Undiagnosed hip dysplasia, osteoarthritis and now probably asvasular necrosis...

[RokerFace]

I'm a 30-something mum of one.

Around 3 years ago my hip started to give way every so often. No pain though. I went to my GP who sent me for an x-ray which came back as mild osteoarthritis. Told by GP "just one of those things" and most people have a slight form of OA.

About 18 months ago I started to get terrible pain when standing up and sitting. Went back to GP who said I had bursitis and told me to take ibuprofen. Pain continued to worsen, put on dicofenlac but still didn't ease the pain. Referred to physio 4 months ago who had to stop the physical therapy as it was too painful. GP referred me for another x-ray in early Nov which showed that the OA has progressed to severe. Was referred to a consultant but then received a letter saying I would be seen instead by the Musculskeletal Clinic (MSK) instead.

At the MSK Clinic, I was advised by the Advanced Practitioner that I have congenital hip dysplasia which is so abnormal and severe that he was surprised it was missed during newborn screening and I hadn't suffered problems until now. He felt that my case needed to be referred to the Orthopaedic Consultant and I would receive an appointment in due course.

Just before Christmas I received a phone call from someone in the Consultant's team who explained that the Consultant has looked at my x-ray and case history and suspects that I have Avascular Necrosis (AVN). I am being referred for a MRI (18th Jan) to confirm the diagnosis and to check for the condition in my good hip as AVN doesn't show on x-ray. If I do have AVN, then it's too advanced for preventative treatment as the blood supply will have already collapsed and given that my arthritis is so severe, then I am definitely looking at a hip replacement. If I do have the early stages of AVN in my "good" hip then I've been told that there is an operation which can save the blood supply.

It's taken this probable diagnosis for my constant pain to be taken seriously and after trying several painkiller including tramadol I'm now on 2x60mg dihydrocoedeine x twice a day for a few days but that isn't touching the pain.

I can't sleep at night due to the constant pain and the worry. I can barely walk either. I feel so bad and guilty for DS who is only 5 and has to be careful how he cuddles me and how I can't do much with him anymore. I feel like a burden on DH (who has been so supportive). I feel like I'm falling to pieces and can't face waking up each day to deal with all this again and again and again. I just want to scream "why me?" (although I wouldn't wish this on my worst enemy). I don't feel strong enough at the moment to deal with everything. I think I'm in shock?

I hope no-one has or is suffering from this but I would welcome any advice; on dealing with the condition, questions to ask the consultant, about any of the operations. A bit of hand holding would be very much appreciated too.

Thank you if you managed to read this far!

[Robbabank]

You poor thing! I am so sorry. I was writing you a huge long message while bf-ing my baby and managed to delete it all! Blame phone. So I just wanted to say hang on in there. You WILL be ok. I also have CHD discovered late and am due for a hip replacement. And I look forward to the improved quality of life it will bring me. Try to hold on go that for tonight, and I will try to PM you in the morning with some ideas and some reassurances. I know it's a massive shock and the pain is horrific and you are probably feeling terribly down and depressed but things are in motion now and you will be helped through this. Try to sleep now if you can. Speak tmrw. Take care Roker.

[Robbabank]

*hold on TO that

[RokerFace]

Thank you for taking the time to reply Robbabank and for your supportive message. I don't think anyone can comprehend constant pain until they go through it themselves, I suppose it's a frightening concept.

I think I minimised it a lot to myself and so wasn't forthcoming with my GP about my problems. I remember my physio talking about the hip injection for pain relief (this turned out not to be an option), saying it can leave you out of action for a few days and I said that I can't afford to be, even for a few days when she gently reminded me that I already was . I thought if I could hobble about despite the pain then I couldn't be that bad.

I didn't sleep much last night (also due to a cuddly DS joining us in bed, but I didn't mind, it was nice to snuggle up!).

How did you discover your CHD? I see you said you will pm me so you can tell me your story then if you prefer.

Thank you again, really appreciate it...

[RokerFace]

Any other experiences?? Any one??

[TheWombat]

Yes, me! :)

I have no experience with AVN, but was diagnosed with quite severe hip dysplasia a few years ago. It got so bad I couldn't walk at all and I was in a wheelchair for a while. I managed to get a bit more mobile with the help of a lot (up to 6 hours a day) of physio, but I still use a stick / crutches to get around and a wheelchair for any distance. I know that it is devastating to lose your mobility like this and I too was misdiagnosed many times before a surgeon looked at my x-ray and pointed out that basically I don't have any hip sockets. The relationship I was in at the time of my diagnosis broke down soon afterwards. I can sympathise with all the things you said about not being able to cuddle / do anything active. I miss my mobility so much.

My hips dislocate several times a day but luckily DH is not squeamish and manages to help me relocate them. The pain is horrid, isn't it. Have you seen a proper pain consultant to help you get it under control? These days I get by on codeine but I have used tramadol etc too.

I recently had corrective surgery to create a hip socket on my right side, and it was fantastic. It was tough going but i already have more mobility. I wrote a blog about it (which I must update). If you like I can PM you the details.

Please get in touch if you'd like to know more or if you have any more questions. I emphatically recommend seeing a surgeon who deals with complex hip issues and is a dysplasia specialist. I can give you the name of my surgeon if you want. I would really recommend getting your x-rays sent to him for a second opinion (he does NHS and private). He is considered one of two first-class hip dysplasia experts in the UK.

[TheWombat]

One other important thing I should mention: you will feel better. That old MN adage 'this too will pass' is very appropriate here. The docs will find better ways to manage your pain, and there will be operations that can help you. Who knows, once we all have our new hips we might all be like bionic women!

(((Hugs)))

[Robbabank]

Hi again Rokerface - I'm very sorry, I had a very busy day with the children and the youngest wasn't sleeping so I had no time for the computer but I have written half an email to you and will write the other half and send it to you properly tomorrow.
I'm hoping to have some time in the morning while the eldest 2 are at nursery and school. I would second Wombat's advice in her last paragraph re seeking a 2nd opinion and finding a specialist - preferably someone who has plenty of experience of late diagnosis dysplasia and the extra complication of AVN. You may not feel up to considering this, but it is the 1st piece of advice I wanted to give you (I had a 2nd opinion and am much more confident in my surgeon and feel I am in very good hands.)
2nd thing is, as you've already noted in your 2nd post, don't downplay the pain you are in. As you've seen, when pain is ongoing, you can build up a tolerance to it and 'normalise' it, just to enable you to carry on with life. You must now make sure to vocalise everything about your condition to your medics - including any depression if that's what you are feeling. I can get very down and ratty some days when the pain is bad. It takes over and hovers just behind every action and every conversation and can end up making you feel very low. So don't ignore the psychological side of this, try to seek some advice for how to cope with the stress of the situation and the exhaustion you must be feeling.
If you don't have one already, and can afford it, I would recommend you get a cleaner in to help out around the house and ease some of the pressure on you. And accept any and all offers of help from friends and family. This will be sorted, but you need people to rally round for you and your family now and for the forseeable future while you work out a treatment plan for your hips. Has your GP advised whether you can benefit from any assistance at the moment? Help at home? Disability benefits? I have no idea really (we live abroad) but I would have thought you should be in receipt of some help given the severity of your condition and reduced mobility (Wombat may know more here). Even a temporary disabled parking badge (I know I would use one if I qualified for one).
Have you googled hip replacement for your comdition? There are many others experiencing similar to you and when I was doing my research I found lots of blogs written by people who have had single or double hip replacements. I remember one was a cyclist (triathlete possibly?) and she was an inspiration. It was very reassuring to read people's progression back to full health, mobility and fitness. The consensus seems to be that, daunting as it may seem, hip replacement is in fact an optimal solution and although it requires a dedicated recovery with properly managed physio etc, the benefit of a vastly improved quality of life far outweighs the risks and/or fear of such serious surgery. This is one of the most common orthopaedic operations and the technology and techniques are improving all the time so the lifespan of your prosthesis is longer now than it would have been 5 or 10 years ago. Have to sign off now, will finish my PM to you tomorrow. Take care.

[Robbabank]

Just another thought - have they given you a crutch to help support you when walking?

[Robbabank]

Hi there RokerFace, hope you are feeling ok today. I have sent you a PM.

[RokerFace]

Thank you Wombat for such a supportive message! MY hip with the dysplasia hardly has any of the joint in the socket so hard to see how that was missed on my previous x-ray.

I would really appreciate a PM with your blog details and your surgeon details, thank you.

I do have an elbow crutch from the pyhsio. I'm going to speak to my GP about getting a referral to the council for any adaptations they might be able to do on the house (getting into the bath is such an ordeal).

You both sound like you've dealt with a lot (even to the point you can offer support to strangers on MN). I'm going to try and take charge so will take some inspiration from you both, thank you :-)