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

Sunday, August 19, 2012

Hoping for answers

Tomorrow we are leaving for our FOURTH trip down to Lexington, KY.  I am really hoping it is going to be as worthwhile as the last three journeys.  I would like to hope that this will be the last trip we have to make to Lexington, but I honestly don't know if that is realistic.

At the end of last week, Angelo my physio took some measurements while he was doing my passive range of motion exercises and it wasn't good news.  My measurements have actually got WORSE since June.  My shoulder capsule is tighter than it was before.  He did tell me that it's not by a huge amount, but it shouldn't be going backwards at all.

I was very upset.  I don't know what I can do to make a difference.  They gave me loads of exercises to do and I did them religiously and then they told me I was doing too much, my muscles all needed time to rest and recover.  So I dialled it down.  I followed the new exercises since June very carefully.  I did exactly as I was told. I did not do too much.  I did start to feel a bit better, but I don't feel that I can do LOTS more on a functional level.  I feel so frustrated that the advice I keep getting is that I need to rest and heal.  I am now 24 weeks post-surgery.  I thought that at this point - surely! - I would be concentrating on rebuilding strength and flexibility; not on still learning how to move my shoulder certain ways..... or even worse, NOT being able to move my shoulder certain ways.

My parents say they think I am holding myself funny, or that I'm not trying to use my right arm and I feel so upset to hear that is what they see.  It's not that I don't try to use my right arm - I really do try - it's just that it doesn't really work properly.  I simply CAN'T make it do certain things, I don't know how to explain it because I've never experienced anything like it before but when people say that I "can't tolerate that movement" or that I "need to relax the muscles" or that I need to "try drinking with that hand" and they are just pointing out what they SEE, what they don't see is how many times I try to do the movements in front of a mirror, in pain, just to see if I can MAKE myself move that way.  I CAN'T.  I hate the thought that people think I'm not TRYING to move because I try all the time.  But I just can't make my scapula move.  

There is a possibility it is quite literally stuck down by scar tissue.  I don't know how this can be fixed.  I have had some incidents that hurt like hell, usually end up with me sweating, crying, feeling nauseated and seeing sparkly lights and black spots; I have come to recognise these as scar tissue breaking up.  But they don't seem to give me any freer movement, as you'd think they might.

One doctor last year suggested I might need to be put under anaesthetic and have my shoulder moved quite violently to break up the scar tissue - if that is actually what is sticking it.  I am actually at the stage that this option sounds attractive. As long as they gave me adequate pain relief for afterwards.  The longer the pain persists at a high level, the less I feel I can tolerate it.

I have had quite a lot of scar tissue breaking up in the last few weeks - and in fact since my surgery.  I've been told that it's happening more than they'd expect.

I know my pain is less than it was immediately after my surgery when it was just unbearable all the time, but it is still pain that I'd rate about an 8 or 9 out of 10 when it is at its worst. Mostly, it's probably about a 6 although it rarely goes below that.  I still need very strong painkillers every day (and muscle relaxants, and anti-nauseas, and sleeping tablets).

This trip I see the surgeon on the Monday morning and then the shoulder therapists are going to work with me on Monday, Tuesday and Wednesday, so we are hoping that spending that bit longer with them will be productive and will help me move on from here.

It's been really hard these past few weeks as we've had friends and family visiting with us from home and I've been too sore and too exhausted to do all the things I'd have liked to do with them.  It is still hard for my posture muscles to support me when I'm sitting, so sitting with my arm and head unsupported for any length of time causes my neck to spasm and me to get very dizzy and sore.  They told me these muscles are basically "starting from scratch" and they have no endurance and it will just be time they need.  There is nothing I can do that is helpful.  I do have little exercises, but I'm not allowed to do lots of them as the muscles very quickly tire out, and the same symptoms appear when the muscles are tired.

So I am feeling very flat right now and I honestly don't know what I'm going to do if I don't get some answers on this visit.  I am really struggling to cope with the pain and complete lack of function in my right shoulder and right arm.  Hopefully they can offer me something NEW that will give lots of improvement. 

"Insanity: doing the same thing over and over and over again and expecting different results."
          ~ Albert Einstein

Thursday, August 9, 2012

Be Brave

Today Mum received a mysterious package in the mail.  I watched her open it, my curiosity piqued. She handed my sister and I little packages identical to the one she held. Surprise pressies are the best! So what was the surprise?  A fantastic idea: "Bravelets".  Ours have a stainless steel bar that says "be brave" and a lime green leather cord - for Lyme awareness. 


You can buy Bravelets here and support your favourite cause in doing so.  $10 from each of our Lyme awareness Bravelets goes right to Lyme research.


I really love these because they are well made, a nice little piece of fashion jewellery but with a worthy cause!  They're unusual, so when someone comments on it I am looking forward to saying "It's to help raise awareness of Lyme disease" and hope that every time that happens, someone else learns about Lyme and passes that on to someone else too.

In addition, the very simple, yet eloquent, "be brave" will remind me every day that is what I am striving for.  Feeling linked to the Lyme community through this bracelet, "be brave" will also remind me that there are others fighting the same battles and collectively we can be brave and together we can beat Lyme.

Share Bravelets with your friends and help spread awareness of Lyme disease

“I may not have gone where I intended to go, but I think I have ended up where I intended to be.” ~ Douglas Adams