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Thread: syringomyelia

  1. #1
    Senior Member giambjj's Avatar
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    syringomyelia

    I need Dr. Wise's or some medical type person's
    help with this. Dr. Kao has seen my son's MRI and says that he has a 2 inch expanding cavity in his spinal cord that could eventually be life threating. He wants to operate on him in 10 days in Equador. He gave us the names of 3 persons that have had this surgery and are all doing well now. Any thoughts on this?.

  2. #2

    If you are not sure or ready...

    The idea of it being life threatining would not come in to play for at least 20-30 years(if ever) is my understanding. At some point a "shunt" may have to be put in (that is what I have been told). Anyway, If you are not sure of Dr. Kao and or his work, you shouldn't go! At least have a second opinion! Don't be forced into a hasty decision! I'm sure he means that he would be willing to do his /this procedure anytime, but if you think you want it now...come down as he is there and can do it sooner than later. Almost any specialist in this area could do this procedure in the U.S. (if it were needed). Here is what I have learned regarding this subject: It is my understanding that surgery is usually recommended for syringomyelia patients. The main goal of surgery is to provide more space for the cerebellum at the base of the skull and upper neck, without entering the brain or spinal cord. This results in flattening or disappearance of the primary cavity. If a tumor is causing syringomyelia, removal of the tumor is the treatment of choice and almost always eliminates the syrinx.

    Surgery will most likely result in stabilization or modest improvement in symptoms for most patients. Delay in treatment could result in irreversible spinal cord injury so I have been told. Recurrence of syringomyelia after surgery may make more operations necessary (these may not be completely successful).

    In some patients it may be necessary to drain the syrinx, which can be accomplished using a catheter, drainage tubes, and valves. This is also known as a shunt. Shunts are used in both the communicating and noncommunicating forms of the disorder. First, the surgeon must locate the syrinx. Then, the shunt is placed into it with the other end draining cerebrospinal fluid into a cavity, usually the abdomen. This type of shunt is called a ventriculoperitoneal shunt and is used in cases involving hydrocephalus. By draining syrinx fluid, a shunt can arrest the progression of symptoms and relieve pain, headache, and tightness. Without correction, symptoms generally continue.

    The decision to use a shunt requires a ton of discussion between the doctor and patient, because this procedure carries with it the risk of injury to the spinal cord, infection, blockage, or hemorrhage and may not necessarily work for all patients.

    In the case of trauma-related syringomyelia, the surgeon operates at the level of the initial injury. The cyst collapses at surgery but a tube or shunt is usually necessary to prevent re-expansion.

    Drugs have no value as a treatment for syringomyelia. Radiation is used rarely and is of little benefit except in the presence of a tumor. In these cases, it can stop the extension of a cavity and may help to get rid of the pain.

    If there are no symptoms, syringomyelia is usually not treated. Some doctors may recommend not treating the condition in patients in cases where there is no progression of symptoms. Whether treated or not, many patients will be told to avoid activities that involve straining.

    [This message was edited by Birde on August 16, 2001 at 02:03 PM.]

    [This message was edited by Birde on August 16, 2001 at 02:11 PM.]

  3. #3
    Syringomyelia is a common occurrence. It is estimated that as many as 15% of people develop an expanding syringomyelic cyst (syrinx) after spinal cord injury, sometimes occurring many years after injury. Many people develop cysts that do not expand and remain stable for years. The way you can tell they are expanding is from a history of neurological loss (sensory or motor), increasing pain, and comparison of the cyst size with previous magnetic resonance images. If there is a history of recent neurological loss and the presence of a cyst, surgery is indicated.

    The current theory is that the syrinx results from adhesions of the spinal cord to the dura, obstructing the flow of cerebrospinal fluid (CSF). The CSF consequently is forced through the central canal in the spinal cord. However, the central canal is frequently obstructed at the injury site. Even when the central canal is not obstructed, the increased flow will frequently cause a cyst (much in the same way a river will expand its size when the flow increases).

    In the past, the standard therapeutic approach was to place a catheter to shunt the fluid from the cyst. Although this approach will immediately collapse the cyst, the cyst almost invariably will reform within a year or two, requiring repeated surgeries in over 80% of the patients. About 7 years ago, Barth Green at the Miami Project proposed that simply removing the adhesions between the spinal cord and the dura, with care taken during the postoperative period to prevent re-adhesion, is sufficient to eliminate the cyst in most of the cases. He published a study about two years ago, indicating that he was successful in permanently eradicating the cysts in close to 80% of patients. This practice is now being adopted around the world.

    Carl Kao will untether and remove adhesions, as well as place an omentum graft to prevent further adhesions. He has had a lot of experience with this operation. He also places a peripheral nerve graft into the cavity. Many neurosurgeons in the United States also treat this condition. As mentioned, Miami has a great deal of experience. Likewise, UCLA, the Barrows Neurological Institute, the University of Florida at Gainesville are well-known centers with much experience with the treatment of syrinxes.

    The threat of the syrinx depends on the position of the cyst. If the cyst is in the cervical spinal cord and is expanding towards the brainstem, that is potentially life-threatening. In addition, a cyst in the cervical spinal cord would damage neurons that innervate the arms and hands, resulting in atrophy. A cyst that is expanding in the thoracic spinal cord may not be life-threatening but can make life quite miserable from increased pain. A cyst that is expanding in the lumbosacral spinal cord may damage neurons that innervate the legs and cause atrophy. Obviously, all these should be avoided and prevented as much as possible.

    An expanding cyst associated with progressive loss of neurological function is indeed something to be concerned about and should be corrected as soon as possible. While there are several other therapies that have been used to treat cysts, only surgery has been shown to be effective to date. The surgery with the best results have been removal of scar tissues between the spinal cord and dura and then taking measures to prevent scarring from recurring. Occasionally (about 15-20% of the cases), a surgeon may find relatively little scarring between the spinal cord and the dura... in that case the surgeon typically will go ahead to shunt the cyst (place a catheter in and drain the fluid either into the cerebrospinal fluid or into the pleural cavity). Some surgeons will go ahead and do both removal of adhesions and placing a shunt in, just in case. Many surgeons use artificial dura or cadaveric dura (from another person) to repair the dura so that it has room and does not press against the spinal cord after the dura is closed. Some surgeons go to some lengths to put patients on rotabeds that will prevent the spinal cord from lying on any side of the dura for a period of time after surgery, to prevent readhesion.

    Wise.

  4. #4
    Senior Member giambjj's Avatar
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    syringomyelia

    Dear Dr. Young and Birde:

    Thanks so much for your timely and expert help. We are also in contact with the neurosurgeons at UAB, Sheperds Center in Altanta and the Schriner's Hospital in Philly that all treated Jake. We will probably have surgery done, but when and where we are not sure. However, Dr. Kao thinks he should do it ASAP!

  5. #5
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    forget the shunt, what a waste of time

    jgiambro, I had the shunt procedure done fall of `98. Surgery lasted 8 hours. I was good for 1 1/2 years and now I am facing the knife again. I've been putting off surgery for a year now but time is running out. This is not something you want to do a second time. Go with the best doctor you can find.

    If your son is loosing strength he should have surgery as soon as he is ready. There is a chance that what is lost will not come back.

    Take care...

    Noel

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    ???

    Would it be possible to get insurance to pay for a portion of the surgery under the guise of treatment for a syrinx? If I were going to have my back opened up again, I would want the peripheral nerve graft done. He has done that surgery hundreds of times to dogs as well as humans.

    Eric Texley

  7. #7
    What are the symptoms of a cyst?? In the cervical, will there also be difficulty swallowing, with feeling of something lodged in throat, pin like pain/prick and cramping? Also, blood when vomiting?

  8. #8
    chick, a syringomyelic cyst may impose pressure on the spinal cord locally. This would not produce the symptoms that you describe, unless the cyst has extended into the brainstem. The centers that control swalling and feelings in the throat are situated in the lower brainstem and are mediated by the 11th and 12th cranial nerves. The 10th cranial nerve (the vagus) modulates the heart, stomach, and other internal organs. If you are having difficulty swalling or blood when vomiting, many other potential causes come higher on the differential diagnosis list.

    wise.

  9. #9
    Senior Member alan's Avatar
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    Even though this has been discussed elsewhere, since this is a new thread new folks are reading...

    Does a syrinx cause symptoms bilaterally (on both sides of the body) or unilaterally?

    Alan

    "Was it over when the Germans bombed Pearl Harbor?"

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