Tuesday, August 21, 2007

The Chiari Treament Center is the winner!

Dr. Oro and pretty much EVERYONE I met at The Medical Center of Aurora was AMAZING! My appointment was at 10:00 AM and we didn't have to wait at all. Everyone was very thorough and detailed and seemed genuinely concerned about me. They were more than accommodating and considerate of the fact that I was there from out of state. (40% of their patients are).

At the appointment we met with the nurse practitioner who went over my medical history with me and then translated everything into medical language for the doctor. He came in and asked a few more questions, did some basic neurological "tests", and then went over next steps. He wanted MRIs of my thoracic and lumbar spine, as well as a x-ray of my entire spine since I have scoliosis. He wanted to do everything immediately since I was in town. Keep in mind that it's after 11:00 by this time and I have a 5:15 flight home.

Since they were squeezing us in at the Imaging Center we had to wait an hour, for the hour long MRI. Mind you this is all happening during lunch time and everyone is still very pleasant and helpful. I finish the MRI (which I think has to be the world's LOUDEST MRI machine - it was my third MRI in 2 months so I consider myself qualified to make that statement) and they have arranged to do the x-rays on site, rather than send me to yet another center for the x-ray of my entire spine in one shot (at the facility I was at, they had to do it in 2 shots). After that they uploaded everything onto their network and we headed back to Dr. Oro's office for my unscheduled follow-up appointment. We waited 15 - 20 minutes and then met with the doctor. While we waited we talked to a lady from Kansas that was there for her second surgery because her first doctor didn't do the first one correctly. She showed me her scar and it was impossible to see despite the fact that her hair was cut very short. YAY!

Dr. Oro was VERY thorough and explained everything in layman's terms and answered all of our questions. While sitting there, I decided that I was definitely having my surgery at TCTC! My mom agreed, and it's not very often that we agree with each other without some level of debate. We scheduled the surgery for OCTOBER 2ND. Shelly went over EVERYTHING with me on the spot with instructions on what I needed to do before I arrived back there for surgery, along with ALL of the paperwork and forms I would need. As we were leaving we met the office manager who grew up in Southern CA just minutes away from where I grew up and still live.

We left Dr. Oro's office at 3:15 and made it to the airport exactly in time to return our rental car, eat a quick meal at the Taco Bell by security, go to the restroom and arrive at the gate 5 minutes before boarding. How cool is that? Everything just sort of fell into place and seemed right.

The absolute clincher is that my wonderful friend Margot and her husband Aaron live in Highlands Ranch about 15 minutes away from TCTC. They have generously offered to allow me/us to stay with them before and after my surgery and for my follow-up visit 8 weeks post-op. They are a lot of fun and excellent hosts and made me feel at home, away from home.

I've cancelled my other appointments in CA and have had zero second thoughts. I'm actually kind of excited to have the surgery and see how my quality of life will improve!

Not sure if anyone is interested in the surgery details...if you are, let me know and I will email them to you. Dr. Oro is now using a titanium plate as part of the procedure...I think it's kinda cool that I'll be a "metal head"! :)

Some additional details:
-I have at least a 31mm herniation putting me in the top tier (of course, I go all out when I do anything!)
-I may have a slight syrinx, but he is not concerned with it.
-Dr. Oro was unable to conclude that my Chiari caused my MIA period, but he was also unable to rule it out...

Friday, August 17, 2007

I haven't posted in awhile...

I've been just waiting to go to Colorado.

Now that I know what causes my symptoms, I've been experimenting to see what makes them worse or better. The longest I can sit/stand is about 4 hours and then I need to do the exact opposite. If I walk too much, bend over too much, lift too much, or pretty much do anything but constantly change my position and activities, I'm uncomfortable. It's like my body has ADD. Trust me, I don't do a whole lot. I go to work and sit on my butt all day, come home and walk my little dog, then rotate between my computer and lounging on the couch or in bed. On weekends, I do laundry and pick stuff up and put it away. It's a slow process because too much of any one thing and I'd be miserable. When I've done too much I take some ibuprofen.

I haven't been to the chiropractor in almost a month. Because I've been taking it easy, my mid and lower back haven't really hurt and when they start to, I can usually crack it a little myself since I'm now fairly loose.

Sneezing and coughing give me the piercing headache/head rush. I want to go to the gym or the lake or finish my new house, but I know that if I do I will surely get a miserable headache and end up in bed. As it is, I've had 2 "8" headaches (on a scale of 1-10) in the last few weeks. I've been lucky in that they both started coming on at the end of the day and I was able to take ibuprofen and lay down right when they started.

I've also been drinking more caffeine which is supposed decrease the number of headaches. In retrospect I did have many more severe headaches when I gave up soda/caffeine in the past. It's not the best thing for me, but it's better than getting the headache and taking more ibuprofen.

In a nutshell, I'm in survival/make as comfortable as possible mode right now. I'm anxious to see what all three doctors have to say.

Friday, August 10, 2007

Brain MRI - Check!

I had my brain MRI today at a different facility than the first one. This time it was an Open MRI which means that instead of sticking me in the tube the size of a tanning bed, they sort of sandwiched my head like a hamburger or something. The machine didn't actually touch my head, but it was just a few small inches away from my nose.

The nice part is that if I looked out of the corner of my eye to the right I could see out a window. The bad part is that doing that made my head hurt and it was quite warm in the room.

After the test started, I was laying there listening to the MRI noise when I closed my eyes and felt like I was spinning. (This has happened a few times when I've laid on my back before but I'm not sure if there is a connection.) I opened my eyes and started taking deep breaths, careful not to move my head. I resisted the urge to wave my hand to alert the technician that I was having a panic attack/about to pass out. It was scary, but it passed. The MRI lasted an hour. About half way through they shot me up with some contrast dye. Very uneventful.

I was a bit surprised when I got to go pick up the MRI images virtually immediately from the hospital. Keep in mind that at St. Jude they wouldn't let me pick up the order for the MRI without seeing the doctor and at Pomona Valley I could see inside my head right away. Very cool! I'm just not sure what it's supposed to look like. I guess I'll find out on the 20th!

Sunday, August 5, 2007

Note to Self...

Do not, I repeat do not, think that you can ride a SeaDoo without causing severe pain. Unless there is not another single vessel on the water, there is not a hint of wind, and you keep the SeaDoo just slightly faster than idling, you will be in severe pain. Stick to floating in the water on the mesh raft and sitting in the shade while drinking lots of cold water. Basically, act like you're 80. I think Will's Oma would do better on the SeaDoo than I do at this point.

Note to the husband, mother, and auntie: I'm sorry that I was crabby at the lake. In addition to the pain, I was extremely frustrated that I couldn't do something that only 2 years ago was something that I could do with mild discomfort. To suddenly feel hindered and helpless is something that I hope you never have to experience. I love you all for putting up with me. If nothing else, this weekend convinced me that I want to have the surgery.

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.