I wish I could say all went well today and the next step is clear. It wasn't all roses and the way forward isn't clear yet.
The neurosurgeon, Dr. Yamini, seemed like a great guy. Lacking the quirkiness of so many doctors, he was friendly, laughed at my jokes, seemed genuinely concerned, and responded with wisdom to the situation at hand (as best we can tell).
I'll try to stay within the nutshell. He agreed she has Chiari I Malformation (knew he would), but didn't feel we should schedule surgery just yet. Not because Molly might get better, but because of at least a couple of things...
1. There is no evidence on the MRI films of any major effects from the Chiari, though the Chiari itself is evident. Often Chiari sufferers have developed one or more cysts in the spinal cord called a "syrinx." At the least there are often spots on the chord that show problems occurring in and around the spinal column. Molly's spinal chord is "pristine" according to Dr. Yamini, meaning it looks just fine and has absolutely no noticeable effects from the cerebellum pressing on the spinal column.
Because of the lack of noticeable trauma on her spine, Dr. Yamini is curious about whether or not the symptoms are coming from the Chiari Malformation or something else.
2. Molly's symptoms don't seem to match what Dr. Yamini has seen many Chiari patients. Often people experiencing dramatic Chiari symptoms have had some lesser symptoms long before. Things like chronic, bad headaches. Molly's symptoms just started a month ago, and she went from very healthy and feeling good to awful symptoms.
Dr. Yamini was also concerned for Molly's unbelievable balance problems, and wasn't exactly sure her symptoms would be this dramatic when the Chiari hasn't produced noticeable effects on the spine.
Because there is no trauma and the symptoms are not quite aligning like typical Chiari, Dr. Yamini is questioning whether there might be a different problem causing Molly's symptoms. He said he assumes that Chiari is still the heinous culprit (see this at minute 3:40), but he isn't confident enough to perform such a dangerous surgery without ruling out some other possibilities.
Next Steps
Dr. Yamini will be consulting with his two colleagues at the University of Chicago, Dr. Curry and Dr. Frim. All have performed a number of Chiari decompression surgeries; Dr. Frim has performed the most. He will also talk with our neurologist. We are waiting for a phone call sometime this week (hopefully early this week).
Our Thoughts
We are exhausted and frustrated. It took nearly 3 hours to get to the hospital this morning (rush hour + a 4 car pile-up = Steve yelling at cars).
We feel both better and worse about things. We feel better because we like the neurosurgeon and are thankful for his advice, cautiousness and candor. We also feel better because we had assumed this surgery was a near-emergency situation. He says it isn't, and we believe him. We are thankful that we have a chance to make sure we don't do this surgery on too little info and regret the pain, suffering, and risks later.
We feel worse because we felt this was a cut-and-dry situation. "It's Chiari, it's not treatable by pain meds, so we plan to operate and make things better." Now we feel a like we are being re-enveloped in mystery. "Is this really the Chiari? Or could it be something else? And if/when she has surgery, will it really be the solution or will major symptoms remain?"
We hate the "worse" part of this. It was a long, difficult drive home as we thought through the situation and wondered how long Molly would keep suffering like this. I think Molly is more depressed about things now. But in the end I think we are ready for whatever comes and look forward to doing whatever is necessary.
Oh, and the best part of the day was eating at P.F. Changs on the way home. Orange Peel Shrimp, baby!
