Total reverse shoulder replacement Feb 2019

crinkly1

Just three weeks short of six months and I expect to be signed off by physio and consultant in September so this is 'the end of my shoulder story'.

All treatment has been NHS and I duly completed the hydrotherapy course which has worked wonders for improving strength.

My 'ordinary' physiotherapist's new assessment shows range of movement as 'good for the reverse procedure' with straight arm raised in front and to side nearly halfway between shoulder height and straight up. Almost no movement behind my back but that was expected. The Physio thinks I may be able to achieve a little more so has given me progressive home exercises with 0.5kg weight and will see me again in 6 weeks' time. She will then decide whether I've reached my limits.

I continue to swim twice weekly with slow but steady progress in terms of muscle strength although I'm unlikely to gain sufficient range of movement to swim back crawl or front crawl. (Will still work towards that, though, as a means of getting every extra millimetre possible!)

Am now pain-free a lot of the time but not when at the limits of movement range so I suspect that will be the case for a very long time and at least it acts as a reminder not to overdo it! Can't sleep on the operated side either.

There are some limitations that I now need to accept as my 'new normal' and these include having to adapt my wardrobe to garments that are easily put on and taken off. Rather than spend ages looking at things I may never be able to wear again I'm collecting up a bagful of clothes for the Refugee Aid box at my church since they may as well go to people who really need them.

Having been restricted by many years of Nodal OA it's not too difficult to make other adaptations around the house and, although I admit to a little sadness at the increased level of disability, I'm so grateful for the fact that I feel and am way better than for the year preceding the RTSR.

The next milestone will be a return to cycling, with my OH, on the level trails in our area - when I feel sufficiently confident to try it.

It has been a demanding journey, not made easier by the effects of my other OA joints, in particular my neck area, and the challenges will continue - especially in remembering to take care of the implants, avoid lifting/carrying anything at all heavy and being prepared to give the shoulder a break when it starts complaining.

Where I would be without the surgery I dread to think and, noting
the steadily growing number of people who have read this thread, I just hope my reported experience has been useful.

stickywicket

Thanks again for this thread, crinkly, which I'm sure will continue to be of use to many people. I rather like this ending ie things are by no means perfect but much better. You have certainly put in the hours with physio and have earned your 'much better' status. Long may that continue.

lindalegs

Hello Crinkly1,

I'm LindaLegs and although not active on the forum, as in the past, I drop by in times of need or when I feel I have something useful to contribute.

This is a time of need as I'm seeing my surgeon this afternoon to discuss possible TSR for both my shoulders in the near future.

I want to thank you for posting this very informative thread as it has been a real help to me when compiling my list of questions for this afternoon's appointment.

If I have further questions following the appointment I will be in touch.

Thank you once again.
Love,

crinkly1

Hello Lindalegs. It's probably too late for you to see this ahead of your appointment but I will be thinking of you and hope you get positive answers to your questions

I'm delighted that my reporting has been helpful to someone and will keep an eye on the thread in case you (or anyone else) comes back with a query.

SW is absolutely right - at present the outcome is not perfect but is lots better than before the op. There are still challenges but usually a simple solution eg I'm about to invest in a trolley to transport crockery etc from dining table to dishwasher.

I'm also having a 'take it easy' few days as I've been overenthusiastic and ended up with a sore operated shoulder and a pulled muscle in the 'good' one - a timely reminder to be careful.

There's a great online blog and book written by a lady who has had both shoulders replaced, added to by another in the same situation. (The first in her early 50s, the second around 70) Both had two standard replacements in fairly quick succession so that could be helpful for you. I'll look up the link and see if I can post it on here later today.

All the best - Crinkly

crinkly1

I have been thinking of you and hope to hear that your appointment went well and left you able to make the best decision for yourself.

I don't think these will work as links (I'm not very computer literate) but the blog I mentioned, written by Michelle Conroy, can be found via the arthritis research site cloudywithachanceofpain or <shoulderreplacementblog.wordpress.com> The book is available for Kindle.

It contains details about Michelle's two operations with lots of tips for coping with the surgery and its aftermath.

Just a note, though, that I've found some significant differences between the standard and reverse procedures so my recovery has been quite a bit different from Michelle's.

lindalegs

Hi Crinkly,

I'm just acknowledging your last two posts and will get back in a couple of days. I am shell shocked after the appointment and have to process the information. :shock: We also have my eldest grandson here for a sleepover so I'll respond properly when I've got my brain around what I've been told.

I shall definitely look at the links you've sent, thank you.

I think I'll feel better when I've slept on things!

Cheers for now.

Love,

lindalegs

Hello again, my brain has adjusted and I have a window to reply so here goes.

I expected just to see the surgeon and have to decide whether to risk my painting/writing arm or not, but my X-rays show I have no shoulders left as they've eroded away, the 'socket' part altogether and some of the 'ball' part at the top of my arm. Same for both arms, the right slightly worse, so this is a whole new ball game.

He told me surgery would be very complex and challenging and the fact I have to be awake creates another problem as there are only 3 anesthetists in the country who have the expertise to put a nerve block that close to my spine. He has worked on patients who are awake (normally you are given a general anesthetic) and has just returned from The States discussing this whole procedure.

I’m going for a CTC Scan next Tuesday (13th August) so that he can see my bone density, what exactly he has to work with and if he can help me at all. :shock:

Anyway looking on the bright side, at least my shoulders can’t dislocate as they are!

Love,

crinkly1

No wonder you needed time to get your head around the consultation! I'm so sorry your shoulders have deteriorated so much - it is indeed a new ball game especially given that you can't have a general anaesthetic.

For both my shoulder ops I had nerve block plus GA purely because the former alone can't always be accurately enough placed for the reverse procedure. The first time it didn't work for me at all; the second time it was a partial success but still not as effective as people report after the standard shoulder replacement.

The best thing is that you clearly have a consultant who is an expert and fully understands the problems. I do hope the CT scan enables him to have a better view of what he can do for you, with the backing of a top class anaesthetist.

I shall continue to think of you at this very anxious time and will be looking out for further news from you.

lindalegs

Hi Crinkly,

My surgeon suggested reverse shoulder replacements or a partial replacement, the former giving me the better, smoother mobility the latter so I’m painfree. After the CT Scan on Tuesday he will be able to see which might be the better procedure for him to carry out and for my welfare.

My shoulders have settled for now and I’m free of the awful pain of the winter months, not that I think the weather has anything to do with my pain. I am due to see him again in December and in the intervening months I shall learn as much as I can about TSRs so that I’m able to make an informed choice with his guidance.

My dilemma will be whether to have the surgery or not if the pain is still settled in 4 months time.

Love,

stickywicket

Legs, I'm fairly sure this will be irrelevant but, as you know, that never stops me :oops:

I have a THR which has wandered upwards and a TKR below it which has wandering sideways. (Make up your own jokes ) When I got the worst pain of my life back in October, from the THR, morphine didn't touch it. After two weeks in hospital while they tried to get a grip on it, I ended up on oxycodone plus amitriptylene (Sp?) which sorted the pain and rendered me comatose for much of the day. (Yup, the family really appreciated it )

My surgeon said sometimes it can simply be a bit of bone or cement that's broken off and lodged on a nerve and that sometimes it will move on or disintegrate. And it did. I came off the heavy duty meds last January and the hip's been fine since.

My situation is different in that he won't operate unless it becomes absolutely essential and, even then, would leave the top bit of the THR where it is and just stick another underneath. But, so far there's no pain at all.

I'm just wondering if you need to make a decision or if it could be postponed indefinitely as mine has been.

lindalegs

Hi SW and thanks for the info. On your behalf may I just say

OOOOUUUUUUCCCCCHHHHH!

I feel better for that.

What you went through is not irrelevant as I'm gathering as much information as I can during the 4 months till I see him again. Even then I'm exploring options and will only have the surgery if I think it's my best move. From what he said with the complexity of the operation he will not press me into having surgery he will just tell me what he can feasibly tackle.

The decision lies with me and Mr Legs will also have a lot of input as my carer. My dilemma is that my shoulder pain has settled, for now, but we with arthur know that it can change on a sixpence (showing my age there :shock: ). I don't want to face the pain of last winter if it can be avoided.

I don't know whether you get a better outcome if there isn't a flare in the joints in question or whether it's best to wait till the pain comes back, go on a list for months and live with the pain till the operation. The latter is a tall order and however short the list it will seem interminable.

There lies the rub.

Love,

crinkly1

As figures suggest this thread is still being visited I'll add the latest progress at seven months post op. -

Saw physiotherapist on 9th Sept., following a six weeks' gap, and was able to show significant further improvement in range of movement. I was told that I'll be kept on until I reach the point at which there is no further gain so I left with a big grin, a new set of seemingly impossible exercises and a further appointment in six weeks' time.

This week (on 18th Sept,) I had an appointment at the outpatients' clinic. I was seen by the senior physiotherapist for the shoulder team who was also pleased with the status quo and told me not to worry that progress seems slow because the operation is complex and, with the earlier fracture and loss of effective shoulder use for over 18 months, I have a lot of muscle to rebuild. Her passive test of range of movement showed there is still quite a bit more to be regained which was extremely encouraging. Apart from reaching behind my back it looks as though I will achieve considerably more than is average for the reverse replacement.

I asked this physio to pass on my thanks to the consultant who, because he fitted me into a gap in his schedule at short notice, I have not met.

I will be seen again by the shoulder team at a year post-op when there will be further x-rays etc. For now I shall continue to use the arm as normally as possible, do my physio exercises and swim twice weekly. I have just faced my fear of falling off and started cycling again - on a flat former rail track - with a rather wimpish four miles my furthest of three rides. (Hanging out washing gets easier with every wash!!!)

I'm not 'pain free' all the time but I just use Cocodamol before any specially demanding activity and at night. When the pain is triggered I don't take more pain relief but have a break, resting the arm, and find that it usually clears in 30-45mins.

There is certainly no quick fix with this surgery. it requires long-term commitment to recovery and a thick skin when people expect me to be fully recovered and able to lift, carry and reach out as far as I could ten years ago. That will never happen but I intend to get every extra millimetre of movement and every extra gram of strength possible.

All being well I will next post after my one year check.

lindalegs

Thank you for this update Crinkly1, I am following your progress avidly.

Well done to you for continuing to exercise enthusiastically to get the most from your new shoulder!
t69044
Love,

dreamdaisy

Bumped up for flyboy. DD


Thank you - Brynmor

crinkly1

Hello again.

I'm just dropping in to report on further significant progress. It's now nearly nine months since my replacement surgery and everything continues to improve very slowly.

This week I have managed to use my sewing machine to make new lounge curtains also started refreshing the emulsion on walls, so am safely using a step ladder. I'm also knitting squares for a Refugee Aid blanket - all things I could not have done even a couple of months ago. The shoulder gets quite sore but I take frequent breaks and changes of 'job'. I just love being able to do useful practical tasks again as the whole house needs attention after my two years of being incapacited.

I've seen the Physio again since my last post and she is still keeping me under 6 weekly review although warns that I'm getting near my limits and recovery of full range of movement will not happen. I accepted that from the beginning so that's fine by me and I've had a clear-out of summer clothing I haven't been able to put on or remove easily.

I still take pain relief at night (partly to deal with other OA joints) and tend to dream vividly when I roll onto the operated side, although it doesn't often wake me. The shoulder is stiff first thing but soon eases up as I get moving.

I do hope Lindalegs and others are coming closer to reaching a decision about their shoulder surgery. To delay would only have made things worse in my case so I'm glad I had it done and have better comfort and function than for the past two years. It's a long recovery road, though, and definitely not 'pain free by six months' as was indicated to me. 'Pain free at rest at six months' was probably what I should have been told and I can live with the rest!! I'm aware, however, that my 'normal expectation' may be
of being more physically active than the average for my age group.

Hope you have a positive experience, whatever your decision. Do post on the forum and let us know how you get on.

lindalegs

Hi Crinkly1,

Glad to see you're still making some progress and are happy with the results of your TSR.

I see my surgeon again at the beginning of December when Mr Legs will be with me so that we can all talk before deciding which way to go.

Your thread has helped me tremendously and continues to do so. I have talked at length with my friend who has a degree in physiotherapy and I have also seen my hand surgeon and have his opinion on my bone quality and quantity to add to the mix.

As yet, I am still undecided, as I need to talk to my shoulder surgeon again and to find out the results of my CT Scan. My shoulders remain quiet with limited movement and, at the moment, I can live with them if they stay like this. But as I'm a rheumatoid that's not guaranteed and should the pain return I'll be a mess again!

I really wish I had the use of a crystal ball but as I haven't I'm going to rely on my own findings, Mr Legs' opinion, your thread and my surgeon's experience to guide me to making the decision which, I hope, is the right one. I'll keep you posted.

Love,

[Deleted User]

Thinking of you and best wishes with whatever decision you take.

Do come back & let us know how you get on.

Brynmor
t69044

lindalegs

Thank you Brynmor and, yes, I will let you know what happens.

Love,

crinkly1

I have been thinking of you, Lindalegs, and wonder if you've had your appointment yet? If so I hope it enabled you to make a fully informed decision.

I've just come to the end of physio appointments, having achieved a good outcome so far. I was warned that I can't expect the same degree of movement and strength as with a conventional replacement since some of the muscles are compromised in the reverse procedure but improvement could continue for another year.

I'm not terribly impressed with the surgeon's forecast of 'painless' but, as the shoulder is perfectly comfortable when resting I guess that is the bit that counts! With varying degrees of discomfort I can do loads more than for the past two years, take very little extra pain relief and should see the consultant (or one of his team) in February - a year post-surgery.

I do hope your news is good, whatever options you have been offered and whatever choice you have made.

frogmorton

Yes Legs it would be interesting to know what you decided.

Crinkly it's good to hear how well you are doing too. As you know my youngest had (at 19) a new shoulder done the more conventional way as she will need many revisions over the years.

Pain free....not quite I don't think, but one of my other girls married this summer and I have a pic of all the bridesmaids being silly arms and bouquets overhead t69044

take care both

Toni xx

lindalegs

Hi Crinkly and Toni,

Thank you for your concern. My appointment has been deferred until 17th December (next Tuesday) and I shall post as soon afterwards as I'm able. I've not made a firm decision as yet but am swaying slightly towards not having it done at the moment. Listening to the results of my CT Scan and hearing what my surgeon has to say will help me and Mr Legs decide on Tuesday.

I'm sorry that you're not painfree Crinkly (which is interesting because my surgeon too said I will be) and Toni it looks like your daughter still gets uncomfortable times. This is all good to know for my melting pot!

I'll be in touch.
t79122

Love,

frogmorton

Ah thanks for the update Legs

Lucy does very well and has full mobility (she is very young though) rarely complains of pain.

If you see this today please call into the café there is news.

Toni xx

crinkly1

You will be in my thoughts on Tuesday, Ll, and I will look out for your post. If I don't respond it will be because I don't have internet access until the New Year as we plan to be soaking up the Winter heat in Dubai where our elder son and his tribe currently live and work.

Pain-free? I am not complaining as the shoulder is pain-free at rest; a big improvement on how things were in the year before RTR. Whether 'pain-free' will also apply during activity in future remains to be seen but there is steady improvement with increasingly quick recovery after using the arm. I live in hope and will ask when I have my one year hospital check in February.

lindalegs

Thanks Crinkly and noted re your forthcoming holiday! Have a super time and Christmas!

t79122
Love,

lindalegs

Hello to those who might be interested.

Mr Legs and I saw my shoulder surgeon this morning and, as promised, here follows the outcome of the appointment. I was vying on the side of not having my shoulders done as they are still settled at the moment but after a long consultation we are going ahead.

My shoulders are eroding all the time and at the moment they have enough bone to perform a total reverse shoulder replacement. If I leave it longer then I will lose more bone and only a partial replacement will be possible which won't help me as much as the total.

I'm on the list and the surgery will take place late February early March replacing my right shoulder first, as this is slightly worse than the left. Six months following this and assuming there will be no complications, they will replace my left.

I'm sure I shall start a progress thread nearer the time to help others who might be having to make similar decisions as Crinkly and I have.

I feel very positive and even excited in a weird way! :shock:

Happy Christmas all!
t79122

Love,