Cauda Equina Syndrome and my experience

Cauda Equina Syndrome and my experience This page has been made purely for family, friends and anyone going through a similar ordeal. There will be swearing. I will be crude, but real.

welcome to my rollercoaster.

12 months ago today I'd be waking groggily to the surgeon urgently getting me to attempt to move my leg to determine if ...
15/10/2022

12 months ago today I'd be waking groggily to the surgeon urgently getting me to attempt to move my leg to determine if the surgery was a success.
12 months ago life flipped on it's head, and yet here, 12 months after, life is great.
Still got a limp, still don't have a whole lot of feeling in my left leg, the toilet is still a chore and I'm not allowed to lift much. But, 12 months ago I was in a wheelchair staring down the prospect that I may not walk again. I'd say I've done all right...

It's been a while peeps. Just a quick update on Andrew's progress. >He's back to full duties at work and absolutely sma...
18/07/2022

It's been a while peeps. Just a quick update on Andrew's progress.
>He's back to full duties at work and absolutely smashing his new role this year as Head Teacher Science.
> He's finding more and more things he can do (albeit slowly) around the yard in our new place.
> Best of all... he's back playing with the kids again which is something that we were both worried wouldn't be the same as before.

I like to call this photo...
"Cauda Equina can kiss my a**"

Andrew you are incredible and I'm super proud of all you've achieved in the last 8 months.
😘😘😘😘
Thanks everyone for your continued support.
💞💞💞

05/03/2022

It has been a while...so I had better provide an update now things have started to settle down.
The family and I have moved 9 hours north, got a new home, new job etc. The move had been great.

I'm now back at work full time in the new job, and started at the end of Jan. Surgeons had said I wouldn't be back until at least April, so against the odd again.

That's not to say it's been easy. I'm pretty slow getting around (1.5 year old Lucy is faster). There has been swelling of the foot on busy days, and the hardest part.... Not having the ability to hold in a fart, like at all, I'm learning the feelings, so will avoid people when I feel onset of some a**l acoustics building. But it's tricky when in front of a class of teens and I get the urge to blast the ass trumpet, provided it doesn't burn the nose hairs I've been able to discreetly release a Frequency Actuated Re**al Tremor unnoticed.

I still don't have the foot strength to push off when walking and the leg is still significantly numb, although each day there are improvements in strength and subsiding numbness.

Plumbing is probably still the largest obstacle, and I've probably seen the least progress here, but nothing I hope won't come back with time.

Waiting to heal is the longest part now, The head surgeon gave some great news that he expects a close to full recovery in around 12 months for movement etc, but said numbness will take 5-10 years to come back if at all.

Journey isn't over yet, but I've beaten most of the odd so far.

Cheers to Daddy passing his OT driving assessment in Kiama this morning! We're so proud of everything you're achieving ...
04/12/2021

Cheers to Daddy passing his OT driving assessment in Kiama this morning! We're so proud of everything you're achieving Andrew!

30/11/2021

Vent time.

Driving License..... What a bureaucratic s**t show.
Licensed not suspended pending assessment like I was told....no, they've cancelled it to be reissued with a 6 months learners licence and required driving assessment then RMS medical team to review OT report and driving assessment results to be then reissued with License in some capacity.
So now have to go to RMS (30 mins drive) and surrender current license to be reissued learners. Then have driving assessment this Saturday. Then wait about 2 weeks while they determine if the report is ok.
Then back to RMS to get licence back but excluding motorbike which requires a different set of assessments. (Which I understand, need a fully functioning left foot to change gears)
Why not suspend, get assessed then decide what parts of licence, if any, require cancellation or restrictions.
Now I need Amanda to drive 2x 1 hour round trips to just have my licence changed then changed back.
Last time I checked, the left foot is surplus to driving an automatic vehicle.
And the OT assessment is going to cost $750 if we drive the 2 hours to them, or $1500 if they come to us.
Rant over.

SUCCESS!!!!
25/11/2021

SUCCESS!!!!

24/11/2021

Today is 'trial of void' at Prince of Wales Hospital urology clinic.
Catheter out, jug of water by my side. Here is hoping the plumbing has repaired and things, well....flow.
After over 6 weeks with one, I'm hoping to see the last of it. Failure is not an option, as the alternative, well I'll float those details for the alternative should it come to that.

Here we go again... 😒🙄🤪Back to emergency in Bowral with a suspected blocked catheter. After one attempt at replacing the...
14/11/2021

Here we go again... 😒🙄🤪

Back to emergency in Bowral with a suspected blocked catheter. After one attempt at replacing the catheter and very little urine flow they called in the emergency specialist doctor to assess who found that Andrew's bladder was quite empty despite feeling full which he suggested could be the feeling returning which is awesome.
There was a partial blockage and some trauma associated with the catheter which has been causing him some pain but with a new catheter in and more hydration he should be right as rain!
Now to get home and get some sleep before the rug rats are up in the morning. (Who am I kidding, I'll see Lucy 3 times before day light! )

09/11/2021

Bit of an update now that I'm home!
Recovery far from over. Left leg is still paralysed, mostly from knee down, and butt.
Although getting something new every day, whether is be sensation or ability to use a new muscle. But walking is slow.

Still have the catheter in and it will need to remain for a month or so before I 'trial a void' as they call it. Which also means I need to have it replaced every few weeks. Good news is I no longer have a bag, it's now just a tap attached to my leg to see if I've regained sensation of a full bladder. And of a night I just connect the night bag to drain into.

Was quite overwhelming to come home as the reality of how impaired I was became very apparent. I was so used to a clinical area where it's set up to be easy. Only to come home and find the things I had never even thought about becoming challenging.
So new goals to smash is to way I will look at that.

I'll now need to travel to Randwick for spinal rehab outpatient appointments and also will require regular physio.

My license is technically void until I get assessed by an OT and RMS. But should be fine since it's left leg and not totally required for automatic cars. I may lose my manual licence for a bit, but I can live with that.

Camden rehabilitation was pretty depressing, hence my early discharge. Nurses and Dr's were great. But it's a stroke rehab, so I was with patients that were much older and in far worse situations then my own. Lovely people when chatting to ones that could communicate, but generally it was not a great place for headspace and I felt bad taking up a bed and therefore a very limited spot in a specialist centre, preventing someone with much higher needs then my own from getting the help they need.
Physiotherapy had a lot of fun with me, they rarely get someone relatively able bodied (sort of) and young, so they worked my hard and got do do things they normally can't. So while the rest of patients were picking up a cup and placing it on the other side of a table, here I was pushing out 100 squats with a bloody medicine ball.

Other good news is that I don't have a 'flaccid bowel' which is a very common problem with Cauda Equina Syndrome. In basic terms, this just means my butt hole isn't permanently open resulting in bowel movements everytime I move. It would be a crappy lifestyle if that was the case, but Dr was openly excited when he awkwardly checked and said I was extremely lucky that I had 'tone' and sensation.

I think that's enough oversharing for now.
I'm home with the family and we've got a HUGE life-changing job ahead of us and not just the rehab, but that news is for a future update...no Amanda is not pregnant.

Andrew

09/11/2021

I'm coming home.
Just been discharged from Rehabilitation to be an outpatient!!

Address

72 Terralong Street
Kiama, NSW
2533

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