Appointment Updates

8/10 Brain MRI
8/20 Appointment with Dr. Oro in CO (making this into a mini-vacation with my mom)
8/24 Appointment with Dr. Holly at UCLA
8/27 Appointment with Dr. Amirnovin at LDR (the NS I saw July 6th)

Appointment scheduled in CO

I just scheduled my appointment with Dr. Oro for August 20th. Wish me luck!

The Chiari Treament Center Called...

But the girl left a message and she was gone when I called her back. I plan to call her and UCLA on Friday to schedule appointments.

Brain MRI Scheduled

I just scheduled my brain MRI for August 10th at 2:00 PM. I have a follow up with the original neurosurgeon on August 27th at 10:00 AM.

Why the delay you ask? Because I have to pick up a CD of the films from the hospital and bring it with me to the appointment and I didn't want to risk not being able to get them in time for the only other available appointment on the 13th. Since this isn't life or death, I'm low on the appointment priority. They have to leave openings for the really serious neurological people.

I'm going to call and make an appointment with UCLA. The doctor there is on the medical advisory board for ASAP (found that out in the info I got yesterday) so I might as well get his opinion while I wait to hear from Colorado.

Red Letter Day!!!

YAY!!! I received a letter approving my brain MRI in the mail today!!! This means that I can schedule it finally. YAY!! (Note to my family - I will let you know when I schedule it. I will immediately update this blog when I do. Please do not ask me. If it's not on the blog, I haven't done it yet.)

I also received an info packet in the mail from ASAP that includes a TON of good info. (Why they can't just post it on their website, I don't know, but that annoys me.) The info is good and I'm going to read through it thoroughly when I'm done here. They have a Medical Advisory Board that will refer you to specialists in your area. (Again, why not on the website?) I will (of course) be looking into the specialists that are local.

I mailed my MRI CD off to The Chiari Treatment Center in Colorado today and will wait to call them next Wednesday if I don't hear from them before then.

I went to the chiropractor after work and he adjusted everything below my neck and massaged my neck to relieve some of the tension. My neck is still really tight, but NOTHING like it was before I started seeing him three months ago. I realized that my smaller neck (as a result of relaxing some of the muscle spasms) is what is causing MANY people to ask if I'm losing weight. That works for me! :)

Update

Well it turns out the email address is for someone who hasn't worked there in months. Of course it wasn't returned, so I didn't know that until I called on Thursday.

I answered some questions over the phone and they asked me to mail them the CD with my MRI films. I'm making a copy of it this weekend and mailing it to them on Monday along with a list of my symptoms.

Once they receive it the doctor reviews everything and then they'll call me to schedule an appointment if they deem me worthy of their time. (I feel like I'm applying to college or something).

Keep your fingers crossed!

Oh and I'm still waiting the approval from my insurance for the brain MRI. The neurosurgeon didn't submit medical records indicating the need for the second MRI - having taken a medical billing class I understand why this is necessary - most people (including insurance billers) don't. They submit them (they have to mail them which is really lame), the insurance company has an RN, and maybe even a doctor, review them and then they grant their approval. Again, it's like I'm applying to college or something.

The Chiari Treament Center

Well, my original neurosurgeon's office called today and left me a message that they were still waiting on approval from my insurance for the MRI of my brain. I came home and was reading the posts on the Chiari support group on Yahoo (click here) and came across The Chiari Treatment Center (click here).

This makes me happy...not only have I seen Dr. Oro's name all over the Yahoo Support Group site, but their website was very informative and user friendly. Dr. Oro is one of the BEST neurosurgeons in the US specializing in Chiari and they are located in Colorado. Now that would initially seem like it's far far away, but I have a friend that lives in Highlands Ranch, CO which is only about a half hour away from Aurora. How happy am I? Even better? They have an EMAIL ADDRESS to schedule an appointment and ask questions AND they accept my insurance. THIS IS SERIOUSLY THE BEST THING I'VE FOUND!!!!

Diagnosis & Research

I met with the neurosurgeon on July 6th. Having spent almost every waking moment doing internet research, I was confident that he wouldn't recommend surgery. (Based on the MRI report I was 3-4mm and having spent most of my life convincing myself that my symptoms didn't actually exist, I didn't think my symptoms were that bad.)

I was the first appointment of the day and yet I waited about 30 minutes before the doctor came in. He's a young doctor and new to their practice. He came in, did an evaluation, and then asked if I'd brought anyone with me. Up until that point it hadn't even occurred to me TO bring someone with me. My husband was at work as was the rest of my family. I was certain he wasn't going to recommend surgery and even if he had...I'm the one person in my family that can handle blood, guts, and medical stuff.

He took me back to his office and showed me my MRI film. Let's just say it looks a little more significant than the report made it out to be. He recommended surgery. Since I hadn't really thought this was the route I'd be heading down, I didn't feel accurately prepared. I asked the questions that popped into my head.

Next steps include an MRI of my head (the original MRI was just of my cervical spine). Based on my later research, I'm also asking for an MRI of my entire spine. This is to give us a baseline so that we can monitor closely post-op. I also want it to see what parts of my brain have been affected already (this will give me confidence that my symptoms have been all in my head - literally!) After the MRI, he's prepared to do surgery.

I left the appointment and faced the biggest challenge thus far - tell my husband and family that I need to have brain surgery. I debated over who to call first. I picked the husband and called to tell him at work. He had a lot of questions, some that I could answer, some that I went home to research. Then I called my mom and did the same - she wanted me to take everything to the chiropractor immediately. So I did. (How happy was I that I was on vacation and that the chiropractor takes walk-ins?)

The chiropractor asked a lot of good questions - Is the surgery really necessary? Is it really necessary right now? What happens if I don't have surgery? Again I went home to do more research. That was just a week ago, but it feels like a lifetime.

I stumbled across The Chiari Institute in New York's website with all of the informative videos - that answered a LOT of questions. It made me comfortable with the fact that I should have surgery in the near future before I develop some of the more severe symptoms. My history indicates that I will keep getting more severe symptoms as time progresses and the younger you are, the better you handle and recover from surgery. In looking at the success of the surgeries, it looks like the move advanced your symptoms, the less likely they are reversed by surgery.

Now I'm just waiting for approval by my insurance for the brain MRI (this is taking much longer than the first time - I don't think it's my insurance, but the doctor's office that is delaying this process - I need to start hounding them to get the ball rolling).

Once I get the MRI results back, it will be time to interview neurosurgeons and get additional opinions on whether or not I need the surgery. Through my research I seem lucky to have a NS that wants me to have the surgery without trying prolonging the inevitable. My challenge is that he is young and thus less experienced. Few doctors are experienced in Chiari, so this doesn't automatically disqualify him. I just want to find someone familiar with Chiari and have them evaluate me.

It seems that the big hubs for experienced Chiari surgeons are at The Chiari Institute in NY, in the mid-west, or at the Mayo Clinic in Arizona. I'm obviously willing to travel to get the best care, but because I'll be in recovery for so long after surgery, travel will add an additional expense and stress that I'd like to avoid if I can. The top neurosurgeon at UCLA Medical Center in Santa Monica, CA has a subspecialty in Chiari! That was a great find! Additionally, I have a friend who's father is a retired orthopedic surgeon that referred me to one of his neurosurgeon friends at UCI Medical Center that has experience with pediatric cases Chiari. After I get the brain MRI, I'll make appointments with both the UCLA and UCI neurosurgeons and see what their evaluations are.

Wish me luck!

Life After College - Diagnosis

The last 4 years sort of run together. I graduated from college, got engaged and planned a wedding, moved, got a puppy, bought our first home, got promoted, got a kitten, moved again. During that time I had numerous headaches/migraines, back and neck pain, signigicant weight gain, nosebleeds, and was tired all the time. In addition, I've had two bouts with amenorrhea (absence of menstruation). All of those symptoms were attributed to all of the stressful events, the amount of driving I was doing, and the size of my chest (now up to 38/40 DDD). I was generally physically uncomfortable almost all of the time which has made me a tad cranky with the husband (who, bless his heart, has put up with me and my moodiness).

More on the amenorrhea - both times resulted when I stopped taking birth control pills. The first time was shortly after we were married and I had determined that my migraines coincided with a specific week in the pack of pills (Ortho-Tricyclen). I stopped taking them to see what would happen to my migraines. I stopped the pills, the migraines were greatly reduced in both quantity and severity, but I also stopped menstruating. I went to the gynecologist and told her what I'd experienced. She did blood work and everything looked normal. She gave me progestin to see if I'd have a withdrawal period, I did and started taking Yasmin which she assured me was a lower more consistent dose that wouldn't cause more migraines. Period returned and after about 6 months, so did the migraines.

This continued until I'd had enough. The husband and I decided that while we weren't going to try getting pregnant, I'd stop taking the pills and we would just see what happened. My period was normal for about 6 months and then stopped. That was in November of 2006.

When I had gone to the doctor the first time for amenorrhea she had mentioned that my weight gain was most likely the cause of it. When it happened the second time, I was sure that my weight was to blame and promised myself to start doing something about it in the new year.

January 3, 2007 - I walked into 24 Hour Fitness and signed up for a membership with 5 personal training sessions to get me started. I was committed for all of January and February and was starting to see results when I noticed that my back and neck were starting to hurt constantly in early March. While at my company's sales conference in mid-March I wore a name tag around my neck for 5 days straight. I carried my cell phone, chapstick, pen, and a few papers inside of the name badge holder. My neck was in extreme pain for about a week after I returned, which I blamed on the name badge holder and the amount of time spent in the plane flying from coast to coast.

I waited for it to get better, but by the beginning of April it still hurt. I went to see my doctor about the neck and back pain with the hope of getting a breast reduction which I believed to be the cause of my chronic pain. For the second time in my life I wanted to punch a doctor. He said that it was stress related and not a result of my chest size. He said that I could have the reduction and still have the same type of pain because of stress. He prescribed muscle relaxers and pain medication and ordered x-rays "just to make sure".

When I got the results of the x-rays and saw that something was in fact abnormal and that an MRI was suggested, I called the doctor's office to have them schedule the MRI. They refused to do so unless I came into the office first. The first time I saw the doctor I had to wait almost 2 hours before he saw me. I told that to the receptionist and asked if they could just order the MRI since there was nothing they could do without that. She again refused, I vaguely recall yelling at her and hanging up on her (having worked in customer service for my entire working career this is definitely out of character for me).

In frustration, I called my mom who suggested that I go to her chiropractor who had helped her with her neck problems. I called and made the appointment for that Saturday (how cool is that?!). I handed the doctor the x-ray report and waited for what he would say. He explained the report and then explained what my treatment should entail. He said that I should consider a breast reduction and I literally burst into tears (also out of character for me - I am not a crier).

In addition to the treatment with him, he recommended a new primary doctor for me in Chino Hills who I promptly went to see. Her office was amazing and gave me referrals for an MRI and for an orthopedic surgeon on the very first visit.

Regular visits to the chiropractor led to great improvement. From my shoulders down I had very little pain compared to what I had a few months prior. My neck was still very tight and at the very top it felt like something was "in there" - an odd pressure that just wouldn't release.

Due to vacations and work, I wasn't able to schedule my MRI until the end of June. My doctor's office called me 2 days later and told me that I had Chiari Malformation Type 1. They were referring me to a neurosurgeon and asked that I come to their office to pick up the referral and report. This was July 3, 2007 and thankfully I was on vacation for the remainder of the week. I picked up the info and went home to schedule the appointment with the neurosurgeon and began researching Chiari.

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

Welcome!

Welcome to my blog! I was just diagnosed with Chiari Malformation Type I this week and will be writing about my history and experiences on this blog.