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Pituitary tumor symptoms: joint, muscle and body aches

Posted by khauert @khauert, Jan 12, 2020

Hi. I am new to this. And not sure I'm in the right category. I was diagnosed with a pituitary tumor in November. However, I have been experiencing terrible joint, muscle and body aches for a year now. No doctor knows why and nobody can confirm its from the tumor. I'm frustrated and becoming very hopeless and depressed. Can anyone with a pituitary tumor relate to body pain?

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picturemanz | @picturemanz | 5 days ago
In reply to @picturemanz "In 2022 my friends brought me to the ER after I just stopped and stared with..." + (show)
@picturemanz

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.

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INFO FOUND:
Generally, prolactinomas need to be relatively large, classified as macroadenomas (larger than 1 cm) or even giant prolactinomas (larger than 4 cm), to potentially impact the medial temporal lobe.
Here's why and how:
Location Matters: Pituitary prolactinomas are located at the base of the brain near several important structures, including the optic nerves, the optic chiasm, and the cavernous sinuses. The medial temporal lobe is a brain region located nearby.
Compression and Invasion: As a prolactinoma grows larger, particularly macroadenomas and giant prolactinomas, it can expand and exert pressure on or even invade nearby structures.
Medial Temporal Lobe Impact: If the tumor grows significantly upward and outward, it can compress or invade the medial temporal lobe, potentially leading to symptoms such as seizures. In rare cases, invasive pituitary tumors may result in temporal lobe epilepsy.
Other Symptoms: It's important to remember that prolactinomas can cause a variety of symptoms besides seizures, including:
Visual problems: Headaches, loss of peripheral vision, or double vision due to pressure on the optic chiasm.
Hormonal imbalances: Changes in menstrual periods, decreased sexual drive, or infertility.
Headaches, nausea, vomiting, or other signs of increased intracranial pressure.
In summary, while smaller prolactinomas (microadenomas) usually cause symptoms related to high prolactin levels, larger tumors (macroadenomas and giant prolactinomas) are more likely to cause symptoms due to compression of surrounding brain structures, including the medial temporal lobe.

REPLY
pamp56 | @pamp56 | 5 days ago
In reply to @thedee "@pam56 Hello, I had a pituitary removed in 2016. By 2020, more came back. If cells..." + (show)
@thedee

@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.

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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!).

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