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I like to now if their is anyone who has been diagnosed with Pituitary Adenoma
Interested in more discussions like this? Go to the Brain Tumor group.
Hello, I am responding to others with pituitary adenomas. My grandmother, her dad, and my daughter all had benign macro pituitary adenomas. My grandmother and her dad both passed away as a result of the tumor growth. With the advancements in medical science, my daughter’s was successfully removed, and she is past the 15 year mark. She was young and we had an intuitive local family practice Doc who did his residency at the Mayo Clinic in Rochester. He looked at her and saw more than what logic dictated. We have been blessed! She has needed no supplemental hormone therapy and is doing well. I don’t have to describe to the group of people on this blog how stressful and devastating this condition can be to all parties involved. The waiting portion was the worst, for all of us. Once the tumor was removed, we were able to move forward. However, not all macro adenomas are created equal. We all know that. The different treatment options definitely vary according to the type, size, effects and direction of the growth, and the health of the individual. Anyone who has been diagnosed with a pituitary adenoma, micro or macro, of any type, should go to a center which specializes in this treatment. The diagnostic tools are imperative to reach a conclusive refined diagnosis and then an appropriate treatment plan. These include targeted blood work, imaging, physician team, and comprehensive patient education. The patient receives a group judgement with a lot of experience tossed into the decision making. It’s very helpful to have knowledge on your side. I hope this helps anyone who is struggling with this condition. You can have a positive outcome in many different ways.
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How much is an appointment? I don’t have medical insurance.
Hi @dailychronicsupportgroup, You can get information about cost from the appointments department. Please call the contact number on this page http://mayocl.in/1mtmR63. You can talk to them about your medical history and options available at Mayo Clinic. It is our goal to provide the best care each patient needs. But as you know there are also travel costs, etc. We do not want to have you incur additional costs for evaluation or travel if the care we can offer is not different from what you’re already receiving.
I really have minimal side effects except periodic visual blurriness, no headaches. I am under a neuro surgeons care who does not recommend surgery so far. I do get tired a lot, find it difficult to walk very far. What are others experience with this type of tumor?
I had a diagnosis about six years ago. My neurosurgeon told me at my last visit and mri that my microadenoma does not need surgery. Today, I have periodic blurriness, fatigue, and find it difficult to gain weight ( 102 pounds and 5 feet 6 inches and 84 years of age). But, am managing. Mostly concerned about difficulty gaining weight, but it is steady.
Hi @dmedina71, welcome to Connect.
I’m tagging several Connect members who have talked about their experience with pituitary tumors (adenomas) in the past @neffjsn @osbonkim @shawnpaul @carolina2501 @donperryman @cathy14 @markvic @mybeau12. While it’s been awhile since they’ve posted here, I hope some will return to join this discussion.
@dmedina, you mention in another discussion thread that it is your husband who has been diagnosed with a pituitary adenoma. How is he doing? How are you doing? We look forward to getting to know a bit more about you.
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 was 43 at the time. Psychologically, it took a couple of months to a year to relax about the whole thing. I’m 72 now, been taking HGH, Testosterone, and Synthroid, pretty much steadily since the surgery (the HGH came into the picture shortly after Genentech came out with the recombinant version). I still choose to work (self employed) financial services. I play tennis regularly, easily run 3-4 miles at a time maybe 3 times a week, swim half a mile a couple of times a week, workout with weights/machines a couple of times a week, and basically have no chronic injuries such as knee, hip, shoulder, back, or whatever. I’ve done these things regularly my whole life (run in total around 50,000 miles). I’m grateful and know I’m lucky but actually feel kind of creepy sometimes listening to the other people my age complain about their aches and pains since I don’t really have any to speak of with them. I’m slower running and swimming than I used to be. I’m saying all of this because maybe the hormone supplements have actually kept my levels at more optimum levels than others my age, allowing me to so far escape some of those age related maladies. So maybe, strangely, the surgery had a plus side.
Did you feel more emotional with the adenoma and if so, did it help after having it removed? My thyroid level is already dropping a lot every single time that they check it.
Welcome to Connect, Raychel.
While we wait for @neffjsn and others to respond, I’m wondering if you mind telling us a bit more about you. Have you been recently diagnosed? Planning surgery?
Thank you for sharing
Welcome to Connect, @mureda34
Would you be able to share a bit more about yourself? Have you been recently diagnosed?
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.
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.
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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