Sunday stories is a series on my blog where every week a different person talks about their condition (physical, mental etc.), shares their story and raise awareness. For the past 5 years I've used my blog as a space where I could do just that but I wanted to extend things even further to allow others to talk and raise awareness of their conditions. I'm really excited to introduce everyone to you! Today Kindra is sharing her story and journey with Chiari and Intercranial Hypertension, I'll hand things over to her!
Can you tell us a bit about your conditions and how you were diagnosed?
I have Chiari Malformation Type 1, Intracranial Hypertension and Chronic Migraine (sometimes referred to as Chronic Daily Migraine). I've lived with debilitating Migraine since childhood but they have grown in severity and frequency over the years. The Chiari was diagnosed via an MRI which I requested in January 2016 and the Intracranial Hypertension was diagnosed in August. The IH was identified through ICP monitoring (requested by my Neurosurgeon) which involves drilling a little hole in skull and putting a monitoring thing in there for 24 hours or more; sounds grim but actually it wasn't quite as bad as I expected!
The Chiari Malformation diagnosis was both a shock and a 'ah ha, that makes sense' moment. In a patient with Chiari, the base of the cerebellum doesn't sit neatly inside the skull as it should; instead, it herniates downwards, out through the hole at the base of skull where it has no business being. This can do bad things to the flow of CSF around the brain and cause a number of problems for the patient, not least of which is the potential for developing Syringomyelia (pockets of spinal fluid that grow on the spinal cord and can do a lot of damage). It is not unusual for Chiari patients to find that they have a problem with pressure inside their head; in my case, the pressure is too high.
Getting the Chiari and IH diagnoses took some processing - the question I keep coming back to is 'why did it take decades of debilitating symptoms before these conditions were identified?'. I think I'll always have Migraine in some form as I've clearly inherited it, but the Chronic Migraine diagnosis allowed the Chiari and IH to go unnoticed; every symptom, even those that didn't quite fit, were dumped on the Migraine pile. Still, I'm focusing on moving forward. I have surgery scheduled to insert a VP shunt into my brain to drain excess CSF and address the high pressure. I'll also then have the option to go ahead with decompression surgery a year later, to treat (but sadly not cure) the Chiari. My surgeries have to be done in this order as the decompression is deemed to risky to do without addressing high pressure first. So it's a bit of a long road I'm on but I just have to take it one step at a time and know that I'm doing everything I can to try to improve my quality of life in the long run.
How do your conditions affect you on a daily basis?
I'm largely housebound and spend most of my life lying in the dark. My 10 year teaching career came to a screeching halt back in Jan 2014 and my condition has declined steeply since then. The symptoms that are the most debilitating for me are head and neck pain, photophobia, nausea, vomiting, dizziness, neck spasms and fatigue. My quality of life is pretty woeful - it's for this reason that I'm willing to go ahead with the surgeries; I have to try to claw back some sort of functionality, both for my own sake and for my daughter and husband.
Do you have any tips for someone who is newly diagnosed?
Firstly, try not to panic in the face of the unknown - do a little research. I recommend checking out the YouTube channel of the charity Chiari & Syringomyelia Foundation. They have a range of video lectures that really helped me to get to grips with what Chiari was when I was first diagnosed . It's important to be informed as it will help you to advocate for yourself if you need to - Chiari is a condition that some doctors haven't heard of or don't really understand. Even those who are specialists admit that there is a lot about Chiari that we don't yet know. But when it comes to meeting with Neurologists and Neurosurgeons, it helps to have already done a little reading and have your questions ready.
I think it's important to get opinion(s) from specialists who have dealt with lots of Chiari patients before. It's worth taking the time to identify such specialists and get yourself referred to one. With the best will in the world, all Neuros/Neurosurgeons do not have equal insight and experience into Chiari, which is completely understandable.
What is one thing you would like people to remember about your conditions?
I'd like people to understand that these conditions are not something that can be overcome by 'trying harder' or 'thinking positive'. Nor are they present because I 'need to relax'. People with Chiari are often misdiagnosed more than once before the Chiari is identified, myself included, so I have no patience left for the implication that my illness is in fact mental or emotional. I'd advise anyone wanting to support someone who has Chiari to just be there with love, a good listening ear & company rather than trying to 'fix' the person - let the Neuros/Neurosurgeons handle treatment. A patient with symptomatic Chiari will often have been through the mill and had their symptoms questioned or dismissed over many years - ironically many of us have been told that 'it's all in your head'. So, along with so many other spoonies out there, I'd like people understand that these conditions are chronic and not something that we volunteered for. We're all working with our specialists to achieve the best possible outcomes having been dealt a tough hand on the health front.
You can follow Kindra on Twitter, Instagram and Youtube, she also has her own blog too, take a look! You can find support and more information on the Chiari and Syringomyelia Foundation website.