From A Spine Tingling Saga To A Cracking Crisis

Sometimes the chronic illness road has twists and turns. Sometimes it has major cracks and potholes.

My latest bone disease adventure has created a new chronic illness road cliché.

I’ve found myself in the midst of what I’m calling,  a “cracking chronic fault line”

Think earthquake and you’ll get the idea.

I recently wrote about my Spine Tingling Saga.

It’s a saga which took a direction I didn’t see coming and my Specialist certainly wasn’t expecting.

Oops…That Can’t Be Good

I woke up Tuesday morning with the same horrific low back pain I’d been dealing with for 5 weeks. It wasn’t improving but I was now under the care of a Spinal Specialist and I felt comfortable with the diagnostic approach he was taking.

The L5 nerve block I had 10 days prior didn’t work. I wasn’t upset, it just meant we knew something else was the instigator of this debilitating pain. In essence this was still progress towards an answer.

By midday each day this new back pain settled enough to help me move a little. I was finding the exhaustion, from pain that was not responding to medication, so overwhelming. I just figured it was par for the course.

I had no idea what was going to happen next.

I had a much needed dentist appointment at 3pm to review my salivary gland blockage. You really can’t have enough issues all at once….don’t you think?

Anyway, I went upstairs to change my stoma bag before going out. I very carefully bent forward to open a cabinet drawer to get out my supplies.

I had only slightly bent forward when I heard and felt an enormous crack across my lower back. I can’t begin to explain the pain but all I could think was;

” Oh No, that can’t be good”

I automatically tried to stand straight, pushing through, what can only be described as a “cracking chronic fault line”

There was no doubt my body was once again having its own shattering earthquake.

The Ambulance Debate

I called my husband, in what he said was my “Honey, my femur broke voice”.

Whatever that tone is, he knew it and knew I was in trouble.

I couldn’t lift my legs off the ground without wanting to pass out from the pain. In true form my stoma went into overdrive as it does if a major bone disease incident occurs.

I needed to change my stoma bag desperately but we also knew we needed an ambulance.

I didn’t want to call one as I inevitably knew I’d be admitted. I do love my hospital but I love my home more.

So we had a short debate of “should we, shouldn’t we” and after 10 mins of no improvement we made the 000 call.

We somehow even managed to remember to call the dentist to cancel my appointment. They were obviously very understanding under the circumstances.

You’ve Made The Right Decision

The paramedics were there within 5 minutes. I couldn’t sit at all. I was standing on very sore broken femurs, leaning on two crutches.

I’ve never had a canulla inserted before while standing but I did on this day.

They quickly heard my story of my rare bone disease and what they said in response was so beautiful;

“We do this job to help people like you, who have serious conditions. Never hesitate to call us, even if you just need us to give you extra pain meds”.

I knew we’d done the right thing to call and that I was in good hands. Their genuine care and concern caused me to cry with tears of gratitude and relief.

The reality of “here we go again” was hitting home.

A Special Reunion

I was only in ER for 30 mins when I was told I was being admitted.

As I was being transported to my hospital room, I realised this was the ward I was in when my femur broke.

The nurse entered my room to “check me in” but this wasn’t just any nurse. This was the nurse who cared for me so beautifully 4 years ago when I was brought in with a major pathological femur break. This was the nurse who put my leg in traction that day and then ran to get me the best cup of tea ever.

As she walked into my room our eyes locked and we both exclaimed;

“Oh my goodness it’s you!!”

We couldn’t believe it. We also couldn’t believe that it was 4 years ago, this very week, we were going through the broken femur saga.

Here we were again….4 years later!

I knew whatever was happening to me now, I was again in good hands. More and more staff came into the room who remembered my story and were full of care and concern for this next episode.

It was such a special reunion in the midst of yet another bone disease crisis.

So What’s Going On This Time?

Oh that we knew the answer to that!!

The jury is out. The pending verdict includes;

1. Avascular Necrosis of the right hip causing instability and impacting my lumbar spinal stenosis further.

2. A stress fracture (not yet showing on current scans)

3. The Lumbar lateral recess and central stenosis at L4/L5 , which is compressing the spinal cord, may be causing all the issues. This is the most likely scenario.

Next Steps

We do have a plan courtesy of bouncing ideas around with my Spinal Specialist.

1. A series of facet joint injections to try to settle the spinal cord compression.

2. If I get even a minor decrease in pain with the facet joints injected, my Surgeon wants me to undergo radiofrequency neurotomy from L4 to S1.

3. If all else fails, unfortunately we can’t avoid L4/L5 decompression surgery.

So at least we have a plan and you all know I absolutely love a plan.

Jeremiah 29 v 11

^“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Staying Stress Free

It’s a known fact chronic illness is stressful. Even the most upbeat, positive person still has moments of worry and concern.

We don’t know if this latest issue can be fixed or if I am facing this intense crippling pain for the rest of my life.

What I do know is I need to be doing all I can to work out what we’re dealing with. Definitely ticking that box.

I also need to know that my husband and I are thinking about what further life changes are required if this new pain and disability is permanent. We are working on this.

Focusing on both current and future needs, while confronting, is important to staying as stress free as possible.

Hmmm….maybe the boy scouts really did have something with their motto of “Be Prepared”.

I can’t stop a “cracking chronic fault line” in my chronic illness journey, but I can work on being as prepared as possible for them.

This spine saga is far from over so stay tuned for more in my, “Chronicles of a Spine Tingling Saga” series.

There is sure to be a few chapters ahead full of twists and turns. I’m just hoping to avoid any cracks!!

Take care

Sam xx

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page

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WEGO Health Award 2018 Nominee