Research and Resources..

I mentioned in the previous post that I started my research as soon as my doctor told me I had a malformation.  One very useful resource has been the ICA (International Chiari Association) FB page.  The head of the association, Pete, responds to everything himself, and he is a Chiari sufferer too, a very experienced one!  Getting a few answers from him and advice from their website really helped me know where to start.  I did as much research as I could on Chiari and decompression surgery, but there was a gap I couldn't fill on my own.  I found little to no information about doctors in my area, even in the state of North Carolina.  That's when I decided to put it out there and ask my FB friends what they knew. I received a few responses from friends who knew people that had Chiari and even had decompression surgery.  I planned to contact them to find out what doctors/surgeons they had seen, until 'the blessing' came along!  My friend Leigh, our little ones go to preschool together, reached out to let me know that her Dad, Dr. Gary Pellom, is an anesthesiologist at Durham Regional and also had brain surgery there years ago.  A neurosurgeon by the name of Dr. Peter Bronec assisted on his surgery and has since become a very accomplished neurosurgeon and is even very experienced with decompression surgeries.  The key with Chiari, as with many other disorders, is not just finding the best neurosurgeon, but finding one with a lot of experience with your specific surgery and who you also are comfortable with. 
I already had an appointment scheduled by my doctor with a local neurosurgeon for September 4th, and in her defense, I really didn't know what to expect.  I hadn't even seen a neurologist yet so I was going to have to start from scratch with a neurosurgeon, I got to go straight to the top!  She seemed somewhat familiar with Chiari and decompression surgeries, but there were some discrepancies between what she said about a few things and what I had found in my research.  She said that even though I have a syrinx (build up of spinal fluid in the cord from the pressure of the Chiari on the spine), that I did not have syringomyelia.  But in my research, I found that the two go hand-in-hand. In my opinion, she didn't have enough experience with my condition to make me comfortable.  She also told me that surgery wasn't necessary, that I could go on as I am now if I wanted to. This definitely made me feel like she really didn't understand how much Chiari affected my daily quality of life or know what my situation could potentially lead to in the future if I didn't have surgery.
I immediately contacted Dr. Bronec's office in Durham and set up an appointment for Sept. 18th with his nurse practitioner, Joey. This time I had much higher expectations. I had done more research and had learned a lot from the first appointment.  Thanks to a very kind neighbor who kept Logan, Kevin was able to accompany me to Durham, and we were as ready as we could be. 
Even with our high expectations, we were still blown away. We were hoping to get to at least shake Dr. Bronec's hand and put a face with the name that day, but knew there was a good chance we wouldn't see him.  Not only did we meet him, he took the time to sit with us for as long as we needed, a good 10-15 minutes, thoroughly explaining everything we heard from Joey and completing the physical tests he had done once again.  His 'bedside manner' was impecable and we can't believe how much time he made for us when he didn't have to.
It was evident even through the NP that they had a lot of experience in dealing with Chiari. We were told that on the scale of Chiari, a malformation of 0-5mm usually doesn't come with a recommendation of surgery, 5-10mm it is considered.  We were then informed that my malformation is 16mm long, definitely at the higher end of the scale, and surgery is almost a must as my symptoms will worsen and new ones will come, even paralysis, which I already knew.  Just in the few months since being diagnosed, my symptoms had already worsened.  I went through a series of physical tests and he couldn't believe with the severity of my Chiari that I still had such good use of my arms and legs.  He also mentioned something I hadn't heard before, that my syrinx should be white on the MRI films, but mine shows up gray meaning that there is the presence of protein, or blood in my spinal fluid.  They're hoping its just from broken blood vessels due to years of chiropractic treatments, but to be sure, we're doing a thoracic MRI to make sure there isn't anything else, like a tumor somewhere else in my spinal cord producing the blood.  Also, the end of my syrinx is not visible on the cervical MRI, it continues down past the end of the scan, so the thoracic MRI should show them where it ends and exactly how big it is.  As far as size goes, my syrinx is off the charts. 
My thoracic MRI is scheduled for tomorrow morning and I should hear back next week as to what, if anything, was found. As always, I'll keep you posted.  Continued thanks for all of the love and support, XO...