Friday, 30 December 2016

Merry Christmas, Happy Holidays and Here's To 2017

So it's so so close to the end of 2016, and I have to say I'll be pretty damn happy to see the back of it if I'm honest. I've debated a little about whether to write this post, but I've been pretty open and sharing with my back/leg issues and struggles so I feel like I should. Not that my/our lives are so riveting, but I guess there's an aspect of therapeutic calm that writing brings about, plus I'm pretty sure there are people who read this blog who might be genuinely interested.

At the end of the last post, I had mentioned that my back was on the fritz again and there was concern about my hernia recurring. Things have not really improved, in fact things have been on a steady downhill slide since then. The good I guess, is that my hernia has not recurred! But that's probably the only 'good' that we can find in this whole situation.

I tweaked my back at the end of November, it was already very very sore, but I fell and hit my shins on the wooden rail of the couch which in turn led me to reflex jerk backwards from my hips. Despite my main concern at the time being two broken shin bones (which of course was not happening, but you know how much it freaking kills when you hit your shins!), this action was terrible for my back. Within the space of 2 days I was in so much pain that I could barely move. I couldn't really stand up, sitting was impossible and laying flat on my back was the only thing that gave even remote relief. My right leg had again stopped working and the pins and needles were running the entire length of my leg, from hip to toes.  My doctor gave me some very strong painkillers and some Valium to ease the muscle spasms and we went home hoping for some even slight improvement.

What we instead got was a visit to the emergency room the next day in complete and utter agony, which led to a few days' stay and an MRI which revealed the extent of the worsening of my back issues. Previously I had simply had a ruptured L1/L2 disc, now I have made that rupture worse with further tearing of the disc, my L2/L3 disc is torn and bulging, my L3/L4 disc is torn but so far holding in place and my L4/L5 has bone spurring happening. The doctors and nurses at the hospital this time were wonderful.  They could see how much pain I was in and were confident that my back issues explained the pain. The gave me some more strong painkillers and a lovely old lady walker/Zimmer frame to help me get around. They said that immediate emergency surgery wasn't needed but if things keep going downhill  then in all likelihood I would need it within 12 months or so. The physiotherapist suggested some gentle exercises to help get things moving and I came home with relative optimism that things would start to look up.

Instead what happened was that things continued to slide downwards. My leg function deteriorated rapidly and my back, hip and leg pain became literally unbearable. Upon the advice of my doctor we headed back to hospital but this time to a hospital that actually has access to a Neurology department, MRI machines etc, etc....

The 25 minute or so car ride was complete and utter torture and by the time we reached the ER I was struggling to stay upright even with my walking frame. Fiona Stanley hospital has someone greet people when they get to the ER, who advises them where to wait and how many people are ahead of them before seeing a triage nurse. The lovely older man doing this told me there were two people ahead of me. They called the next person up, a woman who I think had sliced completely through the palm of her hand from what I could see, and the 'greeter gentleman' came over to see how the rest of us waiting were doing. The man who was ahead of me then restored my faith in humanity. He could clearly see how much I was struggling and told the gentleman directing people to let me go ahead before him. He was in a wheelchair, I assume he had hurt his ankle or leg, but he let me be seen first. I thanked him while I was crying with pain and gratitude and saw the triage nurse. We explained the situation, gave her the previous hospital notes from a couple of weeks earlier and were taken straight away to a bed so I could try and get some relief.

The doctors and nurses really were wonderful. They decided fairly early on that their main goal would be to get the pain under control before assessing me in the morning. They increased all my medications, gave me more of everything they could think of and when that didn't work they gave me Fentanyl. Then after they could see that was starting to work they gave me a bit more. My pain level dropped from a steady real 10 to about a 3 in a very short amount of time and I was as high as I have ever been in my life. Sadly however, (but probably for the best medically speaking), they wouldn't give me any more once they transferred me to the short stay area. They gave me lots of other stuff including the biggest Valium tablet I have ever seen in my entire life. I pretty much passed out after that.

The next day, I had nurses and doctors come in and do their assessments, and then after what seemed like eternity, a neurologist came to see me. She was very lovely but not a lot of bedside manner in that she used lots of big words and when she was done explaining didn't really give me a chance to ask questions, she just left. So she did her examination and she went away without really saying anything. We later found out she was consulting with the senior neurologist. She came back a while later and said that my back, while definitely injured, didn't require emergency surgery as there was no nerve compression of my spinal cord. She said that I have something called Functional Neurological Disorder. She kept using terms like organic and non-organic and I was getting quite lost and confused, thinking she was saying that it was all in my head. I had two other doctors and a few nurses explain it to me in more detail over the course of the next 24 hours while I was in hospital and it made more sense once they did.

Basically, this disorder is similar to other neurological diseases like Parkinsons' or Multiple Sclerosis, except that this disorder does not stem from a physical problem within the brain or central nervous system. In this case, the problem lies within the functioning of the central nervous system and brain, rather than a structural issue. So essentially from what we understand, the muscles and brain work perfectly fine, except when my brain sends a signal say to move my leg, the signals get mixed up and my leg doesn't work. It's kind of complicated and hard to get our heads around but there are some good sites with information about it if you google it.

Basically what this means in my case is that my existing physical (or organic) problems in my back are being exacerbated by this neurological disorder. My brain and central nervous system are kind of overloaded and the signals being sent are going all haywire is I guess the best way to simplify it.

So the head of the neurology department reviewed my case and was 100% supportive of the diagnosis. In some ways I guess it's lucky as one of my nurses was explaining that because of the way the symptoms present and the relative 'normality' of the test results, this can be a frustrating and long road to diagnosis in a lot of people, just as it can be for people with MS. She was a lovely lady and she sat with me while I cried and she understood how frustrated I have been this whole year. She told me she was diagnosed with MS about 6 years ago and from what she understood the symptoms are very similar, the main difference being that unlike MS and Parkinsons, FND doesn't seem to be degenerative. There is no real guideline at the moment of how, when, or even if the disease will go into remission, or get worse, or stay the same. What they are sure of however, is that the treatment involves a multi-faceted approach.

I will be working with Neuro-psychiatry for what they call Cognitive Therapy, which is where they try to find/create techniques to essentially retrain my brain to send signals properly, there is also Physiotherapy involved to try and retrain the muscles to work properly because they can become accustomed to certain ways of moving even once the signals might be getting better. For example, a lot of the time, my leg just refuses to work and when I walk, this means it drags behind me and I have trouble lifting it off the ground. The physio and Cognitive therapy will be designed to at least give me a chance of making my leg(s) work properly again. I will also be working with my doctor and possibly a specialist pain management team to find a regime of medication that keeps the pain away or at least to a level where I can manage to function AND actually do the PT.

I have recorded a couple of minutes of my weird spazzy legs to give those of you who haven't seen me in person for a while, a glimpse of what this FND does to the functioning of my legs. In the video I am trying to lift my right leg off the bed and move it around. I can do it with my left, although not as well as I used to. You'll notice it gets the shakes and tremors at a certain point as well. I have no physical control over this at all. I have what they call 'giveway weakness', which means that if resistance is applied to my feet or legs they simply cannot hold. If you push down, I can't push back against that force. I also have a lot of sensory changes in my hip and foot particularly, but also in pretty much my whole right leg, occasionally areas of my left leg and hip, and in some parts of my back and now left shoulder. This means that while I can definitely feel things, the sensation is greatly reduced. In my right hip for example, I cannot feel a light pinprick or touch at all, it's not until a greater force is applied that I realise something is touching me. There are also spots on my right foot that are the same. If you sit an ice pack on my leg, foot, hip or groin, I really won't feel the cold. In some places it actually feels downright warm.

So where to from here? Well basically we are taking it one day at a time. I have to try and understand and accept the physical limitations that I have, and understand that while the multi-faceted health care approach might help, it also might not. Apparently one third of all neurological 'issues' are functional like this in nature. Some get better, some get worse, some stay the same. There is no pattern, no specific treatment other than what I have already mentioned, and there is no guarantee that life will ever be that same as it was. In fact there is more than a high likelihood that life will never go back to what it used to be. 

There are apparently some new studies that have shown that patients with FND do actually have some physical changes in their brains, but there is still very little known about it. I think I read that 2017 is the first year that FND will be listed on the international register of Neurological Diseases or something along those lines. Basically they have recognised that while in some people there may be an underlying mental health aspect, the majority of people with this disorder don't have any mental health issues. There is a theory that in a lot of cases there was a major traumatic event that triggers this disorder and that is where the Cognitive Therapy may help, but there is also another theory that it could be triggered by an injury instead. So in my particular case, there is a high likelihood that the initial rupture to my disc was the injury that triggered this. 
There is also a theory that it's totally random and there is no rhyme or reason why some people get it and some don't, just like so many other neurological diseases. It's not fair, and it's certainly not fun but we can't change it. For right now, I'm spending the vast majority of my time flat on my back in bed, alternating between doing the PT as per my little chart that the physiotherapist made up for me in hospital, crying from frustration and pain, sleeping and having some pretty insane dreams from all the meds I am on and trying to find a level of optimism that I used to have. 
We are juggling things like looking after the kids, the older ones working, the younger ones just trying to understand without overwhelming them. We are thankful that it's school holidays at the moment, and thankful that the Social One has her drivers' licence. I am back to no driving of course, because even on days where I feel like I might have a bit of control in my foot, it's not worth the risk,, and I'm fairly certain that not only would our car insurance not cover us because of the disorder and the meds, it's probably illegal. So no driving, and I never thought I'd say it, but I am genuinely looking forward to the day when I can ditch the walker and go back to a crutch or walking stick!

Every day is a new chance to improve on the PT from the day before and potentially have some small victory like being able to shower and dress myself without help, or sit for half an hour instead of laying flat. Some days it feels like these little tiny things might work, other days I struggle to even achieve those tiny little 'victories'. We are confident that this is a really bad flare up and once the meds are successful at controlling the pain for a long enough period to give the PT a chance to work my back will feel better and this laying in bed everyday will regress to a memory. Fingers crossed with proper management and lifestyle changes we can reduce severe flare ups like this and can readjust to a relative 'normality'. In the meantime, I guess humour is my best option when I have to walk hunched over with my Zimmer frame, or use a shower seat with handles just to wash myself without falling over, or the multitude of other everyday things that I had taken for granted and now can't do. Being able to laugh at yourself is something I feel like I've been pretty good at, so I guess putting that into action will help. And hey, I guess there's no time like the present to binge watch on Netflix!  

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