Mass in Brain - Revisited

If you read these posts because I am funny, the following is not one little bit funny. I am not even going to attempt to be funny because I am feeling unfunny at the moment and will not apologize for it (dammit!).

I saw a second neurosurgeon last Friday at the UMD Gamma Knife Center for a second opinion on brain mass (we cancelled Harvard and UPitt after Hopkins consult). So this UMD surgeon thinks the mass in my brain may be a "very slow-growing" tumor. In his opinion, there is absolutely no way to tell what type of tissue the mass is without a highly invasive biopsy, but he cannot recommend a biopsy at this point, or any type of surgery, because of the deeply entrenched location of the mass inside the ventricle. Basically the mass cannot be accessed for biopsy because a needle cannot get to the center of brain.

In fact, my particular mass is quasi-inoperable. There have been about 100 surgeries TOTAL (not only at University of MD, but at all medical centers in the U.S.) to remove masses from this specific location; many with "high mortality and morbidity." This thing is in the dead (pun not intended) center of my brain, next to all sorts of very important brain stuff and to hack away at it, a surgeon would have to root through the entire "good" brain to access "bad" blob, which intuitively, does not require a medical license to recognize that it would cause a lot of messed-up stuff along the way. In his words, surgery to get to this mass would pose an "extremely high risk of death and severe disability." Wonderful.

Usually when there is a brain mass, treatment is to remove it immediately and "type it" for pathology, but not in this case. Right now, the recommendation is "watchful waiting [code for scans and prayers]." Oh - and a lumber puncture - which I am SUPER excited about, because I love needles. Given that I am a such a patient and low-stress sort of person, this is perfect news - just sit around, calmly, not worrying about it, hoping I do not go blind or develop seizures.

Course of action: UMD surgeon recommended MRIs (with contrast and IVs - more needles!) every few months for the rest of my life (!) to see how the mass changes ... may stay the same, but may not. If it stays the same, it will be fine. If it changes, then I am screwed. As previously stated, there is very little "wiggle" room inside the brain's ventricles for foreign objects to grow. Plainly speaking, even a "benign, congential" mass can be considered "malignant" in the ventricles because of the high degree of damage even a tiny mass can cause. There is no way to know at this point as there is not much precedent on how such masses behave. The location of this mass is "exceedingly rare" and occurs in @ one in two MILLION people.

I was informed: "to add to [my] neuroses - [the surgeon has] patients who have had masses that did not change for twenty years and then all of a sudden started to grow and needed to come out - brain tissue can be weird and unpredictable." He concluded, "I wish I could tell you not to worry about this and go get a life - but I can't - see you in a few months."

I have been trying to process. It may be fine, it may not be. Lots of scary questions, not many answers. Stupid, stupid brain.