Thanks for you advice, it is so helpful as I feel completely isolated with this and can't seem to get any sensible advice from anyone locally.
I do have a pre surgery check in ten days and I have been told that they will do the surgery by the end of March. I will certainly ask Mr Ashworth about the physio and perhaps arm myself with some information so that I can talk to a physio here before the surgery so that we are both geared up for it.
My back pain seems to be a mystery. Mr Ashworth certainly thought that it could be the FAI and that it could all be driven by my awkward gait because of the left hip. I have signs of FAI in my right hip on x-ray but the impingement test isn't positive although I do get groin pain sometimes. Whatever, the symptoms are completely different on the right side to the left. It is strange because I have had bad pain on the right side for years now but two years ago the left side overtook it in terms of the painful catching and groin pain.
If I tell you what the symptoms of the back pain are perhaps you (or anyone else) can tell me if it rings any bells (not looking for a diagnosis just reassurance):
!) At night I get lower back pain right across my back. This develops after a few hours sleep. Without painkillers I can sleep for around four hours, with 'night time' painkillers I can sleep for around six maximum. This could be the FAI on either side or a back problem. I have had this pain for over twenty years and despite keeping really fit the Physios could never understand why I had such a stiff back.
2) In the day if I stand for more than an hour or do any twisting or crouching down I get a terrible ache deep in my pelvis. It is really awful to the point of making me feel sick and unable to stand. This then settles into my right buttock making sitting difficult. Once this pain has occurred it takes around two weeks to go and so I now avoid standing, bending etc. I have found that using the crutches it takes a bit longer to develop. In saying this I think that a level of pain is now there all the time but masked by the Bu Trans patch. I removed it for 48 hours a few days ago as my short term memory wasn't as sharp as it should be and I just wanted to check it was the patch(!!), within 24 hours the deep ache was back and no painkiller I had would get rid of it - needless to say the patch went back on!!
3) For many years I have had a sharp pain in my right buttock which will suddenly come on when I turn and this will remain for around twenty minutes although sometimes has been longer. This has been diagnosed as sciatica but I am not so sure.
We run our own business which I set up around five years ago. It is an absolute passion of mine but one day last July I had to say to my husband as he escorted me in tears to the car that 'I don't think I can do this anymore'. This followed on from weeks of him having to get the car and take me home because of the pain. I have only been back for a few hours since. My GP has said that I may never find out the cause of the pain which frightens me.
I did have an MRI in July but never had formal results. The local surgeon saw the state I was in as I could barely walk but I have had no follow up at all despite requests. I am seeing Mr Ashworth about this as he is aware of the problem and I trust him to follow it up and get to the root of the problem. As I said to him though if they can't find the root of the problem and it is not the FAI I am going to have to make some major adjustments to my lifestyle and I just need to know this before I have the surgery and then find that I still have the problem in a year's time.
Sorry about the long post and I hope your recovery is going well. Using crutches is interesting - some people are so helpful and hold doors open or get out of the way, others completely ignore you and walk right in front of you so that you have to come to an abrupt halt sending you off balance. I am sure that your experiences are more extreme as you are so dependant on them. Do you think you will be going back to work in a few weeks time as planned?
We have to go to the NEC Spring Fair in a few weeks. We normally do this in two full days and this time last year I walked it for the two days, had the catching but managed to walk it. We went in September (Autumn Fair) but had to abandon it and come home. This year we are going armed with the wheelchair and have broken it into three short visits and are staying locally. Nice small hotel which will be good but expensive business these FAI's!!!!
Take care Janet - you can probably tell I have perked up today. I am normally the most positive person in the world but I think the isolation that the condition brings about must bring most people down. I am also a control freak, I am fine if I know what I am dealing with but the unknown......!!?
You do sound a bit brighter now - I hope you're still feeling a little better today. I really hope that the cause of your back pain will be discovered soon, and then at least some treatment for it may be available.
In terms of comparing our back pain, I can relate to the aching at night - it's as though it is telling me I've done too much in the day, or my posture was bad. I tend to get very localized pain on the left around my SI joint, and the physio said it was my L5/S1 facet joint. There is a really tender spot there. However, I know that I am 'wonky', with mild scoliosis, one leg shorter than the other, knock knees etc (good job I'm married, no-one would have me now!). You wouldn't know it to look at me, but they are just subtle imbalances that I've always attributed the pain to. And I have kept it under control to some extent by cycling, pilates and core stability. As I can't do those exercises at the moment, I am just putting up with it, in the hope that it will improve. I am going to ask Mr Ashworth about the sacrilization on my X-ray he mentionned before to see if that's the cause.
I'm afraid I haven't had the other pains you describe, so I don't know the possible cause, other than the FAI itself. It sounds awful though - you poor thing. I'm sure that you will have further tests for that following your appointment - well, I would insist on it!! It's gone on for far too long for you.
Is your pre-assessment actually at Torbay? If so, I could meet up with you there, if you'd like to ask me some more about the surgery etc. I work there so I could pop in to see my work colleagues too. However, I understand if you'd rather not - you'll have plenty of other things to concentrate on whilst you're there. Let me know.
I drove for the first time yesterday - yipee! Just for 10 minutes with hubby supervising, and it hurt a little, but no more than the usual anyway. So, that's another step in the right direction! I spoke to my boss today, and I'm all set for returning to work on 2nd Feb, just for 3 mornings a week for the first 2 weeks, and then we'll build up from there.
Well, this post is long enough! Keep in touch and take care (totally agree about the crutches experience by the way!)
Went to the hospital today for my pre-surgery assessment to be told after being sent to several different departments that the appointment had been cancelled as I had a March clinic appointment. Unfortunately nobody had told me. I strongly suspect that, as I am now listed as deferred because of my back/other hip issue, this means that surgery will be in May/June at the earliest.
Can't believe it.
It was lovely to meet up with Janet who is a lovely lady and she certainly had plenty of information to pass on - thanks Janet.
Sorry folks but I am thoroughly fed up.
Oh that is so annoying when they don't tell you it's cancelled!! So unprofessional of them too, so i'd complain. But thats not the point, it's having your light at the end of the tunnel took away from you!! and that can make many sufferers very depressed!! They don't realise that these hips rule our lives and need to be tended too asap. My healing thoughts are with you xoxox
So sorry Rayray, I can imagine how disappointed you must feel.
Have you spoken to your surgeons secretary to find out exactly what is going on? I really don't think they understand how we live for the next appointment or towards a provisional surgery date, with the hope that the next step will be the one that solves our problems. I find I can deal with the pain so much easier if I have a glimmer of hope that there is that light at the end of the tunnel.
I really do feel for you, and hope that this is just an administration glitch and doesn't mean that your surgery has been put back.
Thanks Kate and Kate,
We are on the case to try and sort this mess out. My local hospital has given me an appointment with a hip surgeon to try and sort out the necessary tests but he doesn't start work there until mid Feb. We are also trying to sort out an appointment in Torbay earlier than March so we will see which comes first. May try the private route although the tests will have to be on the NHS especially if it involves scans or other costly tests.
Very down and so frustrated about all this. Have awful back pain today and pain in my calf on the back pain side which scares me (not DVT had that checked out already). Have posted on the back forum to see if anyone has any ideas. I think if I had the hip pain alone I could just about cope but the back pain as well drives me to distraction. Lying down helps the hip but not the back etc. etc. etc. My Husband is also feeling very low and it was only this week I realised how this has really affected him. It is stupid things like going out for a meal which we both love - I have to think about what sort of chairs pubs and restaurants have otherwise it triggers really severe back pain. I sound (and look sometimes!) 103. My local consultant certainly said I walked like an old woman. Thanks very much I said. Wish they would just do something about it.
I hope your appointment went well Kate and Kate2 I hope that you get some other possible solutions soon.
Ray ray i have lower back pain which is caused by my left hip and the way i walk. One of the main reasons they want to do the THR is because you can replace those but i can't replace my back!! So to save my back i need to lengthen my leg to completely change my gait and release the pressure the spine is under all the time. Does this sound like yours?? I feel yours is far more severe as i used heaps of heat to relive the pain and lots of resting. Good luck with your doctor appointments and possible surgery date xx
Thanks. I am not sure where the back pain is coming from. I originally blamed the hip, my consultant said it could be but that there is a far greater chance that I have a back problem. I am just not sure what is causing it but what I am sure of is that I have to know if the back pain will resolve with the hip surgery or not. If not I am concerned about recovery from the hip surgery as I just can't stand or walk for long because of the back. This morning my standing limit was about a minute although other days it is up to an hour. Just feel I am going round in circles. I just wish hospitals and consultants could coordinate with each other and speak to each other rather than depending on snail mail - my local hospital now says that the last piece of correspondence they had has been lost - all this in the age of technology! Rant rant - G*d I sound like a nightmare.
Have just heard that my surgery is delayed indefinitely - I could cry!
Anyway I hope you have a great weekend and are not in too much pain.
I really cannot believe what has happened. I thought you were on your way to at least solving some of the problem, ie your left hip. I think at this point I would see Mr Ashworth privately for a consultation, but certainly then have all the tests, and eventually surgery, on the NHS. I sent you more details of this in an e-mail. It's so hard, as I'm sure everyone on this forum will agree, the pain and immobility becomes your whole focus in life, with not much else getting a look in. It's hard to stay positive sometimes, although in your case, you have every reason to be so upset and frustrated.
To both Kates, I hope you are feeling OK and are progressing with your appointments and decisions regarding future surgery. Hekate - although a THR sounds incredibly drastic, it does sound like your poor back would appreciate it! Quite a few sports people have had THR's under 40 too (cyclists and athletes). Oscarsmum - please let us know how your appointment went regarding your potential PAO. Hope it was productive.
Well, take care everyone and at least we can all continue to be supportive for each other. Rayray, you can rant as much as you need to on here!
I think hip and back pain go hand in hand, also weak glutes ( commom with hip problems) also contribute to back pain. I wake up with back pain everyday and also have it after sitting,but standing hurts the hip, in my case I definatley think the two are connected and hope that the next surgery will eventually solve them both.