THR Beating the odds

[Tin Lizzie]

Hello everyone, I have been browsing the hip recovery forum pretty much daily since my right THR on July 17th and have found it so informative and uplifting reading about all you guys out there just getting on with it. My story is a wee bit different so I thought it could encourage others who might be in a similar position to me, if I told it.

The difference for me is that I have an inherited, progressive, neuromuscular condition called Charcot-Marie-Disease which causes muscle weakness in both lower and upper limbs, loss of mobility, balance problems and foot deformities.(Anyone interested can Google it and find more info). I had to leave work as a physiotherapist (yep, one of those, but not a scary one!) 13 years ago because of my balance and since then my mobility has got a lot worse.

My hip had osteoarthritis with all the usual problems, and I first saw an OS at the end of last year. He flatly refused to do any surgery because of my muscle weakness but did refer me to his colleague who did revisions and more complicated work. When I saw him, he was so nice and agreed to do the surgery but pointed out that he would like to put a locking ring in the acetabulum to help avoid the dreaded dislocation, which for me was a big risk because of my weak muscles. This would limit my movement a bit but he thought it was necessary. I would also have a longer recovery period because of my condition. So, we agreed to go ahead with the surgery and all went well. I had a cemented metal stem and head with a plastic acetabulum,spent a week in hospital and came home with a Zimmer which I was to use for 4 weeks, then go to elbow crutches and then progress as I felt able.

The first couple of weeks were tough and it took 3 hours to get me showered and dressed the first day home! But my husband and I soon worked out a routine and when I went back to see the surgeon, at 7 weeks, he was so pleased with my progress that I don't have to go back for a year. Of course, being a Physio, there was a certain obligation on me to do my exercises and I have been very dutiful with these and am still carrying on with them. Not too much, not too little!! My ability to walk any distance is still poor, but that was the case beforehand so I didn't expect any miracles. But most of the joint pain has gone and in general, I only have discomfort when I make an awkward movement or stretch too much.

However, I still can't sleep on either side because of pain, so am condemned to a bit longer of sleeping on my back but I'm hoping that might resolve soon. I do still have swelling of my right leg and foot but, in general, I am mostly independent and managing most of what I did before.

Just as a footnote, I thought you all might enjoy hearing that even those of us who should know what they are doing can be totally daft! Up until yesterday I was fine, then spent yesterday afternoon trying to keep a wood stove fed, which involved much bending and twisting and lifting of logs. Normally my husband does all this but he was out and I wanted to keep the fire going. The result - a painful night and sore and stiff today in both hip and knee. I've spent the day resting and hope I haven't done any damage.

For anyone out there with any similar problems, I hope this has been helpful. I gather now that the surgeon and my GP weren't hugely hopeful for a successful recovery for me but I want to prove them wrong and, barring any more risky moves on my part, let's hope that's the case.

 

[Josephine]

Well, hello, Tin Lizzie from Perthshire! Welcome to BoneSmart. I know quite a bit about CMT as my brother-in-law has it. He's 84 now and just had to go into care as my 80yr old sister cannot care for him any more. But he's been very pragmatic about it, bless him.

Of course, being a Physio, there was a certain obligation on me to do my exercises and I have been very dutiful with these and am still carrying on with them.

I had to chuckle when you said that - aren't we all the same under the skin! But unless you know better for some other reason, do remember that hips actually don't need much exercise to get better. They do a pretty good job of it all on their own if given half a chance. Trouble is, people don't give them a chance and end up with all sorts of aches and pains and sore spots. All they need is the best therapy which is walking and even then not to excess.

Still you're 3½ months out now so should really be forgetting all about them now and just get on with your life. You should soon be moving into the 'forgotten hip' stage! My sister had her hip done 4 years ago and did hardly any (as I did with my knee!) and she's really good now - quite nimble for an 80yr old!

 

[Tin Lizzie]

Hi Josephine,
Thanks for your reply and your welcome to Bonesmart. I am so pleased to hear you know about CMT as mostly there are blank looks when I say what's wrong with me, so I usually just fudge the issue and say I have a neurological condition. There isn't much In the way of support for us CMTers in Scotland but I am fortunate in having a good friend nearby who has the same condition, so we support one another. And I have a lovely neuro physio who sees me if I have any problems.

My hip survived the wood stove incident but I have learned my lesson and will let my body tell me how to progress! The surgeon said I should be reasonably ok as far as dislocation is concerned, except if I fell down the stairs(!) but I am very careful about the falling risks. I had been falling regularly before surgery so am pretty paranoid about it. As far as walking goes, I do my best, but anything longer than a short walk then I have to use my wheelchair, so that's the reason I have continued with my exercise programme.

Love the Bonesmart site and have recommended it to any friends who are considering or have had surgery! It has been an enormous support for me.

 

[hopefulm]

Greetings, @Tin Lizzie. My family has CMT in the genes - 3 of my brothers are affected with varying degrees of foot drop, muscle atrophy, and balance issues. My mother & grandmother were both affected. I am fortunate to apparently have more of my dad's genetic makeup, so I don't have any of the,symptoms.
Just wanted to offer my support, as I do understand some of the challenges you are facing. Sounds like you are doing great, both in your physical recovery and attitude!

 

[MajorHeidi]

Hi @Tin Lizzie , and welcome here!
I think you did a good thing by posting about CMT so others may benefit.
Glad you are coming along well, too!

 

[Poppet]

Welcome @Tin Lizzie - you are such a champion, I can imagine that CMT is not an easy condition to live with, pleased you and your friend have a strong network of support for each other. We are also here for you

 

[Hoppy Nanny]

Hi there @Tin Lizzie

Good post for anyone having to undergo THR with your CMT condition...great info sharing.....it seems you are doing well despite that condition....good for you.!!!

Don't think stoking the wood fire was a good idea......maybe leave that for the hubby in the future. Mind, we all try & overdo it...until we learn that lesson!!

Take care...Chrissie x


Sent from my iPad using BoneSmart Forum

 

[Tin Lizzie]

Hi to @Hoppy Nanny, @Poppet and @MajorHeidi and thanks for your encouragement. The CMT issue is a pain and I try not to define myself only by my condition. Mostly it works as my friends don't seem to notice it. I didn't want it to become the major issue in my recovery and, thankfully, it hasn't. I do feel there has been a bit of a dip in my physical abilities, but it's probably due to the general trauma of surgery and I'm hoping that will resolve.

I nearly did it again with the wood stove yesterday and was actually reaching out to open the door when the sensible me kicked in and I left it. If it goes out, so what! This stage, at nearly 4 months post op, is I imagine, quite tricky for everyone, as we feel much better and tend to try for things that are probably not wise yet as the healing is still going on. The Physio in me says I must try harder!!

Lovely autumn day here in Scotland - I live in the countryside and the colours are just past their best but still pretty.

 

[Poppet]

It is difficult to know where our boundaries are until we test them. Great that you have figured out where exactly that boundary is with your wood stove - good for you!

Maybe rethink the Physio in you suggesting you work harder - slow and steady is the best mantra with THR recovery.

I love the positive attitude regards not letting your CMT define you - life is for living

 

[Tin Lizzie]

Hi everyone,

I'm almost 5 months down the line after right THR and was doing ok in spite of having another, neurological condition complicating things. But in the last week or so I've started having pain again, mostly when I bend the hip or when straightening up from a bending position. Also there is a small clicking noise in the joint now when I bend and straighten. I'm aware that my hip flexors are a bit tight so have started to stretch them but this doesn't seem to be making a difference. I also have had to up my pain meds again to deal with this. Has anyone else had this experience? I'd be grateful for any advice. Thanks.

 

[Poppet]

Hi @Tin Lizzie - I am tagging @Josephine for her expert comments - sorry you are experiencing pain

 

[Josephine]

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

Plus I'm going to ask you some questions and it would be very helpful if you would answer each one 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 approach did you have for your surgery? Anterior, posterior, lateral? You can look here to see the various types THR approaches or incisions

2. 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

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

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

5. what kind of PT exercises and exercises at home are you doing? How much and how often? (and detailed details would be appreciated, please! **Reps, sets and sessions** and all that)

** If you're not familiar with this, it goes like so:
1 lift of your leg = 1 rep (repetition)
5 reps and then a brief rest = 1 set
5 sets and finishing = 1 session.

 

[Tin Lizzie]

Hi @Josephine. Thanks for replying to my query. I ' ll try to answer the questions as well as I can.

My pain is sited at CR2F, CR1F and sometimes between C and D R5. It is mostly when I am bending or straightening the hip - eg going down to tie my shoe laces and more especially when I am coming up from that position, but there is minimal pain on weight- bearing.

I had a posterolateral approach ( as far as I can gauge from diagrams ) and you might remember that my surgeon added a locking ring to the acetabulum because of my dislocation risks.


The pain level varies, but is around 3-4 and it doesn't bother me at night. I am still having to sleep on my back, as I can only lie on the operated side for about an hour max, and then I have a lot of discomfort in the joint, but on the other side I can manage 2 hours now. My incision line is still tender and sometimes itchy, as if it is still healing. The small clicking noise is new and happens when I flex and extend the hip and feels as though it is in the joint. I still have a bit of stiffness and aching, but no throbbing, stabbing or swelling. In fact the foot and leg swelling I had until recently is much better.

My medications are as follows - Omeprazole 20mg 1 or occasionally 2 daily
Co codamol 30/500mg 1 in morning, 1-2 mid afternoon and 2 at night. I take these on a regular basis for the neuropathic pain in my feet caused by the CMT and sometimes have had to increase these to help the pain in my hip, but not up to the maximum dose of 8 daily. I was on the max in the first few weeks but haven't been for a long time. I sometimes add a codeine phosphate tablet 30 mg to avoid taking too much paracetamol.

My activity level is almost back to normal for me, bearing in mind the limitations on my mobility with the CMT, but I manage most of the cooking, cleaning, laundry etc, but shopping is still being done in a wheelchair as I can't yet manage the walk round a supermarket. I could before the hip became really painful pre-op, so my mobility seems to have suffered somewhat post-op. My balance also is worse. I walk with one elbow crutch but only short distances, but this is mostly because my legs are affected with muscle weakness. Part of my CMT problem is fatigue,as I'm sure you know, so I do have to sit down a lot.

My exercises have declined as my normal activity level has risen, but I usually manage about 2 sessions per week. This consists of in standing - gentle squats holding on to a chair 2x10 reps, abduction 20 reps, flexion20 reps, and hip extension 20reps.sometimes using a green Theraband, most times not.
In lying - straight leg raises 10reps, but these are uncomfortable, so sometimes fewer. Hip and knee flexion raising my foot up off the bed at my limit of hip flexion 20 reps, abduction in side lying 20reps, clamshells 20 reps, and quads exercises with a pillow under my knee with a weight on my unaffected leg an no weight on the operated leg. I don't do all these in one session!

Hope this helps with any advice you might have for me. I have a suspicion that my fairly new ability to reach my feet might be behind all this, but I would value your opinion. Many thanks.

 

[Josephine]

The small clicking noise is new

This is of no consequence, don't worry about it unless it actually causes pain.

The pain level varies, but is around 3-4 and it doesn't bother me at night.

okay

Co-codamol 30/500mg 1 in morning, 1-2 mid afternoon and 2 at night. I take these on a regular basis for the neuropathic pain in my feet caused by the CMT and sometimes have had to increase these to help the pain in my hip, but not up to the maximum dose of 8 daily. I was on the max in the first few weeks but haven't been for a long time. I sometimes add a codeine phosphate tablet 30 mg to avoid taking too much paracetamol.

Gotcha

My activity level is almost back to normal for me, bearing in mind the limitations on my mobility with the CMT, but I manage most of the cooking, cleaning, laundry etc, but shopping is still being done in a wheelchair as I can't yet manage the walk round a supermarket. I could before the hip became really painful pre-op, so my mobility seems to have suffered somewhat post-op. My balance also is worse. I walk with one elbow crutch but only short distances, but this is mostly because my legs are affected with muscle weakness. Part of my CMT problem is fatigue,as I'm sure you know, so I do have to sit down a lot.

Okay

Your exercises - my comments in bold
have declined as my normal activity level has risen, but I usually manage about 2 sessions per week
gentle squats holding on to a chair 2x10 reps
abduction 20 reps
flexion 20 reps
hip extension 20reps - sometimes using a green Theraband, most times not.
straight leg raises 10reps but these are uncomfortable
Hip and knee flexion raising my foot up off the bed at my limit of hip flexion 20 reps
abduction in side lying 20reps
clamshells 20 reps
quads exercises with a pillow under my knee with a weight on my unaffected leg and no weight on the operated leg

I don't do all these in one session!

I'm very pleased to hear it! My question is, why are you doing them at all? You're 21 weeks post-op and should have forgotten about these ages ago. When were you planning to stop doing them? Ever?

These are ALL responsible for your pain. Truly! I am often saying this and will repeat it now - hips actually don't need much exercise to get better. They do a pretty good job of it all on their own if given half a chance. Trouble is, people don't give them a chance and end up with all sorts of aches and pains and sore spots. Just get on with your life, my dear, and forget you had a hip replacement. That's all you need to do.

 

[Tin Lizzie]

@Josephine. Thanks so much for your reassurance and advice. By coincidence I have had a bit less pain in the last couple of days, so you must have been sending me positive vibes! And I have been letting my husband help with the pulling on of my tight support socks for a bit, ( for my poor circulation), so that has helped too. My next challenge will be catering for the entire family who are coming to stay for several days at Christmas - I'm not too good at delegation but will have to learn some!

 

[Josephine]

You sure will!

 

[Tin Lizzie]

@Josephine HiJosephine, I'm in need of a bit more reassurance today. Yesterday I bent my hip to tie a shoelace and had a horrible grinding, tearing noise come from my hip, followed by quite severe pain. I rested all day yesterday, took extra pain meds and today not quite so bad. But I did call the orthopaedic nurse at the hopital where I had my THR ( 5 months ago) and her opinion was that I had been bending too much, too soon and this was a warning I should not ignore. If it gets worse I'm to go to A and E, but she is calling back on Monday. I've had quite a scare, as you can imagine and hope nothing is damaged. I thought it was ok to do my shoes if I could reach without too much effort, but I was told that I will need to be careful about bending now for ever. Any thoughts on all this?

 

[Josephine]

You know what - at 5 months and more, you should be starting to get more mobile and forget you ever had a hip replacement! That tearing, grinding and pain was probably a bit of old scar tissue that needed to 'go' anyway. Don't let it scare you - get on with life, girl! That's what you had to new hip for.

 

[Tin Lizzie]

@Josephine Thanks for that. I will try to forget about it but I will still be cautious from now on with the bending, as it hurts and now won't bend as far. If I get caught up in the festive maelstrom and forget, all the very best of luck with your upcoming TKR. A new knee for a new Year!

 

[Tin Lizzie]

I'm hoping someone out there can advise me. It is 9months since my THR and I am still having lots of problems. I was doing ok until December, albeit slowly because of my underlying neurological condition, when I bent to tie a shoelace and heard a grinding,tearing noise from my new hip. Quite severe pain followed so I rested and called the orthopaedic nurse. She felt I may have partially subluxed and arranged to see me after Christmas. I was advised to take it slowly, but with ten people staying for Christmas, it was not easy!

I saw the nurse and the senior Physio and they felt I had some sort of impingement syndrome. I had to still be careful and come back in a month. I was still having pain a month later so the nurse arranged for me to see the consultant. Not my own one, as he was off sick. After X-ray, everything looked stable but the consultant thought the locking ring around the new joint might be slightly displaced, possibly by the shoelace incident. He also thought I had Gluteus Medius inflammation so I was sent off to continue as before with some light exercise and walking. I can't walk very far because of my poor mobility, but have been doing my best.

Now, I have regular grinding noises from the hip and it is more painful than before I had the op. Apart from it being a fairly worrying situation, to say I am fed up with it all is an understatement. I now have a more painful hip and have the spectre of dislocation hanging over me and I still have to take pain meds.

If anyone has any advice for me, I would be very grateful, as I seem to be going backwards, not forwards. Thanks in advance.