CRPS is a rare disease, and presents differently in each patient. In medical terms, the:
CRPS population is heterogeneous, with distinct subgroups that exhibit different clinical and biochemical features, thereby exhibiting a varying response to treatment” (1)
My translation of what this means is that people with CRPS are a diverse group, with no obvious similarities linking them. CRPS patients have different symptoms – and show different signs* – of this disease. Test results may also differ from patient to patient with CRPS.
These different signs, symptoms, and test results are grouped together into sub-groups. This might someday help provide better treatment to people in each sub-group, because any approach that can be proven to work for a few of them could be tried for others with the same symptoms.
In my case, CRPS causes neuropathic pain as well as joint stiffness (and pain) in all of the finger joints of my right hand; from the wrist down to the small joints that flex the fingertips. My thumb, thankfully, was spared.
The joint pain is a different type of pain from the neuropathic pain – as if the neuropathic pain wasn’t enough! These stiffened joints had turned my right hand into more of a claw than a hand, even after a series of 6 day-surgery ultrasound-guided stellate ganglion (nerve) block; all those blocks were within a period of about 2 weeks.
To try to reduce this stiffness in all my finger joints and my wrist, my neuro-anaesthesiologist proposed another type of day-surgery procedure. So on June 16th and July 12th (this past Tuesday) I had my 7th and 8th day-surgery procedures for CRPS.
It seems so strange to say that – I sometimes can’t believe how many times I’ve been in the day-surgery operating room (OR) since my diagnosis on May 27th, especially after being told for almost 3 months that there was nothing wrong with me!
I was even told, at one point pre-diagnosis, to stop exaggerating the pain I was feeling… while I was having what I later found out was a pain seizure!
These 2 new day-surgery procedures were ‘Bier blocks’, sometimes called ‘IV blocks’, and holy cow they were painful!!! Not right away, during the procedures, but after the anaesthetic wore off.
I’ve included a link to a detailed description of a Bier block (2) at the end of this post, but it’s fairly technical so I’ll try to summarize it here – in case anyone else with CRPS is reading this post and wondering whether this procedure could help them.
The Bier block began with me lying on a gurney in the OR while my neuro-anaesthesiologist very carefully inserted a cannula (IV port) into the top of my right hand, the one with CRPS. The skin on my hand and arm is super-sensitive, even to the lightest touch (or fabric), so that was very painful. But that was nothing compared to the pain that would follow.
My neuro-anesthesiologist had explained that he couldn’t freeze my arm at the start of the procedure, because I had to be able to tell him how my hand and arm felt during the first part of the procedure.
Next a hydraulic tourniquet was set up, by a specialized technician, at the top of my arm – at shoulder level – but not inflated right away. Then a couple of nurses took turns holding my arm straight up towards the ceiling for 5 minutes, using gravity to ‘passively exsanguinate’ (let the blood sink out of) my arm.
Once my arm had gotten very pale, with a nasty pins and needles type of feeling, my neuro-anaesthesiologist very tightly wrapped a stretchy rubber Esmarch bandage around my entire arm; a nurse was still holding my arm up towards the ceiling during all this time.
The wrapping started at my fingertips, then over the cannula in my hand (Pain! Pain!! Pain!!!), and continued all the way up to my shoulder. He very apologetically explained that he had to manually squeeze any remaining blood out from my arm; he was wrapping the bandage so tightly that he had sweat on his forehead.
I joked that they should have a trained boa constrictor in the OR for that (I like snakes). Imagine having an arm that already feels as though it’s on fire and being blow-torched. And then imagine having the entire arm squeezed and bandaged tightly enough to literally cut off the circulation – that will give you an idea of how it felt.
His goal was to wind the bandage so tightly around my arm that it would push all the blood out of my arm. Once he’d finished squeeze-wrapping my arm tightly with the Esmarch bandage, which took a few minutes, he held my arm straight up and slowly inflated the hydraulic (electric) tourniquet.
The tourniquet was used to cut off the circulation (of blood) to my arm. Once it had been fully inflated, my neuro-anaesthesiologist unwrapped the Esmarch bandage from around my arm.
I really wish I’d asked one of the OR nurses to take a photo just then, because my entire arm had turned green! At this point my neuro-anesthesiologist asked me a series of questions about how my arm felt, and then – finally! – injected an anaesthetic into the cannula in my hand.
This injection of anaesthetic, combined with the fully exsanguinated (bloodless) arm, is what created the Bier or IV [nerve] block. Once the anaesthetic had started to work, I could just barely feel my arm, but had no control over it at all.
It was a very bizarre feeling, as though my arm wasn’t fully a part of my body; like a phantom limb, but while I still had the limb. When my arm was completely frozen, a hospital physiotherapist came into the day-surgery OR to ‘work on’ my finger and wrist joints.
She compared this to trying to break scar tissue inside each joint. As CRPS is a rare disease, this procedure is done only rarely; as with most of my other procedures in the day-surgery OR, this one drew a crowd.
The physiotherapist had brought a trainee with her, and there were a number of medical students, physicians, and other healthcare professionals also milling around my gurney during the entire procedure; from the set-up of the hydraulic tourniquet through to the end of the 45-minute physiotherapy treatment.
Once the physiotherapist and her trainee left, one of the nurses stopped by and told me that I’d have to stay in an observation bay in the day-surgery OR for at least another half hour – until the anaesthetic had completely worn off.
There was no nurse assigned to me, so she said I should just call out to any of them if I needed anything. But it’s not in my nature to complain, or to ask for help – even now.
It was very cold in the OR, and this lovely nurse noticed that I had goosebumps on my arms; she asked if I was cold. I replied that I was almost shivering. Another medical student stopped by just then, to ask me a few questions about the procedure, and the nurse left. I thought she’d gone to lunch.
Instead, the nurse had gone to get a few blankets out of a warming machine. As soon as the medical student left my bedside, the nurse came back to cover me with hot blankets – fresh out of the warming machine.
There are times when I find it difficult to express how much a simple human kindness can mean in a patient situation, and this was one of them. After she’d swaddled me in warm blankets, this nurse reached under the blankets to feel my feet. I hadn’t noticed until she did that, but my feet were icy cold.
She went to get another heated blanket, and then called over one of the other nurses; together they lifted my feet and lower legs up off the gurney, to wrap a hot blanket around my feet.
The comfort provided by those heated blankets, and a simple kindness by a nurse in the OR, was indescribable. Thank you so very much.
It turned out to be a good thing that I was kept under observation in the day-surgery OR, because what happened next was unexpected… I’ll post the end of this story tomorrow – stay tuned!
References:
(1) En Lin Goh, Swathikan Chidambaram, and Daqing Ma. Complex regional pain syndrome: a recent update. Burns & Trauma. 2017: 5:2; 19 Jan 2017. Web:
https://doi.org/10.1186/s41038-016-0066-4
(2) New York School of Regional Anesthesia (NYSORA). Bier Block. Web:
http://www.nysora.com/bier-block
* Read the post Sign or Symptom? to find out what these terms mean.