UK NHS Frozen Shoulder Treatment Trial
Posted , 9 users are following.
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
frozen_stiff richard43586
Posted
richard43586 frozen_stiff
Posted
As far as I am aware of there is only one trial by the NHS in the UK specifically relating to frozen shoulder treatment. I first went to my GP about my condition about 4 months ago, which was a month or so after the shoulder started getting most painful and restricted, and the 'zingers' started. To be honest, I am not absolutely sure when my FS started. With hindsight, I was getting slight pains and twinges in my arm and hand 18 months or so ago; before I retired. At the time I put this down to poor posture at my desk and maybe a bit of RSI. When I retired a year or so ago, I actually started to use my arms a lot more, doing some voluntary work and also moving furniture and catching up on jobs around the house. This is when I noticed the dull ache starting, though again I just put this down to over-exertion and fatigue, though resting didn't seem to improve it. So you see pinning down when the FS actually started is not easy for me, it may have been going on longer than 4 months.
My GP referred me the orthopedic clinic at the local hospital. The consultant there diagnosed me with FS, on the basis of my lack of ROM, pain if over-stretched and examination of x-rays. Although my pain is not too bad most of the time, it still wakes me up most nights as it stiffens up during sleep. I am 62 years old, generally in good health otherwise, apart from TMJ niggles and occaisional back-problems. They are aiming to get 500 volunteers on this study, so hopefully any skewing of figures will be minimal.
frozen_stiff richard43586
Posted
Hi Richard, I had a large rely to you but it was deleted for some reason. Here is much shorter version. It is not usual to begin a frozen shoulder after 60, those that suffer at that age invariably begin the signs and symptoms in their 50s. Secondly by the fourth month it seems it should be becoming much worse, both pain and loss of range.Thirdly a traumatically induced painfull shoulder is common in the middle age and elderly and always after repetative tasks and heavy work they are not used to. In cases such as this the zenith of pain and stiffness is 4 months and full range takes another say 6 months. I know on this site you can't diagnise a patient without examining them but if they don't fit the basic criteria you must challenge sometimes.
richard43586 frozen_stiff
Posted
Hi frozen stiff
Sorry, only just got round to replying. I realise I may not fit the typical or average criteria for FS development. As I say, the freezing stage may have been much longer than I thought. It affects different people different ways of course. Maybe I didn't recollect or describe the progress of the condition too well. However, I have to go by what my specialist consultant says. Will find out tomorrow though, as he is going to have look inside my capsule.
wall1409 richard43586
Posted
Hi
Hope your doing ok
Update
Feeling extremely deflated. Seen consultant yesterday and was expecting a date for surgery but unfortunately this female physiotherapist, who was extremely abrupt and took charge completely has decided I need physio with hydrotherapy and my shoulder pain could also be caused by my damaged neck? Consultant wanted to order an MRI scan to see if my neck has deteriorated further back physio stepped in and said she felt there was no need!!! Seeing surgeon in 4 months so left in agony. Consultant didn't think surgery would help as I am in too much pain and it would just freeze again. My thoughts are, if the physiotherapist wasn't there I think he would have chosen surgery. I now have vertigo so seeing gp tomorrow to try and get a new MRI scan, that would then make neurosurgeon make decisions about surgery. Why don't these consultants speak to each other
richard43586 wall1409
Posted
Hi
Thanks for enquiring. I had my surgery 12 days ago and, as I said on another thread, I am still in pain, but hopefully it is now reducing slightly, although sleeping is still a problem. My ROM has improved by a small extent, though iti s the pain which is my main concern at the mo.
Sorry to hear about your experiences with an overbearing physiotherapist. Apologies if you have told me before, but do you mind telling me what part of the world you are in? I am being treated by the NHS in England, and I didn't even see a physio until after my operation, but that may have been due to the clinical trial. Even now, he has just prescribed a programme of (fairly) gentle home exercises, but I see him again tomorrow and we'll see whet happens.
In my case, the consultant and the surgeon were the same person. Sounds like you have a lot of people involved who have differing opinions. I would agree, however, that if you are still in the 'freezing' stage then surgery would possibly not achieve much, as the body seems to have to go through this stage whatever and surgery would just delay or aggravate it. My consultant checked that I was in the 'frozen' stage (i.e. less pain but maximum stiffness) before putting me on the trial.
I guess you are on pain meds, but it might be worth seeing your GP about different / additional ones. I know it is not easy, but I would still press for the MRI scans, preferably without the physio present! In my case I had X-rays to rule out other causes of my symptoms.
I do sympathise with you - I think most people on here appreciate the pain and depression. But please try to be positive and remember it WILL get better!
wall1409 richard43586
Posted
Thanks Richard
Pleased you have had your operation and now on the road to getting your mobility back
I now understand why surgeon changed his mind as I'm 6 months in from first symptoms but unfortunately both arms are affected now.
I'm seeing gp tomorrow and asking for an MRI. I do have multiple damaged discs in my neck from c1 to t1 also spinal stenosis in lumber spine again through multiple disc damage. They will only operate in my lumber spine if I become paralysed or lose my bladder/bowel function as it's too risky.
Unfortunately I also have fibromyalgia, diagnosed by rheumatologist and physio yesterday couldn't understand why I wasn't getting treatment for this but hey ho .
I am getting passed around a lot here but I am really hoping hydrotherapy will ease my aching body.
Good luck with your recovery and please keep in touch. This is such a debilitating condition and we all need to rant occasionally.
Take care x
Elainescribens9 richard43586
Posted
Hi Richard....did u have ACR.....I've just had MUA for a four month frozen shoulder. Had right one 7 years ago. would love some encouragement of getting through the pain. I am applying heat before exercises and icing afterwards which is well recommended. Using a Tens machine is wonderful. How long does this pain go on for after the MUA. It is really no worse than my frozen shoulder but at least there is an end in sight.
richard43586 Elainescribens9
Posted
Hi Elaine
Sorry about the delay in replying , but I am on holiday in Spain at the moment and Internet is not too good! It's been just over 3 weeks after my ACR. The pain immediately post op was comparable to that during the freezing stage. However, the pain is gradually reducing and now at last I find sleeping not too bad. Still on some painkillers though, especially before bed. Have started Physio which is quite painful at the time and home exercises. People vary with how long they take to recover, but you should see a reduction in pain after a money at most. ROM improvement will take a lot longer though. I will get back to getting some sun on my shoulder!
richard43586 Elainescribens9
Posted
Hi Elaine
Sorry about the delay in replying , but I am on holiday in Spain at the moment and Internet is not too good! It's been just over 3 weeks after my ACR. The pain immediately post op was comparable to that during the freezing stage. However, the pain is gradually reducing and now at last I find sleeping not too bad. Still on some painkillers though, especially before bed. Have started Physio which is quite painful at the time and home exercises. People vary with how long they take to recover, but you should see a reduction in pain after a money at most. ROM improvement will take a lot longer though. I will get back to getting some sun on my shoulder!
richard43586
Posted
Elainescribens9 richard43586
Posted
Hi....thank you....I've taken ironing up at 3.30 a.m...on new pills today Celecoxib...so hopefully might get some sleep...u r right once pain has settled down it is like the freezing stage....this is a good sight....as ive said really wished I had this done last time...enjoy Spain...
richard43586 Elainescribens9
Posted
Hi all. Just a quick update as it is now 1 month after my ACR surgery. Have been to physio 3 times since, and he has given me 4 sets of home exercises to do, 6 times a day if possible. Am finding the exercises are useful (if a little painful) and he seems pleased with my progress so far. My ROM has definately improved (by at least 10 degrees) compared to a week after the op.
The worst part is still the pain aspect. Although my average pain levels are down significantly, there are some days when it returns with a vengeance for no apparent reason. Yesterday it felt like someone was stabbing a knife in my arm at random intervals, whereas today it is just a dull ache. I still cannot quite manage a full night's sleep.
Anyway, it seems to be 2 steps forward, 1 step back, which is good. At the moment, my feeling is that the surgery has speeded up the recovery. I think there is light at the end of the tunnel; hope this gives some hope to others out there who are suffering worse than me.