6 Feb 2017 – consult with my shoulder surgeon on my torn rotator cuff and deteriorating AC joint

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I saw my shoulder surgeon this morning, and as I expected I am going to need more surgery on my right shoulder. Truth be told, my left one feels almost as bad, so I’m pretty sure the same stuff is going on in there.  And as my orthopod said “Whatever is happening in your shoulder is happening in every other joint where you’re feeling pain”.

That’s pretty much everywhere.

I’m not surprised, because I read the radiologists report.  It showed torn tendons in my rotator cuff, but only partial thickness tears, thankfully.  My biceps tendon is also torn.

How does this happen?

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Firstly, constant inflammation in the shoulder from rheumatoid arthritis.  It’s hard to see inflammation or swelling in a shoulder, but the MRI showed fluid in the joint capsule, which she explained was rampant synovitis, the hallmark of RA.  I told her that was interesting, because I was on 50mg of prednisone the day of the MRI, so I didn’t expect any inflammation to show.

I explained the fast prednisone taper my rheumatologist had me on, and the reasons why.  My orthopod was utterly gobsmacked that anyone could doubt that I have active rheumatoid arthritis.  I asked her twice if she was sure, and she wasn’t just humouring me, because my rheumatologist and pain management specialist even had me believing that I don’t have inflammatory arthritis.

She was so kind and caring I almost cried.  She agreed it’s a difficult diagnosis, especially in seronegative people, especially in women.  But she had seen inside my shoulder joint with her own eyes, and there was no doubt in her mind.  She brought up the pictures from my previous surgery, and showed me the red, inflamed synovium, and the red, inflamed bursa.  And she showed me another patient’s shoulder joint, to point out what a non-rheumatoid joint looks like.  She apologised that some doctors had treated me poorly.  She said she knew my rheumatologist and they meet monthly on a committee they both sit on.  She said she would be happy to talk to my rheumatologist about me, and give her opinion.

I thanked her.  Quite profusely.  A doctor who is on my side.  A doctor who actually said ‘Why in the world would you fake it? What have you got to gain?”  A straight-talking surgeon, who told me bluntly that there’s only one good rheumatologist in this town, and mine isn’t she.  And that she recommended that I go to Sydney for treatment, even though she realised that would be difficult.  She couldn’t remember the name, but she knows someone good, and she will send his name to me.

The other reasons tendons deteriorate, is corticosteroids, both injected directly into the joint and taken orally.  Prednisone.  She said my years of prednisone had caused the tendons in my shoulder to weaken and fray, and then tear.  She said it was her biggest concern, and the major difference in the MRI two and a half years ago, and the one a few weeks ago.  Prednisone is the devil.

I said in all fairness, all of my doctors have been telling me to get off prednisone for several years.

She said ‘Yeah, but you’re in a no win situation.  Without the prednisone you can’t get out of bed, right?

Right.

She said she understood why I’d made those choices, and she said she wished she could do more for me.  But all she can do is clean out the shoulder again, remove the inflamed synovium and bursa again, and repair the tendons.   That would give me some pain relief and better shoulder function, but it would be temporary.

The upside is, it’s not urgent.  I can put the surgery off for as long as I like – for as long as I can tolerate the pain.   And the pain is quite significant!  The front of my shoulder is always tender, but the worst pain is behind, underneath my shoulder blade.  The pain stretches up into my neck, and prevents me from turning my head fully.  It often keeps me awake at night and makes it hard to find a comfortable position to sleep in.  But it has been this way for at least six months already, I can wait a few more months.   She said she was pretty impressed that I’ve torn that many tendons, and I’m still using the arm.  She said it’s clear to her I am favouring it and flexing forward, which would be contributing to the scapular pain.  And to lift my arm, because my rotator cuff is shot, I am recruiting other muscles, to lift my shoulder.  And this is causing my scapula to rub up against my ribs, causing the snapping scapular problem, causing that bursa to become inflamed and THAT pain.

The human body is an amazing thing. It will try to compensate.  But this can create as many problems as it solves.

She said at some point one or more of these tendons will tear completely, and then I probably will experience severe pain, and not be able to use the arm.  The repair operation will be the same, however.  It won’t be a more complex operation if I wait, so she’s happy for me to put it off until I feel ready.

She did say she can only repair the tendons so many times though. She likened it to sewing up a frayed pair of jeans. Eventually you just don’t have enough viable tissue to hold it together anymore.

She can help me with a temporary fix, but I need to find a medication to reduce the constant inflammation. As long as the inflammation remains, the damage will continue.  She wished she could do more.

I told her that I am using my wheelchair more and more, because if I walk more than 50 meters or so, my hips and lower spine feel like they lock and the pain is too sharp to continue.  I need my shoulders to wheel the chair. I also need to protect my shoulders from damage from wheeling the chair.

She said it was a Catch 22.  Steroids will bring down the inflammation, but they would also do damage, weakening the tendons.  There was a very hard balance to reach in there somewhere.

She also recommended I do more physio and gave me some exercises.  And recommended water exercises, to take gravity out of the equation and to keep my body strong.   She said my strength was still very good, and while that probably contributed to some doctors not being able to see the reality of my rheumatoid arthritis, it was better for me to be as strong and fit as possible.

The AC (acromioclavicular) arthritis has also progressed since last time.  She said the constant inflammation is slowly doing its thing, and wearing away the joint.  My glenohumeral joint is  holding up well, which is good news.

So she will clean up my AC joint again, and remove the inflamed bursa again, and the operation will be very similar to last time.  The recovery wasn’t too bad last time.  It will be OK.

I could book in now and have it done in three weeks, but I’m not emotionally ready for it.  I need to get through this prednisone taper, and let my immunologist and rheumatologist do their workups when I’m down to 5mg.

Given that I’m starting to really struggle on day 3 of 10mg, I just want the next two weeks to go by fast, so that I can get some answers, and get back onto some kind of treatment.

And then I will book in for the surgery. I have filled out the paperwork, it’s all ready to go. All I need do is pick up the phone when I’m ready, and I’ll book in.  Which is reassuring.

With this surgeon, everything feels quite simple. She’s confident, open, speaks bluntly but with kindness and when she says she wishes she could do more for me, I believe her.  She calls it like she sees it, and she treats me with respect. And she gets things done.  Fast.

If only that were the norm.

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6 COMMENTS

  1. She sounds like an amazing surgeon and a real listener. My shoulders have been hellish for several weeks now, they’re always tender when my rheumy checks them but they’re too uncomfy for me to lie on now and my wheat bags are getting a good work out. When you think of the damage that’s happening while you’re in such pain it’s scary. I’d take the shoulder pain if it would leave my jaw alone though, that does terrify me.
    I’m glad your surgeon is willing to speak to your rheumy too, she should really be getting feed back from all of your other doctors in reality, surely that is what good doctoring is about when dealing with multiple issues, communication and working as a team, not just burying their heads in their own specialties alone.

    • Gillian I think that’s the biggest problem with modern medicine. We have complex conditions, several specialists and NONE of them talk to eachother! sending a report (sometimes) back to the GP to co-ordinate care is not enough. aNd GPs don’t have enough time to keep track of whats happening iwth every complext patient they have either! We really need case co-ordinators, or something like that. A specialty person in the middle, wiht medical education, who can MAKE them discuss their treatment plans. Because so often their instructions contradict eachother, and we, as patients, are left to decide who we believe. But, as the sick people, we’re hardly in the best position to make an informed decision, but it affects us the most! Um…sorry, huge rant there. Sorry to hear about your shoulders. I totally understand. Pain = infammation = potential damage :(. Jaw pain is horrible though. I hope you can get some relief.

  2. There is nothing like that shoulder pain when you are trying to sleep. I am just tapering off prednisolone myself and have damage in both shoulders also. Their are always side effects – weight gain and moonface – at least it reduces the pain and proves that you definitely have RA. Gentle hugs.

    • Hi Jennie, yes there is nothing better than absolute proof, and a doctor who is prepared to stand up and say so! I feel for you, sleep is a fleeting thing I imagine. I hope surgery is an option for you too, or at least some kind of pain relief. Good luck with your taper. It’s never easy. Best to you Xx

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