I think we grow up with faith in the medical approach to health care. Medicine is often viewed as being able to 'cure' or 'treat' anything and everything. There are millions of people being kept alive by medicine and others who have exhausted pharmaceutical options for their illness or disease. I started on a combination of medications that, at the time, I thought was really frightening. I was rarely seen taking pain relief for a headache prior to this, so with hindsight any regular medication was going to be unwelcome. I didn't hesitate though. I had taken my first few pills 6 hours after Harry's birth. As time went on, some drugs were gradually increased while others were replaced by much stronger and harder to tolerate medicine. Most of these I had only administered to patients who were acutely ill or dying, which did make me wonder how someone, otherwise relatively fit and well had ended up taking such a horrible cocktail of drugs. Some are licensed for epilepsy, others for palliative care, some for MS, and one for mental health conditions. They were also found, in studies, to have 'good' results for treating neuropathic pain. I still worry, when a warning label reminds you that it is unsafe to flush your medication down the toilet, why someone would consider it safe for me to put into my body! However, when you have severe, debilitating pain, you stop questioning the logic and the reason and find yourself desperate and more than willing to take anything you're given. Pain management try every procedure possible to treat your pain, sometimes with success, others are less fortunate. Not only do you end up on a worrying cocktail of medication, some that your body is addicted too, others that require regular blood tests to make sure they aren't damaging your liver or kidneys and most with horrendous, life changing side effects.
So what happens when you have exhausted all the possible pharmaceutical options for your nerve pain and you have run out of options? This is the situation I find myself in and, until recently I was beginning to wonder whether there would ever be any hope at all.
I don't go out any more. Every move I make increases my pain level, even reaching to put my seatbelt on causes another electric shock across my face. If the wind blows and brushes my face it almost makes my legs buckle underneath me with the pain. The stores have either heating or air conditioning, which always triggers a flare up and the difference in temperature makes the pain rage. Each footstep I make causes a pounding, pounding sensation in my cheek and upper teeth and anything that makes my heart rate increase causes more stabbing sensations across the left side of my face. I'd take a shower but I'm beginning to wonder if those days are gone now as the shower head cannot be aiming at my face. I even feel the trickle of the water running down my cheek, which causes discomfort. So now I have baths, which aren't too bad in the Winter months, but are a nuisance in the Summer. This pain is so debilitating, it leaves you scared to move, unable to go out, unhelpful in daily chores and reluctant to do anything or go anywhere. Sometimes you are unable to sit up, other times unable to lay down and sleep is usually disrupted making for very long, lonely painful nights. I cannot chew anything that is slightly too 'chewy', lift anything too heavy, do too much talking, especially on the phone, bend over, move too quickly or tolerate any kind of heat. I have a burning sensation in my cheek and under my eye, a stabbing feeling in my ear, electric shocks across my face, severe pain in my top jaw and teeth and pain into my nose. I refuse to make plans, because I cannot predict how I will be on that day and over the years I've lost friends and family members because they don't understand. The pain is often too much to bear, which leads to further episodes of depression and that causes even more reluctance to try anything. Every single day I feel completely useless.
Ironically, that is only the impact of the pain. There are even more problems caused by side effects of the medication. Everybody is an individual and everyone will react differently to each drug, so nothing you read in the patient information leaflets can tell you how YOU will react. Personally I have experienced a lot of weight gain from the insatiable hunger caused by one of the tablets I take. I am constantly sweating from another, I'm drowsy at best, my short term memory is dreadful, I have tingling sensations throughout my body, I get shaky, nauseous, my skin itches, I have a dry mouth, altered blood results leaving me permanently anaemic...to name but a few!
As a result I have been left with very little hope, for now or the future. I follow current research and read about new trials taking place for treating nerve pain. But as time passes, Harry gets older and the more I miss. More importantly, the more HE misses, because if I were well, or better than I am now, maybe I would be able to do more than sit and watch the day go by. With little hope on my side I paid privately to see a Neurologist, not something my own Doctor thought was necessary because he said 'it won't change anything'. But in my constant battle I search for answers, especially an organic cause for the pain. The Neurologist ordered 2 MRI's, one of my brain to look for MS plaques and the other a cross section of the area around my trigeminal nerve. I was so sure there would be nothing to report on the scans, because that is often the case with facial pain. However, the first scan was clear thankfully, the second showed a large blood vessel (artery) pressing on my trigeminal nerve. After all this time, there in front of me was a written report that could explain my pain. He referred me to the Neurosurgeon.
My appointment with the Neurosurgeon caused a lot of anxiety. He was either going to offer me some hope or remind me, as many had before him, that there wasn't any. However, he offered me surgery. Micro-vascular decompression (MVD) is basically brain surgery where they start off making an S shaped incision on your scalp, drilling into the skull, getting behind the brain stem to reach the trigeminal nerve where they separate the nerve and the vessel and put in some Teflon to prevent the nerve being put under the same pressure. The risks are substantial and the Neurosurgeon was very blunt about that. However, it is brain surgery and there are bound to be more potential complications than having your tonsils removed. Unfortunately the outcome is unpredictable. For some it gives complete relief over time, others get some relief, there are those that get no relief at all and other people who have had an MVD only to find they have even more symptoms and problems than they did before.
There is a small chance that having the MVD could give me the opportunity to live again, to free myself of some, if not all the medication and to be able to do more with my life and my family. However, there is also the chance that it could leave me much worse off than I am now. A decision needs to be made...
