Five Years After Diagnosis

Five years ago, today (St. Patrick's Day), I was diagnosed with syringomyelia. Some days it feels like it was just yesterday, others feel like it’s been decades. It’s a struggle everyday, but I am still here and I am still pushing to find a cure (or at least an effective treatment).

Over the last five years I have tried countless prescription medications, herbal remedies, and other treatments for the syringomyelia and it’s effects on my body. I have not, yet, been successful in finding a full proof method of ridding myself of the pain, numbness, weakness, and other symptoms syringomyelia has created for me in my life. With the help of essential oils the headaches have lessened, but not disappeared. I also have burning pain in my face several times per week. I’ve started losing feeling in my left arm, which is a relatively new occurrence.

I have also worked very hard to raise awareness and fundraise to support the research dedicated to neurological conditions such as the syringomyelia and chiari (type 0) I live with. I am going on my third year as a chairperson for a unite@night walk with the Chiari & Syringomyelia Foundation (CSF). Each year gets a little better and we raise awareness for people who have never heard of these conditions before. My walk this year will be on May 14, 2016. You can find more information about it here: http://unitenight.kintera.org/luling

The struggle comes when I am reminded how the damage is irreversible and my conditions are inoperable. Doctors indicated I am not a candidate for a shunt for my syrinx (cyst inside my spinal cord) without causing even more damage (and leaving me paralyzed at minimum). I am also not a candidate for the decompression surgery for chiari because, although it causes horrible headaches and other symptoms, my flow is not bad enough for the decompression to do much good. Due to the lack of change in my syrinx, doctors have told me they no longer need to see me unless things change significantly. They uttered the words everyone with a chronic illness dreads, “there’s nothing more I can do to help you.” That’s a hard pill to swallow.

Each year brings both great joy and great sorrow. I am so thankful my syrinx has not changed significantly in the past five years (it has only changed from c5-t5 to c4-t5 - one vertebrae). Unfortunately, the damage from the syrinx is done and cannot be reversed. So with every passing year I look back and am so thankful it has not gotten larger, but I have to remember size actually doesn’t matter when it comes to syrinx. It’s something I have to remind family members, medical professionals, and peers. I’ve known people with a 2mm syrinx who are completely unable to function and people with a syrinx the entire length of their spine with no presenting symptoms. Size truly doesn’t matter.

Those of us with syringomyelia are all unique. Not one of us has the same exact set of symptoms, but we all have one thing in common - we fight for a cure, we fight for our lives. I continue to strive to provide advocacy and awareness for these conditions and will continue to do so until the day I am no longer on this earth. I hope you will join me on my journey for a cure.

Stay strong, live life, be bold, FIGHT BACK! -Misti

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 

CRUSHED IT! $700 for a CURE!

September is over and so ends the 2013 Crush Chiari campaign for Chiari and Syringomyelia awareness sponsored by the Chiari and Syringomyelia Foundation (CSF). This year was my first to participate as a fundraiser and although I know I drove most of you crazy with my incessant posting, I wanted to share my gratitude with you all for your support. The funds donated through the jars have been tallied and donated to the fundraising site. Those of you who supported me in the Crush Chiari campaign raised $700 to go for a cure! You helped me exceed my goal by $200 and have allowed me the opportunity to be one of the top fundraisers for the cause!

The overall Crush Chiari goal was $15,000 and, although we did not reach that goal, you all helped us raise a lot of money for a good cause. As of this evening CSF has raised $1,665 (11.1% of their goal). Please know that YOUR support helped the foundation raise over 42% of that money by supporting me through my fundraising page.

I want to especially thank the locations who allowed me to place my donation jars at their locations, those of you who donated directly on the #CrushChiari website, those who gave through the donation jars and, most especially, those of you who spread the word by teaching others about these conditions. The support I was given last Wednesday for the wear purple for a cure day was so humbling for me! Those of you who wore purple showed how much you truly cared about me and my desire to find a cure for those of us with this condition. The flood of purple did the trick because every time someone would see those of us matching in our purple attire we could explain how we matched due to the Chiari Awareness Month and we could tell them about Chiari. That was what the whole campaign was about. Thank you for helping me realize my vision!!

I’d like to take this time to thank my family for their dedication to helping me raise money for this campaign despite all of the setbacks we encountered this month. Justin Hair, Ginger & Jim Powell, Amber Love, and Stephanie & Aaron Powell have been the epitome of family during this time. They helped me drop off jars, pick them up, pester you all with posts about awareness and donated not only funds, but their time to support me in this cause. They did this even as I underwent my open-heart surgery last week because they knew how much this campaign truly meant to me. Their support should most definitely be recognized!

The following businesses allowed me to place jars at their locations raising $151.80 collectively for a cure:

Cowboy's General Store

Dismuke’s Pharmacy

Luling Tire & Automotive

NAPA Auto Parts - Salt Flat Feed & Mercantile

Stanley Theater Collectibles

Taqueria Durango

Texas Lutheran University Bookstore

The Watermelon Shop

Plans for Future Fundraising and Awareness for Chiari and Syringomyelia:

Unite@Night, June 2014:

I will be participating in the Unite@Night Walk with the CSF Foundation in June of 2014. I have not selected a date for this walk, yet; however, I would LOVE for you to all participate with me. Here is information from their website about the walk:

“The Chiari & Syringomyelia Foundation’s (CSF) unite@night is a one-mile casual evening walk in various locations around the country and in Canada during the month of June. This walk will bring together people who are suffering with devastating effects of Chiari malformation, syringomyelia, and related disorders such as, but not limited to: Ehlers-Danlos Syndrome, hydrocephalus, intracranial hypertension, dysautonomia, and more.”

You can find more information on their website here: http://www.csfinfo.org/walk-information1/.

Crush Chiari, September 2014:

If you would like to participate in next year’s #CrushChiari campaign by allowing me to place a jar at your business, please send me a message. You can place a jar at your business for any length of time you wish. If you would like to participate only in September, that is fine; however, some have asked to allow the to keep one of my jars at their location year round to raise as much money as possible. I would be happy to make a jar for your location. It won’t cost you anything except counter space and the funds go directly to a great cause!

Conquer Chiari Walk Across America, September 20, 2014:

I plan to do a national walk in September next year to spread awareness about Chiari and Syringomyelia. I will be attempting to set up a walk in the Austin Area. Anyone who wants to help is welcome to contact me. We will begin the process of finding locations in Austin in January. Here is more information:

“The Conquer Chiari Walk Across America is an annual fundraising and awareness event comprised of a series of local walks held on the same day.”

To find out more information about this please visit the website: http://www.conquerchiari.org/ccwaa/ccwaa-main.html.

I don’t plan to give up fighting for a cure for any of these conditions. Chiari and Syringomyelia are a part of my life, despite my utter distain for them, and I want to help others who also have to deal with these situations to have a running start. Raising awareness and funding research is the best way I know to do this at this time. I will continue to fight until a cure is found…and maybe then, I’ll fight to ensure everyone can get the cure no matter his or her financial background. I’ve got a lot of work ahead of me…care to join?

Thanks again for your support!