Pituitary tumor symptoms: joint, muscle and body aches

In 2022 my friends brought me to the ER after I just stopped and stared with no response for several minutes each episode.
A brain MRI showed a pituitary tumor larger than 1cm and Dr.s suspected pituitary prolactinoma. Surgical removal of the tumor is not an option for me due to my need for warfarin to safeguard against clots on my St Jude artificial heart valve.
I'm looking for anyone who has a similar situation experiencing focal impaired awareness seizures which I understand can be caused when the tumor puts pressure on the medial temporal lobe of the brain ? i never remember my seizures and I have no warning they are about to occur.
I was prescribed the generic form of Keppra for anti'-seizure meds and I was prescribed Cabergoline to hopefully shrink the tumor (prolactinoma). I am due for an MRI in September 2025 and I'm hopeful there are signs of shrinkage.

@pam56
Hello, I had a pituitary removed in 2016. By 2020, more came back. If cells are left behind they can grow back, I did not think to ask my surgeon how do they get rid of all the cells. Even though these tumors are not cancerous they can be life threatening. Meaning, if they grow and attach on the carotid artery that leads to the brain it can be fatal depending the the size and location because the tumor can cut off blood flow. Or, if it grows and presses against the optic nerve a person can loose sight. Either way its better to get them taken care of before they do become problematic for the surgeon especially depending on location. Ask your surgeon to show you exactly where its located. Once you see, then ask about complications. I did not do that. I wish I did because I lost my sense of smell. Because the instrument they use to go into your nose can damage the smell sensors in your nose like mine. Note: If your Primary doctor seems laxed about your condition, get a second opinion and see a team of specialized neurologist who can help you promptly.

Hi! Thank you for this information, it's very helpful. My endocrinologist has already begun the process of referral to a neurosurgeon & because I'm on an HMO, I have to go where they're networked. I was hoping to go to Sacramento, to UC Davis but i just found out i must go to Stanford, in Palo Alto, CA which is about 100 miles away from where I live! That's going to be quite an adventure to go there, in bay area traffic. I guess, if I want top notch health care, Stanford is a good choice. I will definitely discuss the issues you outlined with the neurosurgeon, when & if I get there (hopefully in one piece!).

Hi. I have been experiencing excruciating and debilitating joint and muscle pain for several months now. My lab work clears me of any rheumatoid issues. However, my rheumatologist diagnosed me with gout. I was on Allopurinol for a couple months with symptoms only worsening. I stopped the medication because I don't have the other typical gout symptoms. My primary doc, endocronologist, and podiatrist also ruled gout out. I was diagnosed with a pituitary tumor in November. I can't find a doctor who can help. Nobody seems to know why I have body pain and nobody can tell me if it relates to the tumor. I am ver frustrated living like this. I am just wondering if anyone else out there with a pituitary tumor might be experiencing constant cracking bones and popping joints with awful body pain that affects their daily activities/routine.

@khauert
I have been living in pain for 20 years. Joint and body. I was taking handfuls of ibuprofen. It kept getting worse. Now I live on methadone. Just found out about my pituitary tumor. It has been a struggle to get my HGH. Which I know will help. I am hoping to have it removed and pray all goes back to normal.