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.

A-

Visit my online store for Chiari Malformation awareness merchandise.

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Blogger Recognition Award 2018

I received this incredible recognition by James, he’s over at Myplace3187. I’m a relatively new blogger and James is one of the first bloggers that I began to follow, since then he’s been an amazing support for my page, as he has for me. Thank you James for it all and for this ‘Blogger Recognition Award.’

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The Rules:

  1. Thank the Blogger who nominated you and provide a link to their blog.
  2. Write a post to show your Award.
  3. Give a brief story of how your blog started.
  4. Give two pieces of advice to New Bloggers
  5. Select 15 or more bloggers for this award.
  6. Let each Nominee know you’ve Nominated them and leave a link to your post.

How I Started Blogging ….

There are a few reasons behind having started this blog, however the main one was bringing awareness to my illness – Chiari 1 Malformation + Syringomyelia. It’s a congenital condition in which the brain tissue extends into the spinal canal. There are 1 in 1,000 people living with this rare condition. The great news – since I started this blog, I’ve connected with so many wonderful fellow ‘Chiarians.’ Although it isn’t a walk in the park, to feel their strength and support is what I’ve been wanting – to connect with those that are walking in my shoes. They are the reasons for this blog.

I’m also often called mom by six tiny humans and wife by a Marine veteran. So, here you will find a glimpse of my life, all that’s in between and my life with chronic pain.

Two Pieces of Advice For New Bloggers ….

  1. Definitely try not look at your stats – says the one that just looked at her stats! I know it’s hard, I know it’s there, I know numbers ‘don’t lie’ however those numbers will break you on a bad day. Keep focused, have patience and the rest will follow.
  2. Have a good thing ‘going’?! Don’t be afraid to monetize from your blog. Yes, I love to blog, I enjoy writing and if you have been a follower of mine, you’ve noticed that I have three days out of the week where I will absolutely try my best to blog because it helps me keep myself on track. My life is a bit busy so I appreciate a good schedule. However, with that said, blogging is a lot of work, hours, at times researching and overall time consuming! Shocker, I know! So, if you love what you’re doing, you’re spending countless – perhaps hours a week, preparing a post, I say, bring on the money! Look into getting paid for doing what you love. As a stay at home mom, this blog has been the first thing – besides my my online store, to get my focus away from the home. So, if we can incorporate our ‘work’ and passion or love, and find an opportunity to monetize off it, I say, try it – do it! I’m still trying to get there, it’s definitely a slow process but it’s a process none the less. As they say, ‘you never know until you try.’ Is profiting off your blog something you’re doing or thought of doing – I’d like to know your thoughts on that. Thanks in advance!

My Nominees Are:

The Eclectic Contrarian

Simply Chronically Ill

God’s Whispers Of Truth

OJs Pride

Loudest Minds

Invisibly Me

Fight MS Daily

Journie 2 Woman

Wonky Brain Blog

Something To Stu Over

To my nominees, know that I enjoy your blog and that I appreciate you!

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Life Perspective After Chiari + Syringomyelia Diagnosis

When I was diagnosed and operated for Chiari 1 Malformation I had three young little ones, my oldest being in kindergarten at the time. So, I arrived to the ER in May 2013 and never imagined the diagnosis that would result from that visit.  You can read more in depth of my story in my post titled In 2013 Life Began with Chiari + Syringomyelia So, after the neurosurgeon came in to my hospital room and told me I needed emergency Craniotomy or brain surgery, I requested to leave home to get things in order before the surgery. The mom in me wasn’t ready for surgery, I wanted to get the house in order before my absence. I can’t ever seem to get my mind to stop, it just never stops. I was in observation for a couple days before my surgery day and during this time I was able to do homework with my daughter from my hospital bed. I was also able to inform her school of the situation that the family and I were having. It really did take a village to get through surgery and recovery.

 

Then you fast forward to 2017 when I had Laminectomy surgery for Syringomyelia, this time I had six little ones – and still do. The recovery hasn’t been easy but it’s also helped me see my husband and the little faces of God’s perfect creation looking back at me. Children really do give you the inner strength you thought wasn’t in you, the courage and fight you thought you didn’t have. I now, few years later look at this disease in a different perspective. I’m not well, probably won’t ever will be and that’s OK. It’s about accepting things for what they are and stop trying to change things that can not.  If I decide to physically shop at a store, I have to know the store, I have to know the layout, so that my shopping trip is as quick as possible. I like to call this my new normal as opposed to something being wrong. There is no normal, there is no right or wrong way your health should be. Also, know that you don’t have to try to make other’s understand what you’re going through, try to explain this rare disorder you find yourself living with. This could be such a burden and so frustrating. If you have even one person you can rely on, that’s great and if you know of another Chiarian, lean on them! Also, feel free to be present in your pain, know it’s OK to not have a good day when living with Chiari, especially when this disease is physically unseen, it’s an unseen disability.

-Ana

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Syringomyelia – MRI Post Surgery

I had an MRI following my November 7, 2017 Syringomyelia surgery. I had a syringo peritoneal-shunt placed, this shunt will remain in my body forever. This is the procedure that helps divert fluid from one space to another. The name for the shunt is given by the doctor and it’s based on where they start and end. The decision to do this procedure depends on the person’s health situation and the surgeons preference. A syrinx is also most commonly known to be a side effect from another health condition, in my case, I have Syringomyelia because I have Chiari 1 Malformation. A way the doctor would know if a syrinx is present is by performing an MRI of the spine. When I was diagnosed In 2013 Life Began with Chiari + Syringomyelia an MRI of the entire spine was immediately ordered to look for syrinxes. My most recent MRI was done a couple of weeks ago and shows how my syringo peritoneal-shunt has been diverted successfully to the peritoneal space or my abdomen.  It’s always good to continue to check on the shunt because it can fail after having had successfully worked. The failure of the shunt working may be due to various reasons one, the catheter becoming clogged and can no longer able to divert the fluid from one space to another. This failure in the shunt can be seen by MRI, the shunt will show being refilled with fluid or enlarged. However, one way of knowing a failure in the shunt is that you will notice the symptoms returning. My recovery from Syringomyelia surgery is expected to take about a year. I’m still feeling the numbness on my left side, weakness in my legs, numbness in my neck area and back which can only be described as cape like, among other things. The neuropathic pain I have is a type of pain that is difficult to treat as this is damage caused to the nervous system. However, it is found to be common in Syringomyelia patients.  As far as knowing for sure the long-term outcome after surgery, for Chiari related Syringomyelia although surgery will reduce the syrinx, research has shown to stop it from growing 80% of the time. Surgery however still doesn’t always provide significant improvements in symptoms and many people will still experience pain and other symptoms after surgery.

February 2018 Post Surgical MRI

MRI – On the right showing syrinx and on the left showing post surgical placement of shunt.

-Ana

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In 2013 Life Began with Chiari + Syringomyelia

As short as I’d like this post to be, I have an inkling of a feeling it’ll be anything but. However, my goal is to try to be as thorough as I can, starting from the beginning of my journey with the disease. A little history of my health, as far back as I can remember as a child and adolescent, I had ongoing headaches and migraines. As my mom would later realize, she’d give me Tylenol just so that I could get through school hours without having a headache mid day. My first episode to what we know now to have been Chiari 1 Malformation, unfortunately went undiagnosed at the hospital. After many tests, I was sent home with what they said was a migraine. This is unfortunate but true to many Chiarians. So after I had a second episode we decided to now go to a different hospital. The official diagnosis came in May 5, 2013 when what was supposed to be a quick trip to the ER, would be the trip that ultimately changed my life. The reason for the ER trip, muscle weakness, problems with coordination, trouble walking, blurred vision, seeing blotchy black spots, sensitive to light, sensitive to noise, dizziness, headache, vomiting and nausea, vertigo, decreased sensation on my left side and trouble swallowing. Things like bending forward, pulling, pushing, straining, lifting became intolerable. After blood work, CT Scan and MRI the diagnosis was Chiari 1 Malformation and Syringomyelia.

We’ll go through a quick crash course for this rare disease, Chiari 1 Malformation is a condition in which brain tissue extends out of the skull causing it to press downward into your spinal canal, present at birth. What does this mean you ask, basically the brain is too big for the skull and it’s causing the brain to stick out or herniate at the base of the skull causing pressure to the spine, my cerebellar descended 12.8 mm downward.

As to Syringomyelia, this is a rare disorder in which a cyst forms within your spinal cord. This fluid-filled cyst or syrinx, can expand over time and compress and damage part of your spinal cord from its center outward. My syrinx began at C3 to the top of T2. You must know that in most circumstances, to have a syrinx present is considered to be a side effect of another problem, in my case, Chiari. The surgery that one can have to relieve the pressure in the head caused by Chiari is decompression surgery.

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What is decompression surgery? I’ll go a little more in depth with my personal 2013 decompression surgery for Chiari. I’ll give you small snippets of what was done inside the operating room. While I was fully sedated, endotracheal intubation was done by the anesthesia team. The eyes are then taped shut and I was placed on the Jackson table with Wilson frame. The head was clamped in the Mayfield 3-pin head holder and affixed to the bed. Then, moving the neck slightly forward, the hair is now clipped and/or shaved with a hair clipper. The surgeon now makes a mid-line skin incision from the back of neck area up to the head to release pressure at the base of the skull. This is done by sawing off bone, opening the dura and then closing the dura matter with a patch. The bone would not be returned back to area. Because the cerebellar tonsils descent or herniation was significant – 12.8 mm to be exact, the decision was made to shrink the tonsils. They removed the tonsils and cerebellar tissue by a few mm’s on each side. A dural repair graft was sewn in to achieve further dural compression and the dura was stitched closed. Lastly, I was then  flipped over to a regular bed and extubated before leaving the operating room. The patient would have a hospital stay of a couple days – mine was 15 days. The neurosurgeon on call the day I arrived at the ER on May 6, 2013 would also be my surgeon on May 9, 2013, surgery day. After my discharge and before my post operative follow up visit with the surgeon, I was admitted to the ER twice, both times diagnosed with aseptic meningitis also known as viral meningitis. Note that viral meningitis is more common and less severe than bacterial meningitis. I was also placed on medications to help with the anxiety that followed from surgery, pain medications and muscle relaxers.

Although I was also diagnosed with Syringomyelia at the same time as Chiari, the surgeon did not attempt to touch this at this time. He mentioned that addressing the Syringomyelia would be  too risky – but aren’t all surgeries risky?

Please keep in mind that I am not a doctor by any means and by writing this, I am expressing my personal experience with the disease. The one of many obstacles Chiarian’s face is that it seems as if no one has ever even heard of these conditions. The lack of general awareness Chiari has, has encouraged me to be a voice and help spread awareness – hence the reason behind creating this blog. Because ultimately this can become a burden – huge, to patients trying to inform family, loved ones, friends, co-workers etc., about what they go through. Where do you begin, how to even explain?! Also, as you may already know, be informed that like any surgery there are potential risks and other procedures may be needed in the future even after a successfully performed decompression.

So, fast forward to 2017, endless complaints to my neurologist and surgeon regarding my 2013 diagnosis of Syringomyelia, all of which assured me all was good. I was still since my 2013 diagnosis, experiencing ongoing symptoms, had countless ER trips, on many pain medications that I decided to make a change. I changed hospitals, doctors and started from zero. I then visited multiple doctors in different hospitals, had MRI’s done for all of them and all of which said to continue medication and that addressing the Syringomyelia surgically would be too much of a risk. Finally after having a borderline break down came a break through. I remembered and decided to reach out to a surgeon I had researched in 2013 after my decompression, Dr. Barth Green, a neurosurgeon. His office isn’t too far from where I live in Florida and so I made the decision to call his office. I had a lot of digging to do first for the neurologist Dr. Martinez-Arizala -they work in the same office. He first needed to see my medical records to determine if my case would be moved to surgeon Dr. Green for final evaluation. The process would take weeks. Yes, this is the system and this is the way things operate. This meant I had to go back to the hospital where I had decompression surgery to gather it all. I had to get all of my records, from MRI’s to CT scans, all to be saved on CD’s, this included before and after surgery, any and all medical records, operative report, all doctors notes, etc. etc.! All. Of. It. He wanted to see it all! Thankfully all was not in vain, I was called by the surgeons nurse to come in and meet with Dr. Green soon after all my medical records were sent. He had already evaluated my case/records on our initial visit and recommended laminectomy with a possible shunting of the cyst, meaning placing a shunt was a possibility. They say, “possible shunting” because even after having done an MRI prior to surgery, the final decision is made at the time of surgery. There is really no way of knowing what the doctor is dealing with until he opens – too graphic! Sorry! The date of surgery was on November 7, 2017 and here laminectomy was performed and a syrinx shunt was placed. The syrinx shunt diverts the fluid from the syrinx into another space where it can be absorbed. There’s 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 or abdomen. The space location is determined on the patients case and the surgeons personal preference.

I appreciate you coming this far in the post and following my journey. Those of you that can tolerate not so pleasant images, I share some pictures of my hospital stay following my most recent November 7, 2017 surgery for Syringomyelia.

Xo – Ana

 

 Pictures following my November 7, 2017 surgery for Syringomyelia