unite@night

Two weeks from today (June 14, 2014) I will host a walk for Syringomyelia, Chiari and related conditions. I am excited to spread awareness to individuals who have not heard about these conditions. I am also excited to potentially bring together other individuals who have been diagnosed with one of these conditions so we can support one another in our challenges.

After over three years the challenges have not gotten much easier, rather they have just become part of my daily routine. I hope that someday I will be able to be a much stronger advocate for these conditions. I am hopeful the efforts those of us are putting into our charity walks, fundraisers and awareness events will help lead to a cure and/or better treatment possibilities in the future.

If you are interested in participating in the unite@night walk in Luling, Texas, please visit http://unitenight.kintera.org/luling and register as a walker. You can either join the team already in place (Luling unite@night) or you can create your own team. If you raise $50 or more you will receive a unite@night t-shirt and light-up foam stick. Other prizes will be available for those raising more.

I will have a wealth of information to provide to those who participate in the walk. We will have a lot of fun learning about these conditions and being together! I hope to see you there.

What’s that? Oh, it’s just my hand…

So, this is pretty confusing for most to understand so I will try my best to explain this strange phenomenon to you all. I have migraines. When I get migraines, I lose a large portion of my vision almost every time. Yup, vision…gone. It’s really annoying and hard to explain to people.

Have you ever gotten “floaters” or “seen stars?” If you have, multiply that experience by 25,000 and that’s my vision during my migraine. It’s like a giant burst of colorful squiggly moving worms crowding my visual space and impeding my vision. Sounds fun, right?

So what are these amazingly wonderful migraines called? They are called ocular migraines. These cause vision loss or blindness lasting less than an hour, along with or following a migraine headache according to WebMD. Generally, these happen with only one eye being affected. For me, I am lucky enough to have it affect both of my eyes (sometimes simultaneously).

Ocular migraines are rare. They actually only occur in one out of every 200 people diagnosed with migraines. Many doctors suggest these ocular migraines are caused by other conditions. My doctors and I have not confirmed any other possible reason for my migraines besides my syringomyelia and/or my Chiari type 0.

Here are some of the symptoms of the ocular migraines:

·         flashing lights

·         blind spots in your field of vision

·         blindness in the eye

·         vision loss

·         headache (lasting from four to 72 hours)

o    affects one side of your head

o    feels moderately or very painful

o    feels worse when you are physically active

·         nausea

·         vomiting

·         unusual sensitivity to light or sound

As with any migraines, mine has a tell-tell aura. So what’s an aura? These early symptoms, also called a prodrome, are early indicators that a migraine will be visiting you shortly. Many people have auras with their migraines.

Here are some of the symptoms of an aura:

·         blind spots or scotomas

·         blindness in half of your visual field in one or both eyes (hemianopsia)

·         seeing zigzag patterns (fortification)

·         seeing flashing lights (scintilla)

·         feeling prickling skin (paresthesia)

·         weakness

·         seeing things that aren't really there (hallucinations)

My aura? Well, it’s not one of those listed above. My aura is when I look at my hand and discover it feels foreign to me. It appears I lose a little bit of my proprioception. Proprioception is the unconscious perception of movement and spatial orientation arising from stimuli within the body itself.

I can’t explain this feeling very well. All I can say is that I just don’t feel like my hand is mine. I feel it, I can touch it and my senses are there, but my mind does not register it as being mine. This is something my doctor first informed me I would lose if I were to have a shunt placed to drain my syrinx (cyst in my spinal cord – syringomyelia).

The shunt would not remedy the symptoms I have already developed from the spinal cord damage associated with the syringomyelia, but rather would HOPEFULLY prevent further symptoms from developing. So…not really a guarantee things would be better. I guess that’s why I opted to forgo the surgery to place the shunt. If I were to have the shunt placed, I would completely lose my proprioception. So what does that mean for me?

Some symptoms of Proprioceptive processing deficits include:

·         Clumsiness

·         A tendency to fall

·         Minimal crawling when young or difficulty crawling

·         Difficulty manipulating small objects (buttons, snaps),

·         Eating in a sloppy manner

·         Resistance to new motor movement activities

·         Constantly jumping, crashing, and stomping

·         Loves to be squished and get “bear hugs”

·         Prefers tight clothing, loves rough-housing, may be aggressive with other children

·         Bumps into things often

·         Moves in a stiff and/or uncoordinated way

·         Doesn’t know how hard to push on an object

·         Misjudges the weight of an object

·         Breaks objects often

·         Rips paper when erasing pencil marks

·         May tire easily

Obviously, these are not things a 31 year old mother of (soon to be) 5 children would want to lose. I want to be able to dress my babies and I have enough trouble with onesie snaps without a proprioceptive processing deficit!

 

For me, I’ve learned to live with my migraines and, although they are NOT fun, I know they are just part of life for me. This is just something I have lived with since I was in seventh grade. Thirteen years old with vision loss…that was scary! Luckily, my mother got me into the doctor and they let me know it was ocular migraines. Now I can even work through them for the most part. 

 

If you, or a loved one, have been diagnosed with migraines, please feel free to leave me a comment. Although this blog is dedicated to my life with Syringomyelia, I realize I am not defined by that disorder. I have other issues, sometimes linked to syringomyelia, I hope to share with you all, as well.

 

Thanks for reading. Go forth and be well.

 

Sources for blog entry:

http://www.webmd.com/migraines-headaches/guide/ocular-migraine-basics

http://www.thefreedictionary.com/proprioception

http://sensoryprocessingmadesimple.com/the-proprioceptive-system-and-sensory-processing-disorder/ 

Rare Disease Day - February 28th

February 28^th is known as Rare Disease Day. This day is coordinated by EURORDIS to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Wondering what makes a disease “rare?” A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

So in the spirit of Rare Disease Day, I wanted to update you all on my rare disease, syringomyelia. I know many of you have been followers of my blog since I was diagnosed in 2011, but some of you are new and don’t have as much information about Syringomyelia as you perhaps would like. This blog entry is dedicated to letting you all know about this rare disorder and spread awareness.

Syringo-MY-Whatia?

Syringomyelia is pronounced (sear-IN-go-my-EEL-ya). We often call Syringomyelia SM for short. SM is the buildup of fluid inside the spinal cord due to many causes. It can be caused by a blockage due to a Chiari Malformation (CM), trauma, tumors, and other causes. When you are unsure of the origin of the Syringomyelia, they call it “idiopathic.” I have Idiopathic Syringomyelia.

What makes Syringomyelia “rare?”

Duke University conducted an analysis which estimates between 100,000 - 200,000 people in the US may have syringomyelia.

What are the symptoms of Syringomyelia?

Symptoms develop slowly over time, but can come on suddenly after a fall or minor trauma. Sensation may be affected first. Some common symptoms include:

·         Loss of sensitivity to pain and temperature

·         Numbness and tingling

·         Bowel and bladder function may be affected

·         Scoliosis

·         Pain in your neck, arms and back

·         Muscle weakness and wasting (atrophy)

·         Spasticity

·         Paralysis (in severe cases, quadriplegia)

·         Loss of reflexes

·         Stiffness in your back, shoulders, arms and legs

·         Muscle weakness and spasms in your legs

·         Facial pain or numbness

Scoliosis may be the only symptom in children. Often people with scoliosis undergo spinal MR imaging because of an atypical left-sided thoracic curve.

Many individuals suffer from chronic pain and some will develop neuropathic pain syndromes. This type of pain is difficult to treat. A large percentage of people have headaches which can be severe.

How is Syringomyelia diagnosed?

To diagnose syringomyelia, your doctor will begin by asking about your medical history and doing a complete physical examination.

If your doctor suspects syringomyelia, you'll likely undergo a magnetic resonance imaging (MRI) scan of your spine and spinal cord. An MRI is the most reliable tool for diagnosing syringomyelia.

How do I cope with having Syringomyelia?

Living with Syringomyelia and the complications it brings can be very challenging. For me and others I know with the disorder, coping has been very difficult. I am not able to do the things I have in the past nor can I have new adventures (like skydive) due to the disorder. Sometimes it feels like a life sentence without the possibility of parole. Chronic pain affects my everyday life and sometimes keeps me from my loved ones. This breaks my heart and I wish it were different.

I was diagnosed in 2011 and I started searching for support almost immediately. I needed to know that someone was out there who understood what I was going through both physically and emotionally. My family was a great support, but no one had ever dealt with the disorder before my diagnosis. I found several groups on Facebook, through the foundations supporting syringomyelia, and through friendships with others affected.

If you have been diagnosed with Syringomyelia, or any other rare disease, I encourage you to find support. You may not want to reach out to strangers, but I urge you to find a way to cope. This disorder is not easy to live with and it’s important to know, you don’t have to do this alone.

Portions of the above information were gathered by visiting these websites:

http://csfinfo.org/education/patient-information/what-syringomyelia-sm/

http://www.rarediseaseday.org/

https://www.conquerchiari.org/education/syringo-faqs.html

http://asap.org/index.php/disorders/syringomyelia/

http://www.mayoclinic.org/diseases-conditions/syringomyelia/basics/symptoms/con-20034245

http://www.mayoclinic.org/diseases-conditions/syringomyelia/basics/tests-diagnosis/con-20034245