Friday, August 31, 2012

I am not an island...

It's now been a week since we got back from Kentucky.  It was a very eventful 3 day visit and it has really taken me all week to even try to begin to make sense of everything in my head.  Overall I reckon I spent about 16 hours at the clinic between the surgeon, shoulder therapist, physiotherapist, radiologist and rheumatologist and was pushed, pulled, scanned, measured, stretched, prodded, and jabbed!  Obviously a lot of information was packed into that time so I'll try for a quick summary.

Day 1:

I initially saw the shoulder therapist who had a 5 minute look at me and decided I had to see the surgeon immediately; he had a good look at me and sent me for a CT scan then I went back to see him after the scan.  He reviewed the scan with me and talked us through the images, stopping to point out the "gaps" in my scapula where he had drilled holes!  The scan was really looking for scar tissue or bone spurs that might be "sticking" my shoulder and preventing it moving and it showed no evidence of these.  This is really good because it means I don't need more surgery, but it does mean the issues are more complex.  

The other good news was that the actual surgical repair looked good on the scan.  The muscles are definitely attached and "firing" but they are just very weak and aren't really able to work properly right now because my shoulder isn't really working so I'm not regaining "normal" movement.  Dr K did tell me that it would take time to build strength anyway and it was like some of these muscles are "starting from before zero" so regaining any kind of strength will take a long time.  Even just enough strength to hold my head up unsupported!

The scan did show I have pockets of fluid in a couple of muscles and these correspond with some areas of bad pain, so Dr K gave me two cortisone and novicaine injections into the pockets that were accessible (a couple were too close to my ribs to stick a needle in). Ouch.  The novacaine was supposed to numb it quickly but I didn't get the numbing sensation and the cortisone can take a few weeks to work but hopefully it will reduce some inflammation.  They don't know what causes the fluid though, it's just a sign the muscle is "unhappy".  The injections really hurt.  My body really protests against needles being inserted deep into my muscles (surely that's normal?!) and between the cortisone injections I had last week, last year, my 4 EMGs and a course of acupuncture I think I must be running at about 50 muscle jabs in the past 14 months!!

They did tell me that I was a "complex case" from the beginnning, and I had such a huge amount of damage in the most complex joint in the body.  I was also told, "You are not an island." Very profound, and the therapist's way of telling me they were there to support and help me right to the end of my recovery.

Day 2: 

The plan today was to spend some time doing exercises with the shoulder therapist but given my lack of mobility and the scan's lack of... um, well anything really, they had one of their physical therapists - who has dealt with the rehab in many scapular reattachment cases - assess me.  Her assessment:

"Asking your shoulder to work right now is like putting a stick through the spokes of a bicycle and asking you to ride it uphill really really fast."

She also said:

"Last week I had a girl in here presenting with very similar issues as you and she had 12 degrees of internal rotation and I didn't think I'd ever see worse than that and you have 7 degrees.  That's not something you want a gold medal for."

I should add, she was very nice!  The upshot is that the muscles in the shoulder need to fire sequentially and work together for any shoulder and arm function and mine are just not doing that but they're not entirely sure why not.  I am also still having major pain issues that seem to have a neurological/ neuromuscular/ nerve-based connection so they wanted me to see a rheumatologist about that.

Day 3: 

First I went back to the orthopaedic clinic and the therapist went over the series of exercises they want me to do for two weeks.  They are even more simple and basic than my last lot of exercises and the aim is to do very simple repetitive movement on a "closed kinetic chain" to re-teach the muscles how they should work in sequence.  CKC movements are where the arm is supported at both ends for stability - so the body provides one end and the hand pressed against a wall or a table the other; the idea is that the muscles are not required to do as much work and can do the movement properly without the strain - the arm is very heavy!!

After that I went to see the rheumatologist who specialises in Reflex Sympathetic Dystrophy (RSD) also called Complex Regional Pain Syndrome (CRPS).  He was a very nice doctor, took a lot of time going over everything with me, taking my history and examining me, but this appointment was really the low point of the week.  And that's really saying something given everything that had come before.

RSD/CRPS is a condition where the nervous system responds to any kind of stimulation (touch, movement, even a gentle breeze on the skin) with a hypersensitive pain response.  Symptoms include swelling, changes on the skin, change in temperature, extreme skin sensitivity, parasympathetic responses to pain (like the sparkly lights, nausea and dizziness) and I tick all the boxes.  There isn't really a question that I have some of these issues going on and that my nerves are just screaming PAIN PAIN PAIN with every movement or sensation that affects my shoulder and arm.  But the diagnostic criteria state that the level of pain is disproportionate to the initial injury - which is not true in my case.  The million dollar question is what causes the pain - is there a mechanical issue still sparking all this pain? Or is the pain response "stuck" and now the main problem?  In other words, making one go away should fix the other problem, but what way round does that go?  A bit of a simplistic explanation, but really the crux of my problem.

The specialist was very focused on pharmaceutical options and drug combinations and felt I had "classic" RSD.  He recommended several types of drug and said this would not go away without the drugs.  He also said people can just have this forever and that drug therapy can take a very long time to show any effect.  Both Mum and I asked several questions about some of the drugs and really felt he did not have adequate answers - certainly none for me that justified taking very strong drugs with potentially bad side effects without actually just giving things more time to heal.

So, to sum up:
           -        nasty condition
           -        might have it forever
           -        need lots of bad drugs

I was incredibly upset after the appointment.  That's actually a massive understatement.  I can barely think about it without getting upset again.

I went back to discuss everything with the shoulder therapist again after that appointment.  They don't think that the basis for my pain is this, but they feel I have RSD issues ALONGSIDE my mechanical issues and they don't want them to get out of control (ummmm.... more out of control!).  There are many reasons for my continued lack of mobility and ongoing muscle pain - for example: possible tiny adhesions that don't show up on a scan; possible tiny adhesions wrapped around nerve tissue; "shrunk" muscles - where the sarcomeres (this was my new word for the week, these, apparently, are the building blocks of the muscle) actually reduce in number and this completely removes the muscle's ability to expand; the mysterious pockets of fluid; ongoing inflammation... the list goes on.

After I calmed down a bit, we did make a plan that I can move forward with.  I do not want to start the drugs that were recommended.  I feel that they are very much a last resort - the average recovery time for this surgery is 8-12 months and even though it seems like an eternity, I am still "only" at 6 months.  Also, I have actually tried a couple of the milder ones he recommended prior to my surgery and they didn't make any difference and they had nasty side effects.  

My plan is to work through the physiotherapy exercises designed to address these issues; to see a specialist physio in Philadelphia who has experience in this area; to talk to our friend here who is a neurologist about the neuromuscular issues - I have appointments with both of them this Tuesday.  Despite my raging hatred for needles,  I am also going to try acupuncture again - our neighbour is a doctor and he went to China to become an acupuncturist and has his own clinic now.  I also borrowed a TENS machine from my physio to see if it helps with my pain and it is actually giving me the most pain relief I have had since my surgery.  It is my new favourite thing, even if I look kind of strange walking about everywhere with wires dangling from me.... oh well, I guess I should be ok as long as I avoid airports...

Last week I felt completely dejected and really disappointed not to have something "easier" to do - if they wanted me to do 100 exercises a day for a year, that would be easier to deal with.  It's so very difficult to find a balance here as they want me to try to use my arm and to try to move it, but they also want me to limit my pain and the two are kind of mutually exclusive right now.  It's been a really hard week to get through but in between the tears I feel this furious determination not to let this beat me and I am trying (not entirely successfully) to focus on that.  I did tell the therapist I intend to do a handstand again one day..........

I think I have failed miserably on the "quick summary" but in my defence, I really could have written so much more!

Yesterday I saw a quote I loved on a photo frame:

Masquarading as a normal person day after day is exhausting
                       ~ Anonymous

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