CRPS My Journey - Chapter 2: Chucky Part 1

Support

There was a time when I thought I would never be able to talk about my experiences. But I have found that writing this blog is as much self-therapy as it is creating awareness for a disease that very few people, even medical professionals know about. Being part of various CRPS and RSD support groups it is alarming to see how many people suffer from some form of this disease and how vast and diverse people's symptoms and experiences are. Even more alarming is the testimonies of how many people experience negative, demeaning and dismissive attitudes from loved ones and even the medical professionals that are supposed to help them through this frightening/scary time in their lives. In a perfect world sufferers from this disease should not have to deal with the fear that is caused by the lack of knowledge and understanding from those that have not yet experienced this disease for themselves.

Unfortunately we do not live in a perfect world and due to the complexity of this disease a lot of sufferers are pushed out in the cold where they feel isolated and even guilty for going through what they are going through. CRPS in itself already have the power to make you deeply depressed and does not need the support or encouragement from people that do not understand or acknowledge the disease. My prayers are that this blog will give some insight and understanding of what sufferers of this disease experience on a daily basis, in the hope that they may receive true love and care and support in their fight to live life as full and normal as possible.

The road to recovery and the Rise of Chucky
So getting back to where it all started for me, I don't know which was worse - the operation itself, or the occupational therapy thereafter. It felt at times as if the therapists had no mercy in pushing me to achieve certain goals. Of course the physiotherapy for the knee was challenging, but not half as challenging as the occupational therapy for my hand. I remember sitting in my office wanting to throw this little squash ball, that I had to squeeze, as hard and far away as I possibly could. It was so frustrating not being able to even make a dent in the ball. No matter how hard I tried to squeeze it in my right hand, I was just not able to. In my left hand I could press it flat, and that was almost worse as it felt like my left hand was mocking my right hand. My food had to be cut for me as I had no strength in my hand to even hold the knife, let alone press down on a knife to cut my food. The most simplest tasks like lifting a spoon, grabbing something, picking stuff up or even going to the toilet - things that we take for granted - became an enormous challenge. I had to constantly use my left hand to close my right hand in the hope that I would regain mobility in the hand. So I became angry and irritated to a point where I did not even want to look at my right hand.

My right hand began to develop its own personality, and it felt as if there was this war going on between my left and my right hand. Yes the therapy helped, but the progress was very slow and the pain...the pain did not ease. In reality it felt like the pain was getting worse. The doctor changed my medication, and then changed it again, and again - stronger meds, more meds, more combinations of meds...I've tried Targinact, Oxynorm, Stilpaine, Dormonoct, Lyrica, Celebrex, Trepiline, Mybulen, Xefo Rapid, Stilnox, Pax, Tramadol, Depramil, Synaleve, Prednisone and a number of other medications, but nothing helped.

My hand felt like it was on fire all the time. The only way I can describe it is like this: Imagine your hand as a glove filled with boiling water or lava and in the centre of that water/lava is a fire that never burns out. It keeps the lava boiling, intensifying the heat with every moment that passes. Next imagine tearing your skin off your hand so that the raw muscle and tissue is exposed. Imagine taking your raw exposed hand and pulling it over sandpaper. Now imagine experiencing all of this at the same time. That is what I experienced every day, and it would get worse at night - and it still does. Weird about this is that when I touched my right hand with my left hand it felt cold on the outside. Though, when my wife touched my hand it felt normal to her.

I did not sleep - I could not sleep and as the pain and burning and the sensitivity became worse and worse, so my hand's personality became more and more extreme. My hand did not feel like it was a part of me anymore. I would look at my hand and it would feel and look like somebody else's hand. It had this horrible sensation and I could not bear touching other surfaces. My hand felt distant and cut off from the rest of my body. And it started to do its own thing. I would often get this image of "Thing" from the Addams Family. And my hand would start jerking for no reason at all, usually when I was eating, causing my food to land on me, or when I had a screwdriver or knife in my hand, causing the screwdriver/knife to end up in my left hand - more than once. 

So I started naming my right hand Chucky and we embarked on this love-hate relationship...I wanted to help him, and he wanted to kill me (or at least kill my left hand). I often felt like taking an axe and chopping it off. And I really became afraid of my right hand and felt that I could not trust it at all. It started to affect all areas of my life. I became self-conscious of my hand, even ashamed of it. I would walk with my hand tucked away in my pockets. It started to affect my relationships, my self-esteem, my libido, the way that I talked to people, my work etc. My life came to a point where it was governed and controlled by pain. And it started to affect my knee and my neck as well.

By now, the doctors started looking outside the box for a diagnosis. They started to look at various possible theories and even rare diseases. This would mean more tests - more possibilities than actual guarantees. 

The Diagnoses
Knowing that I had a follow-up appointment with the Spine Centre, they contacted them to ask that some of these tests be done. The specialist looked at my pain levels and asked that I come back to see him the next day, and to bring my wife with. This sounded bad. It is almost never good when a doctor says that he want to see and talk to your wife. You expect him to give you bad news, like that you only have 3 months left to live or something.

So the next day we went back and he sat us down and started to talk about my neck, the diagnosis and the way forward. It was like a bucket of ice being poured over us. For the first time it became real as a diagnosis was made for my neck - Degenerative Disk Disease/Serious Spondylosis of the C4-5-6-7 vertebrae. Replacement surgery would eventually be necessary, but for now we had to monitor it. The moment that I start struggling to button my shirt or start losing balance I need to contact him immediately as the operation would then have to be done immediately to prevent me from becoming paralyzed. And then he asked about my hand.

He listened to my story and took my hand in his. He tested for sensitivity, swelling, colour change, sweat and hair loss. He read through the notes of the other doctors and the tests that they have suggested and then turned to us, "These tests would be a waste of money" he said, "the only thing that fits and ticks all the boxes is a condition called CRPS or Complex Regional Pain Syndrome. Commonly this disease is known as Suicide disease. I have some patients that developed the same symptoms after operations". Then he asked his secretary to call a doctor in Stellenbosch that specializes in Three Phase Bone Scintigraphy. He had to confirm the diagnoses.

A week later I went for the Scintigraphy. It was a long excruciating process. The test itself took about 3-4 hours. But a few days later the specialist phoned me to come and see him. The tests came back and it was confirmed - I had CRPS in my right hand. But that was not all. The type of CRPS that I have does not respond to any pain medication. The second ice bucket.

So what is the treatment then I asked? Physiotherapy, but not just any Physio. This would be an aggressive program where I would learn coping mechanisms and "self-treatment" through Mirror Therapy and Graded Motor Imagery and stuff...and lots and lots of patience. There it was again...patience. By now, patience was the last thing that I had left, and my hope was on its way out the door as well.

I was filled with various emotions to a point where I found myself in a very dark place not knowing what I felt any more. My faith has been shaken, I was losing hope, I was in emotional turmoil, my social life was over, work has become a battleground, I felt like a burden to my wife and a failure to my kids...and I felt more useless than ever before. How would I survive this? How could I expect my family to deal with this? My wife has been living with Lupus (SLE) for the last 21 years, how can I have something like CRPS and complain about it when she is always so strong? I am the one who is supposed to support and comfort her, this is not fair, this can't be happening...and suddenly I was angry at God and at the world. I felt that I was dying inside...and fear started to creep in by the backdoor of this haunted house. I felt lost, scared, broken...but I knew somewhere deep inside that giving up was not an option. And so my journey began...

CRPS My Journey - Chapter 1: The beginning

The hard reality

They say that sport is good for you. At school teachers encourage you to do at least a winter and summer sport. And in South Africa, like in many other countries I suppose, sport can become very competitive. But does anybody ever speak about the possible long term affects when you get older. You break your nose - "Nah you're fine" - but coach the blood is gushing - "That is nothing, you can hardly see it. Here let's just straighten your nose a bit and you'll be fine". You break your leg - "What are you lying on the ground for. Walk it off. I my day we broke something, you used it as an encouragement and finished the game first. Don't be such a woosh! Players these days are too soft" But coach the bone is sticking out - "Don't be ridiculous, that's just a scratch" 

But hey, fun is fun and if you're going to do sport you might as well go at it full throttle. Being adventurous I had my fair share of rock climbing, abseiling, kloofing, caving, kayaking - things that I am passionate about. At school I played some rugby, although tug-of-war was where I really excelled - probably because of my hard-headedness and refusal to give up. Being in adventure ministry for a number of years just fueled my passion. But nowadays this all seem so far behind me, as if in a faint memory. At times it feels like looking through a sheer curtain, standing on the sidelines as the world keep on moving forward.

For a number of years I have felt my neck becoming more and more problematic. Although I wrote it off as becoming overweight and unfit the last couple of years, there has always been that feeling of "what if" - "what if this was not just being unfit?, "what if there were bigger issues?" I mean at age 32 I already had my first neck operation - Thoracic Outlet Syndrome (TOS) the drs call it. My neck was a mess. The brachial plexus, which is a network of nerves that sends signals from the spinal cord to the shoulder, arm and hand were being compressed by the first rib and the clavicle - old sports injuries. It meant that a part of the bone were to be removed in order to decompress the nerves. 

 And for a couple of years after the operation my neck felt better. But then in January 2021,a lack of sleep due to a stiff and sore neck eventually drove me to see my specialist again. It felt like the TOS was acting up again. My right hand was turning numb at night and every morning I would wake up with pins and needles rising all the way into my shoulder and neck.  It was painful -  awkward - annoying. I thought after my neck operation the TOS was in remission, dealt with.

But that was just part of the problem. To top it off I had two new issues to deal with. On the one hand, a right knee that was creating excruciating pain whenever I had to bend down or stand up. On the other hand my right middle finger - locking, screaming and cursing in pain. Every morning I'd wake up to find my finger bent, locked. And every morning I had to pry it open with my left hand. Painful does not begin to describe it.

Running diagnostics

So I visited my shoulder specialist first. Maybe it was just the calcification in my shoulder that was back. I did have a shoulder operation 4 years ago so maybe it is the same problem. Nope! The dr did a sonar of the shoulder and found everything to be fine - "I think you need to go see your TOS specialist. It looks like the TOS is back". Oh no, not the TOS again. The last operation took me months to recover from.

At the Thoracic Surgeon he did more tests, sonars and scans. "Yes the TOS problem is still on the left side, although not as bad as it was on the right side, but the right side looks good. I think you need to see a surgeon at the Spine Centre. I think the problem lies with your spinal cord. I will also make an appointment with a Orthopaedic Surgeon to look at you knee and finger"

At this point I started to feel like a car having diagnostics done on it in the hope that that irritating idling problem can be resolved. But the pain was constantly nagging and the lack of sleep was making me more and more irritable, so I went to see the Spine Centre - "Mr Ritter, we have some not so good news and some good news. The not-so-good news - you have what we call Cervical Degenerative Disk Disease of the 3rd, 4th and 5th cervical disks. In layman's term, your disks are starting to disintegrate. The good news, we should be able to treat it conservatively, by sticking a needle in your disks - under anesthesia. You won't feel a thing. and then we monitor it over the next 3 years".  A rhizotomy they call it, a minimal invasive procedure where the pain signals get blocked, a conservative treatment in comparison to a disc replacement procedure. Okay that does not sound too bad, so lets do it.

At the Orthopaedic Surgeon's office there was no way of getting by with conservative therapy. My knee had a torn meniscus disk and ligaments. And the finger... A trigger finger.  This would mean operations for both, although in a surgeons scope of view quite common and minor procedures. Yea doc, tell that to my finger and knee - I don't think they will agree.

The Procedures

So in early February 2021 I first went for the Rhizotomy. It would take a couple of weeks to reach the full affect after the procedure was done. Meanwhile my operations, or rather operation, was scheduled for beginning March 2021 - a month after the rhizotomy. As I usually get very ill from anesthesia, I somehow managed to convince the doctor to operate both my knee and finger at the same time. In my mind this made total sense - both problems solved but only once being sick from the anesthetics. This was great. Yea sure it would be challenging for me afterwards, as both limbs are on the right side. And sure it might complicate the use of a crutch, but hey it sounded like a win-win and who wouldn't be up for such a challenge. Well apparently the doc was, as he quite happily agreed - we would sort out the details of using the crutch after the operation was done. 

 Apart from a few complications, the operations went well. But then came the week after the operation when it was time for the stitches to be removed and the start of Occupational therapy. And oh man, was I in for a surprise. As the cut on my hand where the operation was done was in such an awkward and sensitive area, some of the stitches were stuck and difficult and painful to remove. However there was no turning back and we had to push through the pain barrier. I think I felt a little bit of what a woman goes through during normal child birth, and I understood how they could go from being a angle to the devil himself from 0-60 seconds. It felt like the tissue was being ripped out of my hand. Sixty excruciating minutes later, the four stitches were out, but we were not out of the woods yet. Because what is life if not full of wonderful and exciting little events, and yes, you probably have guessed it - the next day, the wound on my hand burst open. You could see through the layers of fat and tissue. Now we were at a catch 22 as I had to continue with my hand exercises to regain and maintain the mobility of my hand, but now due to the open wound I had to take it easy with my hand so that I do not cause more damage. A major setback for my recovery. 

It took weeks for the wound to finally close up, and now came the hard part. As I am right handed, I had to teach myself since the operation to write and do everything with my left hand which in itself was very frustrating as everything took so much longer to accomplish. Now that the wound was closed, I felt like I was back in Grade R as I had to learn to use my right hand again. I had to learn to write again, painfully had to learn fine motors skills, things we take for granted like just holding a ball or squeezing it, picking stuff up, moving stuff, turning nuts and bolts, and the worst...bending my fingers.  I felt frustrated and depressed, irritated and angry as it felt like the progress I was making was way too slow. I had no strength in my hand, and trying to hold on to something without dropping it was almost impossible - it was like trying to lift a 1 ton wrecking ball by using just a chicken feather. I remember a couple months after the operation I had to change the sparkplugs on my wife's car. It took me almost 3 hours to change 4 sparkplugs, that were not even hidden, as I would keep dropping the spanner. And every single time when I finally did manage to hold on to the spanner, it became almost impossible to turn it as I had no strength and the pain were too much. I felt totally useless and depressed!

But the show must go on, an as they say, quitting is not an option. "Patience" the Dr said, i just need to be patient. The knee that initially seemed to be the bigger issue now took a backseat to the hand which was supposed to have been the minor issue. The healing he said can take up to 9 months for the mobility to come back, but he would make sure that I would have enough pain medication to get me through. And he did - not that the medication actually worked - but let's not jump ahead. That is a story for another day. Nothing could prepare me for what lay ahead as I have just entered through the door of the haunted house. 

So this is me.. I am JJ Ritter, a father, a husband, a survivor, a fighter, a CRPS warrior... Welcome to my journey!