Brain surgery anyone?

There are two types of surgery I said I never wanted to need in my life: eye surgery and brain surgery. Eye surgery took place early in 2016 and brain surgery … well, spoiler alert for this post: early 2019.

Yep! It turns out that my brain is too big for my skull, or my head is too small… either way, 2019 looks to be the year of neurosurgery for me.

In May of this year we discovered that I have Chiari Malformation. Essentially, part of my brain is herniating down my spinal column through what is called the foramen magnum: the hole in the back of the head. I spent a good 4 hours laughing about it and then a few days singing ‘Brainstem’ from Pinky and the Brain (see: https://www.youtube.com/watch?v=snO68aJTOpM).

see http://www.chiariaustralia.com.au

My foramen magnum is half the size of that of a grown woman and therefore already struggles to allow room for the brain stem and spinal cord to pass through. Add in the crowding of the cerebral tonsils and we have some issues.

You know the saying “I need this like I need a hole in my head”? Turns out I need a bigger hole!

The other complication is that the anterior part of my spine at the top of C1/2 (dens/odontoid) is deformed and pushing on the brain stem and further crowding the space of the foramen magnum. I certainly don’t do anything by halves.

There is a very crowded space where the brain stem should ‘float’ freely in cerebral spinal fluid (CSF). What I’m left with then, is compression of the brain stem and spinal cord as well as a reduced flow or blockage of CSF at that point. Welcome constant and persistent headaches that when at their ‘best’ must be straight from the pit of hell (read: severe neck pain, high pressure in the head, tinnitus,…); as well as dizziness, blurry vision, peripheral neuropathy, balance/coordination issues, breathing regulation and swallowing issues… just to name a few.  Oh yeah, and the beginnings of memory recall issues … one of my worst nightmares. Fun stuff.

Admittedly, the diagnosis came as a massive relief. Whilst completely left of field as it was an incidental finding, it explains the nightmarish headaches of the last 30 years. Too often have I asked to drill a hole in my head to relieve pressure, or simply cried that I would rather die than endure the pain. It is somewhat satisfying to know why I get them and why certain activities exacerbate them.

In late October, decompression surgery or neck to skull fusion were put on the table as options to prevent further damage and reduce the persistent headaches. The fusion is by far the scariest option and threw me for six for a short time. I had never considered that fusion might be needed. I can’t imagine not being able to move my neck, even with my current limitation.

Long story very short, I found an amazing neurosurgeon who sought advice from others in her field to ensure we take the best step forward. She recently told me to go and enjoy a good holiday for Christmas with the kids and plans to conduct decompression surgery early in 2019. This will mean removing part of my skull, possibly part of my spine (C1/2), resecting or shrinking part of the brain and then putting a patch in to close everything up. We’ll then need to monitor and pray that there is no further deforming of the spine so that I can avoid a neck to skull fusion.

I am, however, excited at the prospect of getting rid of these headaches that I’m convinced only those with CM will understand. I’m also extremely thankful to have found a neurosurgeon that I trust and with whom I had an instant rapport. She is amazing and has even agreed to operate in the public system at the RAH. Praise God for these mercies!

So, to my local friends: I’m sorry if I have forgotten anything this year. It has been and I’m sure will continue to be a bit of a ride. I’ve still tried to be present but there have been some distractions.

As for life at the moment: I’m trying to take one day at a time. Some are much better than others. I’m no stranger to pain and complications, but this is a bit more than I am used to!

I don’t have a date yet, but when I do I’ll be sure to let friends and family know. I am thinking we might need a bit of help along the way. Those that know me well are aware that there is a bit of control freak in me … maybe I’ll finally learn to let go. I suspect this will bring a whole new level of vulnerability.

Peace and health to you all

– Ang xx
Psalm 73:26

PS.   For those who are game to watch, this is the basic procedure : https://www.youtube.com/watch?v=x3l2YMUuwfs&feature=youtu.be&fbclid=IwAR2CtRj6V1E-IGagaPvmvnwwKoN73XX4InaE5egCuF6yMsjGU15sfwf38M0

 

 

I’ve been here before …

I’ve been here before. Pain unrelenting, rising and falling unpredictably, bringing life to a halt. Flashes of pain strike like lightning to cripple each moment. Stiffness screaming for relief while straining for every inch of movement.

I’ve been here before. Tears flowing down my face at 3am while the rest of the world sleeps. Uncomfortable no matter how I place myself. Pain shouting louder, as it does with most things after midnight. How long will it last this time? When will relief come?

I’ve been here before. The isolation and discomfort. Watching the world go by as life gives way to survival. Bystanders confused as to why these bones don’t bounce like the rest; unaware of the complications of a chronic illness, poor immune system and low bone density. Once again, that which sounds simple is not. There is good reason why I’ve been told not to fall.

I’ve been here before. Disappointment and cancellations. Struggling to let go of expectations of the ‘shoulds’ and ‘have to’s’ of life. Letting down the family yet again. Or at least that how it feels sometimes. Trying desperately hard to keep going where it really counts. Playing games on the bed and reading books. Being available for a cuddle. If I can grimace through the pain.

I’ve been here before. Coping with moments and with days but days turn to weeks and weeks may turn to months. As the mental drain ebbs and flows, the torment of the mind is often greater than the pain. The exhaustion of pain begging for rest that doesn’t come.

I’ve been here before. Whether days, weeks or months, I know the pain will ease. Or at least, I live with hope that life will resume again and rebuilding will take place.

I’ve been here before.  Though I don’t want to be here and it’s hard to endure yet again, I know there is grace enough to withstand even amidst tears.  The sun will rise on a new day and joy will return. The waiting is the hard bit…

Psalm 30:5

Ang xx

“This too shall pass – it might pass like a kidney stone, but it will pass!”
– unknown author

20 weeks and doing the rehab dance…

It’s been 20 weeks since foot surgery.  20 long weeks.  Most of those have been spent non weight bearing, and hoping for a quick recovery when the time for rehab comes. 

I went in for surgery knowing that I could never fully “prepare” for what was to come.  No matter how many surgical procedures I’ve had before,  this one was a dive into unknown and rather scary territory for me.  Noone could tell me what it would be like,  how long recovery would take or how I could manage day to day tasks post operatively. They didn’t mention the struggle I’d endure,  though I was not naive.  The battle in recovery is more often a mental one first.  The physical follows on good time. 

With difficulty and weakness in my hands,  crutches were unrealistic in the early days.  Although, if I had the qualities of the hospital physio I’d be walking 4 months ago.  He seemed to think that I could manage on my own after seeing me struggle to get into a wheelchair from the bed.  Once.  Apparently once is enough to satisfy the powers that be that I no longer need support. Never mind that I  couldn’t stand,  get to the loo,  navigate the room. Or that meds were as yet unsorted. 

Thank God for the advocacy of an anaesthetic doctor.  Though a stranger to me,  he saw me struggling and stepped in to fight behalf.  

Sorry.  I digress… 

The path has been long.  Days become weeks,  weeks turn to months.  Walking is still a dream,  though ìn a good moment I can walk about 20 paces.  There’s no guarantee I’ll be able to do it two days in a row,  though. It seems I’m in a dance.  I wish I knew the pattern.  Some days I can stand for a bit,  others not so much at all.  Some days I can shuffle-walk a little, while other days I regret trying the day before. 

Rehab takes on many forms and may take a long time.  For the mostpart, the pain is a reminder that things are getting better.  “Good pain”, as it were. Sometimes,  however,  the pain is disconcerting and makes me question every move I have made,  and even the decision to go ahead with surgery.  

I know this will pass, and I certainly hope that I will look back on it in a few years time and call it one of the best things I’ve ever done.  

But,  it’s hard and I’m tired.  Really, really tired.  

How much longer?  How much more? 

I guess that’s a question we ask frequently.  How long?  

As long as it takes.  We will endure.  There is grace enough for each day,  if we’ll let it.  If I’ll let it. 

One step at a time

I met a guy today  who had an ankle reconstruction 3 or 4 months ago.  He was walking and seemed to be doing well.  He spoke of the struggles of being in the boot and how it was difficult to get started walking again,  particularly with the rearranging of the tendons.

I’m happy for him. He’s been through his journey and come through the other side. It gives me a glimpse of hope that it is possible.  Although the surgery was different to mine,  it presented similar struggles.

But then,  there’s a part of me that grieves.  It’s now been over 16 weeks since I last walked and I’m struggling to keep my head together. I want to be better.  I want to “move on”. I want my independence back!

I think the biggest battle is in my head,  not in my foot.  The foot hurts, for sure,  but the head can take me much farther than my feet ever will. It has the power to make or break each moment.

I took a walk with crutches around 10 days ago and it set me back.  I was crippled in bed for 4 days.  Too much, too soon.  It seems I can’t just “get back into it”: not that I was completely naive.

Facing rehab is hard, especially with little guidance.  The “go at your own pace” usually works for me,  but this time finds me anguishing for more.  The pain in the foot is piercing; the tendons and muscles ache and cramp as though I’ve hiked for hours.  All this for just standing up.

Baby steps, I tell myself.  Get stronger every day.  One day at a time.  One attempt at a time.  It’s slow.  So very slow.

It will get easier.  It will get better.  I will walk again. I know that. But for now,  I’m keeping it real and letting you know that it’s bloody hard. My patience is only a strength to a point! My “bad” day has stretched into a few … and these four walls are driving me nuts.

Ever felt that way?

I’ll try to keep dancing in my head.  We’ll have a “walk again” party soon enough. Until next time … walk on!

 

Ang xx

Behind closed doors … what no one sees

Flares come and go. This one is etched eternally in my heart.

Living on my own, barely able to move; I lay on the bed. The pain, excruciating and debilitating, breathed heavily through my bones and joints. Stiffness draped over me like a blanket of lead, far too heavy to lift.

My hands, elbows, neck and shoulders all simultaneously locked and weakened as though they’d spent days on end in tight bonds, rendering them weak, swollen and useless.

Every movement needed to be measured. Getting up was beyond a chore and getting dressed became an option far too difficult to manage. Each step an awkward shuffle and stumble as pain pierced each step. Calculated risk, measured only by necessity.

You need to eat. 

I dragged myself off the bed with every ounce of my will power and shuffled to the kitchen. I paused: thankful that I’d made it this far, but internally hurt by how much effort it took to get there.

You can do this.

I took a deep breath and grimaced as I opened the cupboard door. The cereal was around head height. Visible. Within reach, yet may as well have been on mars. I tried so hard to reach. I grimaced, I breathed deeply. I tried swinging my arms to gain momentum.

I’ve been here before. It’s ok. It will pass. 

Yet each moment that passed brought a new level of frustration.
How is it that something as simple as making breakfast became the undoing of me?

I stood there and caved. Something deep inside me cracked and I cried out:
“How could anyone ever love this? Who would want to see this? And, why would they?” 

I was unable to get changed, unable to wash my hair, unable to move freely … and now I couldn’t even get myself a bowl of cereal. The words changed from courage to despair:

No one could ever love this.
No one could put up with this.
You can’t even …
It’s too much …
You’re too much … 

I stood and stared blankly at the cupboard. Overwhelmed with the heaviness of it all, I cried. I let out tears of pain and frustration that my body was yet again letting me down, and that I was seemingly on my own in this.

The weight of struggle rested behind the closed doors of my little house, hidden from the world: the world who couldn’t handle me at that point. The world only my parents knew of. The world I felt alone in.

Returning to my bed, the reality of my thoughts grieved me. It sat heavy on my heart and I poured out my soul on my pillow.

No one knows exactly what goes on behind closed doors. People think I’m strong, but that’s far from the truth. If they knew how hard it gets, how crippled these moments are … what then? How quickly would they run? Who would dare enter these walls?

The reality is hard to live with. Pain is ugly, messy and complicated.

No one sees this.
What is the point of it?
How can this ever be used for good?

I died a little that day. I died to the idea that I could be loved by someone. I was left with a renewed understanding that I alone live in this body. And that means everything it does or doesn’t do: I have to live with that. I couldn’t expect someone to come into my world. Why would they choose to be a part of that?

Thank God for resurrection.

You see, I know that I am more than the pain in my body. I am more than flesh and bone. This heart, this life, this being is simply more. It has more to give, more to offer and more to love. Confined by a body is different to being defined by it. Should someone enter this world, may it be a blessing both ways.

Yes, it’s hard. Yes, it sucks.
No, you’re not alone.
Yes, you’re worth it.
And … you can … you really, really can! 

Who would enter my world?  Your world?   Perhaps those who seek after truth and beauty, who look beyond the external and see what lie beneath.

We all have our pains, and there is hope in it.  In it, alongside it and all over it. There is always hope. There is a place of grace, rest and mercy.

Dear heart, stand up. If not physically, then metaphorically. Take heart and know that you really are loved and lovable.

And for those who come near, may you find the courage to sit and stay.
Stay with me. Stay with us. Together we are stronger.

May we all never be alone again.

Peace and rest to you,
Ang xx

Psalm 116:1 “I love the Lord, for he heard my voice; he heard my cry for mercy”

 

 

 

 

 

These small hands …

“These hands are beautiful and precious. With them you will do much good. You will do many great things that honour God.  God will use them to bring healing.” 

 – a dear friend xx

As my friend spoke these words I was simultaneously brought to tears and gripped with scorn. Yeah, right. Have you seen them. They’re pretty useless.

I hated them. I hated everything about them. I’d do anything to hide them.

My hands are a source of great pain and a visual reminder of a crippling disease. Small. Deformed. Crippled. Weak. Gumby…. you name it. Though surgical intervention has reduced the pain and allowed some function, they still remind me that not all is well in my body.

I look back at photos of myself at the age of 7 or 8 and tears roll down my face. I’m drawn to the small, swollen hands, on the brink of falling apart. Joints weakened by arthritis and bones so small they almost disappear. I see the beginning of the deformities. The memories are perhaps worse than the reality was at the time. I knew no different then. I didn’t know what was coming, nor the impact it would have.

I remember the joints dislocating (subluxing) and each time it becoming more crippling. They crippled quickly as a child and attempts were made to save the joints through ongoing splinting, occupational and physio therapy. But dislocations took time; most of the finger joints dislocating completely while I was in high school.

Sometimes I would sit on the bus in silent tears rubbing my joints, begging them to stay in alignment, knowing that they were mere days away from ‘falling off’. The synovial fluid would cause swelling, the tendons would slip and the bones would slip past the joint. Occasionally I could pull them back into alignment, but never for long. Splints were useless at this point. All I could do was wait to come of age for surgical intervention, and watch the rest of the joints ‘go’, one by one over the following decade until there was hardly a bone in its ‘rightful’ place.

The wrists did the same thing – the left one was particularly spectacular. The meta carpal bones essentially disintegrated and my hand all but fell off my wrist – the ulna was on top of my hand. The result is 2 fused wrists: one at 19 and the other at 23 (because in my pride I chose pain because I refused to be a 21  year old with 2 fused wrists).

After all the operations – Palm down, 2014

Palm up, 2014

My hands held me back. Grip failed frequently, resulting in embarrassments as drinks fell into my lap without any recognition from my brain as to what had happened. Piano keys now tapped one at a time, fingers mashing keyboards and clapping something representative of a monkey wearing mittens.

My 7 year old has bigger hands than me. My 4 year old is catching up!

My friend held my hands and spoke: “These hands are beautiful and precious. With them you will do much good. You will do many great things that honour God.  God will use them to bring healing.”   As she drew attention to my hands there were tears of doubt and pain. Deep hurts reflective of years of splinting, stiffness, stretching,  physical therapy, torture … Could they really be useful or of value. Could I be useful or of value? Ouch!

Interesting, isn’t it?! Somehow these words unlocked a world of pain that revealed something that was holding me back. Something I never thought to be ‘true’. I try not to let my body dictate who I am – I have known for a long time that I am far more than this vessel. I rebel against the system and make every effort to prove people wrong (more on that later). But perhaps there’s more; something so deep it went undetected…  perhaps there’s a sense of shame?

Could there be healing from these hands?  Could they hold the keys to freedom? What if these hands can reflect the heart – the heart that screams for grace and mercy. The heart that screams for peace and healing in this broken world.

On reflection, these are hands that:

• rub my children’s backs to connect and comfort
• holds their hands across the street to keep them safe
• prepares food to nourish
• bakes to bless
• gently rest on a friend’s shoulder to comfort
• write to bring hope

Somehow  these hands continue to function despite the pain, smallness, stiffness and deformity.

Will I ever be unashamed of the hands that have not seen healing? I don’t know, but perhaps in realising that though broken they are of value, there is hope.

My hands are small I know
But they’re not yours, they are my own
– Jewel, “Hands”

 

TKR: 18 March 2014 (here we go again!)

When I was very young, my knees were bent at close to 45 degrees,  requiring extensive physiotherapy and splinting to get them to straighten. Whilst I look back and am thankful for what it achieved, it was a horrible experience!

I remember my legs being strapped overnight into large heavy splints with a bar in between each leg to prevent movement. Each night was filled with frustration or tears; not to mention the outright defiance as I got older! I’d be sure to rip the splints off in the middle of the night in order to gain such ‘restful’ sleep.  

Each time an adjustment was needed, a new splint was made – much like plaster casting a broken leg, but putting increased pressure on the joint in an attempt to straighten the joint.  This went on for years, and, the reality is that it was a huge success.  My legs became the strongest part of my body. Bike riding became a passion and my knees were my strength. Most other joints let me down; but not my knees! At least not until I was around 20 years old. Things changed dramatically. Walking became difficult and I got weaker. Bike riding became a novelty experienced reserved for flat terrain and the elusive ‘good days’. I missed it. I still miss it.

I was given a new lease on life after a total knee replacement of my left knee in September 2012. I slowly rebuilt strength and found a new desire to walk… That lasted around 3 months: just long enough to give me a taste of independence and excitement that this physical body can do more!  And then it happened: the right knee decided that it had done enough, that it had been compensating for the left for too long and couldn’t keep up.

If all goes to plan, I will be undergoing a second total knee replacement in just under 3 weeks time.  There is a significant bow in my leg, putting pressure on the knee and causing uneven erosion of the bones. To make matters slightly more complicated, my right ankle turns inward and is almost on the ground.  I know that we’re venturing again into the world of the unknown and sometimes, I’ll be honest, the fear overwhelms me.  We know the road ahead is hard. It’s long and arduous. There will be triumphs and set backs. Every time I face surgery I’m never completely sure that I’ll have the strength to get through it.  But, get through it, I do, and get through this, we will.  

I was reminded tonight that one of the benefits of going through such a journey is the strength that results. It was a timely reminder that though the path set before us unknown, there is hope in the journey.  There are triumphs and joys amongst the hard times. There are people to share the journey with, and a changed life ahead to enjoy .  

I hope to look back in 18 months time and see that it was well worth it; that the strength will far outweigh the pain of the journey.  In the meantime, I’ll take one day at a time, possibly even one minute at a time.  I’ll celebrate the successes and look forward to seeing progress; and among the tears and pain, I hope to have those near and dear to make bring much joy and laughter 😉 

Peace for the journey
Strength be near
Love overflow
Joy be complete
Grace abound
Life be lived

xx

One year on: life after a total knee replacement!

The 25th September 2013 marks the one year anniversary of an operation that sparked physical hope and freedom. A total knee replacement was both incredibly daunting and incredibly exciting! The daunting feelings probably speak for themselves. It is major surgery!
I’ve been through more surgical procedures than I can remember, but each presents unique challenges.  The total knee replacement was ‘exciting’ as I had reached the point where anything had to be better than the pain and quality of life that I was facing.

As most know, having an active 3-4 year old and a newborn is physically demanding at the best of times. I’d reached a point where I could barely walk around the house; some days barely able to walk from the bed to the chair.  I was no longer going to the shops or parks unless we took the wheelchair. Any outing took its toll one way or the other. The backyard was out of the question and I was getting concerned that my boys would miss out on having their mum go out and about with them (even just a bit!).  Nights were difficult and pain sometimes felt like more than I could bare. Although it was still a big decision, when the time came to have my left knee replaced, it was welcomed and tackled with gusto.  We planned ahead: my husband stopped work, my parents came to stay with us and we gathered a group of friends for support.

On the morning of the surgery, I said good bye to my family to take up a hospital bed again. Having many complications, and being a bit of a risk I received the ‘honour’ of being first on the list. Getting all the anesthetic needles for a spinal took a painstaking 45 minutes. I had just told them that I had had enough of being prodded and to knock me out when the line in my back finally went in.  I was very relieved, though I still had significant bruising weeks later!  After that, all I could do (and needed to do) was lay there and let the surgeons do their thing. I was awake through the procedure and was quite intrigued by the noises and amount of prodding that takes place. It is certainly a brutal operation!

Once I was back in the ward and the anesthetic wore off, the pain was intense! I tried to avoid major pain killers, but failed. I soon learned that I wasn’t going to manage a good recovery without some analgesia!  That said, I knew that it had been a success as soon as the physio’s got me to stand on my feet.  Whilst incredibly difficult to move, I could tell that my knee was far stronger than I’ve ever remembered; it was just a matter of time and effort to get to the point where I could use it!

The first 2 weeks were the hardest, with the next few months being a slog of rehabilitation. One of the hardest parts of the recovery was having my 4 month old crying in the cot. I could get to him and pick him up, but not be able to walk anywhere with him. I think my first steps while holding him after the surgery was closer to Christmas. As I look back on it I can see that there were some significant emotional challenges to the journey, not just physical.

Good days came, bad days went. My 4 month old provided me with some much needed inspiration and I was determined to recover as strongly and as quickly as I possibly could! There were challenges along the way, but by the grace of God I became stronger each day.

Just a few months after the surgery I started to walk a little further than I had for years. My mobility has drastically improved, though let down by the other knee and several joints. I can do things that I haven’t done for years and will welcome a replacement of the right knee if or when the time comes.  I think I waited too long for the left!  If I had the time again, I would do have it done sooner! Don’t get me wrong – the surgery was brutal and the recovery process was full of challenges, painful and grueling; but the benefit has far outweighed the cost.

A big thank you to my friends and family who helped me through this last year. It would have been much harder without you!