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THR Advice desperately needed!

Blackbirdie

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Hi everyone.

I’m a healthy and active female in my mid thirties, other than having bi-lateral hip dysplasia. I noticed I was having knee pain and stiffness in my late twenties, and went to a consultant where I was diagnosed. Two years ago I saw a surgeon who explained that one hip was worse than the other and would likely need a replacement at some point, although he also felt it was better to leave it for a while as I had discomfort/stiffness rather than pain. He seemed unsure about how the other hip would do, as it was in substantially better condition.

In the past six months I’ve noticed the joint getting stiffer, I get groin pain on excessive movement (4 miles plus walking) and regular ‘twinges’ in my thigh and knee (and more recently a dull lower back pain). I have no rotation left in my bad leg (my other leg is doing well) and it makes me pretty tired. The worst my pain has ever been is maybe a 5, and I can knock it out quickly with 30mg cocodamol .

I went back and saw a different surgeon, he said there’d been a significant deterioration and literally signed me up for urgent hip replacement and pushed me out the door. I was in shock and barely said anything! He said he’d rather do it now before it got more complicated for him, which seemed an odd reason to press it all on me!

A few days later I was invited to a hip education class, and at that point I really started to feel concerned about his insistence. All the other lovely people in the room had severe OA or RA and kept saying that any change in pain would be a blessing post surgery. They all had walking aids and were bent double. All the pain experiences the nurses talked about had everyone nodding along except me! Now I am stiff, granted, but I’d never describe my pain as real pain, just annoying aches and twinges. I am completely mobile, I go to the gym three times a week (avoid impact work), I use a crutch only on long distances and take meds maybe once a fortnight when needed.

I have asked to see him again with my husband in tow and I’m awaiting a response. If he says no, then I know he isn’t the surgeon for me and I’ll go elsewhere. I want to know what the longer term prognosis is if I don’t have surgery this instant. I’m concerned that he automatically thinks this is the right option for me despite my lack of pain or real restriction, I accept I might need surgery at some point but would rather not ‘start the clock’ on potential revisions at 36!

All the information online seems to be targeted at patients with OA and RA (who I have nothing but respect for, you complete warriors!) and I’m struggling to find anyone in a similar position. Everyone I’ve spoke to seems to have been in agony pre surgery and medication dependent, so anything was a relief. I’m just stiff and restricted, and I’m horrified at the thought of ending up in a worse position that I already am...

Any advice or similar stories would be so, so appreciated.

Thank you (and apologies for the ramble!)
 

Jaycey

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@Blackbirdie Welcome to BoneSmart! We all experience pain differently. Some tolerate excessive pain while others just live with it. Without seeing an x-ray it is difficult to say how bad you hips are. However I can confirm that waiting can mean a more complicated recovery.

I waited over 3 years before getting a diagnosis on my left hip. The joint finally collapsed meaning I developed a horrid limp while waiting months for surgery. That recovery was long and very complicated. Old habits are hard to break.

When my right hip started complaining I ran to the surgeon and had it replaced as soon as I could. The pre-op pain was annoying but tolerable. But recovery from my RTHR was a matter of weeks.

Regarding revisions - technology is on your side. Years ago surgeons urged patients to wait as long as possible for THR. These days implants are lasting a lifetime.

I doubt you will "end up in a worse position". More likely you will get back to living an active life again once those hips are healed.
 
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Blackbirdie

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@Blackbirdie Welcome to BoneSmart! We all experience pain differently. Some tolerate excessive pain while others just live with it. Without seeing an x-ray it is difficult to say how bad you hips are. However I can confirm that waiting can mean a more complicated recovery.

I waited over 3 years before getting a diagnosis on my left hip. The joint finally collapsed meaning I developed a horrid limp while waiting months for surgery. That recovery was long and very complicated. Old habits are hard to break.

When my right hip started complaining I ran to the surgeon and had it replaced as soon as I could. The pre-op pain was annoying but tolerable. But recovery from my RTHR was a matter of weeks.

Regarding revisions - technology is on your side. Years ago surgeons urged patients to wait as long as possible for THR. These days implants are lasting a lifetime.

I doubt you will "end up in a worse position". More likely you will get back to living an active life again once those hips are healed.
Thank you Jaycey for replying so quickly.
I just feel horribly confused. He told me that I’m bone on bone (his words were “you’re rattling and bashing around in there” - the pelvis) but I genuinely don’t feel it - I wonder if I have nerve damage? Or maybe I don’t feel it as there’s no inflammation?
I’m dreading the post op pain, the recovery, and I’m in the horrors it’ll make it worse. Right now I have good muscle tone, my legs are the same length and I cope well - I just did a walking tour on my crutch and meds! So, the idea of making it worse is horrible. I have “some OA” although I’m unclear as to what this means. I don’t want to be in pain, disabled and with uneven legs, and there seems to be a ton online that says that THR aren’t so successful for HD patients. I also suffer with low mood, this has hit me horribly and I’ve struggled to eat, sleep and function ever since and have been very low and weepy, so the thought of panicking on the other side and feeling like I’ve made the wrong decision is overwhelming. I am definitely going back before committing to any action, I feel he unfairly rushed me as he was clearly busy (I had to wait 2.5 hours to be seen from my appointment time) and he seemed grumpy throughout, lots of tutting and telling me “you’re disabled anyway so the outcome doesn’t really matter” (I had my crutch with my for balance as it was frosty!)
It’s just hard to accept - I went to work before the appointment, drove there, went to the gym, drove back, went out for dinner afterwards. My life is hardly compromised!
 

Jaycey

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He told me that I’m bone on bone (his words were “you’re rattling and bashing around in there” - the pelvis) but I genuinely don’t feel it
If you are bone on bone believe me - it will only get worse. You may indeed not feel the grinding. I lived with it for over 3 years thinking I just had a bad back.
I’m dreading the post op pain, the recovery, and I’m in the horrors it’ll make it worse.
Unlike pre-op pain, post op pain is easily controlled. Post both my THRs I only took anti-inflammatory medication. Don't assume you will be immobile. You will be up and walking around on day 1. And since you are having bilateral replacement the leg length difference will not be an issue.
there seems to be a ton online that says that THR aren’t so successful for HD patients.
Are you referring to Huntington's Disease? This would be a very good issue to bring up with your surgeon. There is an issue with post op blues. But for most people it is very short lived.
I feel he unfairly rushed me as he was clearly busy
The key to all this is your relationship with your surgeon. If he is brushing you off and you are not comfortable with working with him - then yes, he isn't the one for you. But this doesn't mean there isn't a surgeon out there for you. How about getting a second opinion?
 
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Blackbirdie

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No sorry - I’m using HD for Hip Dysplasia. I’m not having bilateral, just on the right side for now as the left is doing ok. Both legs are the same now though, so I’m worried re potential shortness of the unoperated one.

I’m going to see how my second consultation with him goes. I’m taking backup!

I think the problem is that my pre op pain IS minimal and well controlled, so the thought of making it worse is horrible.
 

Mojo333

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I assume you are talking hip dysplasia for HD?
Many many folks here who have undergone replacement for this reason.
@djacksonsf is only one but is now recovering well.
Our own Forum Advisor @CricketHip
was diagnosed with hip dysplasia, if I'm not mistaken and has had both hips replaced.
 
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Blackbirdie

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Thank you everyone for your kind replies.

jaycey - was your op and recovery the standard? How did you find it? The ward nurse thought the weight bearing rules might be different for dysplasia patients?
 

Jaycey

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Recovery from my left was not standard because I limped around too long before the op. I had posterior approach and 6 weeks of the 90 degree restriction that really wasn't restrictive as my hip just didn't want to move that way. I never had any weight bearing restrictions from day 1. As you can see from my signature - that was almost 10 years ago.

Recovery from my right was totally different. Lateral approach, no restrictions at all. I was driving and back to working from home with a phased approach at 4 weeks out. Back in the office at 6 weeks out.
The ward nurse thought the weight bearing rules might be different for dysplasia patients?
I really can't see why this would be the case.
 
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Blackbirdie

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Thanks Jacey - I’m not sure which he’s looking at for me, he hasn’t said. Was the pain/restriction with your left? I hate to admit I am petrified of the pain and restrictions, to the point I feel ill. I’m sorry to be such a wimp.
 

lullingly

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Hi @Blackbirdie

I recently had a THR for hip dysplasia. I'm 35, and my hip was fine until only two years ago. I had some pain but nothing bad, I never took anything for it. After having two kids, though, I just couldn't walk anymore. But I still wasn't having much pain at all! Maybe because I'm used to it, and I've had this bum hip my whole life.

I am not sure because I don't have x-rays to prove it, but I think my hip deteriorated quite quickly. My leg length discrepancy went from maybe around 2 cm to 3.3 cm. My surgeon didn't think leaving things be would lead to things progressing, but I think he may have been wrong.

I think you should definitely get multiple second opinions! That sounds very scary to have the surgeon pressing THR on you.

Please let me know if you have any questions about recovery or anything else!
 

Jaycey

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You aren't a wimp! You are just trying to process and come to terms with facing major surgery. We were all in this space pre-op.

I really didn't have that much post op pain. Compared the pain of a collapsed hip, post op was great. I could move around more easily. No hip locking up or catching every step. No more planning every activity around bearing the pain. And you may indeed have no restrictions. Most surgeons are not imposing these anymore.

What hospital are you going to and who is your surgeon? I will do a bit of research and see if I can find out if the surgeon imposes restrictions. Did you happen to ask your surgeon how many THRs he performs per year? I can get this information for you as well.
 
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Blackbirdie

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Yes please Lull - would love to know all your experiences! I’m terrified and deeply confused right now!
 

lullingly

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@Blackbirdie

My recovery has been virtually pain free. I took the oxycodone they prescribed the first night, tried it during the next day and hated how I felt so I didn't take it again, and didn't need it. My pain was never over a 2, and often I had no pain. I took only the Tylenol and asprin prescribed to me, and I reduced my dose pretty quickly.

My surgery was long and complicated because both my acetabulum and the ball of my joint were a mess. I have 6 weeks of 30% weightbearing restrictions and then 6 more of 50%.

If I didn't have two kids, my recovery would be a breeze! I have to have someone with me all the time because I can't lift the one year old. It's very frustrating and I feel pretty cooped up (I'm almost 4 weeks out). It feels like a long time, and it goes slow because I'm just resting all the time, but taking it easy will pay off I'm sure.
 
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Blackbirdie

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Gosh you’re so brave. I’m worried I’m such a wimp that I’ll be in bits over any level of pain. I’ve no children, so perhaps having never given birth hasn’t given me any indicator of temporary pain! How are you coping with the cabin fever? Also dislocation is my greatest fear, like I’ll just make a movement forgetting how dangerous it is, and off we go...
 
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Blackbirdie

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Jaycey - yes please. Dr Steven Austin Jones at Llandough (South Wales).

I don’t think it’s helped me having a stomach virus since Thursday, being ill in bed and reading every horror story under the sun!
 
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Blackbirdie

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Jaycey sorry - Stephen, not Steven. Also I keep calling him a ‘Dr’ when he’s a ‘Mr’
 

lullingly

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Also dislocation is my greatest fear, like I’ll just make a movement forgetting how dangerous it is, and off we go...
I'm pretty nervous about dislocation, but it's getting better and better as I feel stronger. At first any wiggle of my leg felt scary. But after just 2 weeks I felt much stronger. Now I can turn over to sleep on my side (with a pillow between my legs!) and back again, no problem.

As for the cabin fever, if I didn't have kids I'd be binge watching shows and movies and time would be going fast! Right? I'm reading and knitting and listening to podcasts and audiobooks. Doing little things around the house... I'm pretty bored. Going on my phone way too much... reading too much about coronavirus... Haha.
 

Jaycey

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Unfortunately Mr Jones can opt out of having his statistics on the National Joint Registry and he has done that. In researching his experience he certainly has the level of experience I would want to see in a surgeon.

In my experience sometimes the high volume surgeons don't have the best "bedside manner". If that is important for you then perhaps you should get a second opinion.
 
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Blackbirdie

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Jaycey - that’s interesting - I looked online and 96% of UK surgeons opt in. I’m even more worried now that he’s hiding something!
 

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