Saturday, July 7, 2007

Back at the beginning...

Let's see, where do I start?

Those of you that know me know that I never like to settle for being "average" or "normal". Since birth, I was coached and taught to be the best at everything that I did. The result? 4.0 GPA in high school, 3.0 in college (graduating in 4 years while working full time the entire time). I got engaged within months of graduating college, married the following year, we bought our first house within 6 months of marriage and our second home 2 years after that. I'd say that classifies me as an overachiever with a slight case of OCD.

Unfortunately, I also overachieve on the medical side of things. Before I was born, my mom and dad were told that I'd have water on the brain. I was so scrunched up into my mom's ribcage that I had a rib mark in my head when I was born via c-section. The doctors at Children's Hospital in LA checked me out and dubbed me "normal". I wish they'd have been right.

All was "normal" until the summer after I turned 10. I developed appendicitis but no one seemed to know what was wrong with me. By the time the doctors figured it out, it had ruptured and gangrene had begun to set in. In a nutshell, I almost died, and when I finally pulled through and was being released from the hospital, the surgeon actually said to me "you didn't say that it hurt as bad as it did". I was 10. I apparently have a high tolerance for pain. The surgeon is lucky I didn't punch him.

In junior high everyone gets screened for scoliosis in PE. I (of course) got one of the little letters to my mom recommending that I go to a physician for further screening and diagnosis. I had x-rays. My curvature was borderline...meaning I was just off the hook for requiring a brace or further treatment.

About that time, puberty hit and I began getting headaches/migraines, morning nausea and nosebleeds. My mom gets migraines so that much seemed to be explained. No one ever figured out the nausea. And the nosebleeds were infrequent enough that it was difficult to find any correlation. I spent a lot of time laying down and reading - it was just more comfortable. Occasionally when I would get up off of the couch, I'd experience dizziness or vertigo and sometimes a ringing in my ears. I was really skinny and ate like crazy. My menstrual cycle was irregular - ranging from 5-8 weeks in between periods or more. Severe cramping and heavy bleeding, often accompanied by headaches/migraines.

In high school, it was more of the same. I was more active (Colorguard and Dance) and would have difficulty finding my balance in pirouettes. I was never a great dancer, but I got by. My sophomore year, I was practicing for a parade and slipped coming out of a turn and partially tore my ACL. I had an MRI on my knee, but nothing further.

College - morning nausea subsided somewhat (that or I learned to manage it better). Headaches/migraines worsened when I began taking Ortho-Tricyclen. Nosebleeds continued periodically. Typically my nose would bleed, then I'd have a second nosebleed within 24-48 hours, then I wouldn't have another for 2-3 months. I developed a fear of heights working in retail and climbing ladders. In retrospect it may stem from the fear of falling as I've lost my balance on a ladder enough times to have been scared. I began gaining weight - I attribute the gain to working and going to school full time and pretty much living on fast food. I got promoted to a desk job and gained even more weight. Sitting for most of the day caused my back to hurt - which I attributed to scoliosis. I saw a doctor for neck and shoulder pain and he said that it was stress related. I suggested that perhaps it was related to my chest size (I was roughly 5'6" 140 lbs and a 36D). He said that it was most likely stress. Feeling like it was all in my head, I went on with my life.

To summarize the symptoms through college:
-headaches/migraines (those that make my head feel like it is going to explode - my entire head hurts but the primary pain spot is in my forehead behind my left eye. The only relief is to take 600mg+ of ibuprofen and sleep it off - usually by burying my head in a pillow).
-nosebleeds
-morning nausea
-poor balance
-scoliosis
-neck/shoulder/back pain
-high tolerance of pain
-signs of neurological/spinal problems at birth
-dizziness/vertigo/ringing in ears
-irregular menstrual cycles when not on medication

91 comments:

Jennifer said...

I was recently diagnosed with Chiari I; reading your symptoms is STUNNING. I have had everything except the nosebleeds (and giant boobs) for the last 15 years! I too had to stop taking birth control pills, had missed periods, morning nausea, vertigo, balance problems...and every doctor I ever saw decided it was simply that I must be depressed! Thank you for your blog. It gives me so much hope!

Katie said...

I was just Diagnosed today and i was looking it up on the computer and you blog showed up on google i am so glad to have found your blogs i feel relived im very scared im only 17 years old and i might have brain surgery its scary i have my whole life ahead of me. Thanks!! --Katie

Laura said...

Hey, I have a question about the irregular periods... did you find that this was related to the chiari? I have been struggling with extremely irregular periods for years and was just diagnosed with Chiari this summer... it would be a load off my back knowing this could have something to do with it! i know youre not a dr lol, but if possible this can give me a jumping off point and some hope that I don't have ANOTHER medical issue!

Anonymous said...

I swear I could copy this segment and delete just a few sentences and use it as my own. Wow. And to think that with so many symptoms, they go ignored for so long. I didn't miss periods ever, nor was my head showing any signs of it at birth, but the rest applies. My symptoms began at age 10 also.
Christine

Shaun Clark said...

I got diagnosed when i was 6, spinal cord completely shot with fluid! Then when I hit puberty (I'm 19 now), I started getting really bad nosebleeds that happened about 4times a week. I'd sneeze, then blood would pour out. Maybe its something to do with the posterior fossa?

Tiffany said...

It has meant so much to me to find this blog! I'm a 33yr old single mom of 3, and I was diagnosed 2yrs ago after I had what I thought was a panic attack while at my boys's school. Four days later I found out I have severe vertigo, and an "incidental" Chiari diagnosis. The doctor made it seem like no big deal, so I didn't think much about it...until I began seeing a new doctor today. After telling her my history-- migraines that seem to never end, irregular periods since age 13, dizziness upon standing/vertigo, mild scoliosis, numbness in my legs, insomia, etc. She told me to go see a specialist right away. The crazy things is; I stumbled upon your blog while trying to find one. You mentioned seeing someone in Aurora...thats only 30mins away from me! I feel like I've wasted so much time.

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This is just my story of my experience with Chiari. Until I was diagnosed, I'd never heard of it, and I just want more people to be aware of it. I'm not a doctor, so don't quote me on any of this stuff - k? If you are looking for information about Chiari Malformation, a lot of the more informative posts are the older ones.