I was told years ago that I have a CM1. At the time, it was measured at 8mm. I was told Is asymptomatic. Yet, I have always been "clumsy" and out of balance. I have sprained or broken both ankles so many times the ortho needs to surgically repair both of them. My depth perception stinks and my vision plays tricks on me. I usually get headaches with sneezing, laughing, coughing, or holding my breath. The pain mostly begins on the left side at the base of my skull and goes directly behind my left eye and sometimes into my nose. Since that time, I have been in many auto accidents, have disk herniations, lupus, psoriatic arthritis, Hashimoto's thyroiditis, a bundle branch block, TMJ, and antiphospholipid syndrome.
Here is where the complications begin...I was involved in another auto accident in late July. At the scene, my left leg was cold and numb. When the ambulance arrived, I had to turn to be treated. As I turned, there was a line of cold that ran the entire length of my left arm, the back of my neck, and all the way down my left leg. After the first few days of hearing my ear ring, I grew more concerned. I have fallen over more than usual, twisted my left ankle twice and my right ankle once, so far. My head has pressure - like waves in it and I feel motion sickness and swooshing. My ears hurt and pop with small elevation changes and elevators make me nauseated more than I was.
I went for an MRI. The results vary from earlier readings. I saw a neurologist who said I have post concussive syndrome and chiari symptoms. He sent me to a NS. The Nurse Quack-titioner said I am not showing ANY chiari symptoms and that because the herniation is small there is NO WAY I even have a CM. She also sent me to have a CINE MRI done. The results of that state there is a 6mm CM and NO CSF posterior to the cerebellum.
Went to discuss the results with the NS and he stated that I have nothing wrong and the CINE is normal. He also said and I quote " I have seen 10,000 patients and none of them have the symptoms you have. I guess you are unique."
I then traveled 6 hours away to see another NS who claims to specialize in CM's. What a JOKE. I saw his PA who did an intake questionnaire. She did not explain anything and immediately referred me to another neurologist and an ENT. The PA told my family and I that an auto accident can make someone have these feelings and symptoms for quite awhile. She said she would discuss my case with the Dr. and let me know if I was a surgical candidate; because the Dr. only sees you if he feels that you are. SERIOUSLY????
The call came in - the doctor feels that you are not a surgical candidate. OK, what do I do to get some relief? Follow up with your neurologist or an ENT. I have some questions for the doctor...The PA voiced your concerns and questions to him. AND...?? I am still waiting.
I am so sick and tired of feeling like a pinball. I feel like part of this is because I have Medicare and symptoms could be caused from the accident. It feels like the NS's are hesitant to do anything because they won't be paid enough. Any suggestions?