Rheumatoid Arthritis

Some of the people we interviewed had upper limb and neck surgery and talk about their experiences here. 

An important thing to bear in mind is that nowadays medication taken soon after diagnosis can slow the progression of joint damage and lessen the need for surgery. Disease Modifying Anti-Rheumatic Drugs (DMARDs) and biological treatments (anti-TNF therapy, rituximab and others) have made a big improvement to the way rheumatoid arthritis can be treated. These drugs tend to stop the gradual destruction of bones and joints and reduce the need for surgery. For people who have had RA for a long time (before these drugs were available) surgery may still be needed as the damage to bones and joints has already been done.

Restricted movement and pain in the arm, particularly shoulders and elbows, significantly limit people's everyday activities. People had difficulties with reaching into cupboards, dressing, toileting, cleaning teeth, brushing/washing hair, bringing food to the mouth and gripping eg drinking cups. However, several people had adapted to cope with these restrictions.

Three people had had shoulder replacements that removed most of the pain and increased movement, which had often been very limited with arms stuck close to the body. Replacement of the joints rarely led to being able to lift the arm above the head but people were very pleased with their improved mobility. A 49 year old woman had both shoulders replaced after a 15 month wait.

Two people had some bone removed from their elbows, two had complete replacements but four more had been advised this operation might be necessary. One woman who had a replacement 12 years ago was disappointed with the movement she gained although it had for many years reduced her pain, but this had increased again recently and she was awaiting a revision operation. Another woman described her bilateral elbow replacements. The operation was painful but she was very happy with the results.

Wrist operations included bone removal, carpal tunnel, wrist fusion and partial replacement. They removed the pain and improved function, particularly strength and grip. One woman had carpal tunnel release on both hands after tingling in her fingers. Another woman's wrist replacements on both sides were 'terrifically successful'. A 38 year old woman explained why she had decided against having her wrist fused.

Hand surgery was often done to transplant or repair damaged tendons in fingers and thumbs, fuse joints, straighten fingers and occasionally replace finger joints. Splints were often used afterwards to help keep the fingers and thumbs in good positions. People found the time it took to recover from such operations, often 2-3 months, was quite restricting. Positive results included reduced pain, increased grip and strength and being able to write again. These operations were often carried out as day surgery and one woman had her thumb fused with a local anaesthetic. Some people hesitated to have hand surgery, fearing they might lose what movement they had. One woman's synovectomy operation was painful and didn't help.

Neck Surgery

Two women, with RA for over 20 years, had very painful necks caused by the bones deteriorating and crumbling so that they needed to be fused and secured with metal plates attached to their skull. This relatively rare operation was worrying for both in that it carries a risk of paralysis if the spinal cord or nerves are damaged. The operation left little or no rotation or up/down movement but they adapted by moving their body to see things. One of the women required a second operation to have a further bone graft and plate attached to the front of her neck.