Loose, Painful Joints
Seventy per cent of people with Marfan Syndrome have pain in and around their joints. Good posture, exercises, and the use of joint supports, as well as pain relief, such as paracetamol and non-steroidal anti-inflammatory drugs (NSAIDs), can prove helpful.
Treatment for curvature of the spine (scoliosis) will depend on how severely your spine is curved. If your spine is mildly curved, your treatment team will closely monitor it to see whether it gets worse.
In some cases, particularly in children who are still growing, a back brace may be recommended. The brace won't cure scoliosis, but it may stop it getting worse.
A back brace usually needs to be worn for 23 hours a day, and is only removed for baths, showers, swimming, and contact sports. Some children find wearing a back brace difficult at first, but it needs to be worn for the correct amount of time to be effective.
Surgery will usually be needed to straighten your spine if it curves by 40 degrees or more. Straightening the spine will help alleviate problems such as restricted breathing and back pain.
A number of different types of surgery can be used to treat scoliosis. The type recommended will depend on your age and individual circumstances.
In young children – generally those under the age of 10 – growing rods are inserted, which allow for continued growth while partially correcting the curvature of the spine.
In teenagers and young adults, an operation called spinal fusion may be carried out. This is where the spine is straightened using metal rods that are attached with screws, hooks, and wires. Bone grafts are used to fuse the spine in place.
Surgery for adults with scoliosis is usually only recommended if the spinal curvature is severe, getting significantly worse, or the nerves in the spine are being compressed.
The two main types of surgery used are decompression surgery, where the disc or bone pressing on a nerve is removed, and spinal fusion surgery.
These are major operations that can take a year or more to fully recover from. They also carry a risk of potentially serious complications, such as infection, blood clots, and, in rare cases, nerve damage.
Convex and Concave Chest
Marfan Syndrome can sometimes affect the natural position of the chest. Your chest is concave if it caves inwards, and convex if it protrudes outwards.
In rare cases, a person's chest can be severely concave and press against their lungs, affecting breathing. Surgery will usually be required to help ease the pressure on the lungs.
Surgery for a concave chest involves raising the breastbone (sternum) and ribs, and fixing them in place with a metal bar. Once the breastbone and ribs are fixed in position, the bar will be removed.
A convex chest shouldn't cause any health problems and won't usually require treatment. However, some people with a convex chest choose to have treatment for cosmetic reasons.
Physiotherapy uses physical methods such as exercise, massage, and manipulation to promote healing and wellbeing. It can help improve your range of movement and strengthen muscle support.
If skeletal problems are making it difficult for you to get around, physiotherapy may help make moving easier and more comfortable.