The accident happened just over 4 yrs ago. Jan. 3, 2003. I can still feel the impact of hitting the tree to this day. The closest that I could compare it to would be to drive your car into a steel barrier at 75 mph. I was treated for severe whiplash and hematomas, and given pain meds and muscle relaxers and told my injuries were deep, and would take time to heal, before I was sent on my way.
As the months passed, I progressively got worse and worse. I attemepted many times to go to the Doctor, but the minute you spoke of a car accident, they would say, we don't treat car accident patients. WHAT????? What kind of a Doctor are you? I don't know if it is a Florida thing, or if it is common everywhere, but the only way for me to get any help, was to go to the ER, where I spent many nights. I had not been given an MRI. They would always do Xrays and send me home with some form of a narcotic for pain. Because my accident was a hit and run accident with severe injuries, I was approved for the Crime Victim's Compensation, in which they would pay all of my medical bills up to $10,000.00, at a reduced rate of 66%, which by federal law, a Dr. has to accept that as payment in full. What a freaking joke. Have you ever went to a Dr., and told him he was only going to be paid 66%...I don't think so! I eventually had to work, after all I was a single woman with no income coming in. Every day was a struggle to me and it just got worse and worse. I would hurt so bad, that when I got home all I could do, is lay flat on my back. I felt like with one good shove, my head would literally fall off of my shoulders. Nobody understood my pain, because at this point, I still had no diagnosis. I felt my body crippling, and I had no help and no support from any direction. I finally found a Chiropractor who agreed to take my crime victims comp as payment and treated me for months, but there were no results, so eventually she sent me to a Pain Management Doctor, who immediately ordered an MRI....OMG, someone was actually doing something. I awaited the dreadful news, because I knew there was something seriously wrong, I was just waiting on a Dr. to finally tell me.
I will never forget the emotions that went through my head when I got that phone call. I was scared to death, and relieved at the same time, that finally we had a name. It is Syringomyelia. Of course, I had no idea what that was, and the nurse said the Dr. would go over it when I came in for my appointment. Well, I wasn't waiting...After all, my brother and Mom both had been in the Medical field for over 55 yrs between them, so I called my mom. I asked her, what is a Syrinx? She said, I have no idea. WHAT???? Aren't you a nurse? How can you not know what a Syrinx is? She said, I have never heard of it. So then I call my brother, who had been performing vascular surgery for over 20 yrs. Certainly, he would know. NOT! I guess about 30 min. had gone by when my mother called me back and she had spoken with one of the Neurosurgeons, who explained to her, just exactly what a Syrinx was. I cried so hard. I knew it was not in my head, as I had been made to feel so many times. My pain was real, my disease was real, now what are we going to do about it??? That is a question that I still ask on a daily basis, because they really don't know how to treat Syringomyelia. There is no cure, but there are things that are suppose to make us as comfortable as we can be.
I made the decision after getting very little help from the medical profession to move back home to Arkansas in December of 2004. It was not an easy decision for me, but I felt like I was dying, and I even began to pray for it.
To look at me, you cannot tell there is anything wrong with me. I walk normally, and I lead a normal life, well as close to it as possible. My life will never be normal. I live in constant pain, but I now have great Drs, who do their absolute best to keep me living somewhat of a normal life. I take lots of meds which help me function on an every day basis, and trust me...they have been my life savers! I get epidural steroid injections in my spine every 6 months in a series of 3, which also help tremendously. The Drs told me that I would never work again, and I do full-time, and I intend to continue! I pray every day for a cure for this disease. I have great faith in the mind. I think if a Dr tells you that you are going to die, you have two choices, you can either believe him and sit back and wait for it to happen, or you can do what I do. I am not going down without one hell of a fight! I love life way too much to give up!
Syringomyelia is considered a terminal disease that causes a person to literally waste away. Ultimately, it is the complications that people eventually die from. Arms and legs become atrophied due to immobility; organs begin to fail because the body's dramatic deformity causes them to over work. Stroke and aneurysm is a common occurrence for people in the later stages of syringomyelia.
Syringomyelia, (from the Greek "syrinx" meaning tube and "myelus" meaning marrow) is a progressive disorder of the spinal cord that affects over an estimated 21,000 Americans and that is still not clearly understood. Syringomyelia develops when spinal fluid, which normally flows around the spinal cord, instead enters into the cord and creates a cavity known as a syrinx. Over time, the syrinx may expand and lengthen, severely damaging the nerve fibers at center of the spinal cord. Once this happens, a whole array of symptoms can occur, including muscle weakness, stiffness, difficulty walking, paralysis and quadriplegia. Syringomyelia usually causes chronic pain in the back while at the same time causing an inability to feel pain and temperature in other parts of the body, especially in the arms and hands. \Generally, medications are the only road to relief for syringomyelia patients. Anti-inflammatories, sedatives, anti-spasmodics, diuretics, antidepressants and steroids are most commonly prescribed. Physical therapy and chronic pain specialists can be of great help. Consistent evaluations by a neurologist are recommended to identify other neurological disorders caused by syringomyelia.
For some, what helps is just coming to terms with the fact that some things are out of one's control. "In a way, it's a sort of blessing to have a disorder that progresses slowly. It gives you time to prepare psychologically for the quality of life issues that will have to be faced as well as a shorter life expectancy." And though chronic pain can be extremely alienating for a person.
My Syringomyelia caused by trauma to the spine. Today, as more people survive spinal cord injuries, more cases of post-traumatic syringomyelia are arising. As Dr. James Little, Associate Professor in the Department of Rehabilitation Medicine at the University of Washington mentions in his article published in Spinal Cord Injury Update, "Syringomyelia is an uncommon but disabling complication of SCI [spinal cord injury]. Although more than half of all people with SCI develop a cyst in the spinal cord at the injury site, only about four percent develop syringomyelia, in which the cyst fills with fluid and expands." No one yet knows what causes a syrinx to form in one person and not in another. The prospects for people with syringomyelia related to chiari malformation are usually better than for those with syringomyelia caused by other complications. This is due in some part to the relief that a surgical correction of the protruding cerebellar tonsils can provide, allowing more normal function of the nervous system.
Once a cyst has begun to form, even coughing, sneezing and heavy lifting can create enough stress to cause an existing cyst or syrinx to enlarge, resulting in more damage. Primary syringomyelia can be caused by injuries due to sports, automobile accidents and even infections such as meningitis. And because the symptoms aren't as prevalent at first, it can take years to diagnose syringomyelia, which unfortunately leads to poorer outcomes.
This spinal fluid, more correctly called cerebrospinal fluid (CSF), is a clear, water-like substance that flows around the brain and spinal cord and acts as a cushion protecting the brain from injury and as a shock absorber for the spine. Every time the heart beats, blood passes through the choroid plexus, a set of filters in several parts of the brain, which separate the CSF from the blood. When a syrinx begins to form, it interferes with the flow of CSF and, due to the blockage, the fluid then begins to build up in the center of the spinal cord wreaking all sorts of havoc on the central nervous system.
"Fibers for feeling and movement run together in nerve highways called tracts," according Dr. John Oro, Professor of Neurosurgery at the University of Missouri. "The spinal nerves bring sensory information, such as pain and temperature, into the spinal cord and send information out to muscles like on and off-ramps on a major highway." Syringomyelia frequently starts at the center of the spinal cord and so the fibers located there, which carry information about pain and temperature, are often the first disturbed in people with the disorder.
Other than motor impairment and loss of sensitivity to pain and temperature, warning signs of syringomyelia include severe headaches, muscle spasms, scoliosis, loss of bowel and bladder control, imbalance, and pain in the neck, shoulders, arms and legs. In the later years of the disorder, it often leads to loss of all normal function, resulting in life in a wheel chair or in bed.
Most people with syringomyelia have some degree of insomnia due to muscle spasms and sleep apnea.
Some patients also have what they call "brain fog." They cannot remember things that have occured. "It's really embarrassing and trying." And names are almost a lost cause.
Syringomyelia affects people of all ages, races and genders. Since it is still uncertain how and why exactly the syrinx begins to form in the spinal cord, curing the problem is near impossible.
The treatments that are available have had only limited success. A surgery to remove blockage and restore normal CSF flow is the most popular tactic but a recent study reported in Journal of Neurosurgery: Spine by Dr. Ulrich Batzdorf, a UCLA neurosurgery associate and expert on syringomyelia, shows that though many cases were stabilized, only fifteen out of sixty-four patients he operated on improved.
It is Magnetic Resonance Imaging (MRI) that answers any doubts and can visibly show a syrinx in the spinal cord. Recently, doctors have also begun using the Cine (as in cinema) MRI, which actually shows the flow of spinal fluid and whether or not it is somehow hindered. (Courtesy of the American Syringomyelia Alliance Project, Inc.)
Some people have surgery to place a shunt in their spine. Ideally, a shunt diverts fluid from the syrinx to another area of the body, often the abdomen, where it can safely be absorbed into the blood stream. But often, the shunt fails and the syrinx fills and expands again. This, unfortunately, is a common complication.
