Fighting for Knee Replacement Surgery

Shellby

Hi everyone

I'm going to try not to make this post epic. If you read to the end thank you, and if you have any advice thank you again!

I'm 47, and was diagnosed as having severe osteoarthritis in my left knee in 2019, after a year of pain. The same was diagnosed for my right knee in 2020. My family are riddled with osteoarthritis amongst others. My Dad has had to have hip replacements, my cousins, uncles, aunts etc. But they tell me it's not genetic.

Initially I was told my left knee needed a partial replacement, and later on was told my right knee needed the same too. The dreaded BMI was 34 in 2019, they wanted me to reduce it as much as possible, then they'd put me on the surgery wait list.

Covid happened, everything was put on hold, both knees deteriorated quite dramatically, I have very little mobility now, which means the weight I did lose has gone back on plus some extra.

I've been told I now need total knee replacement surgery in both knees. But my BMI at 40 was too high for surgery. So I have managed to lose a bit of weight to get to 38 BMI, but have plateaued, and even with very drastic reduction in what I'm eating, I'm not losing the weight anymore.

So now their excuse is I'm too young for surgery. I've been referred back to physio (who didn't help by telling me she sees people much larger and heavier than me who've had knee replacement surgery) and been told to use a knee brace to get me mobile.

I have walked every path they've sent me down (no pun intended), ticked every box to the best of my ability, cried, begged, politely asked, sought second opinions, to no avail.

I'm in this horrible limbo of needing surgery but not being able to find anyone that will give it (unless I go private, which is well beyond my reach). My mental health has nosedived. I'm doing my best to keep my part time admin job but I'm on the verge of having to take sick leave because dragging myself in every day is getting more challenging. This sounds shocking, even to me, but I honestly feel I'd have a better quality of life if they amputated both legs above the knee.

What can I do now? Do I just wait it out? Do I try for Gastric Surgery? Can I change my NHS Trust area? I'm desperate for help please, any thankfully received.

Loggiemod

Hello @Shellby you are in a bit of a difficult situation and I can understand your frustration. Might be worth giving the Helpline a call. They might have some info on NHS Trusts. In the meantime have a look at

https://www.versusarthritis.org/about-arthritis/managing-symptoms/diet/

and

https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-wellbeing/

I do hope you get some progress soon

Kind regards

Peter

stickywicket

Hello there,

I can ‘hear’ your distress and frustration. Believe me, you’ve only to read a few threads on here to know that it’s not just you.

Even long before covid many hospitals were restricting joint replacement ops by both age and weight. @dreamdaisy used to tell people that she was described as bone on bone but too young and too fat’ about ten years ago. She’s no longer too young but has stopped seeking surgery. We had a shortage of doctors and nurses long before covid. Now many are retiring and some nurses are moving on, tired of having to use foodbanks. The younger the patient is the more likely they will need revision surgery which takes up twice the theatre time and usually requires a longer stay in hospital. I know. I got new knees at 31 as I’d had RA for 20 years by then and OA for a bit less. I’ve had one knee revised. The other can’t be done.

None of this will be of any comfort to you. I guess you have to look at what you can control.

A change of hospitals? I’m not sure. You could read here and maybe talk to your GP about it. https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/can-i-choose-where-to-receive-treatment/

You could maybe contact your local PALS for advice.

You could ask to be referred to a Pain Clinic.

Certainly, your physio’s advice on getting mobile is very valuable. The stronger our muscles are the better job they do of supporting joints. That way our joints hurt less and we are able to do more. (A very UNvicious circle.)

You did very well to lose weight. Even though it didn’t get you a TKR it will have helped and also proved that you can do it. Although exercise(s) is/are vital for our joints the thinking now is that it has little effect on weight loss. Diet is far more important. We had a lady on here, confined to a wheelchair, who lost 5 stones. It can be done.

I know someone who had successful gastric band surgery but it’s a long haul. Amputation? Don’t even think of it. That, too, is complicated and would bring its own problems.

I think you're right that there can be some genetic factor at work sometimes with OA. Try reading this:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2694558/

Part of the conclusion is:

“genetic inheritance is a factor that should be considered in the near future for diagnosing and treating osteoarthritis. On the other hand, it is important to recognize the interaction between genetic and environmental factors (e.g. obesity, excessive stress on the joint articulation, or the type of occupation) as it can be critical in the clinical expression of the disease.“

I don’t know if any of this will be of help but I hope you can get something useful out of it.

airwave

To think of this on a wider basis, we are all in pain, wouldn’t be on here otherwise! We are part of the waiting class, up and down the country, a ‘perfect storm’ of medical problems that need attention, after a lifetime of arther I doubt whether we’ll get to the top of the list for attention? The clamour for attention has just about passed me by and must accept that it’s the way things are. The medical profession cannot work any faster or any harder and to ask them to work more means they must have infinite reserves of stamina and I’m sure they like to be home of a night? No matter how many are involved there would never be enough.

arther must be tackled on a multi discipline basis, there is no one remedy that works for all. There are so many answers in these forums, from doctors, consultants, physios and just about every branch of medicine, it’s up to you to find your own mix of what works for you. No, this is not a ‘brush off’, ‘slope shoulder’ or an attempt to bypass your post, there are answers out there but they are for you to find and only then will they mean enough for you to take on board and mean something to you?

I have many things that help, my shed when I’m building, mending or even getting ready to work, Reading, using my models, riding my electric bike, with my gc, cognitive skills, doing my exercises and even getting up to mischief……. they all blot out arther and combined with heat, minor use of painkillers and enjoyment of life can we say we are winning. Don’t rely on the medical profession they will just give you medical answers!

it’s a grin, honest!