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THR Bilateral THR due to AVN

Thank Jamie,
I have the appointments for MRI already booked for end of August. I try not to overload my joints so I use crutches (I definitely need one at least to offload the left leg which is a lot worse and it’s causing a limp). I’ll keep you updated about the new MRIs. Thank for your support xxx
 
Jamie said:
understand the “wait and see” with the underfunded and overworked NHS
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It shouldn't make a difference to the principle of whether treatment is advisable- just how long you have to wait for elective surgery.
I note that @emersonf has had three opinions including apparently one of the top hip surgeons in the UK. So I wonder if there are particular concerns that make them reluctant to operate or want to wait and see?

Jamie said:
guess in the scheme of things, a 3 month wait isn’t going to make much difference one way or another, especially if you feel you’ve exhausted all your surgeon options. Can you make that 3 month appointment now so you don’t have to wait even longer to be seen and have a new MRI
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Agree.
I understand the frustration and fear of the future. Have you tried asking why they think wait and see is best in your case?
 
Hi @EalingGran,
Thank you for your response. I think they are saying that rehabilitation will be very difficult if I can’t walk because of the knees. The AVN on both hips was ‘stable’ on MRI scans done six weeks apart so they are saying it might stay stable. But my function has deteriorated and I walk with a very bad limp, small strides (a bit like a duck) and I now use crutches. One of the surgeons I saw is Sarah Muirhead Allwood, considered to be one of the best and most experienced hip surgeons in the UK. She seemed really with it and very thorough. But she wasn’t keen to jump to surgery and asked me to have more scans in 3 months. The knee surgeon has told me the same thing - AVN on knees is stable and we should wait and see as it might stabilise. I am at a loss with the ‘stabilisation’ benefits as I my mobility is already very restricted. So if stable means staying as I am, it’s very depressing. I can’t get up from a sitting position or bend me knees to dry my legs or wear socks, shoes etc. until two months ago I was walking 5-6 miles a day and was very active at home and socially. Now, everything is a struggle, it takes me forever to do anything.
 
I just looked up Sarah Muirhead Allwood and she does seem to be a real expert on complex hip repairs. I noted she operated on Andy Murray and the Queen Mother as well. So she must have good reasons for her reservations.
Did you explain your functionality issues fully?
 
Would it be worth writing an email explaining everything that makes you worried about waiting? You could also ask for an advocacy service called PALS ( patient Liaison Service) to help you put your case. Every NHS hospital has one.
If you are in London and don't get satisfactory answers and can afford it- I would really recommend my surgeon Mr Alex Liddle for a further opinion. I would really trust his views.
He is a hip and knee specialist who is a senior lecturer at Imperial. He is NHS at Charing X and private at King Edward
He is an excellent surgeon. He straightened my 20 degree valgus leg through a 4-5 inch partial knee replacement incision and did a wonderful job. But more than that he is really thoughtful and explains things really well. I think his communication skills are exceptional for a surgeon.
 
Thank you @EalingGran, thanks for recommending your surgeon. I think I’ll wait until end of August and repeat the MRIs and see what they say before getting a fourth opinion. As you said, probably Sarah Muirhead Allwood would have good reasons to wait a bit. I think she said there is a small chance of my AVN staying stable and at 57 it’s worth trying to save the joints. My functionality when I saw her (6 weeks ago) was not as bad as it is now
 
It's valuable guidance on potentially paying for initial advice. Personally, I have experience of mixing and matching with private and NHS. I paid initially to get in to see my surgeon of choice after researching speciality and experience available that was a reasonable distance to me. My local hospital doesn't have a good reputation for orthopaedics. The benefit of paying was a speedy appointment and a longer and more thorough consultation. I really noticed the difference when I visited the same surgeon in an NHS hospital. He was much more rushed and clearly under time pressure and in scrubs (or similar). When I saw him privately, he was relaxed and casual in a suit. Much more talkative and receptive. Small thing but I know if I could afford it and I needed a first consultation again, I would pay. At my private initial appointment he offered me his services on the NHS (go on his list) or private. I've now paid for one hip and having the second with the same surgeon but free through the NHS. The experience also exposed me to my surgeons secretarial support system. That's been very beneficial. It was the secretary who got me bumped up for my first surgery and then handed me over to her colleague in the same office who delt with the NHS list. This secretary has done the legwork on my behalf to get my upcoming surgery booked in a lot quicker than I anticipated. They have the ear of the surgeons!
 
Thanks @Deni444, I think the two surgeons I saw privately don’t do NHS work. The one that does work in an NHS hospital (Chelsea and Westminster) told me that they cancel THRs very often when they have emergencies etc so suggested I do it privately through the insurance company which will cover most of the expenses. I haven’t decided which of the 3 I would go to if/when the time comes for the operation.

It’s very good that you trusted your surgeon fully. I don’t have the same feeling with mine. Maybe it’s because (as they said) I fall into a grey area - they can’t decide whether I’ll be better off with the surgeries as I have multiple joints that are affected so that will make recovery challenging and long.
 
I understand your frustration, it's really difficult when there are multiple joints involved. I don't know an awful lot about AVN but my left hip was what they call collapsed due to arthritis and this caused incredible instability and mobility issues for my knees. I believe that getting one hip fixed has made a big difference, despite the fact that I continue to be far from perfect. I too found it difficult to get my head around a questionable prognosis. I trust my surgeon to do the best that he can based on his reputation rather than trust him to fix everything. If that makes sense?

Maybe sitting down and writing out a list of your concerns and questions with a view to a further conversation would help reassure you. Maybe focus on different scenarios and likely outcomes. Of you fall into a grey area, that logically means a range of possibilities. Maybe understanding those better would help with your confidence? You could see another specialist, as suggested above, simply to get a better understanding, more of an education on the situation.
 
Thanks for this @Deni444 , I appreciate you taking the time to respond. I totally understand what you are saying about managing expectations. I think everything happened so quickly for me, I went from walking 6 miles a day until May, to a diagnosis of hips AVN and soon after, knees AVN. The pain increased and my function decreased by the week and while the initial advice to have two hip replacements shocked me, at least the surgeons thought I would make a good recovery. And then finding out about the knees (pain increasing every week now) made everything more complicated and the surgeons less keen to ‘jump into THR’ now.

I am booked for surgery on the 8th of September, a couple of weeks after you have your second THR.
 
Thanks for sharing your surgery date, @emersonf. I will create a signature for you and we will add you to the August hip team.

I know we've shared our pre-op guidelines with you before, but just as a reminder, I'm leaving them here again to help you prepare for you surgery.

Recovery Aids: A comprehensive list for hospital and home
Recliner Chairs: Things you need to know if buying one for your recovery
Pre-Op Interviews: What's involved?
Good nutrition -- both pre-op and post-op is important to recovery. Here are dietary tips, and nutrition basics that you will find helpful.

Best wishes.
 
We'll be recovery buddies! I look forward to being able to cheer each other along. I'm trying to be as open minded as possible in terms of outcomes and what recovery will be like. One day at a time is my new motto and second motto, a new hip is better than a bad hip! I'll take the small wins and celebrate them.
 
Hello everyone

I wonder if anyone can help me understand how the insurance works with THRs in the UK. I’ve been told by my insurance (whom we’ve been paying a fortune all these years) that the surgeon and hospital I chose do not adhere to their fees and that the insurance will only cover what they consider a reasonable or average price for a THR. Their ‘reasonable’ fee for a consultant is £800 but the surgeon I chose charges £2500. The anaesthetist fee is also well above what the insurance will pay. For Hospital costs, the insurance said they cover up to £9000 which would include up to 6 nights hospital stay but they wouldn’t tell me whether they would pay the maximum if I stay for 1-2 nights only. The hospital fee for self funding patients is £15000 (excluding surgeon and anaesthetist fee). I am now told that the hospital fee might be much higher if I go through the insurance and therefore the shortfall won’t be £6000 but a lot more. I am a bit lost and no one is being clear about the costs. Has anyone dealt with this scenario?
 
This is something none of our UK members has mentioned on the forum before. I’ll tag @EalingGran and @Jaycey to see if they have any knowledge about how private insurance works. It seems unreal to me that the terms of what they would pay would not have been made clear when you signed up for the insurance.
 
I have never used private health insurance but I do know that they sometimes( ?often) don't cover the surgeon/ hospital you want. I have preferred to just use the NHS and then self pay if there is a waiting list and/or I want a particular doctor.
I do know that the other issue with private insurance is that they are often very picky/ expensive about previous health conditions.
£9000 seems very tight for a THR and the surgeon fee rather low.
I do have some friends who do private medical work and I know insurers are trying to squeeze down medical fees and exclude doctors who won't accept their fee scales.
I think it would be worth trying to find out costings from a few hospitals and also challenging the insurance company about which consultants and hospitals are fully covered by your scheme.
 
You can complain to the financial ombudsman service I think if you feel your insurance company is not dealing fairly with you. You could argue you have been mis- sold if you were paying premiums but now find your cover is very inadequate.
 
emersonf said:
hospital I chose do not adhere to their fees and that the insurance will only cover what they consider a reasonable or average price for a THR. Their ‘reasonable’ fee for a consultant is £800 but the surgeon I chose charges £2500. The anaesthetist fee is also well above what the insurance will pay. For Hospital costs, the insurance said they cover up to £9000 which would
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Could you also argue with your insurance that you are not an "average" THR case because of your AVN ( which was only recently diagnosed- so not a preexisting condition). Therefore you need a more specialised and expensive surgery??
 
At the beginning of my issues a few years ago my private insurance refused to cover any investigation work, even x-ray. They suddenly decided my arthritis was a pre-existing condition, even though it had not been previously diagnosed. So frustrated after a couple of months stuck in their buerocracy and getting worse with no medical help, I hastily cancelled in anger to get help from the NHS. I'm piping up about it because I think I made a costly mistake. In hindsight, I wish that I'd have stayed and argued it out with them. I ended up paying a lot of money for surgery. I had limited investigation on the NHS for suspected Lupus and still have not really had sufficient help to diagnose my particular inflammatory arthritis. The insurance wanted to wipe their hands of any involvement. I do wonder if they make it difficult in the hope that people will drop out like I did. Certainly exhaust all possiblity in terms of challenging them as per advice mentioned above. I really wish I had not been so rash.
 
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Thanks for your advice @EalingGran and @Deni444. The insurance company always tries to get out of paying anything for this or other conditions we made claims. So I end up bypassing them and going private sometimes but private clinics are also very unclear about costs and there are so many hidden costs which I had not anticipated. THR costs A LOT of money so I can’t afford a few thousand of hidden, added costs. Tried to speak to the insurance again, so unhelpful, always refer me back to my policy documents which are so complicated and confusing. The hospital says I should speak to the insurance again, the insurance says I should speak to the hospital, the surgeon’s secretary says she doesn’t deal with financial matters and I should speak to the hospital financial department and the insurance ‍
 
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