Looking for others with Pituitary Adenoma

Posted by dmedina71 @dmedina71, May 3, 2016

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.

@dailychronicsupportgroup

Hello, I also have a pituitary tumor, AND a pineal cyst. They are just monitoring it. Not sure what is next. I moved to a new state, and don’t have any doctors. Waiting for my disability court date in August. (already been denied twice) this time I go in front of the judge. Then I can start seeing doctors. Otherwise, I just sit here with them, not knowing what’s going on in there.

Jump to this post

Thank you for your comment. I do have symptoms, such as nausea, vomiting, and dizziness. I fall down sometimes, and bump into everything. I had all those doctors, (neurologist, neurosurgeon, rheumatologist, endocrinologist, and pain management because I have a list of issues, including occipital neuralgia, and fibromyalgia, chronic Achilles Tendonitis, just to hit the most important ones)when I lived in California, but we recently moved to Texas, and the premium for insurance for me is $800 a month, so I have been going without care for the past 6 months. Hoping I will be approved and finally get eligible for care. I’m a case study.

REPLY
@dailychronicsupportgroup

Hello, I also have a pituitary tumor, AND a pineal cyst. They are just monitoring it. Not sure what is next. I moved to a new state, and don’t have any doctors. Waiting for my disability court date in August. (already been denied twice) this time I go in front of the judge. Then I can start seeing doctors. Otherwise, I just sit here with them, not knowing what’s going on in there.

Jump to this post

Fingers crossed for your getting approval @dailychronicsupportgroup. That’s quite a list of conditions to monitor. I’m sure you’ll breathe easier once you have coverage.

REPLY

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!?

REPLY
@dailychronicsupportgroup

Hello, I also have a pituitary tumor, AND a pineal cyst. They are just monitoring it. Not sure what is next. I moved to a new state, and don’t have any doctors. Waiting for my disability court date in August. (already been denied twice) this time I go in front of the judge. Then I can start seeing doctors. Otherwise, I just sit here with them, not knowing what’s going on in there.

Jump to this post

Thank you very much

REPLY
@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!?

Jump to this post

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…

REPLY

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?

REPLY
@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?

Jump to this post

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?

REPLY
@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?

Jump to this post

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.

REPLY

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

REPLY
@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

Jump to this post

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

REPLY
@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?

Jump to this post

10 years. I am not uncomfortable about the wait.

REPLY
@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

Jump to this post

@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.

REPLY
Please sign in or register to post a reply.
  Request Appointment