Looking for others with Pituitary Adenoma
I like to now if their is anyone who has been diagnosed with Pituitary Adenoma
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shellsk24
@shellsk24
@shellsk24
Posts: 19
Joined: May 25, 2016
@colleenyoung Hi @dmedina71 Just thought I would check in. How is the decision-making going with your husband’s care choices? Has he started radiation treatment?
@shellsk24 how are the radiation treatments going for your husband? Do you have to travel far to the treatment center? And, of course, how are you doing!?
Hi @colleenyoung , thanks for checking on us. My husband has about 2 wks left of his daily radiation regimen. It’s going well. He’s had a little fatigue, loss of appetite, and that’s about it. I have to remind him how important it is to eat and keep up his strength, so he manages. We only travel about 10 miles to the treatment center everyday so that’s a plus. My concerns are of course AFTER the radiation treatment is over. I have researched that this is the time that you really have to monitor symptoms, and medications, as the pituitary will begin to slowly react to the trauma. We have learned of course this is a lifelong monitoring regimen that will need to be followed with 4-5 times yearly blood tests to monitor the hormone levels, etc. I’m just hoping and praying for no lasting detrimental effects of the harsh radiation. Only time will tell…
torino1qm
@torino1qm
@torino1qm
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Joined: Dec 06, 2016
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
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Joined: Jul 23, 2014
@torino1qm 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?
Welcome to Connect, @torino1qm.
I moved your message to this existing discussion about Pituitary Adenoma, so you can meet @shellsk24 @dailychronicsupportgroup @dmedina71 @neffjsn and @lindalongberry. I’m also tagging @jasonkwellls @shellsk24 @upartist and @emiliaolga who have talked about pituitary tumors in other discussions and can share their experiences.
Torino – How long have you had your diagnosis? Are you uncomfortable about the watch and wait situation?
dailychronicsupportgroup
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@torino1qm 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?
A little over two years now. Yes the watch and wait is not good, because I don’t have medical insurance, and can’t afford to use obama care, based on the tests I need, and the expense. I can’t afford 20% of an MRI cost, so I haven’t had any scans in over a year. I’m more on a wait and see. Wait, and hope is I guess better to describe it…. I just hope something doesn’t happen. I can’t afford to have anything major go wrong, but I can’t afford to keep checking it either. I have lost faith in the disability system, I have been denied 3 times now. It’s just so discouraging, I don’t even think about it. When I bump into walls, I just laugh at myself, because there’s nothing I can do about it now. Just waiting for death I guess. Sorry for being negative, but I don’t have anything positive to say about my health right now. I also have a pineal cyst (in my brain) occipital neuralgia, Fibro, and a list of diagnoses, so it’s all most too much to keep up with even for me. I get nauseated, and vomit out of nowhere sometimes. But I have so many problems, my symptoms overlap, and it’s hard to distinguish, what came from where. I just get through the day, and whatever happens, is gonna happen I guess. My main message, was written back when I lived in California, on my husband’s insurance, and had care. But things have drastically changed, and not for the better.
upartist
@upartist
@upartist
Posts: 46
Joined: Sep 15, 2016
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.
Respectfully,
UPArtist
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torino1qm
@torino1qm
@torino1qm
Posts: 6
Joined: Dec 06, 2016
@upartist 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.
Respectfully,
UPArtist
I am sorry about the passing of your grandmother. I was dx with a microadenoma about 10 years ago. Needless I was surprised and concerned about it. They found the tumor after I had fallen. They did an mri. I have been under a neurosurgeons care sinbce then and have had two mri,s. They showed no advancement as of two years ago. My dr has not recommended surgery so far. I have not been concerned about the tumor since the dx. However, I have fatigue, weigh 120 lbs. and somretimes experience blurriness. Also, I was treated for severe hyponatremia. I think it would be wise to take your advise and look for a tumor center. Thank yo
torino1qm
@torino1qm
@torino1qm
Posts: 6
Joined: Dec 06, 2016
@torino1qm 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?
10 years. I am not uncomfortable about the wait.
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7162
Joined: Jul 23, 2014
@upartist 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.
Respectfully,
UPArtist
@torino1qm If you wish to consider a second opinion from experts at Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours Be sure to mention the Brain Tumor 48-access program. They can help you navigate your healthcare journey and answer your questions about treatment options.
dailychronicsupportgroup
@dailychronicsupportgroup
@dailychronicsupportgroup
Posts: 6
Joined: Jun 14, 2016
@upartist 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.
Respectfully,
UPArtist
How much is an appointment? I don’t have medical insurance.
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7162
Joined: Jul 23, 2014
@upartist 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.
Respectfully,
UPArtist
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.
torino1qm
@torino1qm
@torino1qm
Posts: 6
Joined: Dec 06, 2016
@torino1qm 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.
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torino1qm
@torino1qm
@torino1qm
Posts: 6
Joined: Dec 06, 2016
@colleenyoung 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.
raychelk22
@raychelk22
@raychelk22
Posts: 8
Joined: Feb 08, 2018
@neffjsn 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.
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Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7162
Joined: Jul 23, 2014
@neffjsn 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.
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?
@dailychronicsupportgroup
In reply to @dailychronicsupportgroup
Thank you very much
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