Looking for others with Pituitary Adenoma

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.

Hi @dailychronicsupportgroup Very sorry to hear your disability has been denied. Do you have symptoms associated with your pituitary tumor? Did they say how big it was. The sooner you can get into your doctor - a neurologist, neurosurgeon, and an endocrinologist the better. It's very important to stay in tune to your body and take note of the symptoms so that you can explain them to your doctor. Good luck with your next court date.

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.

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.

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!?

Thank you very much

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...

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?

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.