Chronic Life: Getting a New Diagnosis

I was 9 years old when I had my first Migraine. By my late teens I had Chronic Migraine (15 days of head pain per month with at least 8 of those being full blown Migraine is the current definition for Chronic Migraine; sadly my migraines have always been significantly more frequent than this). I’ve had periods of Daily Migraine in the years since but now, at the age of 34, I’ve been living with Daily Migraine for the last 3 years or so. Towards the end of 2015 I was also diagnosed with Fibromyalgia, which was the least surprising diagnosis I’ve ever received; it’s not unusual for patients with another flavour of chronic pain to develop Fibro as our Central Nervous Systems no longer know which was is up! 

In the last few months I’ve received a diagnosis that DID come as a bit of a surprise and it’s that one I’d like to focus on in this post.

  

On reviewing an MRI scan I had done in January, my Neurologist and the Neurosurgeon he consulted diagnosed me as having a Chiari Malformation (Type 1). In this post I’ll just give a very basic outline of what that means; I’ll focus on Chiari in more detail in future posts but today my focus is more on the questions and emotions that a new diagnosis can raise.

  
{Diagram from the website of the Mayfield Clinic}

The above picture shows a Chiari Malformation. In a typically developed brain, the entire brain including  the tonsils of the Cerebellum, sits inside the skull. A Chiari Malformation is deemed to be present when the tonsils herniate downwards past the Foramen Magnum into the spinal column by more that 5mm (there is much debate on this amongst specialists as patients can in fact be symptomatic when the number is less than 5 mm). This can have a negative impact on the flow of Cervical Spinal Fluid around the brain. The symptoms can be mild or they can be severe and debilitating – it varies from patient to patient. Keep an eye out for upcoming posts where I’ll talk about Chiari in more depth.

So, after all these years I have a diagnosis of a condition that could be contributing to the really painful & debilitating symptoms that I live with that have thus far been attributed entirely to Chronic Daily Migraine and Fibromyalgia. When I first heard about Chiari, I didn’t even know that the Cerebellum had tonsils, never mind that they can herniate into places they shouldn’t! I thought that the only tonsils I possessed were the ones I had removed after many bouts of tonsillitis.

The thing that has helped me to get to grips with the Chiari diagnosis most is educating myself on it. It has taken quite some time for the MRI scan to get to Neurologist, Neurologist to consult Neurosurgeon,  referral to Neurosurgeon to be processed and for information on these things to be passed on to me. Thankfully I managed to get appointment with Neurosurgeon for later this month. But in a way it’s been a good thing that I’ve had this waiting time over last few months. It gave me the space to find information and video lectures online to help me grasp the basics of what Chiari is, possible symptoms and treatment options. Now when I go to see the Neurosurgeon I should have some idea of what he’s talking about, which I wouldn’t have if I’d seen him immediately after the MRI. What people find reassuring of course varies from person to person but for me, doing some research and learning as much as I can about a new diagnosis stops me feeling helpless.

Getting a new/additional diagnosis when you’re already living with chronic conditions is a mixed bag. On the plus side, it’s better to have a diagnosis because an additional diagnosis may mean new treatment options that could help to improve symptoms. On the other hand it’s strange to suddenly be faced with a condition that you’ve never heard of; my GP hadn’t heard of it either! I think it’s normal to feel shocked and maybe anxious. As I’ve said, chasing down info really helps me personally but some people may also find that social media can be helpful in this scenario. The Spoonie community on Twitter is so welcoming and even if the new diagnosis is a relatively rare condition, you’re bound to find others who also live with it and may have valuable insights to share.

As with many situations in life, I’ve found talking through my concerns re. the Chiari with people close to me to be invaluable. If I fall silent and internalise all these thoughts then my already erratic sleep pattern really suffers. I’ve also begun work on a list of symptoms that I want to discuss with Neurosurgeon and questions I want to ask. I find that writing them down not only helps me to worry less but also makes me feel that I’ll get the most I can from the upcoming appointment. 

If you would like to know more about Chiari, I recommend the videos made by the Chiari and Syringomyelia Foundation  (they also have a YouTube channel)  and Mayfield Chiari Clinic. The Conquer Chiari website is also a great resource.

How do you handle a new diagnosis?

Wishing you good luck and happy days,

Kindra x

Tweet/follow me @chroniccockney

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10 thoughts on “Chronic Life: Getting a New Diagnosis

  1. Ah, it happens I am handling one now–I have Ehlers Danlos Syndrome (EDS) and Reynauds and IBS-D, and have been told I have Chiari 1 but have never looked further, and this past month it was suggested I had Fibromuscular Dysplasia and after two weeks of tests told I didn’t after all. BUT, I have a heart arrhythmia, which I knew, but which I didn’t know was “unusual” and “interesting” and that not only is a cardiac ablation recommended, there are only two regional surgeons who do it in cases such as mine. I’m really quite floored. I find myself discussing it very normally with people, then suddenly feeling like crying because I dropped a paper clip or a student didn’t do well on an assignment. Part of me is completely panicked and overwhelmed and part of me is calmly gliding along, checking my lipstick. It’s odd. I want to talk about it but I not with any of the people who want to talk about it with me. One friend texted, demanding, “When are you having this done? What are you having done? Who is the surgeon? Where?” and I went from giant open would of wanting to talk to tightly sewn clam. I feel like I’m being really contrary as I grapple with what’s coming up.

    Liked by 1 person

    1. Additional diagnoses can really take their toll on the emotional front can’t they? I know what you mean, a string of questions like that would be too much for me at times too. I tend to go mute when feeling overwhelmed so have to keep reminding myself that my husband is always willing to listen if I can just get myself to speak! I find myself getting angry about irrational things too when I’m quietly worrying.
      It adds another layer of anxiety when your situation is one where only certain specialists are going to have a clue what to do for you. Then of course the seemingly endless waiting between appointments means you kind of sleep walk through normal life while the worries keep turning over in the back of your mind.
      If you ever want to just type out your thoughts to someone outside of your life you can always email me at chronicpaincockney@gmail.com x

      Liked by 1 person

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