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.
Half the people we interviewed had needed surgery, some only one or two operations but others, who had lived with the disease for many years, had several replacement joints.
Pat was diagnosed in 1982 at the age of 25 and talks about the many operations she has had since…
Some people were happy to have surgery to get rid of their pain, whereas others did not want any unless it was absolutely vital and tried muscle strengthening exercises to avoid it. Others knew that because of their age and the fact that prostheses wear out after a time, that they would need further operations so chose to wait as long as they could. The technical advances in prosthetics reassured people that revision operations could be successful.
Two women chose to have a second consultants opinion to set their minds at rest that surgery was the right course of action. Having confidence in the surgeons ability helped people face the operations. One woman felt it was important that the surgeon was not only specialised on a particular joint but also had experience with RA as well as osteoarthritis patients.
Some people wanted to know as little as possible about the operation, and one woman went into it as a positive experience.
Explains feelings towards her joint operation, not wanting to know details and seeing it as a…
However, others emphasised the need to ask the surgeons questions about what they were going to do. One woman particularly wanted to know how it would feel in the weeks after surgery. Another said hospitals made her feel vulnerable and the formal atmosphere made it hard to ask the consultant all the questions she would like. Some participants had talked to other patients and heard worrying stories of similar operations that went wrong.
Feels surgeons could explain more and patients should ask questions about the planned operation.
Several people had surgery privately mainly because of the longer waits in the NHS or because they had health insurance. One woman, who had 10 operations in all, described how for aftercare for one operation she was moved to an NHS ward with more experienced staff.
Was very glad to have moved from a private room to an NHS ward after her hip operation.
Two women were shocked by the number of operations they required when they saw the surgeon. People were nervous going into hospital and scared to death, petrified, frightened of the operation and worried that they would not wake up from the anaesthetic. Several people were afraid of being put to sleep and had a spinal block anaesthetic and epidural rather than general anaesthesia. Some people confided their fears to friends rather than family, so as not to worry them.
Was shocked at how many operations the surgeon thought she needed and wished the wait were shorter.
Had her ankle operation under spinal block because she doesn’t like general anaesthetics nor too…
Had joint replacements under spinal block anaesthetic rather than general.
Pain relief after the operation was given by injections, epidural and intravenously via a drip. Three women who had epidurals all had problems with delayed or only partial pain relief.
After an operation, having no on-call nursing support at home can be worrying. People felt less safe being on there own and worried about falling and the practicalities of managing day to day. One woman was very uncomfortable getting home after hip surgery she sat with others in an ambulance that went on a round trip to get home rather than having a stretcher style ambulance direct.
Scars were not mentioned much but one woman had been horrified at the scar at first but later was not too bothered. Another had to have some scar tissue removed several months after surgery and used to hide her scars but now felt it was part of what she had gone through so why should she. Using silicone patches helped one woman make her scars paler. Another showed family and friends the scar to prove she had had major surgery and therefore felt entitled to moan at times.
Didn’t like her scars and ate lots of Vitamin C rich fruit to heal them.
Has used silicone gel on her scars to reduce the redness and swelling.
Since some Disease Modifying Anti-Rheumatic Drugs can reduce peoples immunity the risk of infection at surgery is higher so your rheumatologist may decide to pause your DMARD treatment briefly either side of surgery; for minor operations this may not be necessary and indeed it can be worse if your RA flares around the time of surgery. Four patients on anti-TNF drugs or rituximab drug have had surgery several years before being put on the new biologic treatments. Long-term steroid use reduces bone density, as does lack of weight bearing exercise, which can increase the risk of fracture. One woman found the top of the plaster cast rubbed off the skin, causing an ulcer. Anaemia may make blood transfusions more likely during and after surgery and one woman bled into her thigh muscle (a haematoma) after a bone graft.