Sunday, February 04, 2007


Of the unsettling, wishy-washy sort

1. The cyst attached to the tumor in the right hemisphere of the cerebellum continues to grow. It has doubled in size since our December MRI in Tampa.

That said, the doctor indicated that the natural history for a cyst is that it will continue to grow until it causes problems, then the tumor is removed. Once the tumor is removed, the cyst will deflate and the surrounding edema will be absorbed. Surgery will not happen, however, until Steven has symptoms. (Symptoms other than dizziness and headache, as those symptoms could be attributed to factors other than the 3.5cm of gunk in his cerebellum.)

The doctor feels that we should wait this out until other symptoms show...just in case Steven is one of those very rare cases where the cyst suddenly decides to stop growing.

2. The symptoms that we should watch for are balance issues. Bladder and bowel issues were also mentioned as symptoms. To save some of Steven's dignity, I didn't ask for specifics about those possibilities. We do not want to wait for the headache/vomiting symptom on a cerebellum tumor, as that indicates a dire increase in inter-cranial pressure.

3. Once the tumor is removed, the issue with the massive amount of edema will resolve itself. The tumor is feeding the cyst and associated edema. So once the small tumor is removed, the edema in that area of the brain will dissipate.

4. No, we have no control.

This disease is insidious. It is mean and nasty. It never ends, and we seem to have to live by it's rules.

Steven's next appointment is in August...two weeks before Steven is set to attend college for the very first time...two weeks before he moves into the revelry that we call "dorm"...two weeks before he can sit and browse in that big musty library...two weeks before everything that he has worked so hard for.

The doctor who saw Steven mentioned the possibility of coming back in three months instead of six, just to check things out. The doctor in charge of the study, however, said six months.

The doctor reported that this cyst was seen in August. (The radiology report, which I received after this appointment didn't mention a cyst. So, either it was absent or very, very small.) We were not told about it then, but the doctor today mentioned that in August it was a mere cusp around one side of the tumor. In December the cyst measured roughly 1.0 X 1.3 centimeters. Today it is measuring roughly 2.5 at it's largest point.

My guess is that there will be continued growth three months from now and six months from now. After all, this cyst has grown since last August and it has doubled in size since December. While the tumors can lay dormant or grow painfully slow, the cysts seem to follow a bolder path.

No, we have no contol.

We simply have no control.

1 comment:

diary of a genetic defect said...

answers! I don't mean to be negative but why can't they just get that bloody thing out. When they took mine out it was sticky and that meant a bit of my brain had to come too. My dad's balance is a problem now. Leaving it for 6 months seems insane. I think they should take it out now and then he'll recover for the start of college. It may he his tumour but more importantly it's his life.
I'm cross on your behalf. Wait till the symptoms come, for goodness sake Steven is having symptoms now and he needs to feel free of the bloody thing.


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