Back pain, leg pain, numbness, or trouble walking may not seem connected to transthyretin amyloid cardiomyopathy (ATTR-CM). But about 14 percent of people with ATTR-CM develop spinal stenosis, a painful condition that happens when nerves get pinched in the spine.

Although ATTR-CM is named for protein buildup in the heart, these proteins can also build up in other parts of the body.

Researchers believe spinal stenosis may be a warning sign of ATTR-CM. Screening people with spinal stenosis for ATTR-CM may lead to earlier diagnosis and treatment. This may help lower the risk of heart complications.

What Is Spinal Stenosis?

Spinal stenosis happens when the spaces between bones in your spine become smaller or narrower. This can put pressure on nerves and cause pain in different areas of the body.

The spine is made up of small bones called vertebrae. Each one has a space in the middle, like a donut hole. When they’re stacked on top of each other, they form a hollow tube called the spinal canal.

The spinal cord, a column of nerve tissue, runs from the brainstem down through the spinal canal. Smaller nerves pass between the vertebrae and connect the rest of your body to the spinal cord.

Normally, there’s enough space for all of these nerves in the spinal canal and between the vertebrae. But if these spaces narrow, some of the nerves can get pinched or irritated.

What Does Spinal Stenosis Feel Like?

Spinal stenosis typically causes pain, but people describe this pain in different ways. Some say it’s achy, burning, or tender. The pain may disappear and come back.

Some MyAmyloidosisTeam members have described their experiences with spinal stenosis:

“My spinal stenosis keeps me in pain when I stand or walk.”

“I have a lot of pain in my back and leg from severe spinal stenosis.”

“I can’t even carry a 20-pound package without inducing lower back and right leg pain thanks to spinal stenosis.”

“I’ve had spinal stenosis for years, but it’s much worse lately. Numbness and achy legs make walking any distance difficult.”

Other Symptoms of Spinal Stenosis

Spinal stenosis can also cause numbness, tingling, or weakness. The location of these symptoms depends on the nerve being pinched.

Spinal stenosis usually happens in the cervical spine (neck) and lumbar spine (lower back). It rarely affects the thoracic spine (middle back).

Cervical spinal stenosis may cause:

• Pain in the neck
• Numbness, tingling, or weakness in an arm, hand, leg, or foot
• Clumsiness or poor coordination in a hand or foot
• Balance problems
• Bladder or bowel problems

Lumbar spinal stenosis may cause:

• Pain in the lower back
• Pain that runs all the way down the leg from the buttocks
• A feeling of heaviness in the legs
• Leg cramps
• Numbness or tingling in a leg, foot, or buttock
• Worsening pain when standing for a long period of time, walking, or walking downhill
• Decreasing pain when walking uphill, sitting down, or leaning forward

Most cases of amyloid-related spinal stenosis happen in the lumbar area.

Diagnosing Spinal Stenosis

Many conditions can cause pain, so your healthcare provider will ask about your symptoms and perform a physical exam to rule out other possibilities. They may press on your spine or ask you to bend or twist.

Spinal stenosis can be seen on X-rays, MRI, or CT scans, so these images can help confirm the diagnosis.

Your healthcare provider may start with an X-ray to rule out bone conditions as the cause of your stenosis, then move on to an MRI or CT scan to look at soft tissues like ligaments.

How Can ATTR-CM Cause Spinal Stenosis?

ATTR-CM can cause spinal stenosis by thickening a ligament (connective tissue) in the spinal canal. This ligament is called the ligamentum flavum.

In ATTR, transthyretin proteins fold the wrong way and build up in the ligamentum flavum. This buildup creates less space for the spinal column nerves, which may end up compressed or pinched.

Do All Forms of ATTR Cause Spinal Stenosis?

Spinal stenosis is more common in people with wild-type ATTR versus hereditary ATTR (hATTR). Research also suggests that people with hATTR may develop spinal stenosis at a younger age compared to people with wild-type.

Can Spinal Stenosis Be an ATTR-CM Warning Sign?

Researchers believe spinal stenosis could be a warning sign that someone is at risk of ATTR-CM or another type of amyloidosis.

However, spinal stenosis can have other causes, like tumors, bone spurs, or a herniated disc. To accurately determine if spinal stenosis is related to ATTR-CM, healthcare providers need to look for amyloid deposits in the ligamentum flavum.

There’s no cure for ATTR-CM, but catching it early means you can slow its progression and possibly prevent heart failure.

Spinal stenosis could be an important warning sign that helps people and healthcare providers find and treat ATTR as early as possible.

How Many People With Spinal Stenosis Have ATTR-CM?

In a 2024 review, researchers found ATTR deposits in the ligamentum flavum in 26.5 percent of specimens from people with spinal stenosis. Most of these were wild-type amyloidosis.

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