Ma.. Ma… Ma… My Schwannoma! (Part 1)

Posted: October 1, 2015 in Experiences, My Schwannoma
Tags: , , , , ,

This is my brain:

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I rather like it. It’s a nice brain. Admittedly, some of it might have been damaged when I tried to read Derrida’s “Of Grammatology” and to make sense of Foucault [note gratuitous PoMo snark]. But, basically, I dig my brain.

Chapter 1: Tingling

A couple of months ago now I began to have some numbness and other odd sensations in my face. I went to the doctor who sent me to get a CT scan to see if I had a stroke. The answer was “no”. From there I went to a neurologist who was a very talented guy but whose initial diagnoses was “huh. weird.”: He sent me to the hospital for an MRI.

Philosophy Lesson: Be careful what you ask for

As it happens, I think MRI’s are one of the most amazing things that physics has ever produced. I sort of always wanted to see one done. Of course I wanted to see one done on someone else but what the fuck. At least i got my wish.

Chapter  2: My MRI

Anyway……. The MRI showed a small tumor on my trigeminal nerve (that’d be CN5 if you ever need to pass the neurobiology 101 test). Were it anywhere but inside my skull it would be called a “nerve sheath tumor” but because it’s cranial it’s called a Schwannoma. That’s actually sort of odd because the deal is that the sheath covering your nerves is made of Schwann cells so it’s really the same thing. But, I guess if you have to resect your brain to get to something you need to give it an extra cool name. Beat’s me…

Chapter 3: Facebook Freakout

When I discovered my new friend I posted about it on Facebook. Rightly so (and I know out of love) a lot of my friends freaked out. This is because you can’t tell people you love that you have a brain tumor on the internet without making it sound terrible. So, before I tell you where my treatment plan is as of today, I want to tell you exactly what this thing is and why it’s not as terrible as it sounds.

Biology Lession: Trigeminal schwannomas

A trigeminal schwannoma is the second most common type of intracranial nerve sheath tumor, It is rare (Ha! Again I am unique!); second only to the much more common acoustic schwannoma. These tumors typically develop at the base of your skull and are formed of the Schwann cells (a type of glial cell) that accelerate the transmission of neuronal spikes across the length of axons. Basically these cells form the Myelin sheath of a nerve. [This I learned from taking neuroscience and neurobiology classes on Coursera!]. It is possible for these tumors to be malignant. But it is VERY rare.

Chapter 4: Where we are today

Now that you know what my tumor is and that it is most likely benign let me share where we are today. I met with a neurosurgeon at Oregon Health Sciences University today. He told me that there are 2 possible next steps. Either I could have a localized radiation treatment (i.e. “radiosurgery”) using one of several technologies (e.g. a Gamma Knife”) or I could have surgery. The surgery would be more complex and would likely end up with more numbness than I have today, not less. The radiation would be an outpatient procedure that would cause the tumor to shrink. The advantage of the surgery is that they could actually biopsy and study the tumor and could insure it is not malignant. The real question is this: is it worth an invasive surgery to determine that a most-likely benign tumor is truly benign at the cost of probably making one of the symptoms worse. Or is it better to assume that it’s benign (which statistics say it is) and just do the radiation? The neurosurgeon is trending toward recommending radiation but will consult with his colleagues.

Meanwhile, I will be seeing a friend of a friend who is a radiation oncologist to get a second opinion.So, with that, I’ve told you most of what I currently know. I cherish the friendship and support of everyone surrounding both my physical and my cyberspace communities. I love you all, I appreciate your support, love, prayers, thoughts, and kind words. And I’ll post more when I know more.

XO 2 Y’all!

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Comments
  1. LeeAnn says:

    Then, may I offer you a bit of music for you to listen to, a piece by Paul Hindemidth you may already know, the smarty-pants that you are: “Der Schwanendreher”, https://www.youtube.com/watch?v=NkFbrUEhSCc, now to be called “Der Schwannoma-dreher”. 😉

  2. twa44 says:

    May you be well! My thoughts and prayers are with you! Shabbat shalom and Chag Succot Samech!

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