Sunday, January 26, 2014

"Changed in a positive way"

Yesterday I saw my physio at UPenn, Marty, who has been overseeing my 'progress' and treatment because he is considered the best and most experienced physio in this area, specialising in scapular issues.  I was referred to him by my surgeon, Dr Kibler, 17 months ago now.  For the first visit, my regular physio (in PA), Angelo, came to my appointment with me (a real illustration of how wonderful he is) and I was evaluated by Marty.  I was in a very bad way at that initial consultation.  I saw Marty and Dr Kibler together at a conference in Philadelphia in November 2012, and Angelo (and my Mum) were also there - I felt very lucky to have had the opportunity to have them all in the same room, sharing opinions and discussing the way forward at that time - especially as they all work hundreds of miles away from each other.

Seeing Marty has been incredibly helpful.  In all honesty, the appointments are good, the information is top class, but the general opinions on my progress and the state of my shoulder are not fantastic (possible understatement.... dire would probably be more realistic).  One of the main benefits of seeing him every 4-6 months is that he can offer some real perspective which is difficult to get when I am dealing with my shoulder every day, or other therapists are seeing it weekly, or even multiple times a week.  

My physio in Scotland (I'll call him R), felt it would be helpful for him to have a scapular-issues-expert give some feedback to help guide him with his treatment.  He is also a fantastic physio, and has the advantage of knowing my body well, as he has treated me throughout my life for the many injuries I sustained as a gymnast.  He also has strapped my injured ankle for competitions, and watched me fight through injuries to return to training and competing as quickly as I could - basically, he knows me; he knows I am not someone who is beaten by my injuries; that I have the ability to battle them; that I know I have to work to recover; and he has watched me go through that process multiple times before.  So on a personal level, he knows my capabilities and determination, therefore he really does know that I am not the type of person who will not bother with exercises, or fail to adhere to my rehab programme - he will never accuse me of being weak, or neurotic, or not able to deal with pain because he knows that is not me.

Generally I am described as a 'compliant patient'! Although the 'resting to heal' bit seems to require more mental effort than the 'pushing through' bit - I have learned that the physical response really should dictate this... I'm just working on applying it a bit more effectively.

Despite his expertise, and experience in dealing with unusual sports injuries, R hasn't encountered my injury before (I really don't think anyone has - not all of it in combination) and he said it would be helpful for him to have some feedback - and some perspective, which is exactly what Marty can offer, having evaluated me from August 2012.  So I am sure he will feel both delighted and relieved that Marty said I should keep doing what I'm doing just now - it is the greatest improvement he has seen (have to qualify, that IS relative).  He felt that my scapula is moving better than he had seen it move before.  That's the good news.  And it IS really good news  -  it's been a long time coming; it still does not move anywhere close to 'normal' (and nobody knows if it ever will); it does not move in the same way as my left (good) side and (in my opinion) it really can look quite deformed in some positions (I don't think anyone would disagree, they just steer away from words like that!) -  BUT I have many hurdles to overcome and still a long, probably bumpy, road ahead of me filled with unknown challenges, heading towards an unknown outcome.

One step at a time - still the necessary advice.

I did take a copy of my dynamic neuromusculoskeletal (NMS) ultrasound reports to my latest appointment (I only got the reports in November; scans last August) and the specificity of the reports is something very new in dealing with nerve injuries.  The scans, and the fact it is possible via these ultrasounds to view the soft tissue - muscles, tendons, ligaments, nerves - as my arm was moved, confirm what was really just a suspected issue beforehand.  It seemed to be clear to the physios that I had nerve issues, but the standard nerve testing at the moment is an EMG (electromylograph) where hollow needles, filled with electrodes are inserted into the muscles and the electrical conductivity is measured.

This involves sticking the needles into different muscles (one at a time), testing at different depths of the muscle, testing with passive movement (the doctor moving the arm/hand/thumb etc.) and active movement (me moving, or attempting to move).  I'm sure I've said it before, but just to really reiterate - these HURT.  These hurt like hell.  As in crying out and whimpering and squealing throughout the entire process. Imagine having a needle pushed into the muscle between your thumb and first finger and contracting the muscle so it actually feels like you are squeezing a mini metal rod inside the muscle (feel sick yet??) - that's about the best way to describe how that feels; then imagine having an injection, but instead of a 'slight pinch' and 'over in a second', imagine the needle is inserted and then wiggled about at different depths - pushed deeper, wiggled, pulled out a bit, wiggled.... get the idea?  I have to stop.... the memory is actually making me feel sick!! -  I had four EMGs.  The first one took about 45 minutes and I think I had 14 needles sticks.  There are also nerve conduction studies which send little electric shocks from one point to another via electrodes stuck on the skin.  I have read people say these are sore, but compared to EMGs, they are nothing - a little electric shock, and over very quickly.

What these tests can show is whether or not a nerve is conducting electricity - i.e. sending messages to the muscles and telling them what to do.  All of my EMGs were negative, meaning I didn't have any severed nerves - a really good thing.  BUT.... that's pretty much their limit.  My later EMGs (6 months post-injury) showed "slow firing" which was attributed to pain and hesitation - I don't know enough about the actual numbers and measurement, I'd guess that was probably a factor, but what is impossible to tell (as far as I'm aware) is what other damage that might suggest.

With the dynamic NMS ultrasound, it is possible to see the damage in much more detail - on video; and to see what happens with movement - which I feel must be incredibly helpful, because most injuries DO feel better at rest. The dynamic testing has to be an enormously beneficial step forward.  With my NMS ultrasound, when someone lifted my arm, my 'thoracic outlet' (where the nerves split into the various nerves that transmit messages to the arm/ shoulder) was completely crushed to the extent that it disappeared on the video screen.

This video from Dr Fried's article (linked below) shows a normal scan, and a positive scan and is almost exactly what my scan looked like when comparing the left (good) side with the right (injured) side (it is short and features a simple, explanatory commentary):

(Click for the journal article - if the video doesn't load, it is available on the webpage under "supplementary material")

The reports from the scans (I had three areas scanned) are very specific - showing scar tissue within the body of the muscle, scar tissue/ adhesions wrapped around the nerve(s), inflammation of various muscles, nerves and tendons, and also changes/ abnormalities in the tissues, indicating evidence of injury.  And possibly most importantly, they show how movement affects these structures - by compression, or other abnormal effects of movement.

That's all a bit medically complex, compared to my usual blogs, but it's necessary to explain because ultimately it reassures my physios that they were right - they can see nerve injuries from movement patterns, pain descriptions etc., but there isn't any 'scientific evidence' in many cases, which Western medicine has placed on a pedestal and considers necessary for confirmation of any diagnosis.  Unfortunately, it makes confirming nerve injuries and verifying the extent of a patient's pain very difficult for doctors.

I do understand that - pain is subjective and what might rate as a 4/10 for some people may be described as an 8/10 for others - how do doctors differentiate between this?  And perhaps more pertinently, is it necessary to differentiate?  If someone considers their pain unbearable, does it matter how someone else would describe it?  I don't know.

My scans, and reports do show that I have thoracic outlet syndrome (the crushed nerves in the video), brachial plexopathy and associated nerve damage; that I have scar tissue 'squeezing' my nerves, scarring in the muscles the nerves travel through; inflammation of the nerves at specific points, causing the burning and numbness, especially in my hand - and more.  In a way, it describes my pain; and, more importantly, it validates it.

None of this is especially good news from a physical point of view when everyone considers what this means for me right now - it means that my pain IS very similar to RSD/CRPS-type pain, except I have a cause that has been viewed - it still means my pain rates the same as the most painful chronic pain condition that exists (42/50 on the McGill pain scale - childbirth is rated at ~30-36/50); and I have that pain constantly - it never goes away.  The intensity fluctuates: sometimes is calms down and sometimes it roars, BUT knowing there is a reason for it does offer a little comfort - people with genuine RSD/CRPS do not (yet) have a medically understood cause for their pain, and it always comes with the possibility the pain can spread to other limbs, or in the worst case scenarios, throughout the entire body.

McGill Pain Index, showing RSD/CRPS (causalgia) pain ~42/50
(click to enlarge)

It does mean that my doctor can give me an estimated time on nerve healing (around 2-3 years from these scans) - again, this is not great, but it is better than being told "you could have this pain when you are 80" - which really might rank close to the top in terrible things doctors have said to me (it's a tough contest though!).  It means a lot of things are unknown; but it does mean my exercises and rehab programme can be tailored more specifically - so right now gentle nerve stretches (to attempt to stretch out the 'bad' scar tissue), massage to break up scar tissue within muscles, and maintaining a range of motion are the important things.  NOT attempting any kind of strength training, or resistance training, and resting when necessary, are all very important too -  because irritating the nerves in any way will only cause these problems to increase, and will prevent healing.

The outcome of my appointment yesterday was that Marty said, all things considered:
-  fracturing my scapula was nothing, 
-  the dislocated shoulder was not a big deal
-  the detached muscles were not even the biggest problem 
-  the torn muscles (all of them!) were not the issue
       (and those are some major things!!)

- all along, the brachial plexopathy is the WORST thing

I wasn't very happy that I scored 18% on the shoulder function questionnaire compared to 20% last August, although for 2 percentage points, that can fluctuate even within a day - it depends on exactly how my pain is when I answer the questions. I have been told NOT to focus on this!  I did think I'd have gained a few more points, but I still have very little 'normal' function in my arm - my passive movement has improved, but my active movement really hasn't - this all fits with the nerves not functioning so at least we all understand why things are the way they are (finally.... hopefully finally!).

For me there is some relief in that - having answers, hoping that this really IS the final answer; but it doesn't take away the severe pain, or the frustration of not being able to live any kind of normal life, and not knowing when that is likely to change.  It is also scary trying to look too far ahead - I do know (having been told by a couple of doctors, and also having read it in Dr Fried's book) that in some cases conservative treatment is not effective, and removing scar tissue surgically becomes necessary.  However, the fact I am seeing little (teeny tiny little) improvements now is a positive, and I am hopeful that it is an indication that we have finally found the right information and the right rehab programme, and that these will combine and give me the best chance at avoiding any kind of nerve surgery - inherently risky, for obvious reasons, and always a last resort.  But I just have to keep doing what I am doing; hope that I am creating an 'environment' that is conducive to healing, and that I will continue to see these small positive steps - and most importantly, will lead to a reduction in my pain level....... soon, please.

Marty's overall conclusion was that I am a little better - but "better is a relative term" and therefore I think the most positive thing he could think of to say was: "you've a positive way" - which is better than before!

No comments:

Post a Comment