ABOUT SYRINGOMYELIA:
What is Syringomyelia?
Visit our "stories" page and see personal accounts of some people living with SM. What are the different forms of syringomyelia? Generally, there are two forms of syringomyelia. Non-communicating Syringomyelia In addition, one form of the disorder involves a part of the brain called the brainstem. The brainstem controls many of our vital functions, such as respiration and heartbeat. When syrinxes affect the brainstem, the condition is called syringobulbia. Some cases of syringomyelia are familial, although this is rare. Information with regards to the cause and different forms of Syringomyelia was copied from the website prepared by: Office of Communications and Public Liaison We thank NINDS & NIH for their hardwork. 1) Find a pain management specialist Currently there's no cure for Syringomyelia. ***************************************************** CHARLIE, SM I was a very active 37 year old. A professional performance horse trainer/coach/judge/breeder and serious show rider. I have many problems that I now deal with on a daily basis, mostly spasms and spacticity in my legs with excruciating pain... that is the worst I have to deal with. I can only walk short distances with forearm crutches and I use a Scooter 99% of the time. I have recently found out (thanks to one of our member's questions) that I have Arachnoiditis. The Arachnoiditis answers a lot of questions... like why am I having symptoms above the Syrinx!!!! I have had 2 enhanced MRI's within the last 8 months which show the size of the Syrinx has never changed since 1999... obviously, it doesn't have to; to cause all the central nervous system problems. I try to live as normal a life as possible by taking up new passions such as photography (hope you like my purple and white Dahlia on this site and the pics of the wristbands that I took). I have a good support system in place and I have dreams and goals for the future. Live life, love all and choose to be happy no matter what. "Take one step at a time and give gratitude to the Universe for every step you can take." Charlie
Syringomyelia is a chronic disorder involving the spinal cord. It consists of the formation of a Syrinx which often expands and elongates over time, causing havoc in the spinal cord as the cerebro-spinal fluid can not flow normally if a Syrinx is in its way. This may progressively destroy the spinal cord as the nerve fibres inside the spinal cord are damaged at which time a wide variety of symptoms can occur. To name a few, as nearly everyone with SM experiences different, yet similar, symptoms.... Severe pain, (throbbing pain, shooting pain in the arms and/or legs), loss of sensitivity especially to hot or cold, muscle weakness, motor impairment, numbness, tingling, muscle spasms and spasticity, sudden hot and cold sweats, headaches, loss of bowel and bladder control, as well as osteoporosis and scoliosis. In some cases, stroke, blindness or paralysis may occur, but the majority of SM patients suffer from headaches and chronic pain.
What causes syringomyelia?
A watery, protective substance known as cerebrospinal fluid (CSF) normally flows around the spinal cord and brain, transporting nutrients and waste products. It also serves to cushion the brain. In early development, CSF also fills a small canal through the center of the spinal cord—the central canal—which then collapses normally over time. A number of medical conditions can cause an obstruction in the normal flow of CSF, redirecting it into the central canal, and ultimately into the spinal cord itself. For reasons that are only now becoming clear, this redirected CSF fills the expanding central canal and results in syrinx formation. Pressure differences along the spine cause the fluid to move within the cyst.
Communicating Syringomyelia
In most cases, the disorder is related to an abnormality of the brain called a Chiari I malformation, named after the physician who first characterized it.
Chiari I malformation redefined: clinical and radiographic findings for 364 symptomatic patients (pubmed.gov). Chiari malformations are regarded as a pathological continuum of hindbrain maldevelopments characterized by downward herniation of the cerebellar tonsils. The Chiari I malformation (CMI) is defined as tonsillar herniation of at least 3 to 5 mm below the foramen magnum. This anatomic abnormality causes the lower part of the cerebellum to protrude from its normal location in the back of the head into the cervical or neck portion of the spinal canal. A syrinx may then develop in the cervical region of the spinal cord. Because of the relationship that was once thought to exist between the brain and spinal cord in this type of syringomyelia, physicians sometimes refer to it as communicating syringomyelia.Symptoms usually begin between the ages of 25 and 40 and may worsen with straining or any activity that causes CSF pressure to fluctuate suddenly. Some patients, however, may have long periods of stability. Some patients with this form of the disorder also have hydrocephalus, in which CSF accumulates in the skull, or a condition called arachnoiditis, in which a covering of the spinal cord--the arachnoid membrane--is inflamed.
The second major form of syringomyelia occurs as a complication of a TRAUMA, meningitis, hemorrhage, a tumor, or arachnoiditis. Here, the syrinx or cyst develops in a segment of the spinal cord damaged by one of these conditions. The syrinx then starts to expand. This is sometimes referred to as noncommunicating syringomyelia. Symptoms may appear months or even years after the initial injury, starting with pain, weakness, and sensory impairment originating at the site of trauma. The primary symptom of post-traumatic syringomyelia is pain, which may spread upward from the site of injury. Symptoms, such as pain, numbness, weakness, and disruption in temperature sensation, may occur on one or both sides of the body. Syringomyelia can also adversely affect sweating, sexual function, and, later, bladder and bowel control.
National Institute of Neurological Disorders and Stroke & National Institutes of Health
The National Institute of Neurological Disorders and Stroke (NINDS) conducts and supports research on brain and nervous system disorders. Created by the U.S. Congress in 1950, NINDS is one of the more than two dozen research institutes and centers that comprise the National Institutes of Health (NIH).
What should be done.
2) Find a neurosurgeon who is experienced in the treatment of Syringomyelia.
Surgery is the only viable treatment for SM, but not all patients will advance to the stage where surgery is needed. When surgery is not yet advised, patients should be carefully monitored by a neurologist or neurosurgeon. Periodic MRI's and physical evaluations should be scheduled at the recommendation of a qualified physician. Acupuncture, medications, and rest are some things many find helpful in managing the pain. Each individual should always consult with medical professionals for help in dealing with Syringomyelia or any other illnesses.
Visit our "Resources" page to find more information about Syringomyelia.
Syringomyelia - Trauma
Horse Riding
CANADA
I was also one of the top 10 Country Line and Couples Dancers/Instructor/Choreographers IN THE WORLD. On September 11, 1999 MY LIFE CHANGED INSTANTLY. I was thrown from a horse into a wall breaking my back in two places, compressing my spine and hitting my head against the wall causing a lesion to form on my brain. This was the second time I had broken my back from a riding accident, (but although paralyzed from the waist down the first time for 3 days), after L5 healed with the help of an Osteopath, I did not even have to have a spinal fusion NOR did I have any symptoms of SM.
After this second serious riding accident I was unable to control my legs let alone walk; was having symptoms too far fetched to be made up; and no one in Halifax could diagnose me (or even believe me). I had to send my MRI's to the Toronto Western to get a diagnosis. I was told I had Traumatic Syringomyelia (SM) - a tubular filled Syrinx (cyst) inside my spinal cord. Plus a lesion had formed on my brian called Hemiballismus (HM). I am the only known person to have both of these rare, progressive, incurrable neurological conditions in Canada. They both attack the central nervous system, especially SM. Although my Syrinx is not large, and I was told it wasn't large enough to cause any problems... I have had to re-learn to walk 6 times in the last 9 years. Every time it gets harder too. As well I have mild Scoliosis.
Syringomyelia - TRAUMA
CAR ACCIDENT
Christine, SM
USA
I was in a car accident in Oct 2005, rear-ended by a driver whose van had lost its breaks. He could not stop and I was at a stop light behind another vehicle taking my kids to school. At first, I could think of nothing but my kids. I jumped out of the car and opened the side door of my van and immediately took inventory of my kids and their wellbeing. I grabbed my daughter – then 6 and held her as she was scared. Once she calmed down, I took inventory of the van I was driving, surprisingly it held up really well. In all there was only $1500 of damage really done to it. Little did I know then, the real damage had not shown itself yet. My adrenaline must have been pumping hard enough for me to not feel anything but once that wore off; it was a whole other story. I did not realize how much my life was going to change that day. It started off so normal, I came home from working the night shift from the hospital as a phlebotomist, took the kids to school, ran some errands, did some housework, went to class at the community college where I was studying for the nursing program and then took a nap in order to do it all again that night. When I got up to go to work that night, I noticed I was sore – I wrote it off to the accident and the jolt and went to work. While at work, I started to experience the nausea and it got so bad I could not do my rounds so they sent me home. I was off the next couple of days anyway since I worked 12’s and by that Saturday, my entire life took a turn for the worse. I ended up in the quick care because I could not sit, stand or sleep without extreme pain, the doc at the quick care gave me Lortabs for the pain said I probably tore a muscle from turning when I got hit and then told me to follow up with my PCP.
After a while, when I was not getting any better, they decided to do the x-ray – by that time I had also gotten in to see my PCP and they said it too was most likely a torn muscle which there was nothing they could really do. No one realized how wrong they were. I was still working at this point although it was on light duty at the hospital which meant I spent all my time in the lab versus going out on the floor to draw. I wore back support in order to get me through my shifts, I had to work, and we were a 2 income family. It was that first x-ray that changed everything. They found out that my transverse processes at my L4 L5 had been sheared off completely, I needed to have something stabilize my spine or I could have real damage done. I needed surgery. At that point I was sent to an Orthopedic surgeon. He took an MRI of my lower spine but did not do one of my upper spine because my upper back issues were mostly muscle spasms that would not let up. After surgery in June of 06, they could not explain why it was taking me so long to recover and why I was still having so much pain up and down my spine. It was November 06 when they finally did a complete spinal MRI Cervical, Thoracic and Lumbar to see what was really going on. Had they done that to begin with, they may have never done the surgery for fear that they would have damaged me further – because it was then that they discovered my syrinx. It stretched from T4-T8 at the time, and was thin at around 1-2mm. I was told I had Syringomyelia, and that my next stop was a Neurosurgeon. I was told that I would not be returning back to work – at all, that I would possibly be needing additional surgeries depending on how it progressed and that my list of Don’t now outnumbered my list of Do’s. My life would never get back to where it was before.
I was only 36 and I felt like I was 86! I slept a lot, the meds were hard on me, I was depressed and despondent at times and had to see a shrink to learn how to deal with the changes and get meds for depression. I tried all kinds of physical therapy but found they left me feeling worse than before and I could not function for days afterwards…life was horrible. How do you explain to your kids that mommy looks normal but isn’t? Every area of my life was affected by this. We were all working towards the light at the end of the tunnel after my surgery – now the light was dimming since we discovered there was no cure for this terrible condition. My marriage was on the brink, my kids were suffering with me not being able to take care of them the way I use to and they had to learn how to help mommy out now, and I could no longer work and contribute to the home financially. What were we going to do??? Never in a million years did I think this accident would have taken my life away without killing me – but it did. My families support has meant the world to me and without my family and friends, I do not think I would have made it this far. We have a long way to go, but there is a brighter light growing each day at the end of my tunnel now, I continue to research each and every day to see what is going on, I try to keep up on the home, but require help with that, I work towards finding the cure and what is working and spreading the information to those that need it as this diagnosis is not something that is going to change any time soon. I believe knowledge is power and with the knowledge I gain each day, I gain a little more power as well. To date, I have been diagnosed with Syringomyelia, dextroscoliosis, muscle spasms, bradycardia, celiac disease, thyroid cancer (prior to my accident), permanent nerve damage in my lower extremities and back, have 2 plates and 8 screw in my Lumbar area, depression, dizziness/vertigo, Lumbago, Pityriasis Rosea, Postlaminectomy Syndrome (lumbar), Ventral Hernia, Incisional Hernia, Disk disease/degeneration, diminished nerve response noted in lower extremities and upper extremities, and blurred vision. Just to name a few. I have gained weight due to the inactivity and the side effects of the medications and am always looking to find ways to get some of the weight off as it poses its own issues on all of my conditions. My goals are to maintain control over my condition as best as I can, enjoy my family and my good days and to make sure that those who are going through what I am with this diagnosis or any incurable condition have the resources they need to find the answers they are looking for…
***************************************************** ROBIN, ACM, SM
Syringomyelia (Congenital)
CANADA
At the age of five I was starting to walk to school with my neighbor when I collapsed having a grand mal seizure. I was rushed by ambulance from the general hospital to Toronto’s Sick Kids hospital and after exploratory surgery (no MRI’s then) was diagnosed with not one problem but two, Arnold Chiari Malformation 2 and Syringomyelia and had surgery to correct both. The doctors discovered that the cyst was the full length of my spine and it drained like a tap when they reached the end. I was also diagnosed with scoliosis and wore a body brace for a year at age fifteen to prevent further increase in the curve. Later during my teenage years I started showing signs of sleep apnea even though it didn’t have that name then. Sleep Lab testing showed I had severe central and obstructive sleep apnea, the only treatment would be a trach which I received just before my 21st birthday and I use a ventilator at night time. In the most recent years I’ve been diagnosed with Nystagmus, Restless Leg Syndrome, Facial Nerve Damage, Leg and Arm Spasms. As a result of a fall two years ago, I now have Spinal Cord Injury Nerve Damage. Feb.2009.