As some of you know, there are very few Chiari Specialists in the entire country. Only one highly recommended in the state of NC which is Dr. Michael J. Rosner, office located in Hendersonville, NC. Being we are on the coast of NC, it was a haul across the state for this mission. On Saturday night, I had a pretty ugly onset of symptoms, lots of head and neck pain, speech impairment, loss of free mobility, hearing shot in combination of ears with thumping sounds and chaos, nausea, spasms, couldn’t think to speak when I could mumble a word. I was just a mess! I finally got off to sleep that night, with plans to leave early Sunday by vehicle if possible. I was originally slotted to fly with Angel Soars and was approved to do so, I decided to cancel that flight because I didn’t think I could fly honestly in an un-pressurized aircraft with how my head and neck already felt, was a bit afraid that I might be triggered further with symptoms. Not to mention there was a 10lb carry on limit and taking comfort items, let alone my purse was the 10lbs. However, I am utterly thankful for an organization like Angel Soars and will probably be utilizing their services post-op.
Sunday morning, woke up to not being able to lift my arms or legs, few minutes passed and I managed to wiggle my hands, but the pain I felt radiate down my body put me to tears after about 25 minutes of trying to awaken my limbs. It was like a wave of paralysis came over me and a shocking sense of pain I truly cannot describe in words. I managed to call the kids into our bedroom because my husband had ran out to the store. The kids lifted my arms, wiggled them, waved them up and down, worked with them to try to waken my limbs only for me to feel like “oh my God, I am not going to come out of this right now….” I started to call on God, asking for help, please let me get out of the bed, help me get up. By this time my husband had returned, one child went to get him immediately for help to sit me up. I was in complete tears. I remember him trying to sit me up and I felt a sudden increase of pain shoot down my neck and spine and I screamed from the agony. Not only did I scream, I managed to utter the words, “Dear God, do not let me live like this, I cannot live like this!” In my mind I had many things racing through, I knowing that Rosner is the best chance I have at getting help in this state, I had to do something and my choices were slim to none. I had to be able to climb on the wing of an aircraft to fly, or into a vehicle to ride or drive and driving was completely out of the question. Thankfully, I wasn’t the driver! Anyhow, my husband scooped me up and held me up for a bit because I said, I have got to sit up. I just had the urge to sit up and felt like that would help me get relief in that physical state. It was as if something was telling me to get him to sit me up so the cerebral spinal fluid could flow and send the message to my limbs to function. At this time, I had no certain idea why this was occurring with me. I managed to become mobile, slowly but I did it, I had tremors though. It took a few hours of struggle to succeed.
My appointment with Dr. Rosner was scheduled for Tuesday morning. I was in the waiting area about 5 minutes before getting called back to an exam area for vitals, weight, height, the usual stuff, directly from there right into an exam room. Was in the exam room a short time before he came in and began my exam. After doing verbal examination of discussing, he did a very impressive and thorough physical exam! “The Safety Pin” gave me a sure fire wake up call! I didn’t realize how hypersensitive some areas of my skin and limbs are. I nearly jumped off the exam table at some points. Oh, I’m sure you’re thinking “what did he do exactly with the safety pin?” Well, he took a larger style safety pin, sterilized it right in front of me, used it to start at the top of my head, down my face, arms, neck, back, legs, feet. By the time he got to my neck I was cringing, between my shoulders-cringing, down my legs and the closer to my feet the more I jumped like a frog in boiling point water! He didn’t keep going because I believe he got the point and I certainly did! I had to stand on one leg, well one leg has Greater Saphenous Reflux so already a struggle there, but it was the opposite leg that I almost fell over on! (insert lauging emoji and eye roll emoji) It was unbelievable how much I am truly effected by this. But after the physical exam, we (husband and I) were asked to come back to the conference room after I was out of the European fashion week paper gown and dressed. This is where I learned that not only do I have Chiari (confirmed again for 3rd time as if we needed another.) I also have a compressed and twisted spinal stem that means messages from my brain (cerebellum in particular) are being blocked from sending the information to the rest of my body to work! The cerebellum is considered what is called “the little brain” controlling motor functions and muscle ability.
During the final portion of this visit with Dr Rosner, we discussed the depths of the surgery and the benefits, also the possible complications that can come soon after and how they’d be corrected. He went over images from other patients who had similar Malformation as I have and how during the surgery the nerves had began to repair themselves. From slide to slide, start to finish, you could see a huge difference between before and after. He was open to questions, open to concerns, offered very transparent knowledge, shared his personal life and family. He made it a very comfortable experience! From the Drs I’ve seen so far, I have left in tears from disappointment and left feeling like “maybe this is just in my head” and then the pain or symptoms quickly reminded me, “oh it’s in your head but not the way they say!”
After a few years of broken, damaged or distant friendships because of having to say “I don’t think I should do that, I can’t do that, I can’t go there….” I finally now understand why. Having feelings of anxiousness as never before, unexplained bouts of aggression and frustration or more easily elevated levels of, cycles out of whack, increased number of cycles, extremely painful cycles, urination increased, vision decreased, hearing “huh, what’d you say?!” Loss, loss of appetite, silent seizures, speech impairment, trouble swallowing, weight fluctuations, weight loss struggles and I’ve never experienced before being I’ve always been a smaller framed person…. I could go on and on…. misunderstanding myself, confusion literally and figuratively. But now, has come the light at the end of the tunnel. Tentatively I am going for surgery in August. I’ll be in the hospital for a projected 5 days and released back to the world as a zipper head. Pictures of some people who’ve been through the brain surgery and their incisions to help you understand what zipperhead means.