Need revision, advised to wait for as long as I can.

[Josephine]

it was decided a THR was best option, which was performed as soon as I stopped growing aged 19

I must apologise for my previous posts - quite simply, I totally missed that you'd already had a hip replacement!

What you are describing appears to be symptomatic of sciatica and before you start worrying about your hip, I suggest you visit a chiropractor and see if that makes any difference. If not, see another hipman. I can suggest someone if you tell me where you are.

 

[medic4355]

@niknak79 First let me say that I enjoyed your story and it gives me quit a bit of hope that mine will last that long and even longer. My history is that I broke my hip in an accident along with 23 other bones. Originally it had a pin, screw and a plate in it and I was told for 5 years that I was "to young" for a hip replacement. Finally one day I had a great doctor that was about to retire tell me that there is NO medical definition for when someones hip needs replaced. He told me it boils down to how much more pain can you take. He declined to do the surgery but referred me to someone in Dallas,Texas USA that specialized in hip replacements in younger people and traumatic injuries to the hip. When I talked with him I explained that I had been on heavy pain meds for over 5 years and that now my hip was spontaneously dislocating at the most awkward times. His response was that building muscle could possibly help but if it had never calmed in 5 years past the point of pain meds then it was up to me. He would replace it whenever I wanted. We settled on 2 more months of a different type of therapy and then if that didn't work we would replace it. Well It was replace on New years eve 2013 and my recovery took me the better part of 18 months but lets remember I was recovering way more than just my hip. I still have some pains there at times and due to arthritis I take pain meds occasionally(maybe 1-2 times a week) but sometimes I go weeks without. I just want you to understand that it is easy for a doctor to dictate how long your hip "should" last because they are not the ones experiencing it. Finally before my accident I was a paramedic (I worked on an ambulance) for 19 years and I was awarded many awards for my patient care but never did I understand how important it was to empathize with my patients until I became one. There is a difference in sympathy and empathy. Sympathy is feeling sorry for someone. Empathy is imagining yourself in their shoes. Find a Dr that can empathize and your path will be made much easier.

 

[niknak79]

@Josephine - I will try a chiropractor but I didn't have a good experience with the last one I tried a few years ago and have since been to a private physiotherapist trained in manipulative therapy who has helped somewhat, but due to the cost of all this (we are a single income family at the moment with three children) I have not perhaps rushed back when I should have. What I definitely find is that the more sedentary I am (e.g. in the office) the worse everything is, with the exception of rushing up hills which definitely annoys the hip a bit (made worse if carrying a heavy bag). I know I walk in a "wonky" way, I have never fully got out of all the bad walking habits from when I had perthes as a child, and I know that stresses my good side/back etc etc. Just trying to keen pain at bay through movement more than meds as much a possible. I just feel like the hip is making everything worse at the moment. I now live in Northern Ireland so any recommendations on revision specialists always welcome, but I'm hoping to delay that for a good while if I can cope with pain for longer.

@medic4355 - wow what a story you've had! I really hope you are feeling much more mobile and pain is reduced now. I completely understand your point about defining when a hip needs replacing. I know my hip doc when I was a teenager felt we should last as long as we could before THR, but I was on a lot of pain meds, sleeping tablets, and couldn't put on my shoes properly etc. or do anything like dance (which is important as a teen) and the impact it all had on me was huge- especially as I'd had problems since I was 8 so was seriously fed up by 19. The custom made job they did for me has been amazing- exceeded expectations- but now I'm trying to see whether there is a decline that I can cope with for a good bit longer, or whether the decline means we need to look at revision. I am keen to put off revision for as long as possible, but as the stiffness and pain worsens other bits of me get worse too (like my back) so it's a trade off. And pain is so wearing. I also now have blood pressure probs which mean that some painkillers should be avoided but I also think being in pain makes BP worse! Sometimes I wish there was a clear sign that the joint has worn enough to need revision but I realise now that might not always be the case and it'll be as much to do with my tolerance. I am now in quite a sedentary job which definitely makes everything worse ironically- movement is my friend! Good luck with your hip- I hope it gives you many years as mine has

 

[medic4355]

@niknak79 The others are right you are definitely in your prime. I had my accident when I was 35 and was extremely active before my accident. I played basketball, football, & softball. I ran every morning and worked as a paramedic on an ambulance and for an oil company overseas. I can literally do none of that now but I have found comfort in the things I can do. I can only imagine what you went through in high school. With that said when I graduated I was 115 lbs and 5'10" tall now I am at the same height but I weigh about 180lbs. After my accident I shot up to over 200 literally bed bound and on pain meds which made me eat all of the time. I try to stay under 180 now because anytime I get over that it really effects my pain level. My point is that no one I know is the same size as they were at 19 especially after 3 children. Your body continues to change well into your 20's. I agree that movement helps me also. I can walk for extended periods of time but I can only stand still for about 10 minutes then I need to sit down. Sitting and not moving hurts me also unless I have my feet elevated and what job can I get in my recliner. LOL Either way humans have an amazing sense of survival and an ability to overcome so much. Thank you for your contribution to the forum and whether you realize it or not it will help someone.

 

[zauberflöte]

@niknak79 re BP pre op I'd been taking a middling dose of a bp med partly for slightly elevated bp and partly for cardiomyopathy. Immediately post op my BP dropped very far, and we got that under control by stopping the BP med and halving the heart med. 5-6 months later it had come back up enough to adjust dosages upwards again, but it has not yet gone up to where it was pre op. I'd been in constant pain for a few years due to this and that, and the only explanation any medical person gave beyond "don't know why" was that chronic pain can elevate the BP. Perhaps you would have the same effect if you had a revision. would be nice!!


My phone sent this using BoneSmart Forum, clever phone!

 

[Sullivand]

@niknak79
I have sympathy for your struggles and pain. My hip problems and finally a thr were a result of infection. It took me a year of pain, physical therapy , new shoes, new exercises and chiropractor help to realize something else was going on~ the pain would come and go! Finally I had blood work done and it showed my body was fighting infection. Steroids make infection worse! Could this be it for you too? I wish you the best.

 

[niknak79]

Hi all, just a quick update:
I finally got referred to the orthopaedic hip clinic (Musgrave Park hospital, Belfast) and was seen by a registrar yesterday. They x-rayed the RTHR and can see a little more wear of the plastic cup but not enough to need a revision (hoping to get a few more years out of it apparently). He diagnosed trochanteric bursitis and injected cortisone immediately, which has given me some relief and I was able to sleep on my right side for the first time in ages last night! However I also have groin pain and pain that radiates to my heel. After moving my legs about he concluded that I probably have some wear & tear in my lower back and has referred me for MRI and if needed then to a spine doc. My lower back & sacroliac area does indeed cause me quite a bit of pain and I can see how this will affect the sciatic nerve etc. Unfortunately pain management is a bit of an issue as I can't take NSAIDs due to blood pressure issues and stomach issues- I only take them very occasionally. He suggested using codeine at night as often the pain wakens me. I am really struggling with tying my shoelaces etc on my right side now and feel very stiff quite often, so keen to get something resolved/improved. I'm still only 36 and not ready to feel this stiff yet!! They also took bloods just to rule out infection but he thinks that is very unlikely.
I'm tagging @Josephine as I am totally new to any spinal investigations and would love any pointers about what "wear & tear" of the lower back could mean and any self management I can try?
Thank you for all those who read through all this!

 

[Jaycey]

@niknak79 so sorry you are suffering spinal issues. As a person who has suffered from "wear and tear" in my lower spine for years - my sympathies!

Have you had your MRI scan yet? That will tell us what your consultant is referring to in your lower back. There are many issues that can develop to cause narrowing of the spinal column and the resulting sciatic pain you are experiencing.

The first thing I would suggest is getting a referral to a physio who specialises in spinal therapy. They can help you develop core stability which (in many cases) eases the pain. They can also address issues like good posture, appropriate seating and bending and lifting methods.

I did try chiropractic but the movements were too aggressive for my back. I did have great success with an osteopath who unlocked my stiff sacroiliac joints and also performed acupuncture.

Finally I know many lower back patients find pilates very helpful. Pilates also build core stability.

 

[niknak79]

Thank you so much @Jaycey for your reply. I haven't yet had the MRI scan- this is what the hip doctor referred me for yesterday (as spines aren't his specialism and he felt that there is evidence of problems there in me over and above the hip issues), so I am really only at the beginning of this next journey! I haven't been referred for physiotherapy but I could ask my GP about this. I used to attend a private physio and should perhaps try this again (just cost makes it difficult). Interesting what you say about core stability- I used to do pilates but haven't been able to attend classes for quite a while (like over a year!!) so I really ought to prioritise getting back to it. My main exercise at the moment is walking the dogs and the occasional swim, but work has taken over my life recently so less opportunity for swimming or exercise classes (just about fit in late evening walks 4 days a week). So I imagine my core stability has definitely weakened, especially with so much sitting at the computer or driving. I must stop finding excuses and built good exercise back into my life properly! But the pain sometimes knocks me for six and makes me want to do nothing! Vicious circle!

 

[Midchild54]

@Jaycey what are pilates?

 

[Jaycey]

I used to attend a private physio and should perhaps try this again (just cost makes it difficult).

I can not tell you how much I spent on private physio! But if you can get referred to a spinal focused physio by your GP they do help. I had a set of core stability exercises I did daily. They did help - until my hip collapsed.

So I imagine my core stability has definitely weakened, especially with so much sitting at the computer or driving.

Sitting in front of a computer all the definitely does not help the spine. I am the first to say get up and walk around regularly and yet I don't heed my own recommendations. Do check into pilates again. If you can't get into a physio pilates may just give you the tools you need.

@Midchild54 pilates is a type of exercise that aims to strengthen the core muscles - those that help support your spine. Here's a link to an explanation.

 

[Josephine]

I used to attend a private physio and should perhaps try this again

Personally I wouldn't waste my money! Did you miss my suggestion here? Much more effective!

I suggest you visit a chiropractor

 

[niknak79]

Hi all, I am curious to hear of anyone else's experience with mid-high (thoracic) back pain in the years following a THR and whether this is a common issue and what others have found helps?
I have had a few bad episodes of thoracic spine pain which appears to be muscular at source (muscle going into spasm following possible overuse) and my doctor (GP) thinks is due to mild scoliosis (as seen on an x-ray) which has resulted from walking "wonky" much of my life making my spine move in a way it shouldn't (well, that's my oversimplified understanding of it!) . Unfortunately I still don't know the trigger- what sort of "overuse" sets it off- which is annoying, as it can be extremely painful and makes me want to freeze as movement can be agony. Diazepam seems to be the only medicine that works, along with repeated ice-heat etc. to try to ease the inflammation. Usually within a week or so it eases and I can go months between flare ups. I am keen to try to manage this better and prevent flare-ups so seeking any advice- I am currently trawling the internet for local chiropractors- though funding these sessions can be hard, and sometimes just the thought of anyone touching my back terrifies me when the pain is bad.
(NB. My THR is nearly 17 years old and this has only started happening in the past 5 years or so. I'm 36 and still pretty active (have three kids & two dogs to keep me busy!)).
Thanks.

 

[Josephine]

Hi niknak I'd very much doubt your issues are hip related and I am very glad you are looking for a chiropractor as I think that's what you need. You mention funding the sessions can be hard but mine only charges £30 a session. Don't be put off if he presents you with a treatment plan for the next year which is around £600 because you'll only pay per visit and won't need to sign an affidavit saying you commit to that much! And you only need to make appointments when you want to.

However, the belief that back pain only occurs now and then isn't entirely correct as what happens is that the pain just lessens and drops below your radar until something makes it worse and up it pops. So you've most likely had this for quite a long time in which case it would be illogical so expect a chiro to fix it in just a few sessions.

I know when I started, I had to go twice a week the first two weeks, once the next three weeks, then every 2 weeks. That lasted about 3 months in all after which is was down to me to go when I needed to. About 10 sessions in all and around £300. You'd pay more than that for a holiday!

 

[zauberflöte]

I had/have thoracic and cervical spine pain from overuse in flute playing. 25 years ago I had 12 weeks of the most wonderful PT I have ever ever had. She manually worked me over, taught me a whole new playing position, gave me about 10-12 home exercises, many of which I still do daily, because they WORK! And if I slack off, I know it's time to get with the program again.
That pain used to make me shoot out of bed in the middle of the night-- sounds like yours. I have such a high opinion of this PT (who was working on about 10 people in the symphony besides me at the time) that I recommend PT over anything else.


My phone sent this using BoneSmart Forum, clever phone!

 

[niknak79]

Hi all,

Just after some advice from any UK residents who know the wonders of our NHS system, as still struggling a bit & not sure what I can expedite if anything in terms of improving the situation!

My hip replacement is now the grand old age of 17 years. I am 36 and quite active with three kids. THR was posterior and is custom-made ceramic-plastic composite (uncemented). I now live a long way from the hospital/team which cared for me during the THR and am under a local team now who weren't involved in the original surgeries (I'm still in the UK though).

Since 2012 I have had increased hip stiffness and occasionally severe weakness, and the pain wakes me nightly (can't stay in one position for long) but I wouldn't class it as severe pain, more a bad ache. On X-ray there appears to be minimal wear of the joint so nowhere near revision hopefully, but I was diagnosed with bursitis in August, which was promptly injected and produced a little relief, which has now worn off.

I was also referred by the hip team in August for a lower back MRI which I am still on the waiting list for. I get both lumbar and thoracic back pain (not constantly though thankfully) and realise it is all likely connected but trying to find best methods to improve the situation.

I attended private physio and osteopathy for back and hip but can't afford to keep going - I am on a waiting list for NHS physio. The osteopath was surprised by how incredibly tight my right quads are and recommended regular deep massage but can't currently afford this. I do a mostly sedentary job but try to fidget regularly and walk for 20-40 mins most days and swim once or twice a week. I walk slightly slower than I used to and am careful on hilly terrain.

If I carry a heavy bag on my back (properly with two straps etc. like a backpack) I feel the consequences in my hip the next day (I get very stiff). I am trying to improve my posture etc. but not sure what more to do other than be patient and wait for the MRI, physio etc.

I was put on naproxen but not much effect - diclofenac seems to work better but I have blood pressure issues so told not to take it too often. I mostly use heat to ease the pain (and ice occasionally, but I have to admit to preferring the heat!).

Is there anything else I could look into?

Shortly before Christmas I called my GP surgery nearly in tears with the pain after a particularly bad night and was told they can see I've been referred for a lower back MRI scan so should be on the waiting list & just to be patient and self manage as best as possible. I hate making a fuss but am struggling on the bad days.

Any ideas would be really welcome, pointers for good exercises to help or anything - I realise there is unlikely to be a magic cure so self management ideas would be particularly welcome.

Many thanks

 

[Kelpie]

Hi Niknak, sorry to hear you're in so much pain. If it was me, I'd make an appointment to see your doctor (same day if you can get it) and ask him to review your pain meds. You should not have to put up with so much pain while waiting for investigation appointments.

I'm sure someone with more knowledge than I will be along soon to advise further.

 

[jasminesmom]

Jump up and down as loudly as you can and make a nuisance of yourself as often as possible. We have a truly fantastic health service but sometimes it takes lots of extra effort to be listened to. I'm sure the lovely professionals on here will be able to give you the perfect advice you need. X

 

[Jaycey]

and was told they can see I've been referred for a lower back MRI scan so should be on the waiting list & just to be patient and self manage as best as possible.

Let me guess - reception told you this? Not acceptable. Make an appointment with your GP and go get your meds reviewed. Naproxen is obviously not working for you.

I'll tag @Josephine to see if she has any recommendations on further treatment for bursitis.

 

[Josephine]

Before I can chime in I need to ask you a few questions if you don't mind.

First can you tell me the exact site of your pain using this chart?
Please note the instructions in the smaller image

Then if you would answer each one of these individually - numbered as I have done - in as much detail as you can then I'll come back as see where you are ....

1. what are your pain levels right now? (remember the 1-10 scale: 1 = no pain and 10 = the worst you can imagine. And don't compare this with the bone-on-bone pain you had before surgery! ) Also don't forget to include other forms of pain such as soreness, burning, stabbing, throbbing, aching, swelling and stiffness

2. what pain medications have you been prescribed, how much are you taking (in mg please) and how often?

3. how often are you icing and for how long?

4. what is your activity level? What do you do in the way of work, housework, cooking, cleaning, shopping, etc., and

5. are you doing any kind of PT and exercises at home? How much and how often?

Can you describe them like these examples ....

Exercises done at home: 3 sessions a day
Heel slides x10 (reps)
Straight leg raises x10
Steps x10

At PT
Squats x5 (reps) x2 (sets)
Wall slides x5 x2
Clamshells X5 x2