About this Blog

~Hi, my name is Courtney. I was a full time college student, starting to be a dancer, and used to work with kids part time, living on my own until my illness disabled me.
~I became sick in 2005. I created this blog in the summer of 2006 to record my "headache" diary and to see if anyone finds it interesting.
~12/2006 I lost my job then after, failed a year of college.
~2/2007 Dx Lyme Disease with Bartonella: prescribed 8 months of oral antibiotics. I'm not even sure if I ever had the Lyme Disease.
~11/2007 The doctor took me off medicines while I was still improving but not fully recovered.
~6/2008 Dx Chiari I Malformation by a neurosurgeon in Beverly Hills.
~8/2008 Decompression and Lamenectomy helped 80% of my problems.
~2/2009 Dx Hypermobility by an Orthopedic Surgeon/School Doc: Started PT, dancing, going to school and working.
~6/2009 Started working full time as an Infant-Toddler teacher, which requires lifting. Dancing part time, maybe I'll finish school eventually...lol
~12/2009 Dx Chronic Sinusitis: Stopped dancing due to constant infections.
~2/2010 Sinus Surgery & complication: Severe Epistaxis: Became severely anemic.
~3/2010: Dx Ehlers Danlos Syndrome: by Geneticist
~4/2011: Switched jobs, now work at a Pre-K teacher for 3 and 4 year olds. Less lifting!
~5/2011: Started PT and exercising again

Sunday, August 31, 2008

post surgery update

I'm home from the hospital. Ended up going to Ceder Sinai Medical Center. It was a good experience as far as the hospital goes but it was really painful. I'm still in pain. I was there from Tuesday to Sunday. I hope i heal up well and there is no complications from now on. I hope this helps me. I will see the doc on Thursday. And go back to school next week maybe. If all goes well. :-)

Monday, August 18, 2008

Surgery Postponed

So my surgery is postponed till next Monday because apparently I had doctors and nurses calling and leaving messages at my home (we are staying with my parents) about 17 messages asking me to call back because I needed some more blood work. Also I have to take 5 days of antibiotics to clear a minor bladder infection.

If I had gotten the messages right away I don't think the surgery would have been postponed. But maybe, all depends on the test results I think.

So I took the blood work today at Quest and I'm starting the antibiotics tomorrow. Here are the tests that were ordered:
Factor 8, 9, 11, 12
PT correction Mixing Study
VW Factor
Ristocetin CoFactor
Lupus Inhibitor
Antiphospholipid panel
Bleeding Time

All were taken except the Bleeding Time.

I guess the doc is checking up blood clotting problems because of the past blood work.

So the problem now is next Monday is my first day in school and I asked Mike to go for me the first two days except he will be with me those times. I don't know what to do yet... It's only 3 classes.

Friday, August 15, 2008

What is Arnold Chiari Malformation?

What is Chiari Malformation?

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. There are three primary types of CM. The most common is Type I, which may not cause symptoms and is often found by accident during an examination for another condition. Type II (also called Arnold-Chiari malformation) is usually accompanied by a myelomeningocele-a form of spina bifida that occurs when the spinal canal and backbone do not close before birth, causing the spinal cord to protrude through an opening in the back. This can cause partial or complete paralysis below the spinal opening. Type III is the most serious form of CM, and causes severe neurological defects. Other conditions sometimes associated with CM include hydrocephalus, syringomyelia, and spinal curvature.

Is there any treatment?

Medications may ease certain symptoms, such as pain. Surgery is the only treatment available to correct functional disturbances or halt the progression of damage to the central nervous system. More than one surgery may be needed to treat the condition.

What is the prognosis?

Many people with Type I CM are asymptomatic and do not know they have the condition. Many patients with the more severe types of CM and have surgery see a reduction in their symptoms and/or prolonged periods of relative stability, although paralysis is generally permanent.

What research is being done?

The NINDS supports research on disorders of the brain and nervous system such as Chiari malformations. The goals of this research are to increase scientific understanding of these disorders and to find ways to prevent, treat, and, ultimately, cure them.

Tuesday, August 12, 2008

pre-op apt went well

my husband and i are staying at my parents house for about 4 weeks. today was my preop appointment and it went well. went to the 15th floor on time and got an ekg. down to the 2nd floor to see the doc. i shared some concerns, showed him previous blood work and asked for an antidepressant now that i know a doctor cant say its ALL in my head and that it will help with pain. He confirmed that I have an umbilical hernia and I could take care of it later no problem. My ekg when i looked at it said I had some sort of arrhythmia but the doctor didn't say a thing so I think it's not going to effect my surgery. Went down to the 1st floor for a chest x-ray and 4 tubes of blood. Back up to the 15th floor to get an ultrasound of my heart a stress test (which I hated and couldn't complete) and another ultrasound of the heart.

What a fun filled day. Besides like 2 people every person at the hospital seemed really nice and on top of things. I like that I never have to pay for parking.

The sucky thing is now I cant take any anti-inflammatory meds.

I'm nervous but it's not too bad. I think I will be okay.

The question is now, where do I actually go for my surgery? lol. I know the hospital but it's not like I've done this before :-) I'll figure it out.
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