Saturday, September 28, 2013

Chiari Awareness Month

Ok ... I don't know what is going on today, but it seems like I am destined to spend all day on this blog post.  I've been trying to carefully consider the words I want to use on my final post of 2013's Chiari Awareness Month.  And in the process, I have actually inadvertently published my page twice already.  That is so bizarre.  So I've deleted it twice (changing the title along the way) and here I am for a third time.  Hopefully this will be my last attempt at this post :)

I was inspired to create one more Chiari-related art piece to go along with the end of my Chiari Journey story.  This piece honors all of those Chiari patients who came before me and have endured hours of surgery and months of recovery.  Historically, Chiari surgery has been extremely traumatic.  Brain surgery usually is.  This one requires the patients to have a large section of hair on the back of their head shaved and a minimum of a 6-inch vertical incision down the center of the back of their head and neck.  As they recover, the scar looks very much like a zipper.  Thus, Chiari surgery patients often refer to themselves as "Zipperheads".  Today's project features a zipper I recently found in my local craft store's clearance aisle and a stamp that simply states "You leave me in stitches".  Here's to you, my fellow Chiarians!!

I got a little carried away with my crafting on this project.  I tried a little bit of everything on this piece ... sewing, stenciling, painting, inking, stamping, sanding, buttons, zippers, paper, flowers, taping, tearing, ... ok you get the picture.  The whole piece began with that clearance aisle zipper.  I knew I wanted it to hold the entire piece together.  So I grabbed some of my Tim Holtz Kraft resist paper, cut off a 5-inch strip and then cut that strip in half.  I glued the edges of the zipper to my two strips of paper.  I then used a Martha Stewart punch that creates an border with a zig-zag pattern made out of tiny holes.  This created holes for my stitches (sewn with black embroidery thread).  To bring out the resist words and numbers on the paper, I covered the paper with Pumice Stone and Walnut Stain Distress Stains.  I sanded the border.  The zipper almost disappeared because it started off its life as a brown zipper.  So, I took some silver alcohol ink additive and painted the zipper silver.  You can actually see the zipper now in the pic to the right.  Stamped the left side with a Tim Holtz ruler stamp (thinking about how long those zipper scars are) in Aged Mahogany Distress Ink and then clear embossed the stamped image.  I also stamped some splatters on both sides of the paper to grunge it up a bit more.  I added some distressed scissors tape on the left side and outlined it with Black Soot Distress Markers and a waterbrush.  I grunged and stamped a grosgrain ribbon and put it on the right side.  A couple of Recollections button embellishments were attached to the ribbon at the top.  Part of a wrinkled, grunged Websters Pages ribbon was layered underneath the kraft paper and then a strip of torn, grunged patterned paper was layered underneath that. 

I backed all of these layers with a piece of mint green cardstock.  I mixed some Picket Fence Distress Paint with Old Paper Distress Ink on my craft sheet.  I dipped some large swirled stamps in this mixture and did some "sloppy" stamping on the card stock.  I then used an ink blending tool and added Weathered Wood, Iced Spruce, and Pumice Stone Distress Ink over the paper to bring out the stamped images.  The swirls turned out a little too "white" for such a grungy piece, so I took my Antique Linen Distress Marker and colored over the stamped images a couple of times.  It seemed to tone the swirls down nicely.  I stamped some splatters in archival ink and then I stamped around the edges with a cross stitch stamp in Distress Embossing Ink (embossed the stitches with a black embossing powder).  Then ... my Tim Holtz Splatters Stencil arrived and I had to use it!!!  Yes, I'm getting ready for Creative Chemistry 102 (hope to see many of you there on Oct 7th) and I went in debt a little more to add this stencil to my list of supplies.  I used an ink blending tool and added the rings to the background with Walnut Stain Distress Paint.  I then went back over the edges with my Walnut Stain Distress Marker.  I thought it looked very much like the coffee I spilled on some papers a few days ago.  Sand paper, some serious creasing, and Pumice Stone ink were used to distress the edges.

I then grabbed some coordinating paper from my Paper Studio paper stash to create my "you leave me in stitches" sentiment.  I distressed the papers, stamped the sentiment, stitches and buttons, then embellished them with some flowers, pearls and a safety pin that colored with red alcohol ink.

The bottom left hand corner was emblished with some floral elements and a button that I alcohol inked.  And I added a great little sticker that I found in A Splash of Color Mixed Media 101 Journey stickers.  Thought it was perfect for this blog entry.  Another sticker from this set decorates the burlap canvas heart that you can see in the first picture at the top of this post.  I used a small wooded spool and needle to wrapped with black embroidery floss to finish up the embellishment on this project.  Here's another view of the complete project:

Well, that completes my description of my latest project.  It's a mess ... but it's my mess :)

The rest of this post will bring you up to speed on my own Chiari Journey.  If you aren't interested, thanks for dropping and checking out this piece.  I hope to see you later.

For those who have been following my story, here we go ...

Mary Elizabeth's Chiari Story ... continued:

I saw my neurologist before going to NY for my Chiari Institute (TCI) appointment.  He conducted an EMG and nerve study to rule out carpal tunnel.  We were both surprised that I couldn’t feel anything when the needle went into the muscles on my upper left arm and shoulder.  My neurologist said I seemed to have a classic Chiari “cape” of sensation loss.  This was somewhat of a revelation for him.  All of the tests indicated that my problems were not with the muscles or nerves in my arms, but seemed to be coming from my spinal cord.

Meeting with Dr Bolognese at TCI was a bit of a shock.  As usual, I had a headache, so it took some time to process everything.  Fortunately I had one of my best friends with me (my roommate from college who had been diagnosed with a Chiari Malformation a few years earlier) to make sense of everything.  Dr Bolognese confirmed that I also had a Chiari I Malformation.  It almost felt as if he was clairvoyant.  He told me things about myself that he couldn’t have known (like the fact that my headaches were one-sided) because I didn’t report it to anyone at TCI and things I didn’t even know myself (like the fact that I had problems swallowing and it had come on so slowly that I wasn’t even aware of it).  He said that my Chiari was “bear-hugging” my spinal cord (blocking CSF flow) and that it was asymmetric (longer on the left side than on the right  -- hence the headaches on the left side of my head).  I felt such relief to finally have an explanation!

Then there were those fateful words … “ but that’s not all”.  I had another problem.  On the back side of my spinal cord was the Chiari.  On the opposite side, I have a retroflexed odontoid.  Dr Bolognese explained that this normally vertical bone supports the skull on a person’s neck, but mine was leaning backwards and sometimes it wobbles and rubs against my spinal cord.  So, this also was also causing some of my problems.    Dr Bolognese said that my spinal cord was “literally between a rock and hard place”.  That little piece of information sent me into a tailspin.   I was not prepared for this new weirdo thing that was wrong with me or for the next discussion that we had about possible surgery.

Dr B said that we had two surgical treatment options.  The first option would be to do two operations at one time: a decompression for the Chiari (making more room for spinal fluid flow) and craniocervical fusion (where he would support the skull on my neck with two metal rods, one on each side of my spine, which would be screwed into several vertebrae and into my skull).  That really sounded terrifying.  He said that the fusion surgery would limit the range of motion of my head by 50% in all directions. Or … our second option would be to do just the decompression surgery and wait to see if the spinal cord moves away from the odontoid as a result of having more room after the Chiari was removed.

As I mentioned earlier in this post, traditional Chiari decompression surgery is quite a big deal.  The reason there is such a big incision is because the surgeon usually removes a piece bone at the base of the skull to make more room in the skull for all of the brain tissue.  The back of the brain usually moves back up into the skull and cerebral spinal fluid (CSF) flow improves. Dr. Bolognese went on to say that a traditional decompression surgery really was not an option for me.  If he went in and removed the bones to make room for the back of my brain (as the NC neurosurgeon described to me earlier), he would have to make a fairly large incision that would disrupt the neck muscles and connective tissues that were currently keeping my skull stable on my neck (they were taking up the slack left by the retroflexed odontoid).  In that case, I would probably be back in the hospital within a couple of months because I would not be able to lift my head.  So, he was planned to do a relatively new type of Posterior Fossa Decompression surgery that would be minimally invasive, meaning that he would disrupt those supporting structures as little as possible in getting access to the Chiari Malformation. 

Here is how he described this new technique to me.  He would start by making a small incision just long enough to get access to the bottom of my skull and the top of my C1 vertebrae.  Then he would shave off about a millimeter of bone at the bottom of my skull and a millimeter of bone at the top of C1.  He then planned to work in that small window between the skull and C1 to burn out the offending Chiari and amputate the burned tissue. (Dr B did later say that this brain tissue really wasn’t used for anything.  Honestly!  He could have said that 15 minutes earlier before he ever used the term “amputate” in regard to my brain!)  Anyway, this would be quite a tedious surgery.  There was a major artery to avoid and it’s a very small space to work in.  It would take a significant amount of time to do this surgery. 

At the end of our conversation, (which took about an hour – I have never had a doctor take that much time with me), Dr. Bolognese said that he really couldn’t recommend one surgical option over the other at this point.  I had to make the decision.  I went back home to think.  I knew I had to do something. That was a no-brainer (no pun intended).  I was becoming incapacitated by my headaches and that is never good when one is a teacher.  And the numbness in my arms was alarming.   We finally decided that we would just go with the decompression surgery and see how things pan out later with the odontoid.

My Posterior Fossa Decompression surgery on January 10, 2012 took 7.5 hours to complete.  I had several blood vessels intertwined around my Chiari that had to be systematically moved.  My incision was about 2 inches long.  I'm not a true zipperhead like so many of fellow Chiarians.  My family said it was so good to see me after the surgery, but it was hard to recognize me with all the swelling around my neck and face (as a result of lying face-down all that time and the surgical trauma around my neck area).  In less than twelve hours, I was out of Neuro ICU.  I was up walking the halls the very next day.  On the second day after surgery, Dr. B had me running (well … not really … it was more like slowly shuffling) up and down a flight of stairs.  I spent a total of five days in the hospital and another two at the Variety House across the street from hospital.  I was on a plane home to NC seven days after surgery.

I have felt the best in the last two years that I have in decades.   I have not had a single bad “migraine”-like headache since the surgery.  I’m completely amazed. I truly realized the extent of this miracle when my brother asked me if I had anything that he could take for a headache.  I reached for my purse and suddenly realized that I did not have any pain relievers in my purse.  In fact, I had stopped carrying my ever-present Excedrin Migraine bottle months earlier

Dr Bolognese was elated at my 3-month follow-up appointment.  The odontoid bone did not move much as a result of the surgery.  I need to point out that I do not seem to have one of the connective tissue disorders known as Ehlers-Danlos Syndrome (EDS) that can make the odontoid bone very unstable. 

However, I am afraid that I may have to have the fusion surgery in the near future.  In March of this year, I started losing feeling in both of my hands.  I have some decreased sensation in my fingers.  Functionally, they are fine.  I drop things occasionally and I hurt myself without knowing it every once in a while.  I could live with that.  However, a couple of weeks ago, I lost feeling in my right foot.  It terrified me.  I've got most of my feeling back, but the right side (just under my ankle is still completely numb.  I went for another brain MRI on Monday.  I meet with my neurologist this Friday to see if I need to make an appointment with Dr B again.  Sigh.  It's ok.  It is what it is.  I'd just like to stay away from surgery for awhile longer. :)

So, there’s my story.  Even without the issues from the Retroflexed Odontoid, I know I will always have symptoms.  There is no “cure” for a Chiari Malformation.  Damage has already been done.  But I am so much better now!!!  I now know the source of all my strange ailments; that in itself is priceless.

I hope you haven't been too bored.  Thanks for letting me get this out of my system.  Now ... back to my craft room.  I have more images swimming around in my imagination that are dying to be let out!  Wishing you all a fabulous weekend.  -- Mary Elizabeth


butterfly said...

Words aren't really enough to respond to such an extraordinary story - I can't imagine the relief of a diagnosis (and jeepers, what are the chances of college roommates both having Chiari malformations?) followed by a decision of that magnitude. You're right - the word "amputation" applied to one's brain would definitely send you into meltdown...

And while I'm happy that the first surgery was so successful, I'm so sorry to hear you seem to be heading back for more... and I do wish you so much luck with the next stages as they unfold.

But in the meantime, what an astounding make - and in the same way that your story is full of extraordinary elements, this make is full of amazing details and ideas. What a fantastic post altogether. Thank you.
Alison xx

barbarayaya62 said...

Mary Elizabeth your story is amazing! It moved me, and I hope everything can go for you in the best possible way! You are amazing, you have a very strong character and I love the way you tackle your story! Even if you do not know you personally, but only virtually, I respect you and feel for you true friendship, I like to know that we have affinity .... I'm glad you've put in your zip a fantastic job! You know what I like! BArbarayaya

Paper Profusion said...

Gosh Mary Elizabeth what trauma in itself to go through a) all the years of illness, b) receive this additional diagnosis and c) have to decide yourself which surgery to go for (including brain amputation!). I completely understand how the Chiari diagnosis would be a welcome relief / vindication however.

What a terrifying surgery - thank goodness that overall you have had such a positive result. I'm so sorry that more lies ahead for you - it is great however that you are in such 'good surgical hands'.

Your creation speaks volumes about the condition. It's an astounding make with wonderful symbolism and tremedous range of techniques and details. I definitely wouln't call it a mess!! It's BRILLIANT art.

Nicola x

die amelie said...

LOVE your "little bits of everything" on this piece, Mary Elizabeth!

They go together perfectly and your make is pure eye-candy! So much to discover and for the eyes to wander around! Beautiful!

die amelie x

Anonymous said...

hi mary elizabeth, i am glad to hear your surgery helped with your pain, and my prayers are with you as you move into this next phase. i just wanted to visit you here and tell you your projects are beautiful. i will put you in my feedly.