Last week seems like such a blur, but I'll do my best to update you all on how Mike's 3 day assessment at the Chiari Care Center at the Aurora Medical Center went, what was recommended, how today's appointment went with his PCP, and what's next....
First, let me say that Dr. Oro's office staff were ALL so very nice! It was absolutely wonderful to talk to medical professionals who truly GET it and acknowledge that Chiari Malformation is indeed a serious disease with too little research! We are, again, beyond grateful to those of you who made this trip possible through your donations and fundraising on Mike's behalf!
The first 2 days were spent with the PA and the NP reviewing Mike's history, his initial surgery, a comprehensive health exam, lifestyle evaluation, CT scans, xrays, etc. They explained the purpose behind everything they did and what they were looking for specifically, which was reassuring that they really do know their stuff!
Day 3 we spent with Dr. Oro. He walked us through all of Mike's MRIs and scans pointing out different things, what was good, what could be a problem down the line, etc. In the end, the good news is that there is no cervical instability and his chiari is still well decompressed with no crowding or spinal fluid blocked anywhere. He said that the medical team and surgeon in NC did a great job and followed the same procedure that he uses. Once he determined that bit of good news he went through a LONG list of conditions that are caused by Chiari Malformation and we talked through them one at a time, leaving 3 to think about:
1) Basilar Migraine - Dr. Oro said that he has it on the list because he believes Mike does have it, but it is not prominent enough to be causing all of Mike's symptoms; just was something to be aware of.
2) Spontaneous Intracranial Hypotension - I can't say that we completely understand what this means other than it's a spinal fluid issue caused by some sort of abnormality between the dura and the arachnoid space around the brainstem. He said that the surgeon's notes appear that everything was done right so it is doubtful, but he couldn't 100% rule it out completely.
3) Pseudotumor Cerebri - Dr. Oro has this at the very top of his list and feels it's most likely based on his symptoms, his elevated spinal fluid pressures and response to spinal taps, and scans. This is also what our PCP here in AZ has thought all along and our Neurologist at Mayo has at the top of the list but hasn't fully committed to it other than he has done the 4 spinal taps as well as a whole realm of medications to try to treat it. He really wanted to see what Dr. Oro found first before he moved forward with treating it using a shunt.
In the end, Dr. Oro recommended that Mike explore a grain free diet (he is very big on grain free b/c his research has indicated it can be linked with brain inflammation... not sure we're buying into it yet though) and also talked to us about doing the 3 day inpatient stay here in AZ for a lumbar spinal fluid drain that would mimic what a shunt would do. If Mike does well with it and it alleviates most of what is going on, then we know that having a permanent shunt placed would likely work. If it doesn't, then Mike doesn't go through a brain shunt placement for no reason.
Our neurologist told us before we left to call his office when we returned so we could meet and go over all of this information and make some decision. Well.... we called yesterday only to be told that another doctor was out on emergency medical leave and all the docs have had to cover the patients. Unless it's a true emergency appointment, they can't get Mike in until FEBRUARY! I nearly flipped out! We are mid treatment, he can't function well, needs frequent rest breaks with simple tasks like folding laundry, blurred vision, can't drive, can't work, has trouble with word finding, hands are numb, headache of a 7 out of 10 24/7, etc.... and we have to wait until FEBRUARY?!? I think not! (FYI... this is why I was so upset last night.)
Today we met with our PCP (who is FABULOUS by the way!). He took all of Dr. Oro's recommendations, ordered some more labs (that Dr. Oro wanted), and then said that we should keep the February appointment with our current neurologist, but he is also setting Mike up to see a different neurologist in the meantime and sending him everything he has so that we don't have to start over. We should at least have an appointment date/time by the end of tomorrow so Mike's not stuck because his pressures are rising again which is only making all of his symptoms worse and in his words, Mike's brain "is a ticking timebomb". He also said that he can order the 3 day lumbar drain himself if we want to do that, rather than wait until February. But I think our current though is let's wait and let this new neurologist handle that because Mike isn't fully committed to doing it yet. As with anything like that... there are risks. And, as always, our PCP said to call him day or night with any problems or concerns.
So... that's where we are. Colorado gave us no easy answers, but did give us good direction and confirmed what our PCP and neurologist have been thinking. Now it's just a matter of getting that ball rolling!
A Note On the Picture At the Top: This picture is one of the images from the 3-D CT scan of Mike's skull. I thought it was pretty cool.... if you look at it, you can see where they did the craniotomy!
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