WOW. Okay so September was a hellatious month. It was crazy busy and filled with so many misfortunes and heartbreaks it is amazing I made it to October at all. So I sincerely apologize for being away for so long, I never have intended to go that long without posting and do not in the future. I promise I will catch you all up on the important stuff that has happened to me over the past month but I know you are all dying to know about the big one. The Doctor appointment at The Chiari Care Center with Dr. Oro.
Now getting to this appointment in its self was extremely stressful. The Chiari Care Center is located just outside of Denver, CO. It’s not a long drive from where I live. It took us about 9 hours taking I-80 (I-70 is quicker but that is a story for another time) Totally worth the drive for a doctor that knows what he is doing. They had me scheduled for 3 days worth of appointments, a Wednesday thru Friday. This meant we needed to be there in Colorado by Tuesday night. Although we chose to go with a different hotel than what was offered I must mention that The Chiari Care Center partners with some local hotels to give discounted rates, some up to half off, to help their out of town patients. Just 2 days before we are to leave and we are scrambling to find a suitable dog sitter, we have not a single penny left to our name after you budget gas so we are looking at not eating besides our complimentary breakfast. Furthermore, we are down to just my jeep, with me terrified it wont make the trip (again story for another time). Luckily we must have had someone watching over us because things ending up working out and we made it to Denver safe, sound, money to spare and my dog totally taken care of. Granted it was 2 am by the time we got to our hotel and I ended up not sleeping a wink but how could I? I was about to meet a REAL doctor.
WEDNESDAY: My first appointment was with Dr. Oro himself. First thing I noticed though was when they gave me their paper work they wanted me to fill out. They had this little survey about symptoms and it was like a total surreal moment. Every single thing they had on there either pertained to me or I could understand why they would put it on there. It was like “Wow, they know what they are doing don’t they” from the very first second I walked in the office. I get in the room with one of the assistants to go over history and the like and same thing, every question she asks me is the right question. Some are ones I wouldn’t think to have asked but they all make sense. After reviewing the massive amounts of MRI films I had brought with me Dr. Oro finally came in, and here was this man, that was different from all the others, he is gonna fix me. Unfortunately he wasn’t much different during that first appointment than most neurologists. Other than the questions he asked were much more intelligent and he definitely knew what he was talking about he was still a neurologist. They are a bit off. Don’t get me wrong, he was super nice and never once did I get the impression he was not hearing me or anything but it was an everyday appointment. He did the normal neurological exam then told me it had been nearly a year since my last scans so we were going to set those up for the following day.
Thursday: I had a CT and an MRI set up at 6:30 am then my appointment back at the CCC with one of Dr. Oro’s nurses at 9. It was an early morning, and come to find out we could have slept in a little. We get to the place we needed to be for my scans a little early because it’s always good to be early to a medical appointment, the building is all dark but its one of those ones that house lots of different companies so we decide to go in. We find the suite we are looking for right away but the door is locked. On closer inspection they don’t even open til 7! So we get to wait around for a half hour til they get there. Why make an appointment if you aren’t even open?! We were a little mad until they explained it was just a miscommunication and they get me right in to do my scans so I can be on time to make my appointment. My appointment was with Kim and it was an overall health type appointment. It was to examine things from what I’m eating to how I am sleeping see if there is something I can do to improve any of it or all of it. Kim was wonderful, she was understanding, non judgmental about any habits or anything I may not do. She even talked tailgating with me. Her biggest concerns were that I wasn’t eating enough and my sleep. Now I assure you I look like I eat enough but I have thought that myself some days. But we are on it now at least I am improving. She gave me a list of vitamins she would like me to start to combat fatigue, neurological inflammation and just plain good for you. We talked for so long about everything I had questions about and she gave me so much literature on so many things that I didn’t even think about before. Was a great appointment. After that it was only like 10:30 so Mark and I went to the Denver Museum of Nature and Science. That place took my breath away at times. They didn’t charge hardly anything, they gave us a wheelchair for free (we forgot ours somehow), and everything is hands on. I will be taking my kids there I don’t care if it is 9 hours away, it is that nice.
Friday: This was it. It was diagnosis time. Well I guess we already knew my diagnosis I had Chiari but to hear it from someone like Dr. Oro to validate my pain and struggles is all I really wanted and the time for that had come. He had us come into a meeting room instead of an exam room where he had my MRI and CT scans up on the computer. This is the first time I have ever seen the back of my head so clearly so I am a little freaked out, other Chiarians you probably have seen yours so you know what I am talking about. If I knew how to get the image of the disk and post it I would so my description will have to do (If you know how to do this please email me) My C1 is intact but after that there is just nothing there. Most of the back of my skull is missing. Gone. It’s a giant circle of black against the white of my skull on the film. As I am sitting here looking at this I am thinking “well no wonder I can’t go on a roller coaster or a speed boat or…….” But all this was normal, well normal for me anyways and normal for anyone that has had the surgery I have had. Everything looked great except one tiny thing that I will get to in a bit. Time for the great Doc’s recommendations. First thing he suggested was I probably have Occipital Neuralgia. This made total sense and I wonder why no one never brought it up before. There are some good options to treat it. The next thing he brought up was the Neurological inflammation. He said it can be triggered by foods and such. He suggested the Paleo diet that he is currently on. Another thing is that my spinal pressure is probably off. It could be causing my inability to lay flat. He ordered a special LP to check that. I will be getting that done here by doctors locally. The last thing was the little tiny thing that is wrong with my MRI its been wrong for a while. I don’t know what it is called but the surgery is way invasive and there is no guarantee it is even causing my problems. Although Dr. Oro isn’t just gonna write it off as a I’m not gonna touch it cause the surgery sucks case he wants to do more research and said there is a conference that he was going to that deals with my exact problem.
All in all I was very impressed with how the entire office worked and Dr. Oro obviously knew his Chiari. I felt well taken care of, listened to, validated and most importantly I didn’t feel like a pay check. He never promised any of his ideas were going to “fix” me nor did he claim to know that any of them were for sure what was causing the problems. He was up front and honest with me, a little quirky but head and shoulders over any other neurologist I’ve visited. He gave me options, I now have some hope, hope I didn’t have before this trip. And Hope is a Powerful Thing.