When I was a child my parents told me I had a serious disease. One day I marched into the Nurse’s office telling her I was really sick and my parents told me I had hypochondria. I just think I am a homebody and wanted to be near my parents. I admit sometimes I can be a little dramatic… most of the time I am joking. But these past couple many years I have had weird symptoms. Symptoms I thought for sure I must be making up because they are so broad but symptoms that were horrible. I just worked through the pain and discomfort because I had no choice. I lied through the pain and brushed them off making them seem small. But something was wrong. It felt wrong and it was frustrating. In my mind at times I was having a stroke. Or had early on set Alzheimer’s (minor hypochondria). But it didn’t stop me from going to work and working hard and doing a great job. It didn’t stop me from serving my seniors and working long hours to ensure they had a good quality of life. I didn’t want to complain more than having a bad migraine because I didn’t want people to think I was “faking it” and I know some people suffer so much more. Maybe one to two years ago I decided I deserved to feel better. I went to a neurologist, tried more medications and still did not have relief. In fact over the years I had tried 35 different medications without relief for my migraines. Last December I had 2 MRIs and 2 more in February. No tumors we’re found and I was grateful.
But, these symptoms?
-Migraines- the worst headaches, oh, the pain… enough to make me cry. It is so hard to explain and unless you have felt it you might not know. The pain and headaches that could not be controlled by countless medication trials.
-Neck and shoulder pain- they always hurt. Always. Lidocaine patches, medications, muscle relaxers don’t touch the pain or loosen the muscles. Chiropractic care and PT made it worse.
-Balance, dizziness, and sleepy arms- Daily I walk into walls. I can’t help it. I just accepted the fact I am a clutz. Recently I passed out at work. Missed a couple steps in the Harry Potter closet from blacking out. I can’t sleep at night because my arms, legs, and shoulders fall asleep off and on ALL night long.
-Swallowing- sometimes I literally forget how to swallow. It is scary. I panic when it happens. I can not remember how to swallow. The muscles do not work.
-Extreme Nausea and horrible gag reflux- I throw up a lot. I am nauseous a lot.
-Word loss- sometimes I forget proper nouns. When my head hurts a lot of words just disappear. Names of family and friends I have known my whole life. Names of places. Just gone.
-Memory Loss- there are holes. A lot of holes. Like years of my life just disappeared. (The last two symptoms are what really made me think I had a stroke or Early Onset Alzheimers).
-Insomnia- this might be genetic though. I can go weeks with 2 hours of sleep a night. It is miserable to be awake when you just want sleep.
-Vision problems- eyes feel like they are popping out of my head at times, seeing stars frequently, night blindness.
Weird symptoms, right? And symptoms from my head to my toe. They do not seem like they go together. It literally made me feel like I was crazy. Like I had a mental disorder where I was making it up and feeling these pains and miserable symptoms.
But the MRIs did show something.
They showed a Chiari Malformation. Something I probably had my whole life and just lived with.
Mayo Clinic defines it as “a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.”
In February my neurologist suggested I see a neurosurgeon. I had an appointment scheduled the middle of March but CoVid happened and my priority was keeping my oldies safe. The beginning of July they called to reschedule. July 7th I met with the neurosurgeon. He said no surgery. July 8th he called me back and said after looking over imaging more closely he recommended surgery. I had a 3rd virtual visit with him on the 10th and on the 24th met him in person to schedule surgery. To say it was a roller coaster ride in July is an understatement. A lot of emotions I will write about later.
Although my brain tissue herniation is relatively minor, the back part of my foramen magnum is putting pressure against my cerebellum and pushing it into my spinal cord. The is very little to no cerebrospinal fluid flow between the posterior foramen magnum.
It is kind of a relief to have some sort of an answer. So treatment? August 20th I have brain surgery scheduled. The operation will remove part of my skull near the foramen magnum to make room for my brain.
I like to explain it that I just have a big brain.
Hopefully these next couple weeks I will be better at recording my feelings. I want to remember conversations I have had the past month.
Laura Suzanne 