National Chiari Awareness Month – 2018

National Chiari Awareness Month – 2018

The month of September is Chiari Awareness Month. In May of 2013 I was diagnosed with Chiari 1 Malformation and Syringomyelia and my life since then has changed – tremendously. I remember going recently to a store, because it’s a place I visit regularly – they’re a sweet Vietnamese family, I’ve got the chance to get to know them. We were discussing Chiari the last time I went there, one of the daughters said, ‘besides going to the hospital when I was born, I’ve never been there.’ I was speechless, I know my way around – just about, every hospital in my area, I even know what hospital not to go to because they lack ‘my’ department – neurology. The difference between someone with Chiari Malformation, Syringomyelia, among many other different illnesses, is that we know too well what is like to be at a hospital – while others don’t. It’s an unfortunate truth.

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There are currently four types of Chiari Malformation and each are classified by the severity of the disorder and the parts of the brain that descend into the spinal canal. As you can see, I have type 1, this is when the lower part of the cerebellum called the cerebellar tonsils extends into the foramen magnum. This is where only the spinal cord would otherwise pass through. Chiari unfortunately goes un-diagnosed, and is first noticed during adolescence or adulthood, usually by accident during an examination of another condition. As it happened to me, I went into the ER in May of 2013 for what was suppose to be a quick ‘trip to the ER,’ but turned out to be far more serious than your typical ‘headache.’

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What surgeries have I had for Chiari 1 Malformation and Syringomyelia? As for the Chiari, in May of 2013 I had emergency posterior fossa decompression, here the surgeon created more space for the cerebellum as this relieves pressure on the spinal cord. At this time the surgeon also made an incision on the back of the head and down the neck area, and removed a small portion of the bone at the bottom of the skull, this is called, craniotomy.

In November 2017, for the Syringomyelia, I had spinal laminectomy in which they placed a syrinx shunt – this shunt (a flexible, tube like device, according to my surgeon it’s also less than the size of a hair strand in diameter) will remain in my body forever. The syrinx shunt diverts the fluid from the syrinx into another space in the body where it can be absorbed. There are a few locations where the fluid can be absorbed and this is what differentiates one shunt from another. The shunt I have is absorbed in the peritoneal space, also known as the abdomen. The space location is determined on the patients case and the surgeons personal preference.

Why spread awareness for Chiari Malformation? Without awareness there is no funding, without funding, there is no research, without research, there is no cure, without a cure, there is no hope. However, if not in my lifetime, maybe another’s, but I pray that there will be a cure for Chiari – someday.

Today, I’m still living with a number of ongoing symptoms such as difficulty swallowing, headaches, vertigo, imbalance, difficulty concentrating, etc. which also includes chronic pain. I need to be monitored for changes that can occur in the CSF flow or cerebrospinal fluid. I’m currently experiencing severe numbness on my left side, especially in my face and tongue – you’d never know it if you’d see me. However, I finally have a great neurological team that is helping by monitoring me, via MRI’s and managing my pain levels, via medication, as best as they can. It’ll always be a process, but it’s a process that with patience, it’s as tolerable as it can be.

The perfect cure for worry, is to trust in God. 

And in light of my series ‘Happy Meme Monday’ I’ve decided to include some Chiari Malformation memes. Enjoy.

These memes – sum it all up. Have a blessed Labor Day.

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Visit my online store for Chiari Malformation awareness merchandise.

Random Acts Of Kindness Award | 2018

This is incredible! Such a wonderful way to remember a few positives in our lives. So often it’s easier for me to dwell on what’s going wrong, I forget what’s going right. This is one of those moments. Thank you Stuart this is so amazing – if you haven’t read his post, you must! It’s a true testament of never being alone in your struggles, God is always listening, God is always providing for you and sending His angles to help you. I continue to see His providence in my family – daily.

Here are the rules:

• Tell who you nominate and why.

• Copy and share the picture that shows the award, posted above.

• Share a paragraph of something that impacted your own life in the way of receiving kindness or how you extended kindness to someone else.

• Nominate anyone or share to your own page. If you so choose to Participate. Tag or ping-back to the original person who nominated you, or the original post.

The first act of kindness that came to mind was one from back in 2013. I had just recently been diagnosed with Chiari + Syringomyelia laying in my hospital bed awaiting my decompression surgery. I was feeling so lost and scared – but did well in hiding it all, not wanting to worry my family even more. I had three little ones home at that time, the youngest being 2 years old. My husband although a great support, still had to be home to care for our little ones. When my 8 hour decompression surgery was over, I was in so much pain and still feeling alone and scared. My first night after surgery, not being able to sleep, the night shift nurse came in – she had the sweetest voice, so comforting to hear, began to talk to me. I can tell she wanted to put me at ease and we began conversing. We spoke about our families, she spoke about her baby girl and we continued until she saw that I drifted to sleep. I will always treasure such sweet memory. She was my angel that night, she saw that I had my medicine for my physical pain, but she also wanted to comfort my soul, my heart. There are angels, that I’m sure of.

My nominees:

Julie

 OJSPRIDE

Bethany

Shantanu

Alyssa

Caz

My nominees – as for you too, I admire you all for so many things, but most of all, you encourage me through your wonderful words, your output on life, your perseverance to make things lighter and more positive. Thank you!

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Chiari 1 Malformation and Mental Illness

Chiari 1 Malformation and Mental Illness

While many of doctors that claim to have experience in Arnold Chiari Malformation would still say, Chiari is more “in your head” than anything else or “Chiari doesn’t cause symptoms” –  no further treatments need to be done, I disagree. I still like to describe Chiari as an invisible illness because I look so normal to the person in front of me but even as it goes unseen, it doesn’t mean that the symptoms and pain are psychological. If your current doctor continues to tell you that, “you are OK,” do not hesitate in seeking a second opinion and starting from scratch, find a doctor that does have experience with ACM. I got a second, third and a forth until finally in my search for new doctors, it led me to a great neurosurgeon in my area. Although, I haven’t found any research linking Arnold Chiari Malformation and mental illness, my experience with the disorder has led me to believe that self advocacy and self care is essential. The need to mentally help yourself, is important. I realize that even after having had two surgeries due to Chiari 1 Malformation and Syringomyelia, the mental challenges that come after going through such a traumatic experience is one worth talking about.

Can you remember the day when men dressed in white coats – surgeons, came to your hospital bed side to inform you of your test results, followed by the procedures that you will soon have to endure? Because even after having Chiari decompression and Syringomyelia laminectomy, know that none of these surgeries are a cure, these surgeries are needed just to prevent permanent nerve damage. Also, these surgeries are not a guarantee that they will help alleviate any of the current symptoms. So, whether mental illness has a place in your life, in form of depression, anxiety, social anxiety, baby blues, postpartum depression, autism, post traumatic stress disorder, eating disorder, substance abuse disorder, please know that you are not alone. Also, I encourage you to find your voice and find the courage to get help, professional help. Because like many things, mental illness has no one face, it does not discriminate and it can happen to anyone.

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So, if we’re going to go down this honesty path and I remain true to myself, besides you knowing these tidbits about me, know that aside from being a brain surgery survivor, I have been dealing with depression, social anxiety and agoraphobia since my decompression surgery. Which according to the Webster’s dictionary, agoraphobia is a fear of open spaces, making it difficult for the person to leave their house. Please do not assume that I am cooped up in my home. It just means that it takes me a lot longer to mentally prepare myself to get out of my home and do things the “ordinary” person does so naturally. They include things like attend doctors appointments or go for a quick trip to the store. It can take days to mentally prepare myself to leave my house for a doctors appointment – at times at the end even canceling. These tasks are challenging for me, perhaps you are dealing with a different mental illness.

If you’re asking and wondering how I found all this out. Well, the turning point for me came in form of  a routine neurological visit that led my doctor to suggest I see a psychologist. Of course coming from a family where psychologists were ever mentioned, I immediately got defensive and declined. When the doctor – bless his heart, asked why, I quickly became defensive and said, I am not crazy. He then replied, “I am not crazy either and I see one, because after a 20 year marriage that came to an end, seeing a psychologist was a way I was able to cope.” This made me feel one, not crazy and two, open to the idea of seeing a psychologist. And as 2017, am now seeing a psychologist and psychiatrist, both of which work hand in hand to get me from feeling ill to feeling well. This is something hard to admit because society has placed a negative stigma towards psychology and mental health. It’s something that isn’t spoken about, it’s frowned upon and shamed. The last time I read on someone advocating on mental health was coming upon an article from singer, Demi Lovato. I think being silent on metal illness is so much worse than the topic itself. People build things up inside because they’re afraid, afraid of being embarrassed, humiliated, misunderstood or feeling the wrath that it would potentially bring. I want to embrace not only my new body that has produced six babies to which I proudly wear six scars. But also the scars left behind by Chiari. However, learning how to embrace and accept my new life after my Chiari 1 Malformation diagnosis has been challenging but also life changing. Chiari isn’t for the faint of heart. As part of my Chiari journey I want to feel free to find my voice and speak on how I work daily on my mental wellness. If you’re working on yours, never give up and if you haven’t started, know it’s never too late to start. I’m convinced this disorder is part of my life but definitely not who I am. Let me be the first to acknowledge that God continues to play a huge part in my journey to recovery – maybe not in the most ideal way because I am so flawed! My religion and spiritual beliefs have helped me in my recovery – I am Catholic. Spirituality helps in recovering from things like stress to mental illness. However, I do also believe that aside from my religion, medical help in the form of professional counseling and medicines also help. Mental illness is by no means anything to be ashamed of, seeking help in knowing how to manage it in the best way possible is important for your well being. The main goal is to lead a peaceful, meaningful life and to continue on the road to recovery, that is both spiritual and mental.

Also, know that it’s OK, it’ll all be OK, do not compare yourself to others, to other moms, dads, friends or co-workers, because to others we are either too much or not enough. And that’s OK too.

Happy day friends.

-Ana

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Photo: Pablo Gentile