Total reverse shoulder replacement Feb 2019

24

Comments

  • stickywicket
    stickywicket Member Posts: 27,687
    edited 30. Nov -1, 00:00
    I love the concept of being 'emotionally scarred by rehab' :lol:

    Yes, your husband will notice the state of the place eventually but mind you don't fall over all the stuff left where it dropped before that happens :wink:

    I'm currently nursing an upset stomach following a meal out. Yesterday morning I stayed in bed to compensate for lack of sleep. I got up to find the living room cleaned, tidied and dusted. Hm I might try that again :lol:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    I wasn't planning to post again until after the next physiotherapy appointment but it seems unbalanced just to report when things are going well. Inevitably there are less good times and I'm feeling a bit 'stuck' at the moment as I wait for the operated tissues to settle down enough for further progress.

    Sleep is slowly improving but I now wake with pain in both shoulders (the 'good' one was treated with keyhole surgery a few years ago so begins to object to taking on more than its fair share of 'work), reminding me that today is unlikely to be the day when I can do more than I achieved yesterday.

    I'm wary of going out alone as I'm having to politely fend off people who think that, because the sling has gone, I must be pain free and want to give me a reassuring pat on the shoulder or just stand close enough to brush against me. I'm more scared of falling than I have ever been and aware that my balance is altered by a minimally functioning arm.

    I always knew this would be a long road - measured in months rather than weeks - but after nearly five weeks of doing next to nothing I want to start making better headway and feel frustrated by the restrictions. It would be crass stupidity to risk what I hope will be a very good long-term outcome and I'm waiting for that day when I wake up feeling more confident and ready to 'crack on' with life.

    It will happen and I'll forget these short days of being tempted to curl myself up in front of whatever mindlessness emanates from the TV but, like everyone here, I'm no paragon but just an ordinary mortal, subject to ordinary feelings of personal inadequacy and intolerant of my own limitations.

    This is where it's extra good to be able to share the emotions that are hidden from those who, as DD often says, 'don't get it because they haven't got it' and who accept that even those of us who have 'had it' for many years are not immune to repeats of earlier wobbles!

    I have absolutely no regrets about having had this surgery and know I'll get there but I remain grateful for the thoughts of anyone who happens to read this and recall their own joint replacement journey. I guess that's what is so special about the 'pocket' strategy - it doesn't have to be spoken/written to make a difference. Thank you all - and special love to Migs.
  • stickywicket
    stickywicket Member Posts: 27,687
    edited 30. Nov -1, 00:00
    I totally agree that it's important to list the worse bits as well as the better ones but that can be very hard to do when one is hoping to document a success story. I think, however, in terms of encouraging others, the bad days /weeks are as important as the good ones because, without them, any future reader would believe it was only they that had them.

    I can well understand your fear of being 'abroad'. After all, the worry about being bumped into or just not given enough space is one reason (I read it fairly recently on here) why some find carrying a stick or using a rollator helps. I doubt it would in your case and it certainly wouldn't protect you from the well-meaning gentle touches of friends. I can only come up with the possibility of pouring fish oil over yourself. That should ensure you get a wide berth :wink:

    I do understand the post-op, or even just post-hospital difficulties, though. Last time (Just a week in ITU with a collapsed lung and 3 days of it with a tube down my throat) I felt quite wobbly in my own home on my return and worried about not sleeping bolt upright. After joint replacements I loved the long flatness of hospital corridors but the unevenness of ordinary streets was unnerving especially as I can't manage walking aids.

    I know you'll get there and I know you know you'll get there. These little hiccups will be lost in the grand order of things. Your annoyance and impatience at them is a good sign especially as you're highly unlikely to let those things govern your actions.

    P.S. I could walk in front of you with a red flag if you like :wink:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    Am on the up again after another encouraging physio appointment - at six weeks post-op. Range of movement is as good as can be expected and I can now begin gentle strengthening exercises.

    'My' therapist is a breath of fresh air who applauds what is achieved, reassures on progress and insists that exercises should be performed within pain limits rather than by predetermined frequency and number of repeats. ie stop when it hurts so it's well worth the hour's bus ride back to the hospital where I had the TRSR.

    The only available appointment for today was very early so I found myself catching a bus at 7.20am. I'm not a habitual daytime snoozer but was wiped out afterwards and had three hours of good sleep this afternoon, ready for an evening meeting that I'd like to attend. I've now also had two consecutive nights' sleep of six hours without waking, which is a big help and reminds me that it's nearly 18 months since I could rely on that.

    Great news too - I can try driving and see if the shoulder is up to operating the hand-brake - automatic gear change with standard parking brake. If not my husband is willing to consider an adaptation to push button parking brake control for which my DLA can pay. Will have a go this evening and am steeling myself to discover whether it's feasible or will have to be returned to the back burner for another couple of weeks. There is no way I would drive if I presented any risks to safety - my own or my passengers or other road users.

    The physio told me that I'll be with her for a long time so I know there will be more ups and downs in the months ahead and I will be progressing cautiously in the hope of being less 'flattened' by the slower bits since a lot of healing and recovery is going on unnoticed. When the exercises were too painful I still gained extra movement range.

    The more I learn, the more I realise just what an amazing procedure the TRSR is and the more I am thankful for the ingenuity of its inventers and developers.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh Crinkly, that all sounds amazing, especially the sleep bit. I haven't slept through the night for years and know I never will, I am now so used to functioning at dopey level I cannot imagine being alert. It's all coming together girl, isn't it? It takes years to reach the stage of needing this operation - recuperation is nowhere near as lengthy but probably seems like it when you're in the middle of it all! Keep up the excellent work, I am very impressed with how you have got to grips with it all and coped. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,687
    edited 30. Nov -1, 00:00
    Excellent news but I'm so pleased that you're documenting, for others, the long length of the recovery process even when one is doing everything right and sensibly.

    A good night's sleep helps so much with so many things, doesn't it?

    As someone whose life(style?) has been dependent on replaced joints for almost half my life :shock: , I too am so grateful for medical inventors and skilful surgeons (and helpful physios and kind nurses - I could go on and on).

    Re the handbrake - in my driving days I had a very simple pull on / push off handbrake which, because I used Motability cars which had to be changed every 3-4 years, was always quickly transferred from one to the next by a Motability-approved local man. That might be equally difficult for you but I thought it worth mentioning.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    Thank you for the parking brake suggestion SW. I had researched this and found that an electronic push-button system could be installed by a mechanic if needed.

    Happily I find our ordinary handbrake quite easy. Much more difficult is lifting my arm high enough to use the light and indicator switches so, for me a dashboard mounted parking brake button might actually not be an advantage. What a good thing I tried before jumping in and arranging the adaptation!

    This TRSR constantly surprises me as I find that its outcomes are completely different from those of my previous shoulder surgery and from reported outcomes of the standard TSR. Although prognosis for achievable range of movement is guarded I begin to suspect that it is dependent on the joint commitment of therapist and patient so could be revised over time.
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    A bit of a set-back in that, without thinking, I picked up a heavier shopping bag than I should have done, setting off increased pain in the operated shoulder as well as the OA in wrist and elbow.

    I can still do all my physio exercises fine so have taken a step backwards in the rehab process - avoiding the particular movement that hurts, back to no driving and using the sling again when the pain becomes intrusive. It's definitely improving slowly with rest so I hope it's just over-strained muscles that will have settled by the time I have my next physio appointment.

    Disappointing and a little worrying but the recovery programme is clearly very finely balanced so I need to be more cautious and must proceed extremely carefully with very small steps!
  • stickywicket
    stickywicket Member Posts: 27,687
    edited 30. Nov -1, 00:00
    There are always setbacks, as you yourself acknowledged afew posts back. It's doubly upsetting / irritating when one feels it's self-induced but none of us is perfect and these mistakes are only made possible by improvement. (It's not something you'd have done a few weeks back.)

    Go easy on yourself and keep plugging away. As you are very aware, it's a marathon not a sprint.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    Eight weeks on and today's physio appointment showed that my idea of 'taking it slowly' is not as slow as is needed and the shoulder is inflamed causing pain and some reduction in range of movement.

    Thankfully everything seems to be working as it should so it's back to the resting side of the drawing board for a while in the hope that it all settles quickly. If not I'll be directed to the hydrotherapy pool and will get there one way or another.

    I'd already abandoned attempts at driving but will have to cut back on a few other things for a week or two. No big deal and well worth doing as I'm told so on with the reading I have to do as part of my academic course now that a lively grandson has returned home after a long-weekend visit!
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    It seems that this thread continues to be read so I will keep posting while there is apparent interest in first-hand information.

    A further week of increased rest has made a significant difference and there is clear progress with less pain. So I shall stick to this frustratingly slow regime, use the sling when discomfort sets in and be thankful that all seems to be going in the right direction after an unecessarily worrying 3-4 weeks.

    Hope you enjoyed the Easter weather!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Much reading happens on here nowadays rather than posting but this thread is of great value, crinkly, so please carry on! I apologise for being AWOL in support, I've been poorly and occupied elsewhere.

    Recovery always takes far longer than we like or think it should. As we begin to both feel and see the post-op improvements our confidence grows and it becomes easier to forget it takes years to reach the pitch of surgical intervention as opposed to months to recover. I've mucked myself up over Easter by gardening. :roll: Of the two of us I am the only one who can see what needs to be done. :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    Surprisingly reassured by my physio today so feeling more upbeat! I'm at a typical 'plateau' when early healing has taken place but more time is needed to reach the next stage of rehab.

    One of the exercises was taken off my list as being more than the new shoulder is ready for and a referral for hydrotherapy made. There's a waiting list for the pool so I may not need it by the time I reach the top of the list but the opportunity will be there if pain is still limiting the range of movement.

    I drove myself to the appointment - first time driving without my OH in the car to take over if required so an achievement to add to the list of small improvements.

    For the rest I'm told there is no hurry so listen to my body, stay within the limits of pain and be patient for the next significant progress. After nearly 18 months of restriction it's frustrating but my physio was singing the praises of the reverse shoulder procedure and is very optimistic of a really good result given time.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    This is all good news, crinkly, I am so pleased for you. You had eighteen months of restrictions with things deteriorating, now it might be another eighteen months but with reducing restrictions and things improving which has to be the better option! I am not underestimating the demands being placed on you in terms of the discipline of recovery, the commitment to physiotherapy, the patience and how progress can seem either very slow or stalled but it is all going in the right direction and I am sure you will keep focused. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    Approaching twelve weeks post-op and a better week with some small indications of progress - putting on socks is easier and I find myself automatically reaching across the kitchen sink to turn on the tap. When pain is triggered, as with physio exercises, it subsides more quickly and maybe at last I'm accepting the true nature of 'slow recovery'.

    The early weeks were so promising that I've been close to being floored by the past month's sense of being stuck, even though I now know this is typical.

    Being a generally very positive character the emotional/psychological effects are something for which I had not fully prepared and I do have times of real frustration and paranoia that, after 18 months of incapacity, there could even be a second failed op. Fortunately I go to the hospital shoulder clinic on Monday when there should be a new x-ray to confirm that all is as it should be. If not I'll try to express my fears.

    Other than close family people generally imagine that I'm 'done and dusted' so I feel quite useless when I can't meet their expectations, making it really easy to stay home and quiet.

    Nor did I realise how long it would be before I was able to focus fully on tasks and I'm only just getting round to working on my MA dissertation. That was planned as the post-surgery distraction but it has been seriously side-lined until this week - causing more feelings of incompetence.

    Thankfully I have great home support and will be absolutely fine but thought it worth recording this aspect as being integral to the process of rehab - probably for every joint replacement, major trauma and, indeed, the everyday process of living with arthritis.
  • stickywicket
    stickywicket Member Posts: 27,687
    edited 30. Nov -1, 00:00
    Crinkly, I think your clear, detailed notes on your recovery plus the very honest details of your emotions about it will be of equal benefit to others. This is how long it takes for someone who is doing all the right things and this is how it feels. Well dóne and than you. Please keep going and, however slowly, I hope the trend continues upwards.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    The forum statistics suggest that this is still being read so my latest news is of a routine hospital appointment today - at 12 weeks post-op.

    X-rays showed the new joint to be firmly in place and the doctor I saw commented that 'it's early days' and 'needs longer to settle down'. After passively moving the shoulder he added that there is more range of movement to be gained so I'm to continue with physiotherapy and have a further check in four months' time.

    With so little detailed reporting of rehab from RTSR surgery it's hard to see where I shall be at any given future time but I guess the time taken for the body to become accustomed to implants is an individual matter.

    I'm less concerned about eventual range of movement than about pain control - which, after all, is the purpose of this operation. At present it's a case of pacing myself in order to keep the discomfort manageable while having faith that I'll eventually be able to say this is the best surgery I could have had!

    If the number of readers continues to rise I will post again when there is something significant to report in the hope that it's of use to others. I am heartened by my physiotherapist's enthusiasm for the reverse replacement which she considers to be a great improvement on former options.
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    Now three calendar months since the op and I seem to have turned a corner, which is great! Have been promoted to strengthening exercises and have a much improved range of movement. I'm booked in for a few hydrotherapy sessions beginning next week to hasten the strengthening process.

    My observant Physio noticed a 'pulling' of the skin at one point in the scar and advised gentle massage to deal with this as it indicates adhesions. These are caused by the fact that the scar of my previous operation was reused and dealing with it now won't affect the joint but will make mobilising easier.

    Lots of tasks are getting more comfortable and when pain is produced it quickly resolves when the action is stopped. So all going well!
  • stickywicket
    stickywicket Member Posts: 27,687
    edited 30. Nov -1, 00:00
    :D:D:D

    That's what I like to read :D

    Of course it won't be completely straightforward from now on. It never is. But this is a good bit and they must be acknowledged and profited from. Carry on carrying on, crinkly. I'm pleased it's looking good.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    Hello yet again!

    I'm just home from my first hydrotherapy session - aim is to increase range of movement alongside strengthening the shoulder, which has not been fully used for eighteen months so is ridiculously weak. In addition the reverse replacement procedure means that the deltoid muscle has to be re-educated to lift the arm.

    It was bliss! Really warm water, lovely Physiotherapist and I quickly discovered that I had a much greater range of movement in water than when I was supposedly rehabbing from the fracture repair. I made sure to take pain-relief before going so the joint ached but wasn't really painful; another tick for hydrotherapy.

    Being something of a 'water baby' I've been longing for the day when I'd get the go-ahead to work the shoulder this way and I'm delighted to have been given the green light to take out a sub to a local hotel leisure pool and continue the work between appointments. The local borough swimming pool is cold and always busy but the smaller hotel pool is warmer and quieter so I'll be picking my times and going for several sessions per week.

    So it's on to the next phase of recovery in a way that will be a pleasure combined with the more uncomfortable necessity of daily exercising with small weights.

    I know that I'm now firmly on the road to a good recovery and can say that, if all indicators suggest Total Reverse Shoulder Replacement to be the best option for you, it is well worth considering. When recovery is described as a 'long road' it is not to be underestimated though!

    At three months post-surgery I still need to pace myself and must rest the shoulder when it starts to 'complain' so I'll just post again when significant milestones are reached or if anyone asks a question on this forum thread.
  • crinkly1
    crinkly1 Member Posts: 156
    edited 12. Jun 2019, 10:44
    Not much change as progress continues, if slowly, greatly assisted by swimming. I'm now up to 30mins in the water on alternate days and about to increase again.

    Very disappointingly I missed my hydrotherapy session this morning as I got completely halted in a long traffic jam that, I now know, was still in situ three hours later. When I rang the hospital to explain I was given a 'final warning' that I will be discharged if I miss another session. I felt affronted by this treatment as I've worked so hard to improve things but there are necessary rules when services are strictly limited and waiting lists are long.

    There is no chance of changing appointment times and no alternative route to the hospital from the small town where I live. Traffic congestion is entirely unpredictable and the nearest station to the hospital is too far away for me to walk there. It has no disabled access so I can't take my power chair on the train and there's no taxi rank either when one gets to the top of the steep steps up to the road. Can see myself booking into a local hotel overnight in order to keep appointments!

    The admin staff have no idea how hard I'm working to get back a decent range of movement and, after the months of living with pain and incapacity I feel really vulnerable and dependent on the support offered. I can understand why, when some patients are casual about keeping appointments, we are all tarred with the same unreliable brush but this warning upset me.

    So it's on with the physio at home and living in hope that in the next two months I shall find myself pain free as predicted by one of the consultants. (I have never actually met the surgeon who did my op.)

    I can do an increasing range of tasks but am fairly sure that, in the long term, although I may just be able to hang out washing and reach some kitchen shelves etc, I will never be able to reach far behind my back eg to wear a back-fastening bra or lift/ carry any significant weight.

    It's going to be at least a year post-surgery before I will know for certain what permanent adjustments need to be made but the learning curve is under way and if I do become pain free I will be absolutely delighted!

    I hope my posts have been useful for others and I'll keep an eye on the forum in case there are questions or comments to which I may be able to respond. Other than that I will only post again if there is anything really significant to report as I suspect it will now be a case of continuing with exercises until I reach my own particular limits of range of movement and strength.
  • stickywicket
    stickywicket Member Posts: 27,687
    edited 30. Nov -1, 00:00
    Of course the warning upset you. I would be both upset and furious. A one-size-fits-all policy is not good enough even for such a coveted treatment and many people's casual attitudes to appointments. I think I'd make a formal complaint. The only extenuating circumstances I can envisage is if you were warned at the onset that it's a 'one strike (of any kind) and you're out' treatment.

    Anyway, you're ploughing on and making the shoulder work.I can assure you that bra fastening, of any ilk, is grossly overrated. I gave up on bras years ago. Great news that you'll be able to hang out the washing, though :? :lol:

    I guess it's not perfect and never will be but, overall, much better than previously and that has to be a good thing. Thanks for all the documentation. Others will benefit.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    Thanks, SW, I was pretty fed up at the time. I duly used a B&B very close to the hospital and made my position known when I got to the hydro unit on Wednesday morning.

    The therapist was most understanding, especially as the work I've done since I last saw her is getting excellent results. She even said that, so long as I can get to the hospital at any time during her 2 hour placement there, she will see me! I will, though, do my best to be there at the 'proper' time but with less worry about possible traffic hold-ups. A much better outcome than lodging a complaint would have generated!

    At the start of the hydro session everything was carefully checked and passive manipulation did wonders for loosening up the shoulder. Half an hour of hard work in the hydro pool saw me leaving without any of the pain I'd normally anticipate after such a work-out and I remained almost pain free for the rest of the day. Also had a much increased range of movement. Amazing and I was very close to tears of relief!

    Most noticeable is how much stronger the shoulder is becoming. The first few 'swims' were really uncomfortable and left me with extremely sore muscles so I had to work through that 'phase' remembering how bad the muscle pain was when, as a PE student, I started a new term of intensive physical activity! I just had to forget the horrors of my first failed surgery, trust the surgeon's expertise and believe I could do no damage.

    So it will be back to the local pool today with more stretching, new exercises and proper swimming - plus a much lighter heart.

    Would love to hear whether others who were contemplating a RTSR have gone ahead. Now 4 months post-op I can truly recommend it.
  • stickywicket
    stickywicket Member Posts: 27,687
    edited 30. Nov -1, 00:00
    A good result both on the hydro and past 'misunderstanding. Well tackled :D

    I don't know how others progress after your op but you've certainly showed that it's essential to put in the hard graft and stick with it. I'm so pleased it's paid off.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Bumped up for lindalegs.
    Have you got the despatches? No, I always walk like this. Eddie Braben