Chapter eight
SURGERY
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Chapter eightSURGERY |
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To operate or not to operate?
Total hip replacement (THR) in younger patients
Going ahead with a hip op
Knee replacement
Revision operations
Ankle operations
The girdlestone (excision arthroplasty)
Going private
Considering going abroad for treatment
Other information sources about surgery
Hip replacements are the best-known form of surgery for people with arthritis. Successful total hip replacement (THR) has been one of the most exciting developments of recent years. In November 1962, at Wrightington Hospital in Lancashire, Professor John Charnley performed the first successful hip replacement operations. Improvements have continued since then. In the United Kingdom over 50,000 THRs were carried out in 2003, and over 90% function successfully.
Other joints can also be replaced (the general technical term is 'replacement arthroplasty'). The second most frequently replaced joint is the knee. Work's also been done on replacements for shoulders, elbows, finger joints, and ankles.
Other operations may be performed too. Someone with RA might have an operation to repair damaged tendons, release a trapped nerve, or a 'synovectomy' (removal of an inflamed synovial membrane, aimed at reducing pain and swelling), or an 'arthrodesis' (fixation of a joint, eg ankle, thumb, wrist, elbow, aimed at removing pain and correcting instability).
ARC's website and magazine Arthritis Today have items on different surgical procedures and are excellent ways of keeping up-to-date with developments.
Stories of the miraculous relief an operation can bring make it all too easy to get carried away and think surgery must be the answer to all your problems. But surgery should be a last resort, after considering the pros and cons very carefully, and only after everything else has been tried. Don't ever try to over-persuade a surgeon to operate against his better judgement. Be wary, for instance, of pressing for an operation to make deformed hands look more attractive, if there's a danger of losing function. One YPA (younger person with arthritis), who regretted the particular operation she had, wrote in In Contact:
"My suggestion to anyone considering surgery is remember, it's your body — make sure it's absolutely necessary, ask questions like: 'What if any are the drawbacks?', 'are there any risks?', 'is there an alternative?' then if you are satisfied with the answers you can go ahead in the knowledge that you are well prepared for any eventuality."
Listen to orthopaedic surgeon Denys Wainwright:
"The decision as to whether an operation is advisable in treating arthritic joints is never easy and it is essential for you to be fully informed about the chances of success and the possible risks of any procedure. You, in turn, must carefully assess the degree of pain and disability from which you are suffering."
"An intermittent ache and the necessity to use a stick when walking any distance are not disabilities requiring surgery and operations are only considered when suffering intractable pain unrelieved by analgesics and physical treatment, particularly if sleep is constantly interrupted. Replacement arthroplasty of the hip is particularly successful in restoring almost normal function to a stiff deformed joint but it is a major operation with a small but significant rate of complications. You should bear this possibility, however remote, in mind. Clotting of the big veins of the leg, infection of the wound and loosening of the components of the joint all occur in a small percentage of cases but if the alternative is a life of serious invalidism these are risks worth taking… "
"Discuss the matter with relatives and the family doctor and then consult a surgeon familiar with these operations, but the ultimate decision rests with you. Never be too influenced by other people who have had replacement operations because no two cases are identical and some joints are more difficult to restore than others." (Arthritis and Rheumatism, Elliott Right Way Books, 1985)
There's often a gap between our expectations of surgery and the reality, and in a perceptive article in In Contact another YPA pinpointed some of the problems:
"There is the problem of role perception. People going to see a surgeon often think of it as 'going to see the doctor'. Surgeons, however, it seems to me, have a much narrower view of their role, and confine it to whether or not to operate. Thus, if you ask a surgeon what he thinks should be done for you, he will come up with a surgical answer. This does not necessarily mean that you need (ie must have) an operation, but rather that, if what you are complaining of is a big enough nuisance, he will obligingly try to do something to help you. I think older people, in particular, find this confusing. They expect to have 'the doctor' tell them what they need. Many patients, it seems to me (after seventeen years of out-patients' clinics) fail to see that the surgeon is offering his considered professional advice which they are free to accept, discuss or (politely!) reject."
"Second, there is a semantic problem. I don't know how people feel about having a 'new' hip, but I don't feel I have a 'new' knee. I'm glad I had the old one replaced, it restored my mobility and independence and got me out of a wheelchair — but, I repeat, what I have is not a new knee. This may sound petty, but … the general public are of the impression that you go into hospital, get a new joint or two and come out of hospital fully mobile and without pain."
"In consequence, if you come out of hospital (particularly if you come out to live on your own) with a large wound, a very awkward joint, a lot of pain, and face two or three months of coping for yourself with great difficulty, spending sleepless nights when you have to get up and around on sticks to ease the 'discomfort' — it's very hard to be told on all sides that it must be wonderful now you've got your new joint and there's no pain any more, and asked when you will be running down the High Street. At this stage, the reality of your op may seem to you to fall far short of your expectations."
She included several tips about going to see the surgeon. There won't be a lot of time to discuss all the pros and cons, so do your homework, and go prepared:
"Try to think of what he might suggest doing, and write down questions as they occur. Surgeons are so used to doing operations that they often forget to mention little practical details like how long you will be in plaster; or the likely length of your hospital stay, or what you will be able to do on discharge and so on. Take your list of questions with you, wait till he has finished and then say politely that you have things to ask…"
Always remember you don't have to agree there and then. You can, if you want, go away and discuss things in more detail with your GP and rheumatologist.
In doing your 'homework', and weighing up the pros and cons, you may find helpful one or more of ARC's booklets: titles include Hand and wrist surgery for arthritis, A new hip joint, A new knee joint, Shoulder and elbow joint replacement. All downloadable from ARC's website, or order online, or send an SAE for a copy by post. Look too at Arthritis Care's A guide to surgery.
I hope you haven't been completely put off. Many YPAs, including me, have benefited immeasurably from THR surgery. I had both done in 1976, with a three month gap in between. The effect was miraculous, banishing the utterly intolerable pain and restoring mobility to hip joints which had almost completely locked in their sockets, so great was the damage. Afterwards, life was worth living again.
Another YPA enthused, too: "my new hip joints gave me a new lease of life for without them I would have been bed-ridden at the age of 28." Janet Mason had a special worry: "the first thing I asked when they suggested doing my hips was will I still be able to have babies? I was reassured." For Anne R: "there is no doubt the replacements are super and can revolutionise the condition, and give you heart and energy to go on fighting."
But do, please, think twice (and more than twice) before agitating for an operation. There are, alas, still problems and drawbacks, especially for younger patients, so try everything else first. 'Everything else' includes all methods of pain control (drug and non-drug methods), reorganising your life to lessen strain on the joint, reducing weight if you're overweight, keeping your muscles in trim, getting a firmer bed if necessary, and swallowing your pride sufficiently to use one (or two) sticks.
Do listen to a surgeon who advises you to try these less dramatic remedies first, hard though it may seem. He's only being cruel to be kind, and really does have your best interests at heart.
How does a total hip replacement work? What can go wrong? The hip's a ball-and-socket joint. The surgeon replaces the 'ball' (the femoral head) with a metal (usually stainless steel) implant (or 'prosthesis') which looks vaguely like a sort of upside-down very oddly shaped golf club with a round head. Attached to the 'ball' is a long 'stem' which the surgeon inserts and fixes in the leg bone (femur). The socket (acetabulum) is replaced with a special sort of plastic (polyethylene). Both the steel prosthesis and plastic acetabulum are fixed in place using either a special sort of acrylic cement or a cementless technique. A third option is the 'hybrid' technique, where only one of the two components is cemented in place. Sometimes a ceramic implant is used.
As an alternative to total hip replacement, hip resurfacing may be suggested, which keeps more of the original bone. In 2004 TV chef Ainsley Harriott (in his 40s) had surgery to resurface his osteoarthritic hip.
The ARC booklet A new hip joint explains clearly, with helpful illustrations, some of the variations in materials and techniques used in hip replacement surgery. The cementless technique is often used in younger more active patients: the surfaces of the implants are roughened or specially treated to encourage bone to grow on to them and hopefully create a long-lasting bond.
Wonderful though the THR op is, there are possible complications — the two main ones being infection and loosening of the components. The problem of deep infection has been reduced to around 1 in 200 cases, but does mean the artificial hip usually has to be removed while the infection is treated. It may be possible to try again later.
Loosening of the components is a major problem, and most common after 10 to 15 years. The frequency with which components loosen depends upon the prosthesis and implantation technique used, the activity of the patient, and other factors, not all at present understood. Loosening can cause pain and instability of the hip, and possible fracture around the prosthesis. Loosening is a major reason why surgeons still hesitate to operate in younger patients, and why work on improving materials and techniques for implants in younger patients is so important.
Sorry if I've upset you. I don't want to put you off completely, nor alarm anyone who's already had it done. The hip op is wonderful, but I do want you to know the facts. My medical team were very careful to make me aware of the drawbacks before I had my ops. For me they really were a last resort, and I went in 'with my eyes open' (figuratively speaking!). Though they were likely to be successful, there could still be problems, but I knew none of those problems could put me in a worse position than I was. Anything had to be better than that pre-op hell.
Life was certainly well worth living again afterwards, but in time loosening and pain did occur. I've had to have a 'revision op' on one hip already, and the other has partly loosened. I know that if a 'revision' is not successful I'll end up with a 'girdlestone', where there's no 'ball-and-socket' hip joint at all. Meanwhile I have to be extremely careful with The Hips, though the advantages for me still outweigh the disadvantages.
If, after full consideration, you and your surgeon do decide to go ahead, I wish you the very best of luck, and as much relief as I and other YPAs have experienced. Your surgeon will be your main source of information about the procedure, of course. And two good guides to what to expect along the way are: ARC's booklet A new hip joint and Arthritis Care's A guide to surgery.
Recovery times differ from person to person, and you'll need to be extra careful for several weeks or months after the op, while everything settles into place. You might feel so good that you want to rush around madly at once. I know the feeling! But don't, please, if you want the op to be a success. Do take things carefully. Someone with a cemented prosthesis will be allowed to weight-bear much sooner after the op than someone with a cementless prosthesis. Listen to your surgeon, physio, occupational therapist and the nurses and don't rush off for the nearest mountain or enter yourself for Wimbledon in your heady exhilaration!
Particularly important in guiding you on dos and don'ts after the operation are the physio and occupational therapist (OT). If possible try to get OT help before the operation in planning how best to arrange things at home and making sure you have any equipment required. If necessary you are allowed to refer yourself to an OT through your local social services department. You can ask for an assessment of your needs under the NHS and Community Care Act 1990.
Here are some of the dos and don'ts for after the operation. Don't cross your legs. Do sleep on your back. Get your chair and bed at home raised to avoid straining the new hip, and ask the OT about raising the height of the loo seat. See about raising any frequently-used electric sockets. Avoid strain too by using a longreach gadget, a stocking puller-on, etc. The OT will advise on all these. Ask the physio or OT to measure the length of your legs after the op. If one's slightly shorter than the other ask if an extra shoe heel-piece or two on that side might help avoid strain.
After a few weeks you'll be able to drive a car again, though get advice from physio and OT on getting in and out safely. After a few weeks too you'll be able to resume your sex life. Ask your healthcare team for advice on long-term aftercare of your new pride-and-joy. In general:
Get ARC's excellent booklet A new knee joint and Arthritis Care's A guide to surgery.
Several young people with arthritis (YPAs) have had total knee replacements, with varying degrees of success. My friend Ken, in Ireland, had his done in 1976, the same year as my first hip ops. His knee has its off-days, it's not as agile as a 'normal' knee joint and he limps slightly, but it's still going strong and letting him lead a full life, working, socialising, and regularly cycling through France on his annual holiday.
Similar warnings apply as for the hip op — think — twice and twice again, several times over. Try everything else first and think of the knee op as only a last resort. Be sure you're not going to end up saying 'if only I hadn't had it done' if there are drawbacks afterwards. Use the helpful advice and information in both the ARC and Arthritis Care booklets to help you work out what to discuss with your rheumatologist and surgeon, and to help you decide what to do.
Professor Hardinge includes knee replacements in his book on hip operations:
"If the function in a normal knee is called 100 per cent, the best knee replacements are at present offering about 80 to 85 per cent of normal function — this normal function including pain relief, stability, and movement. This is to be contrasted to the total hip replacement, which being a simpler universal ball and socket joint is much simpler mechanically and probably gives 90 to 95 per cent of 'normal' function…"
"Doctors hesitate to offer total knee replacement to younger patients because they don't know how stable such replacements are over a lifetime, and how the cement-bone bond will behave over such a period. The percentages quoted above are a rough guide to function, but to gain the worthwhile overall benefit of total joint replacement, a patient with a painful knee has to be marginally worse off before the operation than a patient with a painful hip." (In Hip Replacement, The Facts, OUP 1983)
Many replacements last at least 10-15 years, and some can last much longer. An article in the autumn 2006 NRAS newsletter (National Rheumatoid Arthritis Society) described an 84 year old man, still active and still a keen gardener, whose right hip had been replaced 34 years earlier and his left replaced 22 years earlier!
Sadly, we're not all so fortunate. Arthritis News, January 2006, listed what to look out for, some of the warning signs that all might not be well with a replacement joint: a new or different kind of pain; feeling unsteady in the joint; limping; heat or swelling around the joint; having a temperature; pus being discharged through the skin; a lack of gradual improvement after surgery. And advised:
"If you think there might be something wrong with your joint replacement, get it seen to as soon as possible, but remember that most problems associated with joint replacements can be simply remedied."
Limping, for instance, could just mean that one leg is now a different length from the other, and your healthcare team might suggest a simple shoe raise to solve the problem.
But some problems are not so easily dealt with. Unfortunately, a prosthesis can become loose, especially as time goes by, or it can become fragmented and wear away the surrounding bone. If you experience pain and disability which can't be relieved in any other way a revision arthroplasty (a new joint replacement) may have to be considered. However doing a revision is more complicated than a first replacement, and the outcome can be less successful. Sometimes inserting a further replacement is just not possible, and some of us end up with a 'girdlestone' (see below).
Ankle replacement joints have been developed but can present problems. The design and function of a normal ankle joint is more complex than a hip joint and therefore much more difficult to reproduce artificially. An alternative is an 'arthrodesis' where the surgeon 'fuses' or 'fixates' the joint, to stop the pain that movement causes. Convalescence takes a long time, at least three months in plaster, as bones have to fuse together and you need to be a very patient patient!
I had a partial arthrodesis, as a last resort, in the face of unbearable pain day in day out. I was off work for four months and spent most of that time sitting in a chair or on my bed in plaster feeling very helpless and longing for a bath. But ultimately it was worth it, and it was truly wonderful to get rid of the pain. The limited joint movement doesn't make as much difference as I'd feared, though it's slightly more awkward now going up stairs; but I try to avoid them anyway for the sake of my hips.
I mentioned this before, as you might hear it proposed as a last resort if a hip replacement or revision isn't possible for some reason, or is unsuccessful. The 'ball' of the femur is removed and nothing put in its place. As time goes by, fibrous body tissue grows into the 'space', forming a 'girdlestone'. Janet Mason, now 29, who's had JIA since she was four, ended up with a girdlestone on both sides:
"I was waiting to go in and have my hips re-replaced. Well I got in, I had to, I was so bad in the end I couldn't move at all. It turns out I had an infection in my hips. I don't know how it happened but I was quite ill. Anyway they had to remove my hips and get rid of the infection. It's been a long job but I think I'm back on the road to recovery at last… I didn't think I would be able to do it but I am actually managing to walk without my hips in, using 'gutter crutches'. It's not as bad as I thought it would be. It's just my muscles and my knees which have stiffened up with not being used, but I am slowly improving."
Four years later, Janet was still using gutter crutches, but "I feel fitter than I have in a long time." Someone else had a girdlestone on only one side:
"I had this operation (right leg) in 1968. The following year I had a hip replacement in my left leg which was completely successful. That meant that I had one good artificial hip and, on the other side one grow-it-yourself fibrous tissue arrangement linking hip to femur. Since then I have had practically no pain. I can walk easily on crutches. The shortened leg is dealt with satisfactorily by a built-up shoe. I can cope with most domestic activities." (Writer to 'Dr Grosvenor', in Arthritis News, Winter 1986/87)
If you're tempted to go private, and have the means to do so, make sure you know exactly what you'd be letting yourself in for, and discuss it all thoroughly with your doctor first. You will still need a referral letter from your GP. Check whether the estimate covers everything, including medication costs and cost of the hospital stay. What happens if there are complications? Will you still have enough money to pay?
For some background information on going private, try a website like Private Healthcare UK. You can find out there about private hospitals and clinics including NHS private clinics; about treatments, services and consultants, and examples of some costs. In the 'operations and procedures' section, you can send a request for information or a quotation to up to three private healthcare providers in your local area. Some providers offer fixed price surgery schemes or special finance schemes.
The 'other services' section includes services such as private ambulances, and private physiotherapy. It hadn't occurred to me that now and again it might be worth 'going private' in a fairly minor way, until I just couldn't take any more mega-frustrations waiting all day for hospital ambulance transport to get me home after a major operation. Savings came in handy to treat me to a private ambulance journey, which got me back home at the time I wanted and in a much calmer frame of mind! Not cheap, but surprisingly less expensive than I'd feared.
Another website which goes into more detail about individual private hospitals, guideline prices, consultants, etc, is healthcare research and information provider Dr Foster.
The Healthcare Commission (tel: 020 7448 9200) is responsible for the regulation and inspection of private healthcare providers in England. Their website lists all registered private healthcare providers in England. In Wales the Care Standards Inspectorate is responsible, in Scotland it's the Scottish Commission for the Regulation of Care.
In 2004, the BMA's Ethics Committee produced guidance for doctors on how, and in what circumstances, patients can move between private treatment and the NHS.
We sometimes hear about people who have operations abroad, paid for by the NHS. This is rare, and even if agreed, has drawbacks, for instance what happens if there are complications?
There are two ways in which treatment abroad may sometimes be agreed. First, as part of the drive to treat more patients and reduce waiting times, the NHS has started referring certain patients to other parts of the European Economic Area (EEA) under the Overseas Treatment Programme. Since January 2002 almost 600 patients have received treatment in the EEA in France, Belgium and Germany, mainly for orthopaedic and cardiac procedures. Look at the 'Patient information and frequently asked questions' section of the Department of Health website if you want to know more. Selected patients usually travel in groups escorted by a 'EuroPAL', someone experienced in taking patients to and from an overseas hospital.
Secondly, treatment abroad may, rarely, be authorised by the Department of Health (International Branch) on discretionary grounds, if there are strong clinical reasons supported by the patient's specialists; if the treatment is not available under the NHS; if it can't be given within the normal time for obtaining treatment; and provided the patient's Primary Care Trust agrees to meet the costs. In 1990, 449 applications were made to the Department of Health and 261 were agreed. If authorisation is given, form E112 is issued. For more information see the online 'Patient information' section just mentioned, or contact the DH Customer Service Centre on 020 7210 4850, textphone 020 7210 5025, email dhmail@dh.gsi.gov.uk or write to International Division, Department of Health, Wellington House, 133-155 Waterloo Road, London SE1 8UG.
Finally, you may have heard of the European health Insurance Card (EHIC) which replaced form E111. However this is only for use in an emergency — it entitles you to free or reduced-cost medical treatment that becomes necessary while you’re in a European Economic Area (EEA) country or Switzerland. You can apply for a free EHIC online, or by phone (0845 606 2030).