Hi everyone.

Too many times, people with an unknown condition face so much ignorance when we just want some help.  A fellow Chiarian asked if I would share her story to help others understand what we go though.

 

Aylar Mousavi says,

I am writing this because no one should have to go through what I did at St. Michael’s hospital. I went to the ER because I had been vomiting for six weeks now. A medical student comes in and asks several questions, if I’m pregnant,  and so on. He says we will perform some blood tests and go from there. He said in a weird, sarcastic tone that he will also be doing a pregnancy test as if I’m lying about not being pregnant.

I say sure. I wait another hour and Dr. Joel Lockwood comes into my room with my results and mentions nothing about my blood tests, He asks instead why I came into the ER.  I told him because I had been vomiting for sis weeks now. I asked him about my blood test  results, which he says are perfect. I asked him, “Am I pregnant?” He said no, and asked again why did I come to the ER.  

Again, I tell him, I called a private clinic in Toronto. I explained my symptoms to them and they said I’m acute and shouldn’t wait for an appointment. I needed to go straight to the ER. Dr. Lockwood then said “You probably spoke to the secretary there. That’s why they said go to the ER.” I ask him if we should do a Cat Scan to rule out cancer. No, he says. It’s too much radiation, and you should ask your Gastrointerologist to perform a scope.

I asked him what if it’s from my Chiari, which I had to have brain surgery for. He told me, “From your symptoms, it’s not from your brain. We will do an ultra sound of your stomach area.”  I demanded a better answer and he just left the room. I saw a nurse outside my room, and I tell her that my symptoms can be from Chiari since my brain tissue is laying low and my spinal cord is being compressed. She said “Not possible.”

I ask what she means by “not possible” and if she knows what Chiari Malformation is. The nurse laughed and said “I do know. Your brain cannot be herniated.”  I ask for Dr. Lockwood, and she said, “I will ask him to come see you.” She then left the room, still laughing from what I said regarding my Chiari.

Someone else comes in, and says “We need this room. Go wait in the waiting area for your ultra sound.” I go to the waiting area and see Dr. Lockwood. I explained that I had an upright MRI recently in Los Angeles, which stated my brain is laying low, down to my C1 vertebra, and I have Craniocervical Stenosis. Dr. Lockwood said, “That’s not possible. You don’t have a herniated brain.”

I asked him if he knew what Chiari Malformation was, and he said  “Yes, something to do with C1 and C2 vertebra.”  No, I said. It’s a herniation of the cerebellum into the spinal column. He said, “Are you quizzing me?”  I said, “No, I’m not. I am asking if you know anything about my condition.” He said, ” You don’t have a herniated brain or cerebellum.  You would be dead, or not be able to walk.” I said, “Are you kidding me?! Take out this IV. You clearly don’t know anything about  my condition, and  I do not trust you.”

He walks me to the nurse where many other patients are sitting, and says sarcastically, “Take out her IV. She thinks her brain is herniated,” and laughs out loud. The nurse took out my IV and  I asked where I could change into my own clothes. She told me to  go to the washroom.

I change my clothes and ask a nurse what the doctors name was (Dr. Joel Lockwood). As I’m leaving, I tell Dr. Lockwood he should go back to medical school, research Chiari Malformation, and try to educate himself. He starts to laugh and tells everyone around him again that (laughing) “She thinks she has a herniated brain.”  Another nurse comes towards me in an aggressive manor,  and tells me that was NO way to speak to the staff.

I said, “What are you going to do?”  She said. ” Walk you out.”  I said “No, thank you. I can walk myself out.

I am asking you to please share my story. So many doctors and other medical staff are ignorant of chiari malformation. Many people with chiari die because they’re dismissed my medical personnel.  I am extremely frustrated and in absolute disbelief in the way I was treated. No one should have to go through what I did. 

 

Aylar, thank you for taking the time to share your story.