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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

My Dysautonomic Destiny


By Daniel Jacoby
June 2002

I: Pre-Dysautonomia

It was mid-1996. I'd just celebrated my 36th birthday. I had been in business for myself for almost 10 years and had a fantastic wife and daughter. Things in my professional and personal life were as good as they could be. My current company, which had only opened for business 3 short years earlier, was being bought by a public company and I would soon be able to take a few months off for a well deserved rest. Little did I know what the next few years would hold for me.

About a month into my 'rest' period, I noticed a very small lump on the lower right side of my neck. I walked into the Medical College of Virginia's Cancer Center on a Tuesday and asked if a surgeon was available to give me an opinion about the lump. As my wife and I stood in the lobby, the surgeon immediately identified the lump as thyroid cancer and asked when I would like to have it removed. I jokingly said, "How about tomorrow?", to which he replied, "fine". Before I could begin to worry about my newly-diagnosed health status, I was getting my pre-op testing done, stopping by the lawyers to make sure my will was in order and waking up at 4am Wednesday for my scheduled 6am surgery. Everything went fine. After a couple of weeks of recovery, they scanned me for remnants of the cancer but found nothing. This was a bonus, as I would not have to go through any radiation therapy. I had really dodged a bullet and had a fresh new perspective on life.

With my new lease on life, I started doing things I had wanted to do for years but just never took the first step. I started snow skiing as often as I could and my skill increased beyond my expectations. It was this new love for life that would ironically lead to what would become a fight that made my thyroid cancer battle look like a pillow fight.

I was on a ski trip with some high school friends in Steamboat Springs, Colorado, in February of 1998. I headed off on my own to the top of the mountain and found a great, slow paced slope that would provide almost an hour of leisurely skiing before I got back to the bottom of the slopes. It was to turn out to be anything but leisure. About halfway down the mountain I noticed a young inexperienced snowboarder at very high speed closing in on me. He was completely out of control and before I could even consider a way out, I was hit hard and knocked face first into the snow. My head made a violent motion backwards when my chin hit solid ground. At the time, I was able to shake it off and even continued skiing for the remainder of my visit. A month would pass before I would begin to see the signs of damage that had been done in the accident.

During March of 1998, I began to experience pain in my left arm, shoulder and neck. Not long after that, my lower back and right leg began to hurt a great deal. The pain became so great, that I visited a Neurosurgeon at the Medical College of Virginia, whom I still consider to be one of the best in the world. Following an MRI of my spine, he recommended against surgery because of my age and suggested that I try physical therapy instead. It took more than a year and a half, but the pain began to subside by the beginning of 2000. Unfortunately, I was about to start experiencing symptoms that I could not begin to explain.

II: Early Symptoms

As the pain in my arm, neck and leg subsided, I began to experience strange spasms in my throat, about every three weeks, that made me feel like I was choking. These episodes usually happened late at night or during sporting or other crowded public events. In September of 2000, I visited an Ear, Nose, and Throat specialist who diagnosed my problem as acid reflux and prescribed a daily dose of Prilosec. These intermittent episodes continued and, just before Christmas, I had an added symptom - the entire right side of my neck would be in severe pain and would often spasm for minutes at a time. At this point, I had no idea what was happening to me or in whom to turn. I just tried to relax and things seemed to stay in check. Until...

III: Sudden Onset

On Tuesday, January 16th, 2001, I was working about 130 miles from home on a project that required I keep a corporate apartment and be away from my family for 3 or 4 days each week. The weekend before I had experienced mild flu-like symptoms. Monday, I had an argument with a client whose business was doing poorly who refused to pay his invoices. Tuesday started with a poor nights sleep, a walk through icy snow to work and mounting pressure at the office. At 11am I had an instant major episode in my office which included a choking sensation, heat rush, dizziness, nausea and what felt like the flu being poured into my body. I did what I could to stand, did not even shut off my computer or grab my brief case and slowly trudged back to my apartment.

I had no idea what was happening to me. Lying down didn't help. A warm shower didn't help. I felt myself feeling close to passing out and propped myself upright on the sofa pillows. I held on for a few hours while taking in as much water and Gatorade as I could. I finally made it to bed, but was alone in the apartment far from home with nothing but cable TV and a cell phone. I remained in bed through four sleepless nights before mustering enough strength to drive the 3 hours it would take to get home. Within 24 hours of arriving home, I found myself at the local ER close to syncope at 3am. They diagnosed me with the flu, gave me some potassium tablets and sent me home.

I saw my PCP, who also made the same diagnosis. Knowing there was something more serious going on, I went to other doctors until I found one who actually did a "poor man's" tilt table test which showed my elevated heart rate from the lying down, sitting and standing positions. This was a major breakthrough, as I was soon able to investigate the world of Orthostatic Intolerance via the Internet and begin to find others that had very similar stories and symptoms to which to relate. I was also admitted to the hospital for EKGs, an Echocardiogram and a Tilt Table test

IV: The Darkest Days

Even though I had been diagnosed relatively early on, my worst days lay ahead. No one in my hometown knew much about treating the symptoms of my syndrome. I became so bedridden over the coming months that I couldn't even lift my head off the pillow or move my arms without triggering my tachycardia. I also began to slowly lose my appetite and lost 50 pounds during a 3 month period. From late February through June, I was completely debilitated.

With an upcoming appointment to the POTS Promised Land of Toledo, Ohio, to see the famed Dr. Blair Grubb, I had a feeding tube installed so that I could regain some of my weight and get nutrients for the trip. Dr. Grubb was very thorough and I left knowing even more about what was happening to me than ever. My family life and business life were still on a downturn, for obvious reasons, and money was becoming an added worry for our family.

V: Some Improvement

Continuing with the feeding tube, I slowly began to regain some of my strength and began slow physical therapy in August 2001. By the end of the year, I was able to slowly move around the house and work for short periods. I still could not ingest food orally and continued to have throat spasms that made me feel like I was choking. Before I knew it, I was taking 10mg of Ativan every day to help relax my throat muscles. While I was no longer bedridden, I still found myself mostly house ridden.

I also started learning more about Cervical Stenosis and how some patients with Dysautonomia found improvement through surgery, by having pressure on the cervical spine relieved. I was feeling optimistic about the future and the local newspaper even did a story on my situation (http://Eye-Q.com/news.asp), which probably became the first ever use of the words "autonomic nervous system" in any paper's business section.

In April of 2002, I followed the stories of several patients of Dr. Dan S. Heffez of the Chicago Institute of Neurosurgery and Neuroresearch, and decided to send my MRIs for his evaluation. On April 16th, I began a 2-day evaluation at CINN. While Dr. Heffez did not feel that my stenosis (compression of the spine) was as severe as many others he had seen, he sent me home with a custom fitted soft cervical collar and asked that I pay close attention to any changes in my symptoms. I found the collar to be a great help, with my neck and shoulder pain relieved. I was also able to begin sipping on soup broth and eventually began tasting pasta, mashed potatoes, scrambled eggs and even grits! I could supplement whatever I could eat with the feeding tube and began gaining weight back at a steady pace.

Six weeks after my evaluation at CINN, I called Dr. Heffez and requested a surgery date, which was to be June 6th (D-Day Anniversary!). The day before the procedure, Dr. Heffez called and suggested doing a bone harvest from my hip so that he would not have to use any metal, which would be stiffer and could put more pressure on the surrounding healthy discs. I agreed, knowing that my surgery would last longer and my recovery period would be extended and more painful.

Surgery lasted well over 5 hours but when I awoke, my hands and feet were warm for the first time in over a year and a half. I felt like I was hit by a truck, but knew I had made the right call. With a new found hope, and days and weeks of healing ahead, I am confident that I will improve and find relief from at least some of my remaining symptoms. While the anesthesia did a number on my digestive system, I am slowly gaining back some of my digestive functionality and can't wait to taste scrambled eggs again! Over the coming months, I will post my progress at http://Eye-Q.com/POTS/.

I know my business can wait, my wife and daughter are still by my side, and my health will continue to improve with time.

More Information:

http://www.CINN.orgThe Chicago Institute of Neurosurgery and Neuroresearch

http://Eye-Q.com/pots/My personal online medical journal

http://Eye-Q.com/news.aspMay 14th, 2002 article in the Richmond Times-Dispatch

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