“Hello, you’re back again, so nice to see you, how are you?”
You’d be forgiven for thinking this warm greeting was being given by a friend, a colleague, or a local shop owner who I’d known for years.
This was the greeting I received by the Radiologist at my hospital, when I arrived for my latest MRI appointment.
After countless Xrays, CT scans, ultrasounds, MRIs, Bone Scans, Bone Density scans and other invasive tests such as a Defecography, my patient file is thick and I am pretty much known by many of the staff.
It is always a little like coming home when I need to attend my hospital, no matter which department. I’ve spent so much time here over 11 years and it’s been a place of care, support and safety in many regards.
The Radiology department however, always creates a sense of mixed feelings for me.
Welcome to Your Scan Selection!
In 2010 I had a Bone Scan indicating what was thought to be widespread arthritis. We would soon find out it was a bit more complicated.
I also had an ultrasound in 2010, indicating something was wrong with my ovaries. Turns out, through exploratory surgery, I had so many abdominal adhesions following a Total Abdominal Hysterectomy in 2007, my ovaries were strangulated, covered in cysts and diseased. While on the operating table the exploratory surgery turned quickly into a Adhesiolysis and removal of both ovaries.
In 2012 I had three Defecographies in this department. Incredibly long and invasive tests to see how my bowel was functioning. In my case these resulted in the diagnosis of a severe non functioning bowel and the need for me to have surgery to create a permanent colostomy.
It was in this radiology department, after being rushed to ER, they confirmed my left femur had snapped in two in 2014 and my rare bone disease was diagnosed.
In 2016 it was discovered by the Head of Radiology and my Orthopaedic Surgeon, my right femur had a stress fracture, and was ready to snap in two like my left femur had only 18 months prior. They were working together to study intensely my MRI as I was having severe right femur pain but the cause was not clear. Thanks to their commitment they picked up a small fractured diseased area of bone others had missed.
As a result a rod was placed in my right femur to prevent a medical emergency. I was ao grateful. Even more wonderful was other Orthopaedic Surgeons, who heard of my case, found they also had patients with femur pain who had stress fractures not easily picked up on scans. These patients also underwent surgery and in their cases their pain was relieved and they also averted a medical emergency. Amazing!!
In 2018 we discovered my bone disease was attacking my lumbar spine, resulting in severe spinal stenosis, fractures and spinal instability. Two spinal surgeries were unsuccessful, due to the aggressiveness of my disease compromising my bones and healing ability.
So this Radiology department has played a pivotal role in my life over and over again.
As I make another appointment, for yet another scan of some description, I am always so mindful of what life changing decisions might await me on the other side.
Managing My MRI Marathon
My latest adventure at the Radiology Department was a 12 month follow-up spinal MRI, plus an MRI of my right hand.
I decided to kill two birds with one stone and have the two scans at the same time. Probably not the best idea as it was really three scans. My lumbar spine, my cervical spine and my hand/wrist required scanning.
In total I was in the MRI machine for 90 minutes. It was a marathon and these were not just my words, the Radiologists were also feeling it. They were concerned about me, my pain levels and my ability to stay in one position for such a long period of time.
Their care was exemplary. They wheeled the MRI scanner bed out to my walker so I didn’t have to try to hobble in or out of the scanning room without aids. I could be transferred from my walker to the bed and wheeled directly into the MRI machine.
They discussed my history with me and the senior radiologist held my arm in a comforting way and just looked at me. No words passed between us. What can you say? He got the situation and he genuinely cared.
You can’t help but wonder when being scanned, if the answers will be helpful or unhelpful. Helpful falls into the categories of peace of mind knowing what’s wrong and possible treatment available.
Unhelpful categories, are problems identified but the cause unknown and no treatment possible.
There were a few things I was able to do in preparation to make the experience a little easier:
- I booked the scan on a Sunday as it’s quieter and parking is easier. I don’t have as far to walk this way;
- I wore clothes with no wire, buttons, zips etc, so there is no need for me to get changed into a gown for the scan. This saves time and prevents unnecessary pain for me;
- I’m very careful what I eat a few days prior so my stoma is more likely to behave;
- In case my stoma plays up (like it did this time) I arrive 15 to 20mins early to factor in a full bag change etc.
- Due to COVID restrictions I ring ahead to ensure my husband, who is my carer, can come into the Department lounge area to be near me if I need him. Thankfully the answer was yes.
The scan itself was definitely long but I thankfully don’t suffer from claustrophobia. The Radiologist worked out a plan with me, to make the process easy for him, and as comfortable as possible for me.
We divided the scan into sections:
- Non contrast Lumbar and Cervical spine first;
- Hand/Wrist non contrast followed;
- Hand/Wrist with contrast next;
- Lumbar/Cervical Spine with contrast last.
The Lumbar and Cervical spine scan sections were relatively easy for me. I was lying on my back, my legs supported and my neck in a comfortable neck coil.
The hardest part was my hand scan. Technically I was required to lie on my stomach, with my hand in a scanning bracket stretched out above my head.
There was so many reasons this wasn’t going to work. The main being I find it incredibly hard to roll onto my stomach, due to pain and broken bones, and incredibly hard to lie on my stomach due to my stoma.
My Radiologist completely understood and, again together, we came up with a more workable plan. I was placed on my side with a pillow between my legs, just like I sleep at home. My right hand was placed as if under my pillow and put in the scanning cage. It was on a right angle, not fully stretched out. It was as comfortable as it could possibly be and I was so grateful. A pillow was placed against my back once I was moved into the scanner to provide further comfort.
Before long I was snoozing…..can’t ask for more really!
Wondering What’s Next
There’s nothing like the isolation of being in an MRI scanner to cause you to stop and think.
I always use the time to re-evaluate my health journey. Is there anything I could have done differently? Anything I could learn from?
What do I want to achieve from the scan?
This is such an important question. While your Dr has an agenda for ordering a scan, we also need to ensure we use the results to raise questions, seek answers and determine our own next steps in terms of our health.
In my case my medical team and I know I need spinal fusion surgery with bone grafting to stabilise my spine. We also know the risks of failure and infection and possible death, due to the integrity of my bones, is so high we are not prepared to take the risk…..yet!
I need to be prepared the results of this latest scan might indicate surgery must happen. My pain levels are crazy, my bowel and bladder are affected, my feet are completely numb in places and my disability is worsening at a slightly worrying rate.
I’m waiting to hear back from my Orthopaedic Surgeon to get his thoughts. He’ll ring or email me over coming days and if necessary I’ll go and see him. So I’ll be wondering and waiting over the next few days and formulating a list of questions I need to ask.
My hand/wrist MRI is for my new Rheumatologist. He is wonderful and will be using this scan to determine if there is a Disease Modifying medication suitable to treat inflammatory bone pain, as well as inflammatory arthritis. This could be a game changer for me. A glimmer of hope but also a possible dead end. I need to be prepared for both outcomes.
Right now I’m relieved my MRI Marathon is over….until next time. It’s so nice to be home with a cup of tea, my comfy chair, comfy bed and a feeling of accomplishment. Thanks to lovely staff, preparation on my part ahead of the appointment and working together with the Radiologist….I just survived!
If you’re looking for genuine support, care, understanding and 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 and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam
I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page
Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!