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

[niknak79]

Hi @Josephine ,
Thank you for your reply, my pain is at:
DR3F
CR1F
FR5B
AR4B
GR5B

Answering your questions:
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

Pain is between 3-5 most of the time, increasing at points to a 7. Mostly a dull ache, and very stiff (especially noticeable when standing after prolonged sitting). Sharper pain in right sacroiliac area but not constant. When lying down on my left (good side) pain increases in the groin- using a pillow between knees helps. When lying on right side I get sharp pain over the trochanter unless lying on something very soft or not directly on it.

2. what pain medications have you been prescribed, how much are you taking (in mg please) and how often?
Naproxen but have stopped taking it as does nothing for me. Codeine 8mg/500mg which I take two of when really bad and when I don't have to drive (I am very sensitive to codeine). Paracetamol also but not sure this seems to do anything. I am not taking this daily, only when pain gets bad/keeps me awake at night. I find heat and gentle stretches sometimes do more for the stiffness and I am reluctant to use painkillers (had a stomach ulcer in my 20s so NSAIDs not great, & need to be alert for job/kids etc. so codeine not great!). I have diazepam for the thoracic back pain when it gets really bad but have used this only three times in past two months when desperate at night. (sorry don't have dosage with me). It seems to help the hip a lot too but generally I feel so woozy I can't feel anything!

3. how often are you icing and for how long?
Only on my sacroiliac joint if really bad. (I'm afraid I hate the cold!!- much prefer heat!)

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?
Answering (4) & (5) together.
I sweep floors at home daily, hoover the whole house once a week (should do it more often!!), change all four beds once a week, do laundry etc. (one load a day), drive around 1.5-3 hours a day Monday-Fri (for work), with stints of up to 1.5hrs in one go, otherwise at a desk 7 hours of a day, but get up often (Mon-Fri), walk 20-40 mins most days, swim once a week (around 40 lengths, various strokes), cook/wash-up about 1hr a day, a bit more at weekends- my husband does a lot though of the cooking. I am not doing any formal P-T except a few upper back exercises occasionally when I remember or feel the need! (stretches).

I'm increasingly convinced all the sitting & driving is making me stiffen up more than anything else...
Thank you for your help.
BTW I have just made an appt with the GP at our practise who knows my history best- first available appt is 28th Jan!!!

 

[niknak79]

PS. @Josephine Should also add I now have noticeable atrophy of the right thigh (quads & gluts) so know I need to work on these somehow (on the converse my left thigh is getting bigger as it's doing all the work!)....

 

[Kelpie]

@niknak79 are you able to get an emergency appointment? I have exactly the same problems getting to see my GP. Last time it took a 7 minute phone call with reception and intervention by my husband before I was able to see my doctor when I needed to. It might be worth you having to see an unfamiliar doctor sooner if you're in so much pain? I know you're used to being sore but it really is an emergency! You don't need to discuss with reception, just tell them it's urgent. I really feel for you having to suffer like this when you've also a family to see to.

 

[Josephine]

Pain is between 3-5 most of the time, increasing at points to a 7. Mostly a dull ache, and very stiff (especially noticeable when standing after prolonged sitting).

At which point is this pain - I've numbered them in the chart above

Sharper pain in right sacroiliac area but not constant.

Have you ever seen a chiropractor? My feeling is that they are heaps better at treating these kinds of issues than physios or osteopaths. And I speak from personal experience!

When lying on right side I get sharp pain over the trochanter unless lying on something very soft or not directly on it.

Well that would confirm the TB diagnosis. Have you asked about a repeat cortisone injection? Has anyone said no?

When lying down on my left (good side) pain increases in the groin- using a pillow between knees helps.

It's a fact not often acknowledged by doctors but Piriformis syndrome very often goes in tandem with TB. Does anything in the article ring a bell?

Codeine 8mg/500mg which I take two of when really bad and when I don't have to drive (I am very sensitive to codeine).

Actually that's co-codamol and 8mg is an extremely tiny dose. How does your sensitivity manifest itself?

Paracetamol also but not sure this seems to do anything. I am not taking this daily, only when pain gets bad/keeps me awake at night.

With these kinds of things, it's often more effective to take them regularly for a while - 2 paracetamol 6hrly. Just when the pain is bad is not a good method of pain management. Read this Pain management: importance of managing pain and the pain chart

I find heat and gentle stretches sometimes do more for the stiffness and I am reluctant to use painkillers (had a stomach ulcer in my 20s so NSAIDs not great, & need to be alert for job/kids etc. so codeine not great!).

Oh then you really do need to avoid them. And I agree with you about the heat and stretches.

I have diazepam for the thoracic back pain when it gets really bad but have used this only three times in past two months when desperate at night. It seems to help the hip a lot too but generally I feel so woozy I can't feel anything!

Yes, diazepam does that.

Only on my sacroiliac joint if really bad. (I'm afraid I hate the cold!!- much prefer heat!)

That's what I think a chiropractor would help with. I know you stopped the osteopath because you could no longer afford it but truthfully, you'll get much quicker and more effective treatment from a chiro (not an osteopath) than a physio.

I sweep floors at home daily, hoover the whole house once a week (should do it more often!!), change all four beds once a week, do laundry etc. (one load a day), drive around 1.5-3 hours a day Mon-Fri (for work), with stints of up to 1.5hrs in one go, otherwise at a desk 7 hours of a day, but get up often (Mon-Fri), walk 20-40 mins most days, swim once a week (around 40 lengths, various strokes), cook/wash-up about 1hr a day, a bit more at weekends - my husband does a lot though of the cooking.
I'm increasingly convinced all the sitting & driving is making me stiffen up more than anything else.

That's a heavy day. Made me feel tired just reading it! What is your work and how many hours a week do you work?

I am not doing any formal PT except a few upper back exercises occasionally when I remember or feel the need! (stretches).

Glad to hear it!

 

[niknak79]

Hi @Josephine

Just a few answers to your questions- thank you for taking the time to get back to me:
1. At which point is this pain - I've numbered them in the chart above
(1) is about a 4 today, (2) is around a 5-7 when lying on that side, but currently when sitting is barely noticeable, (3) is the dull ache, more noticeable after standing for long or day after a lot of walking - around a 1-2 currently as I'm sitting at the moment, (4) varies a lot- can be quite sharp (up to 7) but sometimes almost negligible- again varies a lot each day. Currently around a 2.

2. RE sacroliliac - no I haven't yet seen a chiropractor in nearly a decade (last time during pregnancy) but will consider- is there a good association of chiropractors that I could use to locate one near me, as my old one was in Belfast and I now live near Coleraine?

3. RE TB- I haven't seen my ortho team since my first cortisone injection and not sure how to ask for a second as they are expecting to see me after the MRI scan which I'm still waiting on an appt for. I am seeing my GP on 28 Jan so will ask then and would definitely like to try another injection as soon as possible!

4. RE pain meds, I find codeine causes quite severe constipation even in low doses and makes me quite dizzy.

5. I work full-time (8 hour days) and sometimes longer hours when on fieldwork/travelling. Up to 70 hour weeks when working at sea. A lot of that is desk based except hiking up and down ship stairs (and of course wobbling about when walking on the ship!). Some of it involves standing for a couple of hours at a time.

6. Piriformis syndrome does ring some bells!- I do get a bit of "sciatica"-like pain which radiates to the front of my lower leg (often associated with slight numbness) and often get severe numbness in certain sitting positions in my lower leg & foot (though don't seem to get much pain getting up out of chairs/car etc.). Unfortunately I am not great at the "piriformis stretch" as movement very stiff in that hip so grasping knee and pulling it towards my chest not possible. Sounds like it would feel lovely & satisfying though!

My back is very bad today whereas my hip feels slightly better, sods law!- I will try taking pain meds more regularly today and work out a better regime.

I wish we could get chiropractic treatment on the NHS!!

Thank you for your help x

 

[Josephine]

(1) is about a 4 today
(2) is around a 5-7 when lying on that side, but currently when sitting is barely noticeable
(3) is the dull ache, more noticeable after standing for long or day after a lot of walking - around a 1-2 currently as I'm sitting at the moment
(4) varies a lot- can be quite sharp (up to 7) but sometimes almost negligible- again varies a lot each day. Currently around a 2.

okay - gotcha!

2. RE sacroliliac - no I haven't yet seen a chiropractor in nearly a decade (last time during pregnancy) but will consider- is there a good association of chiropractors that I could use to locate one near me, as my old one was in Belfast and I now live near Coleraine?

I have no idea, my dear. Don't know anything/one in N Ireland! I know a good one in Gateshead though!

3. RE TB- I haven't seen my ortho team since my first cortisone injection and not sure how to ask for a second as they are expecting to see me after the MRI scan which I'm still waiting on an appt for. I am seeing my GP on 28 Jan so will ask then and would definitely like to try another injection as soon as possible!

My GP did mine. Depends how confident they are about it though. Some, who maybe specialise in pregnancy, asthma, diabetes, etc., despite the fact they are supposed to be general practitioners!

6. Piriformis syndrome does ring some bells!- I do get a bit of "sciatica"-like pain which radiates to the front of my lower leg (often associated with slight numbness) and often get severe numbness in certain sitting positions in my lower leg & foot (though don't seem to get much pain getting up out of chairs/car etc.). Unfortunately I am not great at the "piriformis stretch" as movement very stiff in that hip so grasping knee and pulling it towards my chest not possible. Sounds like it would feel lovely & satisfying though!

You will be delighted to know that TB and piriformis often go hand in hand. I had both when I had the cortisone shot in the bursa and it cured both! Since then and talking about it to other practitioners/doctors, I've learned this is often the case. I wonder why doctors don't seem to know this!

4. RE pain meds, I find codeine causes quite severe constipation even in low doses and makes me quite dizzy.

It can do that. Have you ever tried paracetamol instead? But do take it 1,000mg (2 tablets) 4 times a day which is every 6 hours.

5. I work full-time (8 hour days) and sometimes longer hours when on fieldwork/travelling. Up to 70 hour weeks when working at sea. A lot of that is desk based except hiking up and down ship stairs (and of course wobbling about when walking on the ship!). Some of it involves standing for a couple of hours at a time.

Whatever is your job? Are you in the navy or on the oil rigs?
However, that kind of activity certainly can create your symptoms, especially the wobbling! It really is nothing to do with your new hip but it might be because of your surgery. Once you've had this kind of surgery, it's possible the area of the operation can then be over-sensitive to unnatural strains and stresses such as you've described. This is a conundrum you will find very hard to live with. It either might settle down on its own especially if you should ever change your job, or go into 'remission' every so often when you will be at risk of it having a flare up every once in a while. Lots of ifs, maybes and buts in there!

I wish we could get chiropractic treatment on the NHS!!

So do I. It's high on my daily prayer list!

 

[niknak79]

Hi again @Josephine, thank you once again for your response, sounds like I need to chase up getting another cortisone shot! I am a marine biologist, work in fisheries science so spend around 6 weeks a year on a ship (usually up to 10 days at a time) & the odd day here and there on smaller boats. So used to wobbling around!!

Yes what you say rings very true about the new hip not being the problem but possibly the vulnerability from the surgeries (soft tissue stuff) - I had 7 surgeries in total on that hip before the THR.

I will start taking paracetamol as you suggest as the pain is bad again today (bad night) and think I need to break the pain cycle with some help from meds. Will also look up local chiropractors. Thank you once again for your time in helping me x

 

[niknak79]

Hi everyone,

I have right THR that's now nearly a grand 26 years old! Had it done when I was aged 19, due to perthes disease & secondary osteoarthritis. I had a posterior full custom-made replacement, ceramic-plastic.
The plastic cup is now showing significant wear with osteolysis evident behind the cup, beginning to cause instability, & there's ongoing inflammation (plus left hip has some sign of osteoarthritis (it's had to work hard for a long time!)).

I've had 8 surgeries in total on my right hip, so lots of scar tissue, & my consultant wants to delay the revision surgery until my symptoms are 'really debilitating'- which I totally agree with. There's not much bone stock to work with & I know the surgery might be a bit complicated.

I go to the gym 2-3 times a week (strength training) and did a 10k open water swim this summer (swim now once-twice a week), but walking & stairs (& sitting) are getting pretty painful most days, & I get horrible joint stiffness. I felt I had to skip the gym tonight as pain is bad after 2x 15 min brisk walks from train station to work. I take paracetamol & ibuprofen when flared up.

My question is, how long to wait for revision surgery? How bad should I let it get? My worry is that the pain is making me want to "protect" my joint, i.e. limp more, & I have to work hard now to keep muscle strength on that side.

Are there good exercises to try keeping mobile/strength up at this stage/during "the decline"? Should I persevere with the gym etc. even when pain flares up? I'm very aware of the importance of being in good condition pre any surgery.

All advice much appreciated!
Thank you

 

[Mr.fun]

I wouldn't wait another day. If It needs be revised why wait. Pain will only get worse and it will also play with your mental health as well. waiting will only put you closer to a wheel chair or even bed ridden. good luck

 

[mendogal]

Hi @niknak79 !

If you can provide at least the years of each R hip procedure, we can create a custom signature for you so members see it at a glance.

I had to make decisions about my knees. It really is a very individual matter.
Having seen a lot of folks defer hip or knee surgery, usually out of fear, until they were quite disabled with poor quality of life and with such muscle wasting and poor stamina they couldn't fully benefit from their new joints, I opted for knee replacements when I couldn't do activities I wanted to.

I applaud you asking about what we call "prehab" in order to be in the best shape possible. I can't address the hips knowledgeably. What I did was ask for a referall to a physio and specifically told the physio I want a very short exercise regimen to do at home that's knee friendly. It worked well.

If you are at the stage where you have joint pain but don't know for sure if you are ready to have surgery, these links may help:
Score Chart: How bad is my arthritic hip?
Choosing a surgeon and a prosthesis
BMI Calculator - What to do if your surgeon says you're too heavy for joint replacement surgery
Longevity of implants and revisions: How long will my new joint last?

If you are at the stage where you are planning to have surgery but are looking for information so you can be better prepared for what is to come, take a look at these links:

Recovery Aids: A comprehensive list for hospital and home​

Recliner Chairs: Things you need to know if buying one for your recovery​

Pre-Op Interviews: What's involved?​

And if you want to picture what your life might be like with a replaced hip, take a look at stories of amazing hip recoveries.

 

[niknak79]

Thank you @mendogal & @Mr.fun for your replies (& sorry I've been slow to respond, mad work week!)
My original hip consultant (who did my THR in 1998) retired last year & the new consultant has only met me the once (in June), but he watched me get out of my chair & immediately said until that looks to be a lot harder he would advise waiting. I have good days then bad days, trying to work out when the bad days outnumber the good, but apart from stiffness & pain I am pretty mobile (nowhere near needing a wheelchair, touch wood). But always stiff/losing range of movement. & I used to enjoy hiking which is definitely off the cards now (& going to anything that involves more than an hour of standing is bad too).

Thank you!

@mendogal here is my list of surgeries, not sure I have the technical terms correct as was a child for many of these:

1988 - right femoral osteotomy with hip spica plastercast (due to Perthes disease)
1989 - right fixator removal
1991 - right hip removal of bone/reshaping & growth plate loosening (lower leg)
1992 - right hip arthroscopy/investigation
1994 - right femoral osteotomy
1994 - right fixator removal (unplanned due to loosening)
1998 - right total hip replacement (custom made)
2002 - left knee cartilage tidy!
2018 - right hip scar resection/scar tissue removal, fat redistribution to reduce trochanteric bursitis

 

[Layla]

Thanks for providing the detailed history! That must have taken some time.
I am so sorry for all you've endured, niknak. You have a long history.
Given the choice, I feel I'd go through with the surgery now, rather than wait. We aren't promised tomorrow and you're as young and healthy as you may ever be, so consider undergoing the revision and get back to all you enjoy in life, without the pain.

Joint replacement surgery is one of the most prevalent surgeries performed worldwide. The outcomes of these surgeries have become excellent based on a number of techniques changing over the years. The implants are durable and long lasting, with longevity much greater than before offering an increase in the likelihood you’ll never have to experience this procedure again.

Best Wishes! Please keep us posted and know we're here for you always!
@niknak79