As I have written before, I have suffered with headaches, dizziness and migraines for as long as I can remember.
You can catch a brief re-cap of my journey so far here.
This morning I had an appointment with a neurosurgeon and took my Uncle along with me. D and I decided it was best for D to stay at home with H so that at least one of us would be able to concentrate, or at least try to concentrate, on what the neurosurgeon had to say.
The neurosurgeon introduced himself to my Uncle and I as a pediatric neurosurgeon. He could clearly see my brain whirring thinking “Why am I under the care of pediatrics when I am almost thirty years old?” As he went onto explain, many of my conditions are usually picked up in babies or young children. However, in some cases many symptoms remain dormant well into adulthood, if indeed symptoms ever occur. The vast majority of diagnosis that occur in adults are usually incidental, that is to say found whilst investigating something else and people can, on the whole merrily continue with their lives.
Of course, me being me, I have to be unique. Or maybe not quite unique but certainly rare. It is certainly rare to find a person suffering from hydrocephalus, chiari malformation and a large cyrinx. The fact that I have all three makes things complicated.
For example, usual treatment of hydrocephalus would be putting a shunt into my brain to ‘flush’ excess fluid away. Only this isn’t possible due to having had it untreated for so long, one of my ventricles in my brain is almost 10 times the size it should be. To explain, if it was to happen over a short period of time, weeks, months, overnight, a person would most likely die due to the pressure on the brain.
As I explained previously, a cyrinx is a fluid filled cavity in the spine, usually caused by undue pressure put on it. In my case the pressure is caused by the hydrocephalus. In fact, my cyrinx is so large, it goes all the way down my spine which means it is only protected by approximately 5mm of tissue. This means that potentially, even "minor" whiplash, could have quite severe consequences for me. Way to rank up my paranoia over being involved in a road accident hey?! I now assume that one of my dreams, of doing a bungee jump, won't be happening. I was then asked if I had any children or siblings and whether they have the same features as me. Such as protruding eyes, eyes set further apart than normal and no bridge on my nose. And yes they do. H, my brother and one of my sisters. My other sister is technically my half-sister, having a different Dad. The neurosurgeon advised that there are a number of genetic conditions which can cause these features, which may or may not be linked to all of neurological features. My Uncle then mentioned that my brother temporarily lost his vision a few months ago which was put down to extreme high blood pressure and so he was put on tablets, whereas I have unusually low blood pressure. With that, it was suggested that I be referred for genetics screening, most likely H and my siblings will then be tested and given MRIs. So what's next? Another MRI as my last one was in May so we need to find out if there have been any chances in the last 6 months, there definitely have been from the MRI last October to the one in May. Genetics screening to find out if all these things are linked and if so whether my siblings and/or H suffer with it. MRIs for H and my siblings as well. It's been a long, hard slog to get to this point and it seems it is by no means over yet, rather just the beginning. I cried earlier today. Not because of fear or worry. Rather relief. Relief that at long last I might actually get the treatment I need. Relief that actually there may well be hope after all and I won't always panic if I don't have paracetamol or ibuprofen on me. Relief that I may soon be able to stop worrying if I am going to feel faint or light-headed just by picking H up. Most of all I feel vindicated. All life I have had people say, or at least insinuate that I am a hypochondriac. I was in agony during pregnancy and told to get on with it by the people who are meant to love me. I feel like jumping up and down and shouting "I TOLD YOU ALL THERE WAS SOMETHING WRONG WITH ME!" except I can't physically jump up and down. Because, y'know, my spine is filled with fluid.
Unusually for me I am not worrying about what the future holds. I am optimistic actually. Hopeful that if it is discovered there is something genetically wrong, then H and my siblings can be tested or have the MRI scans for the conditions and be treated without having to fight like I have. Without having to go through years of being dismissed, without hearing whispers at work.
What is the most overwhelming thing you have gone through?
Thank you for reading.