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Symptoms Of Rare Diseases That Affect The Spine And Treatment Options

Symptoms of Rare Diseases that Affect the Spine and Treatment Options

February 28 is Rare Disease Day and we wanted to use this opportunity to bring awareness to some of the rare diseases that can impact a person’s spinal health. At Alliance Orthopedics, we treat patients with everything from common issues like back pain to those that have chronic or rare diseases. We think it’s important to shed light on these rare disorders to help patients recognize any symptoms and understand their treatment options. We’re going to take a closer look at the following three disorders that can impact your spinal health: Syringomyelia, Transverse myelitis and Arachnoiditis.


Syringomyelia is the development of a fluid-filled cyst (syrinx) within your spinal cord. Over time, the cyst may get larger, causing damage to your spinal cord, pain, weakness, stiffness and other symptoms. The majority of Syringomyelia cases are caused by a condition in which brain tissue protrudes into your spinal canal (Chiari malformation). Other causes include spinal cord tumors, spinal cord injuries and damage caused by inflammation around your spinal cord.

Early symptoms of Syringomyelia include muscle weakness, loss of reflexes and loss of sensitivity. Patients usually first experience these symptoms in the back of their neck, shoulders, arms and hands. Other symptoms can include:

  • Stiffness in your back, shoulders, arms and legs
  • Pain in your neck, arms and back
  • Bowel and bladder function problems
  • Muscle weakness and spasms in your legs
  • Spinal curvature; scoliosis

It’s important to see your doctor if you are experiencing any of the signs of Syringomyelia. If you’ve experienced a spinal cord injury, it’s also a good idea to monitor for any of these symptoms and know that the condition can develop months or even years after an injury.

Treatment for syringomyelia varies depending on the severity of a person’s symptoms and the impact it has on their daily life. In more serious cases, surgery may be recommended, but there are steps you can take to help you manage your symptoms day-to-day. It’s important for Syringomyelia patients to avoid activities that can put further strain on the spine, such as heavy lifting. It’s also beneficial to work with a physical therapist, especially if you are experiencing a decrease in your mobility due to your symptoms. A physical therapist can create a customized exercise program to keep you active while reducing symptoms like muscle pain, weakness or stiffness. The best approach for treating chronic pain due to Syringomyelia is to have a health care team that includes your neurosurgeon, neurologist, a rehabilitation specialist and a pain management physician work together to create an appropriate treatment plan for your specific situation.

Living with Syringomyelia and its symptoms can be challenging, but it can be managed. Make sure to discuss everything you are experiencing with your doctor and find sources of support to help you through it.

Transverse myelitis

Another rare disease we’d like to highlight is Transverse myelitis, which is a neurological disorder caused by inflammation of the spinal cord. Transverse myelitis usually impacts both sides of the body below the affected area of the spinal cord, but sometimes symptoms are only experienced on one side of the body. Typical symptoms include:

  • Pain—often the first symptom of this disorder, it can be felt in the back or appear as sharp, shooting pain that radiates down the legs, arms or around the chest/abdomen.
  • Abnormal sensations—this includes loss of the ability to experience pain or temperature sensitivity. Patients usually report sensations of numbness, tingling, coldness or burning.
  • Weakness in the arms of legs—people with this condition may notice that they are stumbling, dragging one foot, or that both legs feel heavier. Coordination or strength in the hands and arms could also be affected depending on the level of involvement within the spinal cord.
  • Bladder and bowel problems—this can include increased frequency or urge to urinate or have a bowel movement, incontinence, difficulty urinating or constipation.

Researchers do not know the exact causes of Transverse myelitis, but the following illnesses and agents are have associations with the disorder:

  • Infectious agents
  • Viral infections
  • Multiple sclerosis
  • Autoimmune diseases
  • Neuromyelitis optica (Devic’s disease)
  • Vaccinations
  • Cancers

When it comes to treatment for Transverse myelitis, several therapies may be used including intravenous steroids, plasma exchange therapy and pain medications. To help with long-term recovery, physical therapy can be used to improve strength and coordination. A physical therapist can also help the patient to learn how to use devices like a wheelchair, cane, etc. if needed. Occupational therapy can also help the patient learn new ways of performing their daily tasks, including caring for themselves, cooking, cleaning and so on.

Most people with Transverse myelitis do make at least a partial recovery although it can take time to make progress. After an attack, some people may experience minimal symptoms, others may continue to have difficulty walking and can experience slight symptoms, and in the more severe cases, people may permanently need assistance and/or need to use a wheelchair. Again, it’s important to speak to your doctor if you experience any symptoms and to receive ongoing support throughout your recovery.


Arachnoiditis is a pain disorder caused by inflammation of the arachnoid, one of the membranes that surrounds and protects the nerves of the spinal cord. The most common symptom is pain, but people may also experience:

  • Tingling, numbness or weakness in the legs
  • Strange sensations like the feeling of insects crawling on the skin or water trickling down the leg
  • Severe shooting pains
  • Muscle cramps, spasms and uncontrollable twitching
  • Bladder and bowel problems

The main causes of Arachnoiditis include:

  • Trauma or surgery-induced— Arachnoiditis can be a rare complication of spinal surgery (particularly after multiple or complex surgeries)
  • Chemically-induced—myelograms, a diagnostic test in which a dye is injected into the area surrounding the spinal cord and nerves has recently been considered a cause of Arachnoiditis.
  • Infection-induced—Arachnoiditis can be caused by certain infections that affect the spine including viral and fungal meningitis or tuberculosis.

Unfortunately, there is no cure for Arachnoiditis, but a number of treatments can be implemented to reduce pain. Options for pain relief may include spinal cord stimulation, pain medications and physical therapy treatments including hydrotherapy, massage, and hot/cold therapy.

Treatment Help for Rare Diseases

Although these conditions are rare, we encourage anyone who is experiencing abnormal symptoms like pain, weakness or sensations in the back, neck, arms or legs to see a doctor. Whether your pain is related to a common issue or a rare disease, Alliance Orthopedics is here to help with everything from physical therapy to pain management and occupational therapy.

We also encourage you to spread awareness about a rare disease that has impacted you or someone you know as there are many others out there.

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