Headaches have pretty much consumed my life over the last 2 weeks. I first began noticing my headaches in August but it was nothing more than an annoying dull pain that would go away with some Tylenol. I didn't think much of it. Unfortunately those headaches were the beginning of a headache that would not go away. A headache that landed me in the ER (about a week and a half ago) and a headache that has led to 2 MRI scans in the last week (the 2nd MRI is forthcoming).
Both Dr. Shiple and my primary are concerned about Chiari Malformation. Chiari (key-AR-ee) Malformation is a disorder in which brain tissue protrudes (herniates) into your spinal canal. When the cerebellum is pushed into the upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid (CSF) that protects your brain and spinal cord. This pressure can cause neurological symptoms, which is unfortunately the case with me (although a diagnosis of Chiari has not been made).
In the first MRI we learned that I have a hypoplastic (underdeveloped) artery in the A1 segment of my brain. I am still not sure how significant this is, and if it is related to my headaches or not. It is a "birth defect" so I don't believe the artery is the cause of my headaches. However, I can't rule that out just yet. I was borderline for a herniation with Chiari in the supine (lying down) MRI and was told that it should have been upright. I am scheduled to have an upright MRI to see if the herniation is more pronounced next week (but I am hoping to switch that to tomorrow...fingers crossed).
I have an appointment with a neurologist who has a specialty in Chiari at the Children's Hospital of Boston in 3 weeks. I will bring both of my scans and hopefully we will leave with some answers as to why I am experiencing these headaches and neurological symptoms.
My symptoms:
-Headache- pain in the back of my head, feels like a balloon is expanding in my brain and is going to push my eyes out
-Neck pain
-Dizziness- especially noticeable when changing positions from lying down to sitting or standing up
-Tingling/numbness- feeling on the left side of my head that comes occasionally and travels down the back of my ear (short lived); also have numbness or weakness in my legs and arms
-Ringing in my ears and the pressure feeling of needing to pop them (similar to the feeling on an airplane)
-Focus/concentration problems
-Sensitivity to light- light makes my headache worse; I wear sunglasses all day
-Eye pain/soreness
*and more
*I also read that difficult swallowing is associated with Chiari, something I have been struggling with since my PAO surgery in March.
*These headaches are very similar to my epidural headaches I experienced last year as a complication from the epidural in my first PAO surgery.
Might I add, the Bruins are definitely not helping with my headaches! Maybe I'd be "cured" if they actually started playing like Stanley Cup Champions! Come on BRUINS you're killin' me!
Other updates-
My right shoulder still hurts but thankfully it doesn't just hang by my side when it is out of the sling. My right knee and ankle have been really bothering me lately and my kneecap almost popped out when I was walking to get my knee brace--go figure! I am so ready to have them fixed. I need to put my legs behind me so I can focus on walking and getting stronger (without interruptions).
I have increased from 1800mg of Neurontin to 2400mg! I have not noticed a difference just yet in the CRPS pain, but hopefully within the next week it will start to improve. I don't know that I can tolerate anything above 2400mg a day.
My back and neck pain have been horrible lately and I cannot make it through the day without a thermacare heat wrap. It's painful to breathe sometimes because of my back. There really is nothing I can do, except wait for my legs to be reconstructed so we can work on gait training and walking!
I need the fall semester to be over! I am exhausted and in too much pain to focus...please end now!
Oh, and apparently it's supposed to snow on Saturday! Hello mother nature....it's still October, chill!
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