The information about these conditions are outdated but with current research more is known every year. Some professionals in the field of medicine claim that ACM causes no known symptoms. ACM and SM can be asymptomatic for many years and at some point become symptomatic. There are qualified specialists who are changing the way these conditions are treated.
I was diagnosed with Syringomyelia in July of 1990 and I had surgery soon after. The length of my syrinx is from C-1 to T-9. It wasn't until after the surgery had begun that they discovered the Arnold Chiari Malformation. The surgery was supposed to last four and a half hours and I was under for seven and a half hours. I had a shunt placed into the spinal canal. The purpose of this is to get the spinal fluid flowing again and to allow the syrinx to shrink, which is exactly what it is supposed to do.
My neurosurgeon also did the decompression surgery, where bone is removed from the back of the skull and it gives the existing structures more room. Recovery wasn't easy but I did heal, it just took a long time. Before surgery, I was told if I didn't have the procedure within 6 months that I would be paralyzed from the neck down. I didn't have a choice nor the time to waste by seeking other medical opinions. I guess that's why I am publishing my experience. I hope I can help someone who has been diagnosed with ACM and/or SM.
It is very important to find a doctor who is qualified in ACM and SM and one who knows and understands the pain both can create. Nothing is worse than having this surgery without the benefit of drugs to ease the pain. The web site WACMA (http://www.pressenter.com/~wacma) is a great source of information. There is a wonderful support group online. They offer so much more than answers, they offer hope, love, and a complete understanding of what you are going through.
Arnold Chiari Malformation (ACM) is a malformation at the base of the brain, in which the cerebellar tonsils grow down into the spinal cord and into the cervical vertebrae. Sometimes, this type of birth defect is obvious at birth. However, that is not always the case. It could take a lifetime to be properly diagnosed. The symptoms range from migraine type headaches to sensation depravation and a whole host of other possible symptoms. It is very important to note that no two individuals will have the same exact symptoms and that the severity will vary from one person to another. Surgery can help to lessen the symptoms but know that after surgery, usually there can be lasting impairments. There have been individuals who after having surgery, have no lasting impairments. Usually the conditions were caught very early. Most of the time individuals will see an improvement in relation to intracranial pressure and pain. Syringomyelia is a disorder that causes a cyst (syrinx) to develop within the spinal cord. As the pressure builds and expands, it can elongate over time causing damage to the nerves and to the center of the spinal cord. This results in chronic pain, muscle weakness, stiffness in the shoulders, neck and back regions. This is a progressive disease and there is no known "cure".
However, there are surgical procedures that can halt the progression of the syrinx and to make additional room (decompression) for the existing structure....the brain. It is possible to lose sensations, which simply means you couldn't feel being cut or burnt. For myself, the worst lasting impairment has been the burning sensations. I do have days where it is just a whisper, but I have had days where my entire body has felt on fire. During the female cycle, symptoms can be very bothersome. The burning sensations can be treated with medications like Amitriptylin. You don't have to live with the pain.
I do want to stress one important opinion. Never try to diagnose yourself, listen to your body and seek treatment. It can be a frustrating procedure finding a doctor who gives credence to your list of symptoms. One last thing.....there are many diseases that can mimic the symptoms of ACM/SM. If you have any of the symptoms, seek medical attention from qualified professionals.
I hope and pray that this information will make a difference to a child, one child and it will be worth the time and effort put in.
Keep positive and Be Pain-free
Connie
