The Most Important Questions About Syringomyelia

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GENERAL

Syringomyelia is a general term referring to a disorder in which a cyst or a cavity is formed within the spinal cord. This cyst, called a syrinx, may expand and elongate over time, damaging the spinal cord and ultimately leading to paralysis if appropriate measures are not taken. The temporary damage may lead to pain, weakness and stiffness in the back, shoulders and extremities.

Syringomyelia may also cause loss of the ability to sense extreme levels of hot and cold, particularly in the hands. Every patient manifests a different combination of symptoms. These symptoms usually vary according to the extent and, often more importantly, to the location of the syrinx within the spinal cord.

The prevalence of syringomyelia is estimated to be 8,4 cases per 100.000 people [1], with symptoms usually starting in early adulthood. Symptoms tend to develop slowly although there may be a sudden onset on the occasion of cough and stretching or due to myelopathy.

How is Syringomyelia detected?

Syrinxes are diagnosed by magnetic resonance imaging (MRI), but physicians can often detect the presence of a syrinx by testing a patient’s loss of pin-prick and temperature sensation, both early signs of syringomyelia. Also, strength tests and nerve conduction tests are useful for monitoring syrinx status and assessing the effectiveness of treatments. Nerve conduction tests can also help detect other causes of neurologic decline that may mask or occur simultaneously with a syrinx, such as carpal tunnel syndrome, other peripheral nerve entrapment, or spinal cord impingement.

How is syringomyelia treated?

Syringomyelia itself is untreatable. There is no cure and it is often unknown as to how the disease occurred. Once the disease has been diagnosed by MRI, it is then determined how advanced the disease is by the size of the syrinx (fluid-filled sac within the spinal cord), and if there is any spinal cord swelling, as well as, the symptoms that the patient is experiencing. Any treatment (outside of surgery) is for the symptoms, not the disease.

If there is no danger to the patient and the symptoms are not severe, such as loss of motor function, a loss of feeling, extreme pain, etc … then it is likely that the patient will be referred to a pain management doctor. However, if the spinal cord has swelling and the syrinx is swollen, and/or if the symptoms are severe enough then a neurosurgeon may suggest that a spinal decompression be performed with the possibility of inserting a subarachnoid shunt for drainage. I would also like to add that decompression surgery is not a means of treating chronic pain, it’s an option to remaining functional and alive.

How does syringomyelia affect the body?

Syringomyelia really doesn’t have any boundaries when it comes to its effects on the body. The spinal cord is home to the nervous system, therefore, it is likely that any damage, or disease, to the spinal cord may cause nerve damage. To take that one step further, whatever damage is done to a specific area of the spinal cord, may reach out to the area/organs/function of the body that is controlled by that area of the spinal cord.

Furthermore, each person is treated a little differently by their disease. For instance, syringomyelia has caused me to lose motor function, has paralyzed me, caused widespread nerve pain, kyphosis (scoliosis of the neck), bowel and bladder issues, and a great deal of sensation loss. While others have heart disease, severe respiratory disease, digestive issues, etc … there are no limits because the spinal cord is involved in every voluntary and involuntary movement and function of the body.

If you have never read The Spoon Theory, you should. It is a beautiful, and clear, explanation about what it takes to get through the day when living with any chronic illness.

Can syringomyelia go away?

Short answer, no, there is no cure for syringomyelia. There are some people who will have the decompression surgery and their syrinx will completely drain. While others, like myself, have had three spinal decompressions with three subarachnoid shunts (permanently) inside my spinal cord and I still have a syrinx. Either way, the disease is still there and always will be. The syrinx can, and usually will, change size and return throughout your life.

Can you die from syringomyelia?

This is one of the first things that I asked myself when I was diagnosed. The answer is a little bit no and a little bit yes. Technically, it is usually not syringomyelia that is given as the cause of death, it will be the diseases caused by having syringomyelia. When I was diagnosed, I was given one year to live and told that I was not a candidate for surgery because my spine was so large and almost my entire spinal cord was involved. It’s obvious that I beat those odds. However, at that time, I had not been diagnosed with any of my other diseases, so it is possible that syringomyelia could have been my cause of death.

Syringomyelia is not considered fatal, however, you have to take good care of yourself, manage the pain, and have regular MRI’s. It is quite reasonable to believe that you can live a long, full life with this disease.

Additional Information

For more information about syringomyelia, go to Syringomyelia The complete guide Causes Symptoms and new diagnosis

MEDICAL INFORMATION SOURCES

[1]. PAIN PRACTICE JOURNAL

1 COMMENT

  1. I was dx in 2009 and a great nurusurgueon made me go through PT, PAIN Mangment and Chtiopactor treatment. It was not successful. I had been a Nurse from 1979 and had never heard of this. I was decompressed but had sevaral complications.
    After a year and returning back with only small reasidile efects I thought I had overcame this diese.Jan 2018 I hadcjust returned back to work post RIGHT TKA. My primary and Pilumologist thought I had a preseent cough and resp problems causing SOB. By April 2018 I was sent to a E.N.T. Top at Shands Hosp. I had paralyzed vocal cords.
    No one could figure out why when that feeling as the Dr prior to my Chari had said its all in my head. I requestee to see there top nurosurgon and aftr MRI mine had went progrwssivly to my spinal cord. I mainly want to applaud you all as this type of information will help newer chari and spygy
    Ppl that your not alone.
    I dont know how fast pr what system it will hit next but Im facing and enjotying life aling with a nice new throat opening. Could be +worse

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