Dr Google and the Neurosurgeon

Contrary to the advice from my rheumatoid specialist, I Dr. Googled.  (Dr. Google: term for using google as a medical resource ... usually resulting in incorrect self diagnosis and unnecessary anxiety.)  I googled everything I could possibly find about this kind of tumour, and it's sister, astrocytoma. I googled all weekend, hours on end, reading everything I could find.  And there's lots to find.  Just not much that is actually helpful beyond the technical details of what this tumour is as defined by the scientific community. And pictures of other people's MRIs.

Site after site described the same thing over and over.

• usually in the cervical spine of adults, in the brains of children
• much more rare than brain tumours
• most common symptom is generalized back pain
• there are three locations of ependymomas -
• extradural (55%)(1). - between the vertebrae and the spinal cord (risky). 
• intradural-extramedullary(40%)  - within the outer layers of the spinal cord but not inside it (high risk) and
• intramedullary (5%) - inside the spinal cord (very high risk).
• most people aren't diagnosed until they start to lose motor control (an interesting tidbit ... I read over and over that people with the tumour in their cervical spine are usually first diagnosed with carpal tunnel syndrome).
• details of the surgical procedure ... heck, you can even watch the resection of this tumour on youtube! (it isn't for the weak-of-stomach).

I also googled my neurosurgeon.  Again, a dangerous thing to do because everyone's experience is different. My advice is to stick to those sites that identify your surgeon's technical skills, training, certifications and professional memberships.  Skip the "rate the doctor" type sites, and judge for yourself. (My official opinion will need to wait until post surgery, but so far he's the right guy for me).

I think it's safe to say that I had done my research and found what there was to find, by the time I saw my neurosurgeon. 

Fast forward through the part about the reaffirmation of my diagnosis, and his shock that I am still able to walk, to his description of this surgery.

He was concise. He was blunt. He was graphic. He held back nothing on the risks. He used the words "I could paralyze you". He said he has to cut open 5 vertebrae. He said he has to cut into my spinal cord. He drew pictures. He confirmed the things I had read in the medical journals.

Hello.  You have my attention ! 

He spent an hour with us answering every question we asked, but as I was leaving his office, I realized that his directness and intention to scare me was a tactic. A very clever tactic.  If you've ever been around people, you know that people don't listen.  They may hear you, they may believe they heard what you said, but they filter, interpret, spin, soften or modify whatever they are hearing based on their own capabilities to comprehend or to cope.  My neurosurgeon got through that mental game and had my complete attention. (Confirmed by later comparing notes about the conversation with my ever-objective and rational cousin who heard the same message.).  I'd rather be scared and understand the facts, than deal with someone warm and fuzzy but who doesn't have the hard conversation.  I want the nursing staff to be warm and fuzzy :)

Even knowing everything that the surgery entails and that the risks are terrifying, the alternative is that Herm will eventually paralyze me.

There is no net risk. There is no decision.  Let's go.

(1) source: http://www.ajnr.org/content/27/4/818.full