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UK NHS Frozen Shoulder Treatment Trial

Posted , 9 users are following.

richard43586
richard43586

Hi everyone.

I have had Frozen Shoulder in my right (dominant) side for about 4 months.  The pain is hopefully past the worst, but I am now at the frozen stage, with only 30% of so of normal range of movement. My GP referred me to the local NHS hospital, which, as it happens, is currently taking part in a clinical trial with other parts of the UK, the purpose of which is to determine the best treatment for FS, from the points of view of both the patient and the NHS.  Volunteers in the trial are randomly allocated one of 3 forms of treatment, all of which are currently being used in the NHS in the UK.  They are:

1.       Intensive physio and manipulation course for 12 weeks, with steroid injections for pain relief

2.      Manipulation Under Anesthetic, followed by physio and steroid injection

3.      Arthroscopic Capsular Release (keyhole surgery), followed by physio and pain relief

I signed up for the trial and the computer randomly allocated No.3 for me (the ACR).

They put me on the waiting list for day-surgery 3 weeks ago, and it is about 3 weeks to the operation, but I can drop out of the trial at any time if I want to.

I know I am lucky to be offered ACR on the NHS at comparatively short notice, but as the date approaches, I cannot help but feel apprehensive about this.  I have several questions in my mind:

Surgery seems a bit ‘last-resort’, and I have not yet tried any other treatment.

I am now relatively pain-free for 95% of the time (mostly dull aches and pains unless I jar the arm), my main problems being the loss of movement and being woken up once or twice a night.  Sounds like I am lucky compared to some people on this forum.   I am wondering whether it is worth going through the 2 to 3 weeks(?) of pain and discomfort following surgery.  Could it actually make things worse, even in the long term?  Is the follow-up physio going to be extra-painful because of the surgery?  On the other hand, if it does free up the range of movement within a few months, rather than possibly waiting years otherwise, maybe surgery would be best? 

Can anyone put my mind at rest regarding the post-operative pain in particular?  I am due to go on holiday about 3 weeks after the op.

I would also be interested to know whether anyone else here is on this NHS trial.

1 like, 37 replies

37 Replies

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  • pollmadoll64
    pollmadoll64 richard43586

    Posted

    I had anthroscopic surgery after putting up with frozen shoulder for four years , I then tore a tendon. I am now nearly a year on and it has improved enormously but due to Fibromyalgia and the hell I went through with the DWP I am only 80% better. Desperate to return to work
    • richard43586
      richard43586 pollmadoll64

      Posted

      Thanks for your reply.  Glad you have improved.  At least I am retired, so not missing work!  However, I used to do some voluntary work, which I have had to put on hold.  It would be nice to get  back to that.  Excuse my ignorance, but what is DWP?
  • slibby
    slibby richard43586

    Posted

    I am in Canada and to see an orthopaedic surgeon is over a year wait. I saw a sports medicine doctor today who is also an ortho surgeon. I am 19 months into FS on the left which just last month went into the frozen stage, and month 5 of the right shoulder in th freezing stage. He told me that in Canada,  most surgeons won't touch FS anymore as the outcomes at 2 and 5 years are no defferent had they done nothing. I was quite discouraged as 2 or 5 years seems like a life time and I'd roll the dice right now for capsular realease surgery. But sadly, no go. Not that this helps you Richard, but food for thought if Canada doesn't do the surgery. 

    • richard43586
      richard43586 slibby

      Posted

      Thanks for your reply.  Interesting that Canadian surgeons won't touch it.  Sorry to hear you have FS in both shoulders.  I can hardly imagine how painful and debilitating that must be.  One of the thoughts driving me towards capsular release is the hope that it will reduce recovery time, in case the other shoulder decides to start. Thankfully I do not have diabetes, which I gather makes the condition more likely and extends the development and recovery times.  

  • hope4cure
    hope4cure richard43586

    Posted

    For my frozen shoulder Xiaflex injection was used. It's breaks down the collagen that builds up in the facia tissue and capsule area.

    after two days the dr manunipulates the shoulder to improve ROM. a few weeks of therapy and shoulder support and home exercise has improved my strength ROM . 8 months later no issues.

    • richard43586
      richard43586 hope4cure

      Posted

      Hi.  Glad to hear this worked for you.  Not heard of Xiaflex before. Are you in the UK?
    • hope4cure
      hope4cure richard43586

      Posted

      No I am in the US, the UK xiaflex or Xiaplex is available only to registered users. Actual UK use to Xiapex in frozen shoulder or adhesive capsulitis .

      Auxilium the manufacturer is primarily responsible for the global development of XIAFLEX. See online more info.

       

    • richard43586
      richard43586 hope4cure

      Posted

      Sounds like a promising new treatment.  Perhaps trials should be carried out here (UK) to see whether it could be made more widely available.
    • hope4cure
      hope4cure richard43586

      Posted

      It is approved in the UK.,SEE manufacturer ai ilium to locate a dr in your area.
  • maria58274
    maria58274 richard43586

    Posted

    I'm glad to hear that the NHS is doing trials - but sorry to hear they don't include hydrodilatation.  Some trials of that vs MUA showed better results wihout the risks of surgery.  I think you've been allocated the least risky option of the three on offer, although personally speaking, I'd have only considered surgery as a last resort and in the event, I didn't need to consider that route.

    There are a lot of differing opinions on the best treatment for a frozen shoulder, from both people on this forum and specialists - and of course, our shoulder issues are not necessarily exactly the same and we all react differently to treatment.  Many specialists believe that intensive physio can do more harm than good and my own experience with it (and not the over strenuous sort) it increased my pain without giving me any extra movement.  MUA has known risks and although others claim it worked for them, I personally would never have considered it.

    I started with my frozen shoulder late spring/ early summer last year and this time 12 months ago was probably at my worst.  After hydrodilatation last December (recommended by my physio) I was pain free within 2 days and have remained so.  With gentle excercise. I now have 95% movement and have been getting on with life normally.  The last little bit isn't stopping me from doing anything and I'm sure will come back in time - I don't really think of it now and consider myself back to normal.

    Sorry that this doesn't answer your question.  I just wish the NHS was a bit more enlightened - and that more was known about this painful condition.  Although the consultant who I saw does some NHS work, I'm not aware of hydrodilatation being available on the NHS, as I was lucky enough to have access to BUPA via my hubby's job.  Good luck, whatever you decide and let us know how you get on.

    • richard43586
      richard43586 maria58274

      Posted

      Hi Maria

      Thanks for your full and informative reply.  Glad you have nearly fully recovered.  I don't know why hydrodilation is not offered on the NHS, it sounds a good option to me.  Anyway, the whole purpose of the trial is, of course, to find out the best treatment, because there is little scientific evidence.  However, as you say, everybody's condition is different, so the 'best solution' for one person may well not be so for someone else.  The conclusions of the trial will be interesting, although they won't be announced for a couple of years or more, and I am happy to play a small part in it.  At least the NHS is taking the condition seriously, even if only because it costs them a lot of money!  I have heard that the condition affects up to 5% of people at some time in their lives.

      I will have a chat with the Reseach Department nurse and make a final decision today.

  • wall1409
    wall1409 richard43586

    Posted

    Hi

    I too have been offered these trials but told my surgeon I would prefer release via surgery as unfortunately I have arthritis in my full spine and main joints unfurtunately also the shoulder which is giving me grief. I am still in pain with my shoulder worsened since April and now agony so I would definately go for the operation as it has good reviews and less pain

    • richard43586
      richard43586 wall1409

      Posted

      Thanks for your reply.  Sorry to hear you are in so much pain and have other conditions to cope with.  Luckily, I don't have much pain now, and I suppose the condition is 'liveable with'.  If it wasn't for the trial I would doubt I would have surgery, but maybe it is for the best in the long term.  As you say, reviews of capsular release are generally good, though there are always negative stories.

      Will let you all know how I get on.

    • wall1409
      wall1409 richard43586

      Posted

      Many thanks. I find out on 14th what fate offers me. Really hope all goes well but please keep in touch. Sadly my right shoulder is affected but with bursitis so really hoping it does not develop into this dreadful condition
    • richard43586
      richard43586 wall1409

      Posted

      Hi

      What happens on the 14th?  Is that decision day on your type of treatment, or the actual operation day?  

      I had a chat with the nurse today, and she put my mind at rest a little about the post-operative pain and physio.  She is going to confirm with the consultant on Friday though and get back to me.

       

    • wall1409
      wall1409 richard43586

      Posted

      Hi

      14th is the day I see my surgeon who will make decision or put me on trial but I'm worried computer picks physio. I'm hoping he takes my arthritis into account and offers surgery. He did mention I have oedema between the joint and bone changes whatever that means. I'm pleased your feeling more at ease with procedure

    • richard43586
      richard43586 wall1409

      Posted

      I see.  If you do sign up for the trial, you have to accept what the computer picks for you.  I am glad it chose ACR for me.  If it all goes wrong, at least I can blame the computer rather than my own decision-making!  However, you can drop out of the trial at any time if you are not happy for any reason and instead hopefully receive the treatment you want in agreement with your surgeon.

      These things are always a bit of a gamble.  I hope it turns out best for you.

    • wall1409
      wall1409 richard43586

      Posted

      Thank you

      I really hope you will have a speedy recovery. Luck may be on my side you never know

    • richard43586
      richard43586 wall1409

      Posted

      Hi wall

      Just catching up.  What was the outcome of seeing the surgeon on 14th?  Have you managed to get surgery?

    • wall1409
      wall1409 richard43586

      Posted

      Hi

      Surgeon chased up physio, which I should have been having. Back to see him on 27th October to arrange surgery date . Apparently function in left shoulder loss is 100% in right 70% . Can't wait until surgery.

    • richard43586
      richard43586 wall1409

      Posted

      OK.  I hope it all goes well for you.  A month seems a long time to just get a date though, especially if you have FS in both shoulders.  I thank my lucky stars I only have it in the one!
    • wall1409
      wall1409 richard43586

      Posted

      Update

      Seeing surgeon on 10th October now due to increased pain in both. Spoke to secretary as oramorph isn't touching this horrendous pain, can't use left arm and right arm is really starting to ache constantly.

    • richard43586
      richard43586 wall1409

      Posted

      Sorry to hear that you are suffering so. Good news that they are seeing you sooner. Hopefully light at the end of the tunnel.
    • wall1409
      wall1409 richard43586

      Posted

      Thanks Richard

      I'll keep you posted and please let me know how your surgery goes. Like you said to me, 'light at the end of the tunnel ' ''tis only us who know this pain.

      Take care x

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