Day 1

Hi there all. This is my blog to journal my chiarian life. Its been a tough road. I was in a motor vechicle accident on August 27, 1987. I was driving a Chevy 2 door, and was in the number one lane when another driver, thinking she would get ahead of the traffic, whipped past the second lane and realized too late that she would hit me. She was going approximately 35-40 MPH. I saw her mouth "Oh shit!" and I just clung onto the steering wheel and watched her in the rear view mirror.
I went to work, the other woman's car totaled. By the next day, I was crawling around on all fours. I couldn't stand upright. Dennis had left to go fishing in Alaska two days before and I had two little boys to care for. Matt was 5 and Dennis Daniel was 3 years old at the time. They ate lots of toast.
I sought out chiropractic, massage therapy. I tried to go back to work at Alaska Airlines at the Oakland airport as a customer service agent, but I couldn't even pull open the drawers. I left in tears and spent another month off work.
I sought orthopedic specialists, begged for relief from the pain, no such luck. I finally settled after transferring to Seattle in April of 1988. In California at the time you were allowed a year to settle.
Fast forward, I continued to work, with episodes of pain, usually three weeks of muscle relaxers, hydrocodone and I would be fine. I worked out, worked full time, Dennis Patrick worked in Alaska, and we lived, traveled and laughed. We have been to Australia, Mexico, England, Ireland..Alaska on the Kodiak and Determined to visit Dennis Patrick.

I transferred to Airfreight in 1996, and worked there until 2000. Just after 261 went down on January 31st 2000, I got word that my bid to Bellevue City ticket office came through and I transferred there. I think the emotional stress and sadness of 261 put me over the top, as I don't think I have ever been so sad before about an event. I rushed to airport the day it happened, and helped at air cargo. I woke up the next morning with hot tears in my eyes at the sadness of it all.
At any rate, I continued to work at the BVU office with some of now my closest girlfriends/co-workers. Tracee Stubrud, Suzi Smith, Kim Thayer, and Katherine Torrence. They helped me as much as they could but there wasn't anything that could be done about the pain issues I was suffering.
I sought out relief with Group Health, and never had a MRI...told I had "coat hangar syndrome" with a rheumutologist telling me its right here in this book. After 2003 I changed to Aetna, where I finally got MRI's of my neck and found that there were disc herniations, dessicated disc, lordosis of the c-spine.
I received treatments including epidurals, facet nerve injections, radio frequency lesioning, prolotherapy(got a collapsed lung with the 5 th treatment), massage therapy, rolfing, chiropractic. Sheesh....all these things and still pain.
In October 2003, I took six weeks off seeing if taking time off would help my pain levels, it did not. I returned to full time work at the Bellevue office and just tried my best, but came home in tears. I found support on line with Brain talk, and other chronic pain support boards.
In April of 2000, my step-mother Juanita passed away. I dearly loved her. I became responsible for my father's care due to Alzheimers. I had Power of Attorney for his finances, responsible for selecting his home amongst other things.
In May 2004, I was awarded a bid to Washington DCA to work for 60 days. I was unable to go until the beginning of June 2004. I worked with John Fujioka, Pam Curtis, Marcos Comotto, Connie Carlson....one other I cannot remember right now. We worked 6AM-930AM then we would catch the shuttle back to the hotel for the free breakfast at the Embassy Suites. At the urging of the hospice care I took the bid, even though my father was ill...he passed on June 24, nine days after I arrived in DCA. I returned to Seattle to take care of his arrangements. I returned and finished out my assignment in DCA.
I returned to work in Bellevue and warned the girls that Bellevue was on the chopping block, and that our jobs were in jeopardy. The closure was announced on September 9, 2004 with a closing date of December 31st 2004. We would remain on the payroll until January 5, 2005. We all took the VSI(Voluntary Severance Incentive) that was being offered to management as well.
I figured that if I lasted two more years at best, I would walk out the door with nothing. Now in hindsight, I would of taken a medical leave as eight months later I found out that I have chiari, Ehlers-Danlos, Thoracic Outlet syndrome, Eagles syndrome.
I requested a new MRI in July 2005 from my pain management doctor, and he ordered one specially through CDI in Mount Lake Terrace WA to find any "nuances" surgical or otherwise. The Chiari was apparent from that MRI to the doctor there.
My search began in earnest for answers. I requested and got a referral to Dr Ellenbogen at the UW, who ended up calling me and dismissing me by phone, him telling me to "run if anyone wants to operate on me" and "those meds aren't the ones I would prescribe to you". I continued my search on the internet. I found the Chiari Institute in Great Neck NY.
I filled out a questionaire, and received an appt date in November. Dennis and I went to NY and I had additional testing in NY, CINE MRI, CT brain scan, thoracic MRI, and went to meet with Dr Mora, and Dr Bolognese. The good/bad news was that I am a chiarian and all the above syndromes.

On April 28th 2006 I had surgery for decompression, extraction fusion with Dr Milhorat and Dr Bolognese. Dr Douglas Carras was there as anesthesiologist. There was about 10 people present besides myself. I was scared, but when Dr M introduced himself I was less scared. Dr B had called the night before at the Andrew Hotel and spoke to me about what was going to happen. He called at 1015PM and said that Dr M had decided due to my relatively high score on the Ehlers Danlos scale that I needed to have invasive traction. I was put under and brought back up with screws on either side of my head, and I was even more scared. The added weight under fluroscopy and then took it off, and I told them I felt like a toad with all the weight off.

I was put under again, and Dennis had to wait 7.5 hours for me to come out. Then he was told it would be too distressing to him to see me the way I was. Little did he know that I was thrashing about crying "I hurt, I hurt, my head hurts", and crying...hearing the doctors saying "we gave her this we need to give her this" and mercifully I was out again and when I came to, there was less pain and I saw Dennis.