Myelomalacia

So after my wonderful trip to the Emerald City, I was finally granted the MRI from the Insurance companies.

For the first time they actually had to redo a set of images as the myoclonus even in its tamest tends to give me trembles. While I wasn’t expecting the worst, I knew it was the best. Sure enough C3/C4 finally went from bulge a year ago to blown. Something I expected… just not this soon. What was worse is the damage got its label as a myelomalacia at C6 – and by all accounts it not good – it’s essentially a piece of cord that’s essentially short circuiting constantly on hyper drive.

This explains my extreme fatigue and pain I wouldn’t wish on my worst enemy (not that I’d have one anyways, just not my cup of tea), the myoclonus jerks and trembling hands that reminds me of my ex husbands late great aunts bout with Parkinson’s, my bladder issues, all of my clumsiness and inability to walk unassisted by a cane to keep the stability and prevent as many falls as I can.

Although the wizard remains optimistic as it hasn’t spread, story is not progressive as of yet, and hopefully it will remain that way, as it’s kept in the back of my head that myelomalcias can ascend upwards, so in essence once it hits C3/C4 it will paralyze my diaphragm and I will be unable to breathe on my own. While no new compressions, c3/c4 herniation is touching the outside sac that the spinal cord resides in, as well in part of my fusion.

So essentially squeaking by the neurosurgeons table for now. Both the neurologist and the spinal pain management doctor recommended to go see the neurosurgeon, which I’m really not inclined to do until we get closer to that, just yet anyway. If there isn’t compression he won’t want to operate and I’m not going to waste that talented mans time who is well known in the neurosurgeon community here, in Chicagoland.

But it would be wrong to admit that the fact C3/C4 has finally blown and is still quite possible to compress the spinal cord is not exactly giving me the warm fuzzy feeling. I keep thinking stable is good. I can live with a stable myelomalcia, and I can live with additional fusions if and when the time comes.

Until that day I will continue to go to my various physical therapy, my counseling to keep my head on straight, along with my meditation that I’ve been slacking on, sticking to a strict medication schedule (Currently managing 11 prescriptions as of today) and while I’m sure I will fall short of all my New Years goals due to set back after set back, I’m still hoping to finish a quilt, a craft that I had just started to getting into before the house landed in Oz.

That is my hope. And hope is all I have that can’t be taken away, even though its simply not possible to have some days that it feels horribly hopeless being trapped in a body that you no longer have full control of, but I will continue to wrestle those days as they come along.

I found this on YouTube and if you’re interested on learning more, take a peek at this quick video.

Feel My Pain – Myelomalacia

We’re Off To See The Wizard – The Wonderful Wizard of Oz

So unfortunately this Dorothy with her Ruby Red cane is going to see the wizard (aka the Neurologist) tomorrow as I've noticed some changes in my condition since my last bathroom spill in the bathroom which was over 2 months ago.

To be fair, Glenda (My Primary Doctor), wanted me to get another MRI since it had been 10 months since my last one. And wouldn't you know it, my insurance company aka Flying Monkeys, said I didn't qualify and Glenda told me to go see the Wizard because he would have more pull with those annoying creatures.

And I put it off as long as I didn't feel any worse and thought it was proactive but I would still approach it with the wizard at my next appointment which was only a couple more weeks away from now.

But then that green wench cackled at me and sent numbness down my right arm where I couldn't feel my fingers at all – not a good sign even in the smallest of realms. Combined that with subtle changes of existing symptoms finally made me do the right thing and follow the yellow brick road to the Emerald City where all my doctors live.

As I poured over all my latest imaging for clues, using meditation to keep the anxiety to a minimal amount – as stress mixed with what equates to a major power line with a short in it does me no favors and takes no prisoners even on good days.

Because of my case being unusual for the diagnosis because of my age, no trauma, and not a lot of symptoms that shot up red flags for
Myelopathy, it laid undiscovered most likely for years. Which unfortunately that is what myelopathy is good at – masking its identity because the symptoms can be so subtle that the root cause isn't found for a while so most myelopathy patients have permanent damage, the only question that remains is how bad.

For example, you wake up one morning like you slept on your neck the wrong way – and after it doesn't go away your doctor orders X-rays that show arthritis and bone spurs. Is your doctor going to think you have a spinal cord injury based on some
neck pain and imaging shows arthritis? Probably not. That's why it's rarely found immediately because it's so subtle, and usually by the time it rears its ugly head – guess what … you will most likely have some degree of permanent damage.

The spinal cord is an amazing tissue/organ. It starts at your brain stem and is about 1/2" and gradually gets as thinner as less and less information "signals" need to get passed the further down your body. It is a your main electric highway of signals that branch off of cord from nerves that give your body every sensation you feel – from the sand under your feet, to a bulging bladder seeking a restroom while you're doing the PP Dance, to every ache and pain you feel.

That's a lot of information for a pipe only 1/2" in diameter – and that's just in your neck. It actually splits off into branches at the end in the beginning of your lumber region. Which makes it a lot harder to get cord compression in your lower back. It's actually incredibly awesome the way we were built as humans when you look at the anatomy of the spinal cord and how it branches off to every part of your body.

Today I'm just grateful that I'm here and can still walk as my cord was essentially kinked or "buckled" in one space and flattened in 2 others – and with the amount of data flowing through this amazing conduit I choose to be thankful that I can still feel – even if it's only pain.

Courage

Everyday is filled with questions that center around this disease that has irrevocably changed my life forever.

  • What’s the weather forecast?  Humid, Hot, Cold, Rain. Snow – Guarnteed bad pain day.
  • Will I actually get quality sleep?
  • Who will I lash out at?  (Not that they have done something wrong, it’s my frustation with my disease)
  • Will I notice a new symptom or an increase in an already present symptom?
  • When will the next relatively good day be pain wise?
  • When is the next blow going to hit me like a shock wave?

It isn’t hard to wrap your head around being in pain constantly when it’s your reality – what is hard is trying to find the courage to continue to try and have meaningful experiences with a positive attitude.  

It’s absolutely excruciating to not be able to take my son on vacations or even a museum just because I wouldn’t be able to walk and stand for even an hour.  That doesn’t even take into account the pain that comes from transit – even little bumps in the road or ripples in the roads that most people can’t even feel.  It breaks my heart that I’ve gone from high energy used to travel every year to there are days I can’t even leave my bed.  My interactions with my son have been the biggest casualty of this disease.  He is fortunate that his father has made sure he doesn’t go without those experiences that no doubt will shape him as he transitions throughout life.

Every week I see my counselor and she has been a god sent.  By far the emotional collateral damage is exponentially worse than the physical.  The logical side of me which was my primary skill I used in my career so I’m well versed, understands everything in black and white and this entire disease’s effects into all my areas of my life is an easy to accept.  The emotional carnage is murkier than the Muddy Mississippi and emotionally I teeter between denial and anger.  She definitely has her work cut out for her.

Yes I feel robbed and cheated, but I feel that my family – especially my son who is my North Star, has been cheated the worse.  That makes me very angry.  My pregnancy was full of complications.  There was even a time during the first complication the doctors feared they may even lose me, but I didn’t care about me, I was willing to sacrifice myself for him.  I fought very hard to bring him and keep him in this world – even then he was still 8 weeks early.  He spent his first Christmas and New Years Day in NICU – certainly not what any parent wants for their child.  His first 4 years was a constant rotation of doctors and countless medications and breathing treatments.  Then the clouds lifted and life was finally perfect and peaceful at least for a while.

Now I find myself in shambles – like that rickety bridge you contemplate crossing.  There’s a part of me that doesn’t want my son to see me deteriorate into a soul trapped in a broken body that can’t be fixed.  I don’t want that to be his most prominent memories of me.  But being that this started when he was 11 – I’m forced to concede that I don’t have any choice in that matter.  I don’t want to be his burden, even if it’s out of love.

But for now, he gives me the courage to face another painful day.  

Insomnia Really Is A Pain In The Neck!

“Life isn’t about waiting for the storm to pass, its learning to dance in the rain”

One of the more annoying symptoms I have on a regular basis is insomnia.  The annoying part is if I can’t sleep because of pain then as the length of insomnia increases…. so will the pain and then I’m left to be an unwilling participant on this vicious merry-go-round.  On the positive side, I saw this quote and thought it would be perfect for this tidbit. 

Oddly enough I don’t ever remember suffering from insomnia.  Sure, when my ex husband and I became parents to a preemie who was constantly in and out of several doctor offices for the first 4 years – then I’m certain we both felt like we were going to die of sleep deprivation, at least at some points in that roller coaster.   But I’m chalking that up as normal for NICU parents.

So safely ruling that out I don’t believe the insomnia started until well after  I woke up with a kink in my neck that never went away.  It probably didn’t help matters that the following year my emotional well-being would be tested in ways I never could predicted.  I will say I’ve thought about some of the what ifs like if I wasn’t going through a divorce with a small child at that time, would my neck pains have been caught early enough that I wouldn’t stand here with a scar on my throat, the huge titanium plate inside of my neck (that cost more than my new car!), and the myelopathy that has plagued me since it lit up the MRI and my pain was finally given a name.  Or was it all part of some master plan?  (I’m still looking for the complaints department to demand a refund!) 😊

I think it’s perfectly normal to play the what if game.  Maybe this is a touch of the bargaining game of grief.  But something deep inside me thinks this happened to me for a reason – that it would be the biggest test of my life thus far: to accept that I never will have a pain free day ever again.

That’s a tall order, even for someone like me.  Up until I was given the news of the severity of the situation and that I would require immediate surgery, I had a lot of storms pass through my short life; and I always came out a better person because of the experience – no matter what the cost was to me emotionally or spiritually.

So why is it hard to comprehend that this storm is the black rain cloud that will follow my every move?  I’m not even remotely sure that I have the answer this early, but at least I know to put rain boots on my proverbial shopping list and keep coaching myself on the mantra:  Progress – Not Perfection!

Rikki 🌙

Finding Peace At Square One

Well I’m happy that I’ve been putting a lot of effort into the 5 goals I’ve set for this year. It was also suggested that I write a book or start a blog exclusively on Myelopathy. Which is honestly a good idea, and not just for me, but if others can learn from my experiences it very well be a win/win for all.

At the start of this journey, I will tell you that myelopathy and what that truely meant was non existent in the beginning – even when it was evident that I would require surgery and what the recovery would like. The most common things I was able to read about via the online community or personal stories shared on YouTube prior to the surgery were:

  • Basic anatomy of the neck including discs and vertebrae. Their names and locations.
  • Degenerative Disc Disease (DDD)
  • Anterior Cervical Dissection & Fusion surgery (Commonly called ACDF).
  • Recovery time from ACDF surgery and the most post op symptoms like difficulty swallowing, etc.
  • Bone Growth Stimulators (Commonly used after multi-level ACDF to aid bone growth).
  • Loss of some range of motion in the neck and commonly expect 10-15 degrees per level of fusion.

Unfortunately there wasn’t a lot of information out there for myelopathy patients. I think part of that is myelopathy isn’t all that commonly seen – at least from the physical therapists I’ve spoken to.  

When one needs an ACDF surgery, I imagine most people can pinpoint the exact point where they got hurt. I remember the discussion I had with my neurosurgeon regarding the cord compression that I had as a result of 3 completely herinated (or blown) discs. I was told that if it’s caught soon enough (i.e. less than 6 months) that often times the signal loss in the cord is resolved and people will often make a full recovery, which they consider inflammation of the cord when it resolves. It’s when the signal loss does not resolve by 12 months, is it only then considered permanent damage and is called myelopathy.

What threw me for the surprise of my life was because the symptoms of myelopathy manifest in many different ways and areas of the body, that I don’t think a complete comprehensive guide could ever be written because the spinal cord is essentially “short circuiting”.

Aside from the chronic pain I experience on a daily basis, it would be the symptoms that would pop up out of the clear blue and there wasn’t much out there that would really help me on my path. So writing about these experiences may be a worthwhile experience. Time will tell.

-Rikki