It Feels Like I'm Starting Again

It might seem like an exaggeration, but in the last 12 months I have attempted to write a blog entry, only to find I haven't the energy, the patience, or at times, anything new to say. When you bear in mind that a blog is like a diary of events that you feel safe to share with others, I think that says a lot about my life and the isolation I live with.

Over the last 3 years I have come to 'know' my own face. Despite disliking everything about it, I know it well and that makes me very aware of new or changing sensations. I have recently been diagnosed with Cluster Headaches, but somehow that diagnosis doesn't seem to fit. I have also struggled to get an actual 'name' for the burning, dragging numbness in my face. I've had no answers from my own Neurosurgeon, in fact he referred to it as 'unfortunate'. Not to state the flipping obvious, but unfortunate just tells me it wasn't a planned outcome, it doesn't begin to tell me what it is or how to treat it. I have hardly talked to a GP since the one I really felt safe with left the practice a few years ago. The GP that I'm registered with has had some issue with me for a while, so I've felt unable to see him and talk to him. I've relied on telephone calls rather than GP visits. Also, starting to see different Doctors and feeling desperate to find one that listens, understands and wants to help takes up a tremendous amount of energy. Having to tell your story over and over again, is really difficult, but it's essential if you want answers. Sometimes, on this journey with chronic pain, it's alright to stop, rest for a while and then start the search again when you feel ready. I've met so many people along the way who don't allow themselves this time to rest and keep searching, travelling and hoping for answers; in the end, it is the very search itself that makes them feel hopeless and desperate.

Earlier this year I knew I needed to find someone who had a good, if not excellent understanding of TN. The Pain Management Dr I've been seeing has very little knowledge of facial pain but also, gives the impression that he just doesn't want to be there. Rather than discuss my issues, I tend to talk and cry and he tends to 'grunt'. I have no idea if this is in agreement with anything I've said or if he's even aware of what I'm saying. Knowing that this Dr is my only hope for adequate pain relief hasn't helped at all and at times I've felt really desperate for someone to help me, that I've found myself battling more and more depression. It was the realisation that he is never going to help and the serious bouts of depression that made me start to look for someone new.

After reading about different Neurologists, Neurosurgeons and Pain Management Specialists, I found someone who, from the information available to me, appeared to specialise in cases similar to mine. I decided to be proactive and called his Secretary. To my surprise he had availability just a few weeks later at a private hospital in Bristol. 

It was a long, painful journey down to Bristol, as I've only been in the car for a maximum of 15 minutes in over 3 years, but, this Dr finally gave me some answers and some options to explore. He actually couldn't say whether I had TN because he wasn't able to examine my face with any accuracy. My trigeminal nerve is permanently damaged and I do have Anaesthesia Dolorosa (AD), which occurs in less than 1% of people who have a Microvascular Decompression surgery (MVD). This was why he couldn't do a thorough examination of my face.

The Columbia University describe AD as, 'One of the most dreaded complications of the treatment of trigeminal neuralgia.  It occurs when the trigeminal nerve is damaged by surgery or physical trauma, resulting in numbness in the face, with pain present within the numb area. The two main symptoms of AD are facial numbness (much like the numbness from a dental anesthetic injection) and constant pain.  The pain is usually burning, pulling or stabbing but can also include a sharp, stinging, shooting or electrical component. Pressure and “heaviness” can also be part of the pain symptoms. Often there is eye pain.  Cold increases the feeling of numbness sometimes making the face feel frozen'.

I've read a lot about AD since my surgery so the diagnosis wasn't a shock. It was disappointing, because I know there's no treatment and they were words I've been dreading to hear. He did tell me that he's performed Deep Brain Stimulation (DBS) on 4 patients with similar symptoms and all are doing well. However, he also told me that DBS isn't funded by NHS England and that it would cost me £25,000 - £30,000. It's a very long, complicated surgery (some of which I would be awake for) and with no guaranteed outcome it feels far too risky and terrifying. My feelings may change, but I cannot imagine having surgery of any sort, let alone a much riskier brain surgery.

I was also told that I have Occipital Neuralgia (ON). This has occurred following my MVD. The nerve has possibly been damaged during the craniotomy or it has adhered itself to the scar tissue. ON causes pain across one side of your scalp and in my case it radiates from my neck and ends in my forehead, just above my eyebrow. It is a very strong, debilitating pain, making the scalp very sensitive to touch and has similar electric shock like symptoms as TN but over and across your scalp. This diagnosis was a shock and this was when I found out that I don't have Cluster Headaches. He was able to examine my scar and the area surrounding the occipital nerve. He told me that post craniotomy ON is rare, but it does happen. I seem determined to be in the 'rare' group for everything when it comes to anything to do with my MVD and I have to admit I'm angry and frustrated about that.

This Dr recommended Inpatient Pain Management Therapy, but as yet I haven't managed to find anywhere local that runs a programme like this. I can only imagine that weaning off medications and titrating new ones is a very different experience as an inpatient. There would be someone there to talk to about side effects or to decide that a certain medication isn't going to suit you. Treatments for side effects, support, one to one therapy and maybe, ending up on a cocktail of medication that has better results and improves quality of life. This is what I'm hoping inpatient pain management could offer and that gives me hope. 

Why then, if I have a little hope, do I feel so depressed?