MD Anderson or Mayo clinic. Hard to believe that there are no other doctors we can see here in Dallas.
I am a UK Prolactinoma patient, and have been on Bromocriptine / Cabergoline treatment for 15 years, with a tumour that stubbornly refuses to shrink. An operation has been considered and excluded as a treatment option due to the risk of damage to the Carotid artery around which the tumour has spread. Also, any operation is deemed unlikely to remove sufficient tumour.
I have been complaining of complex headaches for at least 10 years, and my Endocrinologists have all said it is not due to the tumour (no evidence of elevated rates above the general population). Can you think of a reason nobody has read the evidence of your research, which is 5 years old? I have even raised it at the National Pituitary Foundation (The UK charity supporting pituitary tumour patients) but told the same thing. Your evidence should be more widely known.
very good explanation thank you***
I had a large pituitry tumour de bulked 5 years ago extended crainiotomy. had severe headaches for three years after have had raditherapy and take daily injections to reduce growth hormone only since the radio therapy have headaches become less severe.
Hello Stanford, I have had a pituitary tumor since diagnosed in Rutland Vermont on May 12, 2003. The PC and also Dartmouth neurosurgeons said it was too risky to do transphenoidal and that I would have serious problems. Since living in Burlington Vermont, any time I have complained about the tumor, which is now a macroadenoma, since 2008, noone will do even anything at all here at UVM medical center in Burlington. They have told me not to worry about it, be lucky it has not killed me, or BS that pills will boost sugar levels. I appealed to neurosurgery directly and they had patient advocates call me. Nowhere. THEY WILL NOT DO ANYTHING. I have all types of symptoms in which they said is a mental problem. Lots know here but noone cares or not their problem in Vermont.
Very interesting, I had my tumor in my pituitary removed in 1988, and I still remember today the massive headache I had in recovery. It was nasty and painful but after about six months, Doctor was right no more pain just pills for the rest of my life. I thank God I was lucky the acromegaly I was diagnosed with at a young age.
You till taking pills for headache or something?
It would have been nice if Doctors would have listened 2 years ago...
If you're still there please contact me we need to stand up for our medical problems
Me too.
Allison taylor they never do. They always say it’s hormonal or early menopause symptoms or anxiety panic attack disorder.
If your doctor starts giving you the go around or refusing blood work or imaging orders just leave them and find someone else. Took me over 4 doctors to finally get something done. Also it seems doctors are more comfortable working with the same sex patient for some reason.
Great doctor and he has removed two of my brain tumors from the pituitary gland and if not for him my tour's overseas in the military would have more than likely have killed me and the thing that saddens me the most is when I was having a second brain tumor removed from my putitary that was bigger than the last one I had a SPCA no kill animal shelter watch my PTSD and TBI service dog and well I lost my second Dad during this time and after being told once released from the hospital I would be able to get my service dog back and we'll I got out and the SPCA in Goleta CA Santa Barbara CA area animal shelter coordinator Lisa Kenyon adopted my dog out three times last time out of state and forged the animal surrender form and lied to myself my wife and saying we would get the service dog back but there Congress official myself were lied to and during recovery from surgery I lost my dog and my second Dad and I was really ready to give up on my life cause I was told by SPCA they would watch the dog and then they violated municipal code and lied to everyone and then said to me and my wife she wouldn't be giving me my boy back and Lisa Kenyon asked my wife and I if we owned any property or if we could afford the dog so why would she do this need your power and help America please help me with this issue or exposing her dascrimantio lama4120David@gmail.com
Yes I am also going through this headaches pain behind the eye one side are the other hair feels like it’s been pulled all-night tenderness in the front of face and ear ache and tooth ache with drainage down to the stomach and the pressure from the eye never got any better
11:43 I get used get ocular migranes. But now they moved into something different, what i get now is it feels like pressure on the top of my head no real pain just pressure and then i get physically wiped out for 2 days. Lately i've been waking up at night with screaming headaches and I can hear the blood flowing though my ears. And my blood pressure is perfect every time it's been checked.
Thank you for watching and sending us your comments. Please stay tuned for more important information on all aspects of pituitary conditions.
In 2010 I was diagnosed with pituitary tumor my breast started producing breast milk and always have up to this day. No treatment ever I'm ignored by doctors I'm so miserable
We need to have a program for pituitary tumors unless you have one you can't know everything about you is different, bad panic attacks sleep disorders such as nite terrors,g leaving your house at nite sleep driving what cortisol does to you extreme fatigue arthritis all through your body vestibular problems suddenly not having the strength to move double vision people don't have a clue how many people 3out of 10 people have them some are born with it with Cushing syndrome, it's time people are aware before it kills them I have been through my life had all these things got made fun of that I was stupid with big feet and hands, passing out a lot constantly nausea and vomiting we need our illness brought out from the shadows, it's time for us to be counted with a yes severe illness that can an will shorten our life if you think I am going on about nothing how many people are in your immediate family 10 what 3 has it so ignoring the serious and frequency that's 30percent,47 percent of people under 40 who die from unknown cause when autopsy was performed they found a pituitary tumor we need to get the medical society to get a group therapy for us
Janet Bosworth in the UK there is an association for patients called the Pitutary Foundation. They are there to support people like you & me. I’m sure you could contact them wherever you are, and they would help you in whatever way they can. They would also know what is available wherever you are.
They can be googled or found at pituitary dot org dot uk. Hope you find some support. It can feel pretty lonely, I know.
Oh yeah I have all those symptoms for the last 10 plus years so I have an MRI scheduled finally have insurance. I hope they find nothing and I just start feeling better. Some people say it’s menopausal symptoms or panic/anxiety attacks. I hope that’s it but the night terrors as soon as I wake up in the morning and go back to sleep with the head pressure and I’m in instant REM sleep? That’s newer to me.. could it possibly be related?
@@Jkstolz Be sure the MRI includes the pituitary image.
I had the first tumor removed in 1993, 2.5 CM. Second surgery in 2004, 2.5 cm again. In 2011 I had gamma knife radiation and according to a 2016 MRI, it's gone. BUT suddenly, out of nowhere, I'm getting agonizing headaches/eye aches on the left side only. Time for another MRI. So sick of this.
Barbara Hermann Right me too..
Barbara Hermann Hopefully that’s what my Suicide headaches are from..6 years being told sorry hope u feel better 🙄
Barbara I am not sure but you can try some homeopathic medicine,check if it works
Barbara you will be fine. Lots of love!
Omg I HAVE A PITUITARY MRI NEXT WEEK ABOUT TIME SHEESH ✅🤦🏽♀️🤦🏽♀️
I have a 5mm adenoma on the right side, accompanied with headaches on the right side....and my doctor said, "well.....we'll just do another MRI in a year. Bye." No treatment of any kind. Should I seek a second opinion?
yes
Yes
mydejavooo1 ,switch doctors right away
I hope by now you've gotten a 2nd opinion.
We need a voice for us it's time we stood up for our medical problems
Neurons reordering at cores.
If you don’t know what is going on the dam eye doctor will not send you for a mri are ct scan they will simply say we are getting older
i think that's wrong. headaches for 20 years, the first half an hour when i wake up is typically the best i'll get all day. my headache is constantly moving in patterns and cycles. i will say has gotten worse at the front of the brain the last few weeks. some peoples problems are complex and you have many things working in tandem so to dismiss someone as not having a brain tumour because they don't fit your perfect pattern is grossly negligent. i am so sick of doctors sending me away at the first hurdle you're all a bunch of twits and i will probably die from it.
and once i learned to read my own blood tests i see low thyroid levels (secondary) ie pituitary. never trust your primary doctors especially when it comes to thyroid
I had surgery to remove my tumor in 2009. I have had post surgery headaches ever since. They are located in the left side of my head. The frontal left lobe and top of my head. The pain is dull at times but sharp and sudden at other times. What is a woman to do? Give up coffee!
Caffene should actually make it better.
I have the same problem and I also have a pulsating sensation along with the pain. What might be the problem with this anyone ?
I lost my vision and rush to the VA hospital there I had a CT scan they said I had tumor but it was bleeding and wrap around optical nerve had emergency surgery the next day for pituitary tumor surgery .it was 5 cm had second surgery 3 month 2024
Is a pituitary cyst a tumor
A cyst is a small sac filled with air, fluid, or other material. A tumor refers to any unusual area of extra tissue
@@princessadora yea he told me no surgery for me because it’s only 3mm