Thursday, April 23, 2009

Diagnosis Part II

Jodi and Tolan were supposed to have an appointment with the neurosurgeon on Monday, April 13. Jodi had high hopes and a good attitude all day. Sadly, when the time came, a call was received and the doctor was "stuck" in surgery, so the appointment had to be postponed. Another day to wait.

The meeting was rescheduled for the following day and this time, went as scheduled. The news, however, was not good. Dr. Winters explained 2 things. 1)Normally there are benign tumors and malignant tumors, but in the brain everything is considered malignant (or life threatening) because there is no extra space in the brain for tumors to grow. 2) The brain is all about "location, location, location". In this case, Dr. Winters said, the tumor is in a very bad location.

The tumor appears to be growing in/and/or through the brain stem (almost wrapped around it) making it "inoperable" for all intents and purposes. At the time, he didn't even recommend a biopsy, because the tumor is very small and in such a critical place, there is a huge risk for making things worse.

The next thought Jodi and Tolan had was to "radiate it". Another quick tumor education ensued and it turns out it is far worse to treat a tumor the wrong way than not to treat it at all. If you radiate a benign tumor, it can become active, so it is best not to treat it until you know exactly what you are dealing with.

Conclusion: Don't operate. Don't biopsy. Don't treat it yet. Wait and see.

Not fun news, since Jodi's symptoms have been getting worse.

The doctor suggested other healthcare specialists who might be able to help and said he would take her "case" to the interdisciplinary board for further discussion by the team of experts. He also noted a neuro specialist at the University of Utah who has more experience with this part of the brain and might consider doing a biopsy to find out what it is.... a little hope.

Another very emotional few days trying to get appointments scheduled and find out where to go next.

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