The Neurosurgeon

I do this thing when I'm freaking out. I research. I read and read and read and read and look up terms and read some more. In preparation for this appointment I read every paper this neurosurgeon had published in the last twenty years. I also read a bunch of related papers.

I think I do this because it makes me feel like I have some semblance of control over the situation, and because I'm a scientist. Research is what I do.

The thing is, in all of these papers, cases where Chiari Malformation was successfully managed non-surgically were never mentioned. We went into this appointment certain we were looking at an inevitable neurological surgery, on our immune deficient three year old. On the drive there we were both jumpier than a long tailed cat in a room full of rocking chairs.

So. Much. Fear.

Then, a crazy thing happened. We were given hope. We were given hope that our child may get to live a normal(ish) life without anyone ever slicing his head open...

We spend A LOT of time in doctor's offices. While we've developed strong relationships with Rainbow's regular doctors and feel heard by them anytime we see a new specialist we brace to be rushed and brushed off. It's exhausting and frustrating and infuriating. Dr. Mapstone asked tons of questions, examined Rainbow, then sat with us comfortably in absolutely no rush and talked with us about his evaluation. He took Rainbow's immune deficiency very seriously and factored that into his decision about whether or not to recommend surgery. He answered every question we had honestly. We felt heard and we felt that this doctor was going to make decisions with Rainbow's quality of life and health as his foremost concerns.

The bottom line is that there is a very strong possibility that we will be able to manage Rainbow's Chiari Malformation medically, avoiding surgery, possibly forever. If we can, working with a neurologist, find a medication that manages his pain without unacceptable side-effects then he will have an MRI once a year to evaluate his Chiari and go from there. The doctor made it very clear that if his pain cannot be managed or if he develops other symptoms Rainbow needs to come back to him as soon as possible.

We have a plan.

There are so many unknowns and this neurosurgeon was also very upfront about the controversy in his field regarding the best course of treatment for Chiari. Some of the other neurosurgeons with whom we've consulted are more aggressive in their treatment and we still have an appointment at Dallas Children's next month.

We will be adding three more specialists to his team to evaluate an apparent spinal malformation, to possible remove his "huge" tonsils, and to determine if he has Ehlers Danlos Syndrome or possibly some other condition causing the odd sensations and pain in his limbs.

But... No one is going to be cutting his head open in the foreseeable future and I'll take that.

Until next time...