Looking for TKR advice

[Wolf68]

Hello everyone. I’m a 55 year old male who has had knee problems for the majority of my life. I think it originated from sports injuries as a schoolboy but I remember twisting it while at work when I was about 17 too.

I have a long history of having treatment for knee problems including 2 or 3 arthroscopy operations (I can’t remember exactly how many but at least 2), the last one being in 2010. In the last couple of years I have just had flare ups of knee swelling, causing terrible pain, very restricted movement and mobility issues. Back in June 2023 during one flare up when had to have fluid drawn off the knee I was told I had crystals on the knee but no gout, they also said I had tricompartmental arthritis and needed a total knee replacement. After a few consultations they said the waiting list was around 9 months so suggested because of my relatively young age I should put off the surgery and try to stand the pain for a while longer. Since then I have had several flare ups, each one seeming to be worse than the other and lasting longer each time. There doesn’t seem to be any particular reason for the flare ups although my job requires some walking, standing and short spells of kneeling or bending down. I am having to have more and more time off from work for this and I am sensing that my employer is getting concerned. I used to request more admin work to avoid being off but I am restricted by what I can do and have been told recently it’s not an option anymore.

By November ‘23 I decided I wanted to get myself on the waiting list for the knee replacement surgery but even though my pain is worse, with more frequent flare ups and my GP has requested a referral, I have been told it could be months before I even get a consultation let alone get on the waiting list. This is impacting my life and my mental health, I am struggling to work without pain, I have had holidays where I am unable to do anything and I feel like I’m spoiling it for everyone else so I won’t go on holiday or go very far now. I have been back to my doctor for help but they give me Zapain to manage the pain and say there’s nothing they can do about waiting lists.

I am currently wondering what to do about work, I have a couple of pensions I could draw on but one is a deferred defined benefit pension that has penalties if I take it before 60 unless I can get access due to illness, but I don’t know what qualifies as ill health as obviously my problem is not life threatening.

There seems to be nobody out here who can give answers, it’s all grey areas, how long am I likely to be waiting for a knee replacement? If I find work impossible could I get to draw my pension early? If not could I claim any state benefits?

I know there’s a lot of questions and I am lucky having a very patient and loving family around me so I’m not desperate but I am worried about how this will affect me going forward. Any advice would be greatly appreciated.

[Jalia]

I would advise you to pay privately. I know it shouldn't have to be this way but that is hiw it is these days. Probably better to borrow money if necessary than lose out on pension deal.

[piglette]

I paid privately in the end for a hip replacement. I do know people who have been to France and also Lithuania for orthopaedic surgery and were very pleased with the whole thing. There is no harm in asking if your pension would pay out, although it is a bit of a last resort, but it would be useful to know. I suppose you could try crowd funding, although I know nothing about it! Getting your name on the NHS waiting list is a good idea anyway. You never know.

[hampsetwoden]

A few tips.

1. Get yourself on the waiting list, it may be shorter than they say. My GP told me last June that it was a year, so I went on it. Turned out to be a lot less. I put it off until January, now I am still not ready and they won't put it off anymore, so I am off the list.

2. Get the swelling inflammatory down with NSAIDS such as Naproxen and diclofenac. Maybe ice as well.

3. Get some strengthen exercises for your legs muscles. Your activities at work are good, a desk job will be worse. Walk as much as you can.

4. Look after your health. Keep fit, find exercise that doesn't inflame your knee. Try to keep a good weight.

5. Be patient in all of this and make it your priority.

You can look at my last post to see my story and things that I have done.

[Wolf68 in reply to hampsetwoden]

Thanks for the reply, I think a lot of that will be useful.

In the past I have used naproxen and high strength ibuprofen to control the inflammation and found it very effective but because I have diverticulitis and other bowel problems they have told me to use the gels only which I don’t think help that much.

I really want to be doing some exercise but even the slightest bit is making things worse at the moment. This morning I woke up and thought this feels much better today, less swelling, less stiffness and pain in the joint so I went just for a little walk around the garden and around half hour later the knee is swollen and stiff again and starting to get some pain.

I do agree about a desk job because I find it difficult sitting in the same position for too long without having to move my leg to get a bit of relief from the aching and to stop it ceasing up.

I am chasing up my referral to get on to the waiting list, perhaps you could put me in your slot if you’re not ready yet 😂.

Thanks for the advice on here it’s really good stuff.

[Thanksnhs]

Hi so sorry to hear about the pain you are, although I do have arthritis it was heart failure that made me have to give up work when I was 58.I applied and got PIP which is difficult to get but to me it definitely sounds like you would qualify for mobility alone and it is automatic entitlement to a blue badge you can get PIP even if you are still employed, I would definitely seek advice for the form as it is a nightmare, citizens advice can help and my local council (I am in Scotland) also have a great advice centre.

ESA is another benefit you could be entitled to. I got awarded it until my state pension kicks in at 66 as It was deemed I would never work again, I would seek advice on the form for that as well. None of the above are means tested.

I worked in the civil service for 30 years and I was able to draw my private pension although it's not big but it helps.

The DWP website will give you all the details on how to apply and how much the benefits are, but definitely get advice on the form filling. if you want to ask me anything just message me. Take care and good luck char

[Mikmax]

so sorry your pain is so severe- I find that pain makes me exhausted and sometimes I have to take naps in the afternoon. Why don’t you discuss going part time with your employer as at least that would give you a bit more free time for yourself? Also, I would most definitely get on the list for a TKR. I was reading a very interesting article the other day regarding the waiting lists and apparently the NHS have implemented a new scheme that will allow the patient to go onto a cancellation list at another hospital if they are prepared to travel (patient specifies how far they would travel) and GP can assist with getting you on the list for this. Obviously first step is to actually get on waiting list so it may be worth paying privately for a consultation with orthopaedic surgeon who will also do an x-ray to confirm you need a TKR? Good luck

[katieoxo60]

Hello Wolf, in respect of the financial area of your problem , maybe sometime off work on sick pay might be the immediate option. As you have crystals in the joints these may be due to raised uric acids which can be controlled by diet even if you are not getting bouts of gout. If its gout in the knee the treatment tends to be the same, knee replacement which I am advised is a long wait. However exercise does not help gouty arthritis when in flare the joint needs rest and drug treatment till the swelling goes down . Have you tried stronger pain killers like tramadol , gabapentin, or codeine? You do not mention seeing an ortheopeadic specialist if you do why do they not give you injections for pain .?You also need a correct diagnosis and details of what arthritis it is. You may need to go private to varify any diagnosis. There are lots of different arthritis, raised uric acid is called Hyperuricemia this can be caused by drugs, diet weight or gouty arthritis. Having been through a similar difficulty I feel for you but all patients have a right to know what the problem is or informed if they cannot reach a firm diagnosis. At 55 you have a long way to go to retirement my daughter is your age and has similar problems but we know we have inherited it , and they have refused to refer her to a specialist. I speak from experience through four generations. Take care and go for replacement in my case it has reduced the pain and stopped the swelling

[Wolf68 in reply to katieoxo60]

Thank you, they have said there were crystals but no gout but didn’t give me any treatment other than pain medication.

I have already seen an orthopaedic doctor who has said I have tricompartmental arthritis but at the time he talked me out of going on the waiting list because of my relatively young age, however in the 6 or 7 months since then things have gone considerably worse and I can’t seem to get any relief at the moment. I am currently taking zapain for the pain and this does help sometimes but not when it’s really bad.

A few months ago I had to go to A&E as the pain was so bad and they drew some fluid off the knee, again they said there were crystals but no gout. I spent all night there and at about 6am they said I could go home with no further treatment, I was very disappointed and pointed to my excessively swollen knee and asked why no further treatment and said does that not look like it needs treatment? A nurse told me to try turmeric, I said I take turmeric already so she told me to take more.

[katieoxo60 in reply to Wolf68]

That sounds a typical reply from a nurse. I have heard of tricompartmental which is osteo in all parts of the knee causing inflammation which could be eased by naproxin if you are able to take it . It is severe arthritis and the knee is one of the worst joints to relieve. It is possible to have more than one type of arthritis. you could try a private physio its usually around £50 for assessment and first visit , but beware I went and was given acupuncture which did not really work. They do a type of laser treatment now also it requires 6 treatments I believe , but as yours is severe you might need more. It is somewhat cheaper than a private knee op which only lasts for 20 years maximum , so by retirement you could need another op. There are lots of potions herbal wise but many don't work once the damage has set in. I tried tumeric. My friend took a herbal remedy and now she is using a walker but her knees are massively swollen but she has refused operation. The choice really is yours but they try to avoid operations on people in your age as you have experienced. If you have any question get in touch I am a telephone volunteer for Arthritis Action who advises people on things to manage the arthritis . Our info comes from arthritis sufferers plus researchers etc. We love to hear of others experiences of arthritis approaches in other areas. Enjoy the rest of your day lovely to speak with a fellow sufferer

[13cats-lives]

Hi,

In reply to your question about a total knee replacement, I had my left knee replaced in 2015. Prior to my surgery I was in great pain and barely able to move. Until you have seen the surgeon in person, I cannot say if this is right for you personally. Surgery is a life changing procedure. Before surgery, you must be within a certain weight or show efforts to lose weight because of the strain that the body puts on the joint. It takes some time to recover from the operation. You have to be mentally and physically prepared to push yourself to do this. The replacement has a lifespan of between 10-15 years, so further replacements may be necessary. I am fortunate in that it’s transformed my life, and I no longer feel ‘disabled’.

Good luck!

[Mikmax]

I understand that it’s a big decision when having a joint replacement but the way I look at is this: effectively if you are in severe pain now you have a very low quality of life so if you have the surgery it will almost certainly improve it, and who knows what the future holds for any of us? In the 10-20 years that follow there may be radical breakthroughs in medicine to improve life for all of us. I was reading yesterday about a new drug called Sprifermin which is currently in Phase 3 trials which could revolutionise treatment of OA? In the end it’s your decision but I have never regretted having my knee replacement and I’m sure there are many more on this website who would agree

[Wolf68]

Hi everyone thanks for your replies there’s some really good advice here.

Just a quick update, I have had another appointment with my GP and he has agreed to write to hospital to try to get my referral speeded up. I am still in constant pain that shows little signs of improvement, I have tried walking a little bit more with or without a stick but it is painful, sore and difficult to bend. I am trying a little bit of exercise to stop the knee seizing up but it invariably increases inflammation. Sleeping is difficult, I am constantly waking and trying to get comfortable, I may get a bit of relief for a while but the pain soon wakes me again.

I am now on SSP as the physical aspect of my job is impossible and after speaking to my bosses yesterday they said they have no light duties for me to do so suggested I extend my sick note.

I guess now I have just got to wait for an appointment and try not to let things deteriorate anymore while I’m waiting.