Dear Canadian Neurosurgeon, please proceed to the next century
Posted Sep 07 2008 8:01pm
This is how I feel after the two neurosurgeons I have seen in Canada. After my initial diagnosis of syringomyelia, I was still left with a lot of symptoms that did not fit with syringomyelia but did fit with chiari malformation. I have had symptoms which started in 1994 following an MVA and have ever so insidiously increased of the years. I will list them as follows.
-sub-occipital headaches radiating to behind eyes (3 or 4 days a week for the last 12 years)
--numbness and tingling down my arms (mostly right) and into hand and fingers.
-abnormal, excessive sweating on the right side of my forehead.
-neck pain and stiffness-upper back pain and stiffness radiating into shoulders.
-visual disturbances-blurred vision, "twinkly lights" in my peripheral vision and double vision
-tinnitus(ringing in my ears) and ear pressure. Feeling at times like I can't hear well and sometimes very sensative to loud or high pitched noises.
-heart arrthymias including tachycardia and irregular pulse-dizzy and faintness when standing up
-numb patches especially below left knee to ankle, to lips and tongue and groin
-painful muscle spasms to hands,legs and feet-weird sensations at times when swallowing and choking on liquids
-Pseutumor cerebri symptoms (symptoms of increased ICP)
-bladder issues(difficulty starting and weird tingly buzzy feeling for about an hour after voiding)
I went to two separate neurosurgeons in Canada, one in Vancouver and one in Kelowna with my list of these symptoms in hand. I was becoming increasingly worried and scared about all these symptoms and really wondering if I had a chiari malformation. Because of all the research that I had done and the message board I belonged to I knew that I had all the most common symptoms of chiari malformation. I had read Dr. Milhorat's study and knew that the basic mechanism of chiari is a small posterior fossa CAUSING the tonsils to herniate downward and I could tell from looking at my MRI that there was definately crowding going on. I went prepared with a list of questions, Dr. Milhorat's study and my optimism.
I was sadly disappointed by both visits. They were both completely against hearing any of the research I had done. They both did not believe in the existence of Chiari 0. According to them if my tonsils were above the magic line then I did not have chiari. They both became outraged and literally red in the face when I mentioned going to The Chiari Institute in NY for a second opinion. They both spent about 20minutes with me and couldn't wait to leave. The bottom line from both of them "You're syrinx is too small to be causing symptoms, You don't have a chiari malformation. I don't know what is...maybe MS? It's not my job to figure out the problem"
I admit that I cried after the first appointment. I felt so discouraged and alone. By the second appointment I was not surprised to hear the same message again and I did not let it get to me. I KNEW there was something going on with me. I remembered how I used to feel and how I felt now. My intuition was telling me that I had Chiari and that I needed to go to NY to get answers. I will write about my trip to NY in a separate post but I did travel there and have been diagnosed with Chiari O. I do have a small posterior fossa and my tonsils are minimally herniated. I also have cranial settling which means my skull slumps down when I am upright further adding to the problem. Dr. Bolognese believes I have an Occult Tethered Cord which is the cause of my syrinx. The tether puts traction on your spinal cord and causes the syrinx to form. I also have an elongated brainstem due to this same mechanism.
Basically all of what I have been diagnosed with and believe to be true are all contraversial in Canada. I believe this is changing and there are more and more studies being done about the exact disorders I have. Eventually Canadian Neurosugeons are going to have to stop thinking of these as contraversial and experimental and start treating us. I hope this happens soon. I know I am not the only one in this country that is suffering while waiting for our medical system to catch up. I am trying thru this blog to be a big boot in the behind of the Canadian medical system.