THR Diagnosed with bilateral acetabular protrusion at 37 - feeling a little lost!

moonie8404

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Hi everyone, i'm new to the forum after i've been googling madly these last few months trying to find some more answers on my condition i've just been diagnosed with.

I have always had issues with my hips since a little girl, I could never sit crossed legged at school and always wondered why. Anyhow as I grew up I started getting issues with my left knee subluxing which was eventually operated on when I was 21. Along with issues back and neck pain and I was referred to rheumatology who diagnosed me with fibromyalgia but couldn't confirm what else was causing my issues. I fell pregnant when I was 31, and throughout that pregnancy I had awful pain in my hips which got so bad I ended up on crutches as I was unable to walk. I was diagnosed with Sensory Processing Disorder (SPD) but after my Emergency C section (EMCS) with my rather large and heavy son, I still had problems in my hips and SI joints hurt. MRI confirmed bilateral inflammation and I was diagnosed with Ankylosing Spondylitis. I went on to have another child in 2017 however I found this pregnancy much more manageable in terms of pain due to great physio support.

Fast forward and my condition has gotten worse over the last few years even being on biologics, until in 2021 I told my rheumy that my hips were just getting so painful. She ordered an MRI and the results of that led to me being seen by an orthopaedic surgeon who did a x ray and last year told me I had bilateral acetabuli protrusio and that I will need both hips replacing at some point. He said my AS has caused softening to the bone which has caused this. However because I was 37 (38 now) they want to put off the replacements as much as possible due to the lifespan of hip replacement joints and want to reduce how many I may need in my life, they said they want to monitor regularly (once a year with the NHS) on x rays the level of progression as they do not want it to protrude into the pelvic space.

This was back in September, now March and I can feel my pain has increased even since then - they said my left was the worst, however I saw another OS in December for my knee problems (apparently ITB syndrome) I am having (which he says are related to my hip).

I can't find much out there really and feeling a bit of a loss as I always like to do research into what I have, how I can manage it, I can't even find anything on the NHS, it seems quite a rare thing to have and still studies are being undertaken into it - ideally i'd love to see a OS who has specialist knowledge in the area as i'm a little concerned why one OS is telling me my left side is worse then another is saying my right side is worse - doesn't fill me with much confidence.

I've attached my x rays of my hip - is there anyone out there with experience of this, or have it themselves and can help? My mobility is reduced because of this as is getting worse, my AS also causes a lot of issues, I have slipping rib syndrome on top of this and only recovering from surgery from that. I can no longer lay on my sides in bed due to the hip pain I get from the pressure on the joints, so I have to lay on my back but this puts pressure on my SI joints which are inflamed and damaged. My anti-inflammatories I am on aren't doing anything to reduce inflammation, my OS said my rheumy needs to get on top of my inflammation but my rheumy refuses to change my meds or my biologics until my hips are resolved. I've two young children and i've already missed out on so much play with them due to my disabilities which are just getting worse, it makes me so sad I can't do things with them and they at the ages of 4 and 7 have to look after me when I'm in pain or help me up off the floor or stand up from a chair. They shouldn't have to do that!

What options do I have? How much longer a wait do I have? I know its going to get much worse before getting better - my pain management team won't issue me with painkillers as say i'm on enough (i take 60mg Etoricoxib and 1800mg Gabapention daily). They took away my pain patches :(.

Sorry this is a bit rambly and well done if you have got that far. Any advice gratefully received or directions to any articles or information. I am based near Tunbridge Wells, Kent, UK if that helps at all. Thanks so much.
 

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:hi: @moonie8404
Welcome to the forum.
I am so sorry for your complex situation and the pain you are in... I'm sure it is all over-whelming.
I'm hoping you might get some advice about how to navigate the NHS from our UK folks, as I've heard its not in the best place right now.
I will need both hips replacing at some point. He said my AS has caused softening to the bone which has caused this. However because I was 37 (38 now) they want to put off the replacements as much as possible due to the lifespan of hip replacement joints and want to reduce how many I may need in my life, they said they want to monitor regularly (once a year with the NHS) on x rays the level of progression as they do not want it to protrude into the pelvic space.
In my opinion, you need them replaced as soon as possible!
Yes, there might be a revision in your future...who knows when...20, 30 years down the line but you do not need to suffer that long nor should your children have to sacrifice having a healthy as possible mum.

I have slipping rib syndrome on top of this and only recovering from surgery from that. I can no longer lay on my sides in bed due to the hip pain I get from the pressure on the joints, so I have to lay on my back but this puts pressure on my SI joints which are inflamed and damaged
Oh my stars, that sounds miserable.:sorry:
My anti-inflammatories I am on aren't doing anything to reduce inflammation, my OS said my rheumy needs to get on top of my inflammation but my rheumy refuses to change my meds or my biologics until my hips are resolved
I agree with the rheumatologist... those hip balls digging into your pelvis is obviously going to cause inflammation... geez, what a catch 22.
I've two young children and i've already missed out on so much play with them due to my disabilities which are just getting worse, it makes me so sad I can't do things with them and they at the ages of 4 and 7 have to look after me when I'm in pain or help me up off the floor or stand up from a chair. They shouldn't have to do that!
So sad reading this.

You will definitely need a surgeon that is skilled in complex cases, but first you need to figure out who you need to begin to push to get them to agree hip replacement can't wait.
I know I'm stating alot of the obvious but sharing advice and ideas (and some true empathy) can perhaps create some options.

We certainly hope you can get someone to pay attention.
 
@moonie8404 Welcome to BoneSmart! Sounds like your surgeon is a bit on the old school side of thinking. First, this is not a rare condition. Yes, a small percentage of people with hip problems have this issue. But any experience hip surgeon will know exactly how to deal with this.

Second, age is no longer a factor in having THR. Technology is on your side! Implants have evolved and are outlasting patients these days. Anyone who is telling you to wait is just not right. Sure you might need a revision in the future. But there really is no reason to wait for surgery.

What you need is a surgeon who deals with young patients with arthritis. I may be able to help you find someone. Can you tell me where in the UK you are located and hospitals are near to that location. If you can give me the name of the surgeon you saw that would also be helpful. We need to find you someone with no connection to your current surgeon.

PS - if you type acetabular protrusion into the Search function (top right of any page on the blue bar) you will get a list of many threads discussing this condition.
 
@moonie8404 Welcome to BoneSmart! Sounds like your surgeon is a bit on the old school side of thinking. First, this is not a rare condition. Yes, a small percentage of people with hip problems have this issue. But any experience hip surgeon will know exactly how to deal with this.

Second, age is no longer a factor in having THR. Technology is on your side! Implants have evolved and are outlasting patients these days. Anyone who is telling you to wait is just not right. Sure you might need a revision in the future. But there really is no reason to wait for surgery.

What you need is a surgeon who deals with young patients with arthritis. I may be able to help you find someone. Can you tell me where in the UK you are located and hospitals are near to that location. If you can give me the name of the surgeon you saw that would also be helpful. We need to find you someone with no connection to your current surgeon.

PS - if you type acetabular protrusion into the Search function (top right of any page on the blue bar) you will get a list of many threads discussing this condition.
Jaycey thank you so so much for replying. Your message really means a lot and thank you for offering your help!!

I am in Staplehurst, just outside of Maidstone and Tunbridge Wells in the UK. I was seen at Tunbridge Wells Hospital, under the Maidstone and Tunbridge Wells NHS Trust. I was seen by Mohammed Shaeir who was a Senior Registrar in Trauma & Orthopaedics, under the Consultant Mr S Ahmed. The other consultant I saw when I visited in December over my knee (who says knee problems are connected to my hip problem) was Tanvir Akhtar, Specialty Doctor in Orthopaedics.

I've had no idea where to even look to find a doctor who would be best for me, so your help is so appreciated. All I think is how can I go on like this, he said to me to just keep going until the pain becomes unmanageable and to make sure we don't get to full protrusion. Honestly the thought of its is just horrible, the pain has increased a lot even in the last few months, I dread to think where I will be in 3 years time still waiting for surgery. I am missing out on my children's childhoods and struggling to involve myself in their lives and care, its just ridiculous. They probably are putting it off for money reasons as well!

I have searched the group, I didn't get a huge amount come up, about 6 threads but I will have another look :)

Thank you and look forward to your reply!
 
@moonie8404 Happy to help! The first thing you must remember is that you do have a choice as to area and surgeon. Your GP may not agree - most of them have forgotten about patient choice.

Two questions: Are you willing to travel? And are you in the position to see a surgeon for a consultation privately and then get on their NHS wait list?

If the answer to both my questions is yes, I can highly recommend Mr Helmut Zahn. He was my surgeon for my LTHR. He is a good listener and really cares about his patients. He has private practices in Canterbury and NHS practice in William Harvey Hospital, Ashford.

What I did with both my THRs was to schedule a private consultation with the consultant of choice. Then I got on the NHS wait list. Unfortunately NHS wait lists for any "elective" surgery are very long these days. But in your case you may be able to get in for surgery sooner due to your pain levels. I can confirm that Mr Zahn's main concern will be to get your quality of life back. My hip had collapsed when I first saw him. His compassion was amazing.

One of our members currently in recovery has taken the private route with Mr Zahn. He had a complex issue with his knee and has been posting some very positive progress. Here's a link to his recovery thread.
 
@Jaycey thank you for this, and yes I would be willing to travel 100%, Canterbury isn't that far really, only an hour down the road. I thankfully had a really good GP before we moved and she got me referred to St George's in London for my SRS surgery as there are only two real specialists in the UK at the moment who knows how to deal with it - I had surgery up there in December so i'm willing to do whatever it takes to get some of my life back!

I would consider private, though really does depend on the ££, I will google him now and have a look. I'll also check out the recovery thread you have posted about.

My real concern with my trust is the consultants do not seem to really give me clear answers as well as mixed messages with x ray results which really concerns me! The fact they want to put it off as long as possible considering the increasing pain i'm getting , how much pain do they really want me in!? With a young family it really isn't do-able :(

I hope you don't mind me bothering you should I have any questions?

Can I ask how old were you when you had your surgery? How life changing was it?!
 
@moonie8404 Happy to help! The first thing you must remember is that you do have a choice as to area and surgeon. Your GP may not agree - most of them have forgotten about patient choice.

Two questions: Are you willing to travel? And are you in the position to see a surgeon for a consultation privately and then get on their NHS wait list?

If the answer to both my questions is yes, I can highly recommend Mr Helmut Zahn. He was my surgeon for my LTHR. He is a good listener and really cares about his patients. He has private practices in Canterbury and NHS practice in William Harvey Hospital, Ashford.

What I did with both my THRs was to schedule a private consultation with the consultant of choice. Then I got on the NHS wait list. Unfortunately NHS wait lists for any "elective" surgery are very long these days. But in your case you may be able to get in for surgery sooner due to your pain levels. I can confirm that Mr Zahn's main concern will be to get your quality of life back. My hip had collapsed when I first saw him. His compassion was amazing.

One of our members currently in recovery has taken the private route with Mr Zahn. He had a complex issue with his knee and has been posting some very positive progress.
one query Jaycey, in regards to a private appointment, would he want to do his own xrays and scans and have to pay for those? I only had mine done on the NHS back last year, wondering if he could refer to those in the appointment or if I would have to pay for those as well as the appointment privately? Do you know at all, you might not which is okay :) Thank you!
 
My real concern with my trust is the consultants do not seem to really give me clear answers as well as mixed messages with x ray results which really concerns me!
Well this is something Mr Zahn is very good about - making sure you understand the issues and working with you in planning the way forward. I was SO anxious when I found out my hip was gone. The minute I walked into the consultation with Mr Zahn I knew I could work with him. If you read the thread I gave you the link to, that member had the same experience.
I hope you don't mind me bothering you should I have any questions?
Of course not - that's what we are here for!
Can I ask how old were you when you had your surgery? How life changing was it?!
I'm an old lady compared to you. But I had my first THR at 58 years old. Mr Zahn said I was one of his younger patients.

I limped around for 3+ years as my bad hip was diagnosed as (yet another) issue with my spine. By the time I saw Zahn I could hardly walk. The first thing he did was send me to get crutches to help take the weight off that hip. He did use the x-ray my GP had ordered so I am sure he could access your diagnostics through the NHS archive system. I got my surgery date (NHS) the day of that consultation. Unfortunately it was a 6 month wait.

My surgery was definitely life changing. That first step putting weight on my new hip was amazing. No more grinding pain. The recovery was a bit longer for me due to waiting so long to get diagnosed. That's why I always urge our members to get things done as soon as possible. Trying to live with a painful hip impacts so many other areas of the body!

FYI - I just found my invoice for my consultation. I saw Zahn at Chaucer Hospital in Canterbury and it cost £150. Mine you, this was 13 years ago! I joined BoneSmart 2 days before the visit!
 
I had NHS X-rays done and then booked a private appointment. My consultant works privately and on the NHS and was able log in to see the X-rays. I think the consultation was £250, I then opted to have the operation done privately. The X-rays showed a big deterioration since the previous X-rays four years before and the hip was in danger of collapse. In the end, once I knew that I just wanted to get it over with. The operation cost £14,500 or thereabouts and seems to include post operative physio until I no longer need it and six sessions of hydrotherapy.
Now in my twelfth week and life is good (but not perfect yet)
 
My real concern with my trust is the consultants do not seem to really give me clear answers as well as mixed messages with x ray results which really concerns me!
Well this is something Mr Zahn is very good about - making sure you understand the issues and working with you in planning the way forward. I was SO anxious when I found out my hip was gone. The minute I walked into the consultation with Mr Zahn I knew I could work with him. If you read the thread I gave you the link to, that member had the same experience.
I hope you don't mind me bothering you should I have any questions?
Of course not - that's what we are here for!
Can I ask how old were you when you had your surgery? How life changing was it?!
I'm an old lady compared to you. But I had my first THR at 58 years old. Mr Zahn said I was one of his younger patients.

I limped around for 3+ years as my bad hip was diagnosed as (yet another) issue with my spine. By the time I saw Zahn I could hardly walk. The first thing he did was send me to get crutches to help take the weight off that hip. He did use the x-ray my GP had ordered so I am sure he could access your diagnostics through the NHS archive system. I got my surgery date (NHS) the day of that consultation. Unfortunately it was a 6 month wait.

My surgery was definitely life changing. That first step putting weight on my new hip was amazing. No more grinding pain. The recovery was a bit longer for me due to waiting so long to get diagnosed. That's why I always urge our members to get things done as soon as possible. Trying to live with a painful hip impacts so many other areas of the body!

FYI - I just found my invoice for my consultation. I saw Zahn at Chaucer Hospital in Canterbury and it cost £150. Mine you, this was 13 years ago! I joined BoneSmart 2 days before the visit!
Amazing thank you for this - i've looked online and its £200 and my parents have said they'll drive me over and look after my little one so going to try and book for the end of the month/beginning of April. Fingers crossed he will have access to my x rays. I have my pictures which I took but he can have access to my MRI (only my left hip) and x ray of both hips.

6 months although its a lifetime I don't think too bad, I was expecting a lot more which may be the case now, it wouldn't surprise me. You must feel like you have a second lease of life, i dream for the day of being able to move my hips and open my legs again!

I am not sure if you saw my x rays I attached to my original post? I know you aren't a specialist but can I ask what are your thoughts on them? I worry that i've been misdiagnosed with it although from looking at them and research on it, it does seem to correlate. are they really bad or have I caught it relatively early? I've had this hip pain ongoing for as long as I can remember but the last 3 years has got so bad - my right now is also really becoming apparent.

I did some PT physio yesterday at a gym which is a specialist one for those with disabilities - referred by the NHS albeit I have to pay monthly membership. I did the most basic exercises but I am in agony today - not sure its a good idea. She asked me to do the step machine, I did 33 steps but my god it was so painful. Think personally I should avoid these!

Thank you for your support and help, honestly you have no idea what it means, I feel like there is a light at the end of the tunnel instead of just darkness.
 
I had NHS X-rays done and then booked a private appointment. My consultant works privately and on the NHS and was able log in to see the X-rays. I think the consultation was £250, I then opted to have the operation done privately. The X-rays showed a big deterioration since the previous X-rays four years before and the hip was in danger of collapse. In the end, once I knew that I just wanted to get it over with. The operation cost £14,500 or thereabouts and seems to include post operative physio until I no longer need it and six sessions of hydrotherapy.
Now in my twelfth week and life is good (but not perfect yet)
this is amazing you must be so pleased with the outcome. How have you found recovery? unfortunately I wouldn't be able to afford private for one hip let alone two, so it will be NHS for me.
 
Fingers crossed he will have access to my x rays. I have my pictures which I took but he can have access to my MRI (only my left hip) and x ray of both hips.
Ask about this when you book your appointment. The NHS has a system that allows any consultant to access an x-ray stored using your NHS number. You may also be able to get copies on a memory stick from the department that took the images. There will be a small fee for this.

Mr Zahn will be able to tell you the wait times for both private and NHS. Unfortunately the wait times for NHS are now years! But this is very area dependent.
I am not sure if you saw my x rays I attached to my original post?
Yes I saw them and it does look like those hips need attention. I'm not a medical expert so can't really give you much information. Mr Zach will just need one look to give you advice. Do ask him to point out any areas of concern. Judging from the pain you are experiencing I really don't think you have been misdiagnosed.
I did some PT physio yesterday at a gym which is a specialist one for those with disabilities
I made the mistake of doing PT thinking it would help my hip. It did not - and in fact the extra activity made the situation unbearable. Please don't continue this now. Baby those hips. You don't want a collapse. Plenty of time for exercise after those hips are replaced.
 
@moonie8404
I wasn’t happy about going the private route but I would still be waiting for the consultation if I hadn’t and then another year or more after that for the operation. Luckily I had the money. I also discovered that you can take out a medical loan which I considered but didn’t follow up so I don’t know exactly how it works. It advertised itself as interest free but I don’t think it can be since they have to make money out of the lending. I’ve never known insurance to work in the borrower’s favour!
 
@moonie8404
I wasn’t happy about going the private route but I would still be waiting for the consultation if I hadn’t and then another year or more after that for the operation. Luckily I had the money. I also discovered that you can take out a medical loan which I considered but didn’t follow up so I don’t know exactly how it works. It advertised itself as interest free but I don’t think it can be since they have to make money out of the lending. I’ve never known insurance to work in the borrower’s favour!
I didn't know about medical loans. Probably APR on them are extortionate and I'm self employed too so would struggle to get much - I'm a transcriber and can only work minimal hours due to my AS/hips.

I'm hoping the private appointment will give me a clearer idea of what is going on and timescales.
 
Fingers crossed he will have access to my x rays. I have my pictures which I took but he can have access to my MRI (only my left hip) and x ray of both hips.
Ask about this when you book your appointment. The NHS has a system that allows any consultant to access an x-ray stored using your NHS number. You may also be able to get copies on a memory stick from the department that took the images. There will be a small fee for this.

Mr Zahn will be able to tell you the wait times for both private and NHS. Unfortunately the wait times for NHS are now years! But this is very area dependent.
I am not sure if you saw my x rays I attached to my original post?
Yes I saw them and it does look like those hips need attention. I'm not a medical expert so can't really give you much information. Mr Zach will just need one look to give you advice. Do ask him to point out any areas of concern. Judging from the pain you are experiencing I really don't think you have been misdiagnosed.
I did some PT physio yesterday at a gym which is a specialist one for those with disabilities
I made the mistake of doing PT thinking it would help my hip. It did not - and in fact the extra activity made the situation unbearable. Please don't continue this now. Baby those hips. You don't want a collapse. Plenty of time for exercise after those hips are replaced.

Thanks I'll definitely ask him a lot of questions and ideally feel totally in the dark about it all. Having an idea in my head when surgery would be probable would also put my mind in rest.

Today I hit Bluewater as had to shop with the kids for things. I took one of my crutches to help, it helps take the pressure off the left hip. Why people feel it necessary to stare at me I do not know.


Thank you Jaycey for also looking at my x rays. I look at them trying to understand where the problem is - my x ray wasn't explained to me at all. Is the left worst than the right or the other way round?! What exactly is bad in the x ray. I'm at a total loss when I look at it! I'm told I have deep set hips?
 
I took one of my crutches to help, it helps take the pressure off the left hip. Why people feel it necessary to stare at me I do not know.
I HATE this. It’s rampant when you go out and you have to assume people just don’t realize they’re staring. Once I had a man walk right up to me and say “what happened to you?” It was incredibly rude, but in a way it was a relief, because he was just saying what all the gawkers were thinking anyway :skep:
 
@moonie8404 - I’m not a doctor but I play one on TV when it comes to hip x-rays. ;) You have good spacing in your acetabulum … except where you don’t. Ideally, you see a crescent of dark space around your ball inside the hip joint. That shows healthy cartilage. But you have misshapen femoral heads which is “pinching” the joint causing the pain (you can see where the image goes from that dark spacing to none where the femoral ball juts out into the cup). It isn’t going to get better, so the only question is whether, at your age, you go with a full replacement, or just a “resurfacing“ where you preserve the neck of your femur, but lose the ball and get the traditional metal/plastic cup and a ceramic ball.
 
@moonie8404 - I’m not a doctor but I play one on TV when it comes to hip x-rays. ;) You have good spacing in your acetabulum … except where you don’t. Ideally, you see a crescent of dark space around your ball inside the hip joint. That shows healthy cartilage. But you have misshapen femoral heads which is “pinching” the joint causing the pain (you can see where the image goes from that dark spacing to none where the femoral ball juts out into the cup). It isn’t going to get better, so the only question is whether, at your age, you go with a full replacement, or just a “resurfacing“ where you preserve the neck of your femur, but lose the ball and get the traditional metal/plastic cup and a ceramic ball.
Wow that is interesting, I'm intruiged now as to what medical dramas you have starred in!! That is amazing what you have picked up just from doing that!

Thank you very much for this, I have looked at my x ray and I can see my femoral heads are all rather jaggard in places, I wonder what causes this to happen.

I have booked my appointment with Mr Zahn, I hope he can give me a real clear idea of what is going on and the way forward for me. I will just have to be patient throughout this process, its just so hard to be when you are thrown this information about your hip pain without really any guidance. I've had this pain for so long, I should really just learn to live with it but its just becoming very frustrating each day when you can feel it getting worse.

Thank you for your interesting reply!
 
Fingers crossed he will have access to my x rays. I have my pictures which I took but he can have access to my MRI (only my left hip) and x ray of both hips.
Ask about this when you book your appointment. The NHS has a system that allows any consultant to access an x-ray stored using your NHS number. You may also be able to get copies on a memory stick from the department that took the images. There will be a small fee for this.

Mr Zahn will be able to tell you the wait times for both private and NHS. Unfortunately the wait times for NHS are now years! But this is very area dependent.
I am not sure if you saw my x rays I attached to my original post?
Yes I saw them and it does look like those hips need attention. I'm not a medical expert so can't really give you much information. Mr Zach will just need one look to give you advice. Do ask him to point out any areas of concern. Judging from the pain you are experiencing I really don't think you have been misdiagnosed.
I did some PT physio yesterday at a gym which is a specialist one for those with disabilities
I made the mistake of doing PT thinking it would help my hip. It did not - and in fact the extra activity made the situation unbearable. Please don't continue this now. Baby those hips. You don't want a collapse. Plenty of time for exercise after those hips are replaced.
Jaycey just to say i've booked my appointment with Mr Zahn, 31 March so not too long a wait. I'm trying to find out from his secretary if I need to try and get my x-rays and MRIs or whether he can look at them - hopefully he can as I don't think I will get hold of them very easy and definitely not in 3 weeks!

Thank you for all your help so far.
 
Great that you are seeing Mr Zahn! Do try and speak to his medical secretary about the x-rays. I'm pretty sure he will be able to access them but it's best to know ahead of time.

Let us know how it goes!
 

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