Hip OA - Trying to avoid the unavoidable!

theo

Hi everyone,

My first post here. I apologise in advance for the long post.

I'm sure that my situation is far from unique. I'm 50 and I have hip OA. I have been seeing a consultant for an annual x-ray and consultation for a few years now. Right from the start he gave two options: total hip replacement or cortisone injection. I tried the latter and it didn't have an effect at all.

I used to run, play tennis, 5-a-side and so on. As the pain and stiffness increased I had to drop these one by one and finally around 18 months ago it was the last time I played tennis. I now have a heavy limp due to my right leg being much shorter than the left which is due to a pelvis twist/tilt.

At the end of last year I started having popping, clicking and crackling in the joint. I did some physio with K-Laser, shockwave therapy and exercises and it has improved a bit. Before the physio/laser I was unable to drive more than 5-10 minutes without my hip getting locked and painful. That is not an issue now. I have seen an improvement in mobility as well. However, the improvement has not been enough for me to engage in a more active lifestyle.

I've been trying to find non-surgical solutions like Low Dose Radiation Therapy, prolotherapy or PRP injections, however, they come at a cost and obviously, there's no guaranty that they're going to work. I'm reluctant to put myself on the list - even though there's apparently at least a 12-15 months waiting list in my area.

I am in pain and I can't do the things that I love but I am also scared of the op. It may sound silly but I feel that I won't be 'whole' after the op? I know there are many examples of people who have had the op and gone on to be just fine. I'm scared of the whole procedure and I'm scared of 'what if' I'm the exception and I get a botched op?

But, I have come to the conclusion that I will have to face the music at some point so I've been trying to learn a bit more about the op. I've found that the anterior approach is best for sparing muscles and tendons. I've read about the Rottinger approach and a doctor in London that performs it but it's only private and very expensive! £15k or £20k and at this point I don't know if this Rottinger (anterolateral) technique is a better approach or it's just marketing that makes it sound like the best thing since sliced bread on their website. 30 mins operation, no dislocations, etc.

Apart from getting all this off my chest, I have a few questions.

1. I do not feel that my consultant has given me enough information or options. Is there a way to change? (Also, I've heard that I can see an out of area consultant in an area with less waiting time)
2. If I wanted to have the anterior approach hip replacement, is that an option through NHS?
3. Regarding my leg length discrepancy. Will the op and subsequent physio deal with this?
4. I feel my right hip sticking out a bit. Is that common? Is it because of the inflammation?
5. Anyone had any significant improvement with any non-surgical treatment?

Again, really sorry for the very long post.

PJoanne

Hello @theo

I wanted to welcome you to the community and say hi.

I don't have experience of Hip OA or Hip replacement surgery although I have arthritis elsewhere in my hands, feet and knees. I resonate with your journey from being very active to a less active life style. I used to be a yoga teacher (daily classes) swim 5 x a week and I walked everywhere, and gradually as the arthritis got worse that life has gone. I did go through what I can only describe as a grieving process for the old me. This is very hard to accept and I need an active self care/acceptance regime to manage this.

I don't think you are silly for for feeling that you won't be whole after a replacement op, I hope you don't mind but I will explain why - I had a major op and lost some of my body to cancer 3 years ago. I was chatting to my friend just this week and the very words I used where that only bits of me are left and I am not the same as I was born. I did have a great fear of the op before I went in with similar thoughts as you describe, but I am glad to be through it. Not silly and totally understandable.

Do you think it would be worth booking an appointment with a private consultant just to talk through your options? Yes it would be expensive but maybe worth it?

I have placed some links below, in case you haven't already found this information.

https://www.versusarthritis.org/about-arthritis/treatments/surgery/hip-replacement-surgery/

https://www.versusarthritis.org/get-help/

All the best Joanne

theo

Hi @PJoanne

Thanks for your message. It is comforting to hear that I'm not going mad or just being coward! I know that if I was giving the advice to someone in my position I'd be telling them the same thing everyone else in my close circle is telling me: "Get the hip done!" If only it were that easy to convince myself.

So, sorry to hear about your journey with the cancer and arthritis too. I know too well what you must be going through. I probably need some self care and self love!

I will look at the links and you're right, I should look for private consultation. Hopefully, I'll get a job with private health insurance soon!!

Thanks again,

Theo

Lilymary

Hi @theo and welcome to this lovely community. You really are not being a coward!

Ok, buckle up, long reply coming!

I went through the "hip ordeal" in 2020/2021 and can relate to how it's affecting you. Mine came on really suddenly (rare, but it happens) but the hip had been wearing away for c 15 years without me realising before it gave up after a fall, with hideous pain 24/7. I went from a fit and active fell walker to barely able to get round a supermarket in 6 months. This was during the pandemic, and the Christmas lockdown added 18 months to the waiting list, so I caved in and paid for it myself, as I had almost zero quality of life.

Steroid injections didn't work for me - I was too far gone. They're not a cure, they aim to manage pain and stave off surgery as long as possible. as they can only do a second replacement once after the first joint wears out (c 20 years? Correct me if I'm wrong). It's good that you've found other treatments that help. Keep it up as long as you can, but you'll know when you're ready. The pain will be so bad you'll go through anything to get rid of it, so the prospect of surgery is suddenly appealing.

While it is a big operation, it's very routine. In my case I decided the best way to cope was a state of complete denial about what was involved. I just handed over my body and let them get on with it. When they asked how much sedation I wanted for the surgery, I said "all of it". I thoroughly recommend it. I came round as they wheeled me out of theatre, totally oblivious to what they'd just done. I won't lie, the recovery was hard going, and a bit emotional at times, but very worth it! I'm now walking 6-8 miles fairly comfortably. I could manage around the house while my husband was out almost from Day 1 (on two crutches) but I was grateful for him doing the cooking and shopping, and helping me on with my shoes.

There is always a risk of complications. Many find they're not really aware of their new hip and just crack on after initial recovery, others have had various niggles they learn to adjust to. I've had some very unusual complications which have slowed down recovery (tendon damage that has bewildered my surgons as "we didn't touch that bit") but I'm so much better off now than pre-op. I just find work-arounds for the rest. You can't predict how it will go for any patient.

I remember saying to my surgeon Day 2 post-op that it didn't "feel like my leg" (he said many people say that) but that passes very quickly. And I wear my scar with pride - it's badge of honour for arthritis warriors! My sister has two new knees, she greeted me with "Welcome to the Spare Parts Club"! 😅

I understand anterior surgery carries a risk of nerve damage which can be very painful. I think this is why it's not done much in the UK. It's also close to major arteries, so on balance it may be less risk to go in through the posterior. I haven't come across the Rottinger procedure - I went to the Wrightington, who pioneered hip surgery, only one surgeon offered lateral surgery (not sure if it's exactly the same as Rottinger) but as it involves removing and reinstating a section of bone, which means being on crutches for 12 weeks instead of 6 while the bone heals, it's not routinely offered. I gather it can reduce the risk of complications, but not sure by how much.

As for alternative treatments, I think if they worked the NHS would offer it. I view them with suspicion. It's natural for people to look for non-invasive treatments, but beware of snake-oil peddlers.

My first surgeon was very keen to tell me I wasn't going to end up leaping around like Andy Murray with his new hip, which is fine, because I was rubbish at tennis anyway. But he was very scathing about what professional competitive tennis would do to the new implant, which he considered far more important than winning at Wimbledon! Suffice to say that (a) Mr Murray had world class physios helping his rehab, (b) his body was in a better state than mine to start off with, and ( c) he will be needing it replacing again sooner than us mere mortals.

Now to your questions.

1. Can you change surgeon? Yes. I did. I knew you could request hopspital, but didn't realise you could choose your surgeon, even on the NHS. I changed because the surgeon I had been allocated to only did the lateral surgery with 12-week recovery, and I opted for posterior surgery. It was fine.
2. Re anterior surgery, you could probably find someone to do it if you really wanted, but talk this through with your surgeon. I believe it's more common in the US, don't know why. Most people opt for (or are given) posterior surgery, and there's probably a very good reason for that.
3. Physio won't change your leg length, but mention it to the surgeon - they may (or may not) be able to do something about it. It probably depends on the state of your bones as to where the implant will sit. They do try to make sure they send their patients out with legs the same length, (they measure up during the op) but my physio says most people have one leg longer than the other anyway. One of my new-hip friends did end up with a slight discrepancy but she just wears an orthotic in her shoe to correct it. Your physio may be able to help sort out any associated back/gait problems.
4. I'm not an orthopedic consultant so can't comment with any degree of medical knowledge about why your hip sticks out. Maybe the head of the femur isn't sitting properly in the socket? The xrays should show if that's the case. Have a chat with your physio/surgeon.
5. Improvement from non-surgical treatment? For me, none at all. I was too far gone by the time my hip really kicked off. (prior to that great muscle tone had allowed me to carry on fell walking etc oblivious to my crumbling joint. I have heard people praising turmeric, but by the time I was unable to walk without a stick and on heavy duty opioid pain meds, turmeric wasn't going to cut it. If you've got a twinge at early stage OA, then maybe, but I needed the heavy guns. The turmeric went in the curry.

BUT…. the most useful thing you could do at this stage is exercises to build up the muscles that support the hip. Many people report an improvement in their symptoms from this - it takes weeks, even a few months, to see the difference, but it really is worth it for mobility and pain management. Swimming and cycling are good low impact exercises that you may still be able to manage. This will also greatly aid your recovery post op. Chat to your physio about this, but meanwhile, have a look at this link (I hope it works, if not google Versus Arthritis Exercises for Hips).

https://versusarthritis.org/about-arthritis/exercising-with-arthritis/exercises-for-healthy-joints/exercises-for-the-hips/

I hope this is helpful. Arthritis really is pants, it ruins your quality of life, it can be unbearably painful, it can affect your mental health, energy levels, and every aspect of yourday to day life. It can be a lot to adjust to, whatever your job or pleasures in life, but for every activity you have to give up, find a new one to take its place. Focus on what you can still do, not what you've had to give up. I know my Himalayan trekking days are over, but there are plenty of other pleasures to make me smile. I've got back into horse riding after a long break (very badly and gently), but I'm just delighted to be back on a horse again. I still enjoy my garden, I'm back in the hills doing the less technical walks, I now volunteer for an animal rescue charity, and I do (gentle) pilates and yoga three times a week, all of which would have been impossible pre-surgery. The surgery is a haul, but it's worth it.

I hope this helps. Keep posting on this community, they kept me afloat when things got bad, and there's so much experience among the members. We all know how it feels when it gets really rubbish.

Chin up.

theo

@Lilymary Wow! So many things to unpack! Thank you so much for taking the time to reply! It's always great to hear from someone who's done it.

Although the pain is there, it is nowhere near to the level you experienced. I take an ibuprofen only very occasionally - maybe a couple of times a month - to take the edge off. Of course, moving the leg in certain ways or doing a sudden move brings a lot more and sharp pain. Another thing I've heard is that you know it's time for the op when you can't even sleep from the pain. So far, I'm ok.

There are a few things that I'm going to want to do, but I will certainly seek out advice privately or through the NHS. I will discuss (and research) the different options in a bit more detail and I'll try and find waiting times for different areas around here to see if it's worth exploring that.

I want to do an MRI and get a more detailed idea of what's happening to my hip. The leg length discrepancy is most probably because of pelvis tilt or twist. I think it's because of all the muscle imbalances that have been caused because of my altered gait due to pain and it has gotten progressively worse.

I have been doing some exercises (quite a few like those in the link - thank you for sending that) but I haven't been super-consistent. I'm getting better at doing my programme 3-4 times a week. The exercises and physio over the past 4-5 months have reduced my crepitus and pain while sitting, so, hopefully it will bring some more improvement, but like you said, I also treat it as 'prehab' for the eventual op.

distantshores

@theo Hi I have managed OA of the hip for 13/14 years now and, like you, I am getting to the point where it will have to be done. I have managed it with supplements, exercise, luck and determination to avoid an operation as I am absolutely terrified that I will end up worse off. I know people who have had it done and it has been fine but I am scared that I would be the one who ended up worse off and in a wheelchair - like the lottery it could be you!

I paid for a private consultation with an orthopaedic surgeon a couple of months ago and asked about PRP and steroid injections but he said it wasn't worth doing. It would be costly and no guarantees. I didn't ask about the technicalities of the operation and have no interest in the anatomy at all.

I can manage my daily life and continue to do 3 dancercise classes a week and go Nordic walking but walking without poles is becoming harder to manage and I can only walk a relatively short distance now (maybe a mile or so). There is extensive deterioration in the right hip but it doesn't keep me awake at night so I am still able to bury my head in the sand about it. The imbalance also puts pressure on the lower back and the other leg and that is what is worrying me now.

I turned down a date in September for a replacement. I am not ready and plan to go to Greece then. I have just had the letter to book another referral appointment so will see.

I hadn't heard of the Rottinger approach but have just had a look at the website - it almost sounds too good to be true but if it does work so well why aren't they offering it on the NHS.

I don't think there are any easy answers and it has taken me years to accept that I will have to have a replacement and even now I am very reluctant. Just receiving the letter for referral today has sent me into a state of anxiety and depression but I will have to go ahead and do it. I think I will book a holiday when I get a date so I have something to look forward to. It is best to try to be rational about it - my sister had her first hip op about 13 years ago and we flew to Cambodia just 6 months after it was done and it was fine. I will stop rambling on now.

theo

Hey @distantshores

Thanks for the message. It's good to know that I'm not the only one (over)thinking this! Hopefully, when we get it done we'll just realise how silly we were to hold off for so long.

The last two paragraphs of this article give me hope that I can get back to playing the sports that I love once done.

https://apple.news/AMo4GBWlzTq6rw2L-SwBFEQ

Regarding steroid injections, I've read that they do more harm than good and should really only be done when you're just waiting for the op. As for PRP, prolotherapy, LDRT and so on, yes, there's no guaranties. If I could afford to do them all, I would to be honest, but it's around £1500 for a course of PRP and £1500 for proletherapy too. LDRT is £4500. I had a conversation with the doctor that does LDRT and sent him my xray from last year which shows bone-on-bone on one side of the hip socket. On the website it says about 70% see improvement. 'Improvement' apparently is any reduction in pain of 2 or more. (so, if you had pain 8/10 and it drops to 6/10, that's an improvement). Of course, results may vary from no reduction at all to more than 2. In my case, he told me that it's more like a 50/50 chance that I'd see any improvement. Unless I win the lottery, I don't fancy my chances. I better keep the money and spend it for a private hip op.

I'm off to Greece in August and I'm trying to do as much strength and mobility I can so I can get around.

Re Rottinger, I agree. I looked at the website, watched the videos, etc and I'm being skeptical. Is it just marketing? I tried to find more information that was not linked to Dr Kley but I think everything I've found seems to be linked. It does say that he has performed 10,000 orthopaedic treatments (although not necessarily 10,000 Röttinger procedures). I like the fact that it says it's done via virtual software and then in the theatre and also that there are no restrictions to movement after the procedure. But, it's £15k or £20k depending on the package.

Hopefully, everything will align and those of us still waiting to pull the trigger will do it and we'll have a much better life afterwards.

If all goes well, I will prioritise these two for my bucket list:

https://www.pilgrim.es/en/routes/

and

https://www.spartathlon.gr/en/home/

distantshores

@theo No you are not the only one overthinking it! I have overthought it for years but I suppose as I have been able to do more or less what I want since diagnosis I have just been able to carry on with my life until fairly recently when it has become noticeably worse. At 72 I am considerably older than you and time is running out for me to go to places that are still on my bucket list although over the last 14/15 years I have been able to go to quite a lot of places globally including Australia and camping in the Okavango Delta.

I am going to Greece in September. Hopefully, I will be able to get on and off the ferry. Last time I was there I asked for help taking my case off the ferry so will probably do that again. I was going to go to India in November but I think I will have to have the hip done first. I will take my walking poles which should help get me up and down the hill. Where are you going in Greece? Some places are flatter than others although mostly not flat

The Spartathlon will not be on my list!! That's a very hard race and it is still hot in September.

I have had another referral letter so will try to pluck up the courage to fill it in with my choices and wait to see what they come back with.

Good luck

theo

@distantshores I am slowly getting ready to pull the trigger and get on the list. My latest 'discovery' is SuperPath, which is a relatively new technique that is minimally invasive, muscle sparing and so on. I'm trying to find out a surgeon that offers that, find out how many operations they've performed and how long I will have to wait. I won't go into the technicalities but it sounds pretty promising.

Good luck to us!!

Bevdav123

Hi both, I’m nearly 9 weeks post op ( left hip replacement) like you both I was terrified of having this done but I can honestly say do it, get on that list, I’m now feeling back to normal ( well as normal as I can be 😊) I was due to have the op in May but there was a cancellation and I was called in 24/4 , I was first down for the op, I went in to theatre at 9 and was back in the ward by 11, was having a sandwich by 12, the physios had me up walking by late afternoon, I was home the next afternoon, don’t get me wrong it’s uncomfortable the first week or so but you’ll be amazed how quickly things progress, I’m off on holiday end of the week, and I’m starting back to work 15/7 , I work in a pharmacy so I’m on my feet most of the day, so I’m hoping I’ll be ok, I’m also on the list to get the other hip replaced, and now I know what’s ahead I’ve no hesitation, the thought is worse than the actual operation, so do it, you won’t regret it.

theo

I've gone from 'no way', to 'maybe', to 'almost there'!! All these messages help. I'm putting myself on the list. 🤞

distantshores

Thanks bevdav. It is encouraging to read that. I live on my own which is an added difficulty and |I have no idea how I will manage. I want my holiday in Greece first!! Not sure about going to India before I have it done. I honestly dread it.

So you will be going back to work about 12 weeks after the op? Hopefully they will allow you regular breaks but pharmacies are very busy.

Janlyn

@theo I was a no way, then a maybe and now I'm six months post op and absolutely no regrets. Good to hear you're putting yourself on the list.

@distantshores I live on my own and I was terrified but I actually managed really well. I got organised well before the op so I had everything I needed within easy reach and plenty of easy to prepare food available. I had neighbours who were happy to pop in but I actually didn't need them to. My son or daughter in law popped in briefly each day for the first week or two and I save any little jobs I couldn't manage for them but I can honestly say I could actually have managed - you do find a way. I was extremely careful on the stairs and at night and always kept my phone in a bag around my neck when moving around in case I needed to call for help. My physio actually said he liked patients who lived along because they made good, quick recoveries often having to find innovative ways to do things.

I'm going to Greece soon and I can honestly say I am looking forward to it whereas when I went last year I was dreading it - there were so many challenges and I was constantly trying not to overdo my walking and resting to ease the pain.

Bevdav123

@distantshores It will be 11 weeks, I’m sure I’ll be able to sit for 5 minutes here and there, it’s only a small pharmacy and there’s only 4 dispensers, and I feel guilty that they’ve had to cover my hours, and I know how busy they get, im a bit bored at home and I miss my friends and the customers, we live in a small village and everyone knows everyone so it will be nice to get back to normal.

Nurina

@theo Hi. I had my hip replacement in January after years of denial and trying everything that existed on Earth to avoid the surgery. Having the surgery is the best thing I'ever done. My leg feels like anything ever happened to it. Don't hesitate. This is a very safe procedure.

I did an exhaustive research about the surgery approach. It's strange to find out that only very expensive private clinics with youtube channels, do the anterior approach claiming you can walk from the hospital the same day. I asked for a quote in a very famous hospital that do this advanced procedure with robotic arms, AI, and I don't know what other scifi stuff. A saleswoman with the typical marketing speech called me trying to sell me the procedure as she was trying to sell me a car. It didn't feel honest. I didn't like at all.

Some of these "famous" surgeons do knees and other orthopaedic procedures and I really preferred an specialist in just hips. I think the best orthopaedic surgeons, not only in UK, do the posterior approach for some reason but maybe it depends on the damage of the joint. In NHS, some surgeons do the "minimal invasive"

At the end, because I had to pay privately due to the horrendous pain, I chose a reliable surgeon with more than 2000 hip replacement and a 98% of success, very recommended by other colleagues, physiotherapists and orthopaedic nurses. Posterior approach and a visible scar but it's worth. He left everything ready for an easy revision in 20 years.

I hope you can do the beautiful Camino de Santiago very soon.

SoniaR

I had my THR in 2016 and I felt it was a breeze after the first two weeks. Like you I was terrified and the thought of a piece of metal in my body along with a metal spike inside my thigh filled me with fear! The first 2 weeks you will be on crutches, but you can still climb stairs albeit slowly, and by week 7 I was driving quite comfortably. I actually did physio exercises for a good 8 months at home which I feel really helped my recovery. The exercises are not difficult. My brother has had both done and feels the same. I feel no pain or discomfort and I’m so glad I had it done. Now to get my knees done……….

There are other things you could try like gel injections but you don’t them on the NHS only privately. Apparently they are a 76% success rate, according to some clinics, but my private hospital doesn’t do them so not sure how truly effective they are. If a private Orthapaedic consultant in a hospital doesn’t do them then I’m dubious. Please try not to overthink, impossible I know, and in my experience steroid injections didn’t work and neither did a nerve block. Surgery may be your best bet. Imagine being pain free! Good luck with your journey.

theo

@Bevdav123 I know we all (ok, maybe not everybody!) feels guilty, but at the end of the day, you have to do what's best for you. I'm sure your colleagues would also tell you not to worry about that. They'll be happy to see out and about!

@Nurina @SoniaR @Janlyn Thank you all for sharing the positive experiences. Everyone who has been kind enough to send a response on here has helped me feel more comfortable. Even 2-3 weeks ago I was totally against it and I would try anything, but it feels like I'm beating a dead horse.

I am sold on the 'minimally invasive' SuperPath Ceramic on Ceramic. I'm trying to find surgeons in hospitals near my area that do that and also try to get an idea of waiting times. I had a response from Leicester hospital. 9 months for initial consultation (although I could do that pretty much immediately going private) and another 9-12 months for the op.

Warwick seems to have only about 3 months waiting time for the op. The lead consultant for Hip and Knee arthroplasty at Warwick specialises in SuperPath C on C, so it could all work out sooner rather than later.

I'll keep you posted!!