One Millimeter Between Me and Brain Surgery
I thought it was time for a community update on my Brain Cloud, since I finished the rather involved evaluation by the pituitary specialists down at Oregon Health Science University Northwest Pituitary Center, which is part of their Brain Institute. There is no way to definitively say what my pituitary mass is without taking it out and looking at it under a microscope... so I call it my Brain Cloud.
If you aren’t familiar with Brain Clouds, I suggest you rent a copy of the 1990 Tom Hanks film "Joe Versus the Volcano."
I met with the surgeon, Dr. Nicholas Coppa; Pituitary Neuroendocrinologist, Dr. Maria Fleseriu; and Nurse Practitioner, Chris Yedinak. We discussed the results of the massive hormone testing they put me through and the MRI from December 2011, compared with my past MRIs.
Dr. Coppa believes what I have is a medium sized (7mm) Rathke Cleft Cyst, which is a growth on the pituitary that develops from a malformation and enlargement of the remnants of the Rathke pouch, present during early prenatal development. It also could be a pituitary adenoma or another type of tumor. Regardless of exactly what it is, it doesn’t appear to be growing and may actually be shrinking. Rathkes can apparently wax and wane over the course of a person's lifetime.
So what’s this thing doing? Nothing very good!
The problem is, although they are usually benign, they can grow and put pressure on the surrounding brain structures. The most immediate risk is the optic chiasm, where my optic nerves cross just above the pituitary gland. Brain Cloud is about 1 mm from this area, which is a good thing, says Dr. Coppa. However, the mass is squashing my pituitary gland, like an elephant sitting on a grape--especially the anterior lobe. The pituitary, usually spherical, looks like a U-shaped cup on the MRI.
My headaches, which have been happening daily for years, may or may not be courtesy of Brain Cloud. There’s no way to tell if the headaches are due to this mass without having the surgery, which is risky. Since it isn’t pressing on the optic nerves, there's no urgency to have it removed, unless I could no longer cope with the headaches. I’ve had them for so many years that I’m pretty good at managing them and coping with that pain or discomfort. So, from a surgical standpoint, as long as it’s not going to result in imminent loss of vision, the risk of surgery is just too high.
However, the mass has done a good deal of damage to my anterior pituitary, which is responsible for growth hormone. Being the master gland, the pituitary orchestrates operations throughout the body, and when it is damaged, it becomes the "Evil Dictator" who causes sorts of problems. My medical history reflects nearly ALL of these. And the tests show that indeed my pituitary is unable to produce growth hormone, which is crucial for normal metabolism (especially lipid metabolism), energy, bone strength, and repair of normal wear and tear on the body, among other things.
I am now a candidate for growth hormone replacement, which is a very involved proposition and quite expensive, so insurance companies aren’t fond of authorizing it. Because of this, the pharmaceutical company partners up with the medical specialists to get it authorized. It’s still expensive, but with some help from insurance, it may be doable. My paperwork will be submitted and that process started. I am very hopeful—and optimistic for the first time in years—that I may have a means of feeling better! It may even relieve the “fibromyalgia” pain that has been a life-long issue…in which case, it wasn’t fibromyalgia at all.
Even if I opted to have the surgery, it would likely do nothing to restore my pituitary function, because the damage to this highly sensitive gland is just too great.
So things are looking up! I’ve suspected Adult Growth Hormone Deficiency for years, and now my suspicions are finally confirmed with objective information. It takes 3-6 months for most people to experience improvement with growth hormone replacement. I could be starting it within a few weeks, depending on how my insurance responds.
Keep your fingers crossed for me. It’s been a long haul.
