Things to Consider Before Scoliosis Surgery for EDS

Ehlers-Danlos syndrome (EDS) refers to a group of genetic disorders that affect the connective tissue — the tissue that gives structure to joints, bones, and organs.

Patients with EDS have weak connective tissue. If you have EDS, you may have soft and fragile skin, and your blood vessels may be prone to damage. The combination of weak musculature and easily dislocated bones and joints means that scoliosis, the abnormal sideways curvature of the spine, is also present.

Scoliosis surgery may help, and be recommended by your doctor.

What types of surgery can treat scoliosis?

Doctors can use several different surgical procedures to treat scoliosis caused by EDS. One example is growing rods — expandable devices that are attached to the top and bottom of the spine using screws or hooks. The rods are lengthened by about 1 centimetre every six months or so. There are several different types of growing rods and procedures.

What does the surgery involve?

Scoliosis surgery usually requires general anesthesia, so you will be completely unconscious throughout the procedure. The surgery usually takes between four and six hours.

During the surgery, surgeons make incisions in the skin of your back and shift the muscles of your back to reveal the bones of your spine.

What happens after surgery?

After the surgery, you have to stay in the hospital for a few days to a week. A few weeks after surgery, you should be able to return to school or work that require light physical activity. Full recovery can take months, however.

If you are being treated with growing rods, each adjustment to the rods may require another surgery and recovery period.

What are the risks of scoliosis surgery?

Every surgery has risks, and these may be different for you than for someone else. The most common risks during surgery are bleeding, nerve damage, and infections.

What are some surgery concerns for EDS patients?

Generally, patients with EDS don’t heal as quickly as others, so recovery may be lengthy. Injuries (or surgical incisions) may, therefore, take much longer to heal if you have EDS.

The slow healing rate and weak blood vessels in some patients with EDS may mean that surgical procedures are more dangerous. If you are concerned or have had problems with bleeding previously, you should discuss it with your doctor.

The often very fragile skin of EDS patients may also make bandaging difficult. Your doctor should make your surgical team aware of any special precautions that they need to take with your bandages following surgery. Be careful not to reopen incisions while recovering.

Last updated: Aug. 26, 2020

***

Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.