Does anyone know of alternative treatment for syringomyelia?

Treatment

The first step after diagnosis is finding a neurosurgeon who is experienced in the treatment of syringomyelia. Surgery is the only viable treatment for syringomyelia, and a neurosurgeon is the only specialist qualified to provide a fully informed recommendation. Not all patients will advance to the stage where surgery is needed. Evaluation of the condition is often difficult because syringomyelia can remain stationary for long periods of time, and in some cases progress rapidly.

Surgery is not always recommended for syringomyelia patients. Surgery of the spinal cord has certain, characteristic risks associated with it and the benefits of a surgical procedure on the spine have to be weighed up against the possible complications associated with any procedure. Surgical treatment, if at all carried out, is aimed at correcting the condition that allowed the syrinx to form, if possible. In cases involving a Chiari Malformation, the main goal of surgery is to provide more space for the cerebellum at the base of the skull and upper cervical spine without entering the brain or spinal cord. This often results in flattening or disappearance of the primary syrinx or cavity as the normal flow of cerebrospinal fluid is restored. If a tumor is causing syringomyelia, removal of the tumor is the treatment of choice and almost always eliminates the syrinx.

Surgery results in stabilization or modest improvement in symptoms for most patients. Delay in treatment may result in irreversible spinal cord injury. Recurrence of syringomyelia after surgery may make additional operations necessary; these may not be completely successful over the long term.

In some patients it may also be necessary to drain the syrinx, which can be accomplished using a catheter, drainage tubes, and valves. This system 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 extensive discussion between doctor and patient, as this procedure carries with it greater risk of injury to the spinal cord, infection, blockage, or hemorrhage and may not necessarily work for all patients. Draining the syrinx more quickly does not produce better outcomes, but a shunt may be required if the fluid in the syrinx is otherwise unable to drain.

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 curative 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 halt the extension of a cavity and may help to alleviate pain.

In the absence of symptoms, syringomyelia is usually not treated. In addition, a physician may recommend not treating the condition in patients of advanced age or in cases where there is no progression of symptoms. Whether treated or not, many patients will be told to avoid activities that involve straining.

Since the natural history of syringomyelia is poorly understood, a conservative approach may be recommended. 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.

Research

The precise causes of syringomyelia are still unknown. Scientists at the National Institute of Neurological Disorders and Stroke in Bethesda, Maryland, and at grantee institutions across the country continue to explore the mechanisms that lead to the formation of syrinxes in the spinal cord. For instance, Institute investigators have found that as the heart beats, the syrinx fluid is abruptly forced downward. They have also demonstrated the presence of a block to the free flow of cerebrospinal fluid that normally occurs in and out of the head during each heartbeat.

Surgical techniques are also being refined by the neurosurgical research community. In one treatment approach currently being evaluated, neurosurgeons perform a decompressive procedure where the dura mater, a tough membrane covering the cerebellum and spinal cord, is enlarged with a graft. Like altering a suit of clothing, this procedure expands the area around the cerebellum and spinal cord, thus improving the flow of cerebrospinal fluid and eliminating the syrinx.

It is also important to understand the role of birth defects in the development of hindbrain malformations that can lead to syringomyelia. Learning when these defects occur during the development of the fetus can help us understand this and similar disorders, and may lead to preventive treatment that can stop the formation of many birth abnormalities. Dietary supplements of folic acid during pregnancy have already been found to reduce the number of cases of certain birth defects.

Diagnostic technology is another area for continued research. Already, MRI has enabled scientists to see conditions in the spine, including syringomyelia, even before symptoms appear. A new technology, known as dynamic MRI, allows investigators to view spinal fluid pulsating within the syrinx. CT scans allow physicians to see abnormalities in the brain, and other diagnostic tests have also improved greatly with the availability of new, non-toxic, contrast dyes. Patients can expect even better techniques to become available in the future from the research efforts of scientists today.

Diagnosis

Physicians now use magnetic resonance imaging (MRI) to diagnose syringomyelia. The MR imager takes pictures of body structures, such as the brain and spinal cord, in vivid detail. This test will show the syrinx in the spine or any other conditions, such as the presence of a tumor. MRI is safe, painless, and informative and has greatly improved the diagnosis of syringomyelia.

The physician may order additional tests to help confirm the diagnosis. One of these is called electromyography (EMG), which measures muscle weakness. The doctor may also wish to test cerebrospinal fluid pressure levels and to analyze the cerebrospinal fluid by performing a lumbar puncture. In addition, computed axial tomography (CT) scans of a patient's head may reveal the presence of tumors and other abnormalities such as hydrocephalus.

Like MRI and CT scans, another test, called a myelogram, takes x-ray-like pictures and requires a contrast medium or dye to do so. Since the introduction of MRI this test is rarely necessary to diagnose syringomyelia.

The possible causes are trauma, tumors and congenital defects. It is most usually observed in the part of the spinal cord corresponding to the neck area. Symptoms are due to spinal cord damage and are: pain, decreased sensation of touch, weakness and loss of muscle tissue. The diagnosis is confirmed with a spinal CT, myelogram or MRI of the spinal cord. The cavity may be reduced by surgical decompression



U CAN CONTACT THE BELOW LIST FOR FURTHER DETAILS:
Organizations

American Syringomyelia Alliance Project (ASAP)
P.O. Box 1586
Longview, TX 75606-1586
info@asap.org
http://www.asap.org
Tel: 903-236-7079 800-ASAP-282 (272-7282)
Fax: 903-757-7456

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

National Spinal Cord Injury Association (NSCIA)
6701 Democracy Blvd.
#300-9
Bethesda, MD 20817
info@spinalcord.org
http://www.spinalcord.org
Tel: 301-214-4006 800-962-9629
Fax: 301-881-9817

Brain Resources and Information Network (BRAIN)
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov
The Ann Conroy Trust (ACT)
33 Southam Road
Dunchurch, Rugby
Warwickshire
England
CV22 6NL
Tel: (+44)1788 537676
Fax: (+44)1788 569996
http://www.theannconroytrust.org.uk

Irish ANTS (Syringomyelia Self Help Group)
Millmore Hse,
Aughnamullen, Castleblayney,
Co. Monaghan,
Ireland
Tel: (+353)42 9742102
Fax: (+353)42 9742102
http://homepage.eircom.net/~syringoselfh...

There is none, regardless of the cause of the syrinx.

This retrospective study of 12 patients with syringomyelia related to spinal cord trauma with paraplegia or tetraplegia and secondary progressive neurologic deficits was conducted to evaluate various surgical treatments. Judging by the results of postoperative neuroradiologic examinations, 75% had incomplete reduction of the spinal fracture at the time of initial surgery. The secondary neurologic deterioration occurred within a delay of 146 +/- 16 months and included ascending sensory deficits in 92%, deafferentation pain in 83%, and increased motor weakness in 33%. There was a positive correlation between the severity of symptoms, incomplete reduction of spinal fracture, and the degree of arachnoid scarring in preoperative neuroradiologic examinations. Syringoperitoneal shunting was performed in 83% of patients, and laminectomy with arachnoid lysis and dural grafting were performed in 17%. Pain was improved in 75%, sensory deficits in 25%, and motor weakness in 8%. During the follow-up period of 44 +/- 25 months, 30% of patients with syringoperitoneal shunting required repeated operation for obstruction or infection, whereas the syringomyelia remained collapsed in the two patients with laminectomy with arachnoid lysis and dural grafting, but this did not require additional surgery. In conclusion, laminectomy with arachnoid lysis and dural grafting seems to be a promising alternative treatment for patients with secondary neurologic deterioration after traumatic paraplegia or tetraplegia. Syringoperitoneal shunting may be reserved for patients without severe arachnoid scarring.