Imaging, we have so many of them – you get used to it. But, do you know what to ask for and why?
I often wonder how the medical staff, looking at the images on the screen, know what it is they’re looking at. Don’t misunderstand. I know they get years of training and with time, they get better at identifying certain anomalies. However, having had a few different types myself, I am starting to realise that there is a difference.
For example: Yesterday, I spent most of the day at the hospital emergency thanks to my Thyroid, which has been giving me issues. Previous ultrasounds have yielded findings of thyroid nodules. These have been biopsied through Fine Needle Aspiration (FNA), twice since my diagnosis with Hyperthyroidism, and found to be benign. Having seen the screen while they do the ultrasound and viewing the imaging on the patient portal, I often wonder how anyone can make out anything, as if there’s a special set of contact lenses issued when you get your medical degree. They must have special vision!
Following my medical history update with the ED doctor, she said; “We’re not going to mess around. I’m sending you for a CT scan with contrast so we can see exactly what’s happening. And get some blood tests done“. I’m no stranger to contrast as I’ve had it a few times before, for my Hydrocephalus scans. It gives you a warm feeling that travels down your body, between your legs and makes you feel like you’re about to wet yourself. It was interesting to me that she requested this as I took it for granted, it would always just be an ultrasound, but she explained that the CT scan would give a clearer picture of any obstruction of surrounding structures in the area and might explain why I felt like I was being choked. Although, after the contrast I felt strange prickly sensations all over my face and neck, as if someone was throwing needles at my face. That was new. As it turns out, the ultrasound I had the week before showed that my nodules had increased since it was done just over 6 months ago however, it didn’t show the true cause of my current symptoms.
Side note: At the time, the person doing the ultrasound thought it strange that I was even having a repeat ultrasound when my nodules weren’t “that big” previously and shouldn’t be a concern. (Annoying when they know better).
I’ve had a constant sore throat for the last 4 weeks, had a COVID test (negative) and other than developing a cough, it’s become harder to have long conversations. Waiting on a date to consult with the specialist I saw last year and, after 4 back-to-back meetings, I was pushed over the edge and made the decision to go to the hospital. I have pain, slight difficulty breathing and feel like I have a golf ball stuck in my throat that won’t go down. The CT revealed a few nodules with one pressing against my oesophagus, it could also be impacting and putting strain on my vocal cords, which explains what I’m feeling. However, a further consult with one of the thyroid surgeons left me in much the same way as my last neurosurgeon consult. Since the nodule is not “pushing” against the structures and obscuring my airflow, they aren’t prepared to act – right now. I was reminded of what the neurosurgeon said, “medicine doesn’t work that way“, same difference.
I explained that I appreciated the fact that the nodule wasn’t obstructing any airflow and showing obvious signs of needing further medical attention right now or that it wasn’t as big as they would regard as “big enough”. However, the fact that I’m impacted in the way I’m feeling and not being able to take anything to feel better leaves me in a bit of a challenging situation. I have to work and can’t exactly “not talk“. Even though the nodule doesn’t look like it’s causing much of an issue, it doesn’t feel like it to me. The pain and discomfort is unbearable.
He agreed to talk to the specialist at the end of his night shift on Monday morning and arrange that I be bumped up the list (from November) for a consult to discuss this new development. This was based on re-reading the notes from my previous consult, where I was marked as “high risk” at the time, given my history of Hydrocephalus and radiation exposure over the years. Unfortunately, there was one test the surgeon wasn’t able to perform to give him an even better view of what’s happening “as they have a small hospital“. Putting a scope down my nose to check my throat and inspect the nodule.
I was sent home with a fair warning to immediately present to an ED should I have trouble breathing over the weekend and prepare myself for surgery in the near future, which is highly likely.
On the bright side, at least it’s not brain surgery..!
The point I’d like to get across to you is: We have all these different imaging and tests done and sometimes, it doesn’t really show what needs to be seen. If I hadn’t gone to the hospital, I would never have had the CT scan and figured out that the nodule is pressing against my oesophagus. Kind of like having someone with their hands gripped around your neck, annoying (and scary) to feel, as they don’t let go but, since they’re not squeezing and visually choking you, you need to learn to live with it.
The ultrasound didn’t show clearly what the CT scan with contrast did, which in turn doesn’t show as much as the scope down my nasal passage will. Similarly, I’ve had CT scans before, which have shown “normal” results for my Hydrocephalus but having an MRI with Flow study, is a far better diagnostic test to see if there is flow through my ETV (Endoscopic Third Ventriculostomy). Some patients with Hydrocephalus have even had normal results despite their symptoms and until the surgeon (not all of them will do this) operated, did they find scar tissue or some other obstruction as the cause, which was undetected by diagnostic imaging.
Not an easy condition or task for a Neurosurgeon, by any stretch of the imagination!
If you don’t know what to ask for as a patient, you will never know and something might be missed. Owning your medical condition is important in the care you receive. You need to be part of it, every step of the way. You have a duty of care to yourself, to be in the drivers seat or at the very least, co-driver.
Before I left the hospital, I made a point of thanking the ED doctor for “being human and for her empathy“. This woman’s treatment was beyond anything I had ever experienced before. She reminded me that there’s still some good people in this world. Clearly in the right profession just a pity I couldn’t have her as a Neurosurgeon! It’s not often that I get that kind of treatment and when I do, it makes such a difference. She was humbled. It’s easy to put doctors down when we don’t get the care we feel we deserve – I know I do. But, at times, when we get the ones who visibly go out of their way, a simple thank you just doesn’t seem enough!