I had a MRI done a few months ago due a moderately elevated prolactin levels (42). The MRI showed a possible 4mm microadenoma. I recently saw a Neurosurgeon and Encronologist and was told by the Neurosurgeon that she doesn't think I have a pituitary tumor. She basically said if there is a tumor there, it's small and nothing to worry about. She went on to show me some old pictures that she uses for illustration of a large and a small tumor. Then she showed me my images on a screen and asked me if I saw anything similar to what she had shown me on the black and white photos and I didn't. She pointed out the area where the possible pituitary adenoma was and said most people have small lesions of some sort like that. My Encronologist is running test to check various hormone levels. He's wants to rule out somethings but is concerned about my BP and weight. I'm tired all the time and have anemia and migraines. He asked about my sleep habits and now I have to do a sleep study. The Encronologist said there are a lot of pieces to this puzzle and unfortunately I wouldn't get the answers until various test were completed. I also have to so a siliva test.
I'm so lost. I'm scheduled to repeat an MRI next year. Things are just all over the map. And it doesn't help when all your family hears is you don't have a tumor and everything else goes out the window. Meanwhile, I'm just sitting looking lost and confused. Has anyone else had to deal with anything like this. Maybe I should be happy the Neurosurgeon didn't see anything but it doesn't feel right to me. I am thrilled that no surgery is needed but not convinced that nothing is there. I'm just not convinced but I'm also not a Neurosurgeon lol. Any advice or input?
Remsen, you say that you have bouts of tiredness. Have you noticed any particular pattern? When are you most affected by the fatigue? Have you found tricks to help manage and/or prevent the tiredness?
I have noticed it occurs if I don't get a restful sleep. But, it is more noticeable since my surgery. Prior to surgery if I did not sleep well I barely noticed it. Now I can definitely see a difference.
Hello It will be three years this May that I was diagnosed with my Pituitary tumor. It was discovered after my gynecologist ordered bloodwork and found that my Prolactin levels were very elevated. She immediately sent me to an Endocrinologist who ordered an MRI and an Ultrasound of my Thyroid because she felt nodules. The MRI came back positive for the Pituitary tumor, and I was referred to a Neurosurgeon. It took me time to find one as the one she referred me to didn’t take my insurance. Once I found one he explained to me in more detail what was going on. He told me there are only three instances where he operates, one if it continues to grow, two if it starts to affect my vision and the third is if I started having other symptoms. He also informed me that he saw something else on my MRI and asked if I had previously had any other scans of my brain. I told him two years prior I’d had a CAT Scan to make sure all of a tumor had been removed from the base of my skull. It was to make sure all the cancer had been removed. I was able to pull the films up on my IPad. He said the same spot was on the CAT Scan. At my six month MRI appointment he informed me I also have a Meningioma.Fast forward to my November appointment with the Endocrinologist my labs were all abnormal and I started having symptoms. The Endocrinologist ordered more bloodwork. One of the test was the glucose suppression test to check my growth hormones. Had to get the test done twice because the lab did it wrong the first time. The Endocrinologist warned me it might happen. In the meantime I had my appointment with the Neurosurgeon he said that the Pituitary and the Meningioma tumors are both stable. When I mentioned my recent lab work and symptoms he said if the lab work came back abnormal it would be time to discuss removal of the tumor. All my labs came back fine except my Prolactin levels are going back up. The Endocrinologist changed my medication dosage for the fifth time and said if it doesn’t go down she will repeat the glucose testing. If there’s a change in the Glucose Test then she will recommend to my Neurosurgeon to move forward with removal of the tumor. I go in two weeks get my Prolactin levels checked.
I have been told that mine is small and they keep checking my levels also. I still have
Guillian Barre Syndrome and still have memory loss and depression and hurt all over
and have sever headaches at times.
yes I have I was diagnosed in 2017 and I have gotten severe headaches, but the doctors say its unrelated I don't feel it is. I have memory loss and hurt all over and now have depression. And I have gained over 100lbs
Remsen, you say that you have bouts of tiredness. Have you noticed any particular pattern? When are you most affected by the fatigue? Have you found tricks to help manage and/or prevent the tiredness?
I had surgery in Aug 2018 for a benign pituitary tumor. I still have boughts of tiredness. Can anyone share how long it took them to get back to feeling like their old self? Thanks.
Hi, Sandy I hope you are doing well. I dont know where you live but, University of Miami and Jackson Hospital took care my husband Dr kargi endocrinologist and Dr Bienveniste neurosurgeon are mu husband doctor . My husband spend 5 years under treatment and when he started showing signs blood pressure, sugar level rising, weight gain and and not improving he decided have surgery, it has been 8 months seems his surgery and he has been taken off all medicines. He is doing great and I hope maybe you can go see his doctors for a second, third or fourth opinion it's all worth it. May God be with you and I will put you in my prayers.
@dmedina71
I live in New Jersey my Endocrinologist and my Neurosurgeon are with different hospital systems. My Neurosurgeon is the Head of Neurosurgery at Cooper Hospital and my Endocrinologist is with Inspira Hospital. Both seem to be well versed in their fields and came highly recommended. I had high blood pressure before the diagnosis as it runs in my family. I’m overweight but my weight has remained stable though out. The Endocrinologist has told me that since I’m neither gaining or loosing weight we won’t discuss me trying to loose right now. I have very little appetite and on most days only eat one meal a day. I’ve started to have issues with my heart and am waiting for results from an Echocardiogram and a Stress Test. My Cardiologist said my EKG didn’t show any signs of a heart attack but there were several abnormalities. Heart disease, diabetes and cancer all run in my family. I also have a tumor on my Adrenal gland and cysts in my liver and kidney. Glad to hear your husband is doing well, thank you for the prayers. I will update after my blood work.
Hello It will be three years this May that I was diagnosed with my Pituitary tumor. It was discovered after my gynecologist ordered bloodwork and found that my Prolactin levels were very elevated. She immediately sent me to an Endocrinologist who ordered an MRI and an Ultrasound of my Thyroid because she felt nodules. The MRI came back positive for the Pituitary tumor, and I was referred to a Neurosurgeon. It took me time to find one as the one she referred me to didn’t take my insurance. Once I found one he explained to me in more detail what was going on. He told me there are only three instances where he operates, one if it continues to grow, two if it starts to affect my vision and the third is if I started having other symptoms. He also informed me that he saw something else on my MRI and asked if I had previously had any other scans of my brain. I told him two years prior I’d had a CAT Scan to make sure all of a tumor had been removed from the base of my skull. It was to make sure all the cancer had been removed. I was able to pull the films up on my IPad. He said the same spot was on the CAT Scan. At my six month MRI appointment he informed me I also have a Meningioma.Fast forward to my November appointment with the Endocrinologist my labs were all abnormal and I started having symptoms. The Endocrinologist ordered more bloodwork. One of the test was the glucose suppression test to check my growth hormones. Had to get the test done twice because the lab did it wrong the first time. The Endocrinologist warned me it might happen. In the meantime I had my appointment with the Neurosurgeon he said that the Pituitary and the Meningioma tumors are both stable. When I mentioned my recent lab work and symptoms he said if the lab work came back abnormal it would be time to discuss removal of the tumor. All my labs came back fine except my Prolactin levels are going back up. The Endocrinologist changed my medication dosage for the fifth time and said if it doesn’t go down she will repeat the glucose testing. If there’s a change in the Glucose Test then she will recommend to my Neurosurgeon to move forward with removal of the tumor. I go in two weeks get my Prolactin levels checked.
Hi, Sandy I hope you are doing well. I dont know where you live but, University of Miami and Jackson Hospital took care my husband Dr kargi endocrinologist and Dr Bienveniste neurosurgeon are mu husband doctor . My husband spend 5 years under treatment and when he started showing signs blood pressure, sugar level rising, weight gain and and not improving he decided have surgery, it has been 8 months seems his surgery and he has been taken off all medicines. He is doing great and I hope maybe you can go see his doctors for a second, third or fourth opinion it's all worth it. May God be with you and I will put you in my prayers.
Hello It will be three years this May that I was diagnosed with my Pituitary tumor. It was discovered after my gynecologist ordered bloodwork and found that my Prolactin levels were very elevated. She immediately sent me to an Endocrinologist who ordered an MRI and an Ultrasound of my Thyroid because she felt nodules. The MRI came back positive for the Pituitary tumor, and I was referred to a Neurosurgeon. It took me time to find one as the one she referred me to didn’t take my insurance. Once I found one he explained to me in more detail what was going on. He told me there are only three instances where he operates, one if it continues to grow, two if it starts to affect my vision and the third is if I started having other symptoms. He also informed me that he saw something else on my MRI and asked if I had previously had any other scans of my brain. I told him two years prior I’d had a CAT Scan to make sure all of a tumor had been removed from the base of my skull. It was to make sure all the cancer had been removed. I was able to pull the films up on my IPad. He said the same spot was on the CAT Scan. At my six month MRI appointment he informed me I also have a Meningioma.Fast forward to my November appointment with the Endocrinologist my labs were all abnormal and I started having symptoms. The Endocrinologist ordered more bloodwork. One of the test was the glucose suppression test to check my growth hormones. Had to get the test done twice because the lab did it wrong the first time. The Endocrinologist warned me it might happen. In the meantime I had my appointment with the Neurosurgeon he said that the Pituitary and the Meningioma tumors are both stable. When I mentioned my recent lab work and symptoms he said if the lab work came back abnormal it would be time to discuss removal of the tumor. All my labs came back fine except my Prolactin levels are going back up. The Endocrinologist changed my medication dosage for the fifth time and said if it doesn’t go down she will repeat the glucose testing. If there’s a change in the Glucose Test then she will recommend to my Neurosurgeon to move forward with removal of the tumor. I go in two weeks get my Prolactin levels checked.
Is there anyother method of folowup with a person such as myself who has a microadenoma other than a mri in which they put a mask over your face? I have not gone back for a followupbecause of claustophobia. The test took almost one hour to do. That is why I have not gone back to see my neurosurgeon. Torino1.
I have a macroadenoma and claustrophobia. I like you dread every time I have to have an MRI. As you probably know having an MRI is essential for us. I found that taking Ativan helps greatly. It was prescribed to me by my neurosurgeon and to be honest with you, once the Ativan kicks in, I have no idea where I am and no recollection of the MRI. It's been a life saver for me. Without it, I could never have an MRI.
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Hello Everyone,
I had a MRI done a few months ago due a moderately elevated prolactin levels (42). The MRI showed a possible 4mm microadenoma. I recently saw a Neurosurgeon and Encronologist and was told by the Neurosurgeon that she doesn't think I have a pituitary tumor. She basically said if there is a tumor there, it's small and nothing to worry about. She went on to show me some old pictures that she uses for illustration of a large and a small tumor. Then she showed me my images on a screen and asked me if I saw anything similar to what she had shown me on the black and white photos and I didn't. She pointed out the area where the possible pituitary adenoma was and said most people have small lesions of some sort like that. My Encronologist is running test to check various hormone levels. He's wants to rule out somethings but is concerned about my BP and weight. I'm tired all the time and have anemia and migraines. He asked about my sleep habits and now I have to do a sleep study. The Encronologist said there are a lot of pieces to this puzzle and unfortunately I wouldn't get the answers until various test were completed. I also have to so a siliva test.
I'm so lost. I'm scheduled to repeat an MRI next year. Things are just all over the map. And it doesn't help when all your family hears is you don't have a tumor and everything else goes out the window. Meanwhile, I'm just sitting looking lost and confused. Has anyone else had to deal with anything like this. Maybe I should be happy the Neurosurgeon didn't see anything but it doesn't feel right to me. I am thrilled that no surgery is needed but not convinced that nothing is there. I'm just not convinced but I'm also not a Neurosurgeon lol. Any advice or input?
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1 ReactionI have noticed it occurs if I don't get a restful sleep. But, it is more noticeable since my surgery. Prior to surgery if I did not sleep well I barely noticed it. Now I can definitely see a difference.
I have been told that mine is small and they keep checking my levels also. I still have
Guillian Barre Syndrome and still have memory loss and depression and hurt all over
and have sever headaches at times.
yes I have I was diagnosed in 2017 and I have gotten severe headaches, but the doctors say its unrelated I don't feel it is. I have memory loss and hurt all over and now have depression. And I have gained over 100lbs
Welcome to Connect, @remsen. It can take time to recover from brain surgery. members talk about life after brain surgery here:
- Life after Brain surgery https://connect.mayoclinic.org/discussion/life-after-brain-surgery/
Remsen, you say that you have bouts of tiredness. Have you noticed any particular pattern? When are you most affected by the fatigue? Have you found tricks to help manage and/or prevent the tiredness?
I had surgery in Aug 2018 for a benign pituitary tumor. I still have boughts of tiredness. Can anyone share how long it took them to get back to feeling like their old self? Thanks.
@dmedina71
I live in New Jersey my Endocrinologist and my Neurosurgeon are with different hospital systems. My Neurosurgeon is the Head of Neurosurgery at Cooper Hospital and my Endocrinologist is with Inspira Hospital. Both seem to be well versed in their fields and came highly recommended. I had high blood pressure before the diagnosis as it runs in my family. I’m overweight but my weight has remained stable though out. The Endocrinologist has told me that since I’m neither gaining or loosing weight we won’t discuss me trying to loose right now. I have very little appetite and on most days only eat one meal a day. I’ve started to have issues with my heart and am waiting for results from an Echocardiogram and a Stress Test. My Cardiologist said my EKG didn’t show any signs of a heart attack but there were several abnormalities. Heart disease, diabetes and cancer all run in my family. I also have a tumor on my Adrenal gland and cysts in my liver and kidney. Glad to hear your husband is doing well, thank you for the prayers. I will update after my blood work.
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Like -
Helpful -
Hug
1 ReactionHi, Sandy I hope you are doing well. I dont know where you live but, University of Miami and Jackson Hospital took care my husband Dr kargi endocrinologist and Dr Bienveniste neurosurgeon are mu husband doctor . My husband spend 5 years under treatment and when he started showing signs blood pressure, sugar level rising, weight gain and and not improving he decided have surgery, it has been 8 months seems his surgery and he has been taken off all medicines. He is doing great and I hope maybe you can go see his doctors for a second, third or fourth opinion it's all worth it. May God be with you and I will put you in my prayers.
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Helpful -
Hug
1 ReactionHello It will be three years this May that I was diagnosed with my Pituitary tumor. It was discovered after my gynecologist ordered bloodwork and found that my Prolactin levels were very elevated. She immediately sent me to an Endocrinologist who ordered an MRI and an Ultrasound of my Thyroid because she felt nodules. The MRI came back positive for the Pituitary tumor, and I was referred to a Neurosurgeon. It took me time to find one as the one she referred me to didn’t take my insurance. Once I found one he explained to me in more detail what was going on. He told me there are only three instances where he operates, one if it continues to grow, two if it starts to affect my vision and the third is if I started having other symptoms. He also informed me that he saw something else on my MRI and asked if I had previously had any other scans of my brain. I told him two years prior I’d had a CAT Scan to make sure all of a tumor had been removed from the base of my skull. It was to make sure all the cancer had been removed. I was able to pull the films up on my IPad. He said the same spot was on the CAT Scan. At my six month MRI appointment he informed me I also have a Meningioma.Fast forward to my November appointment with the Endocrinologist my labs were all abnormal and I started having symptoms. The Endocrinologist ordered more bloodwork. One of the test was the glucose suppression test to check my growth hormones. Had to get the test done twice because the lab did it wrong the first time. The Endocrinologist warned me it might happen. In the meantime I had my appointment with the Neurosurgeon he said that the Pituitary and the Meningioma tumors are both stable. When I mentioned my recent lab work and symptoms he said if the lab work came back abnormal it would be time to discuss removal of the tumor. All my labs came back fine except my Prolactin levels are going back up. The Endocrinologist changed my medication dosage for the fifth time and said if it doesn’t go down she will repeat the glucose testing. If there’s a change in the Glucose Test then she will recommend to my Neurosurgeon to move forward with removal of the tumor. I go in two weeks get my Prolactin levels checked.
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Helpful -
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1 ReactionI have a macroadenoma and claustrophobia. I like you dread every time I have to have an MRI. As you probably know having an MRI is essential for us. I found that taking Ativan helps greatly. It was prescribed to me by my neurosurgeon and to be honest with you, once the Ativan kicks in, I have no idea where I am and no recollection of the MRI. It's been a life saver for me. Without it, I could never have an MRI.
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Helpful -
Hug
1 Reaction