I’m still waiting for my MRI report. I’d say the picture above represents my inner feelings during the past year. I have so many symptoms, some of them given fancy names, like Nystagmus, Trochlear Nerve Palsy. Other symptoms unexplained. None of the reasons why I have them have been explained, yet. But I’ll put on my relaxed face for this coming week, as I have done for many weeks (years) and no one will suspect a thing.
I don’t know the artist of the above image. I found it on Pintrest and the artist is not given. Please let me know if it’s yours.
I had my MRI scan 2 days ago. I’d heard that the machine is really noisy so I asked the Health Care Assistant what I should expect, and he replied with “It’s like being in the worst drum and bass club in the country”, which really made me giggle. Aren’t HCA’s great when they can make you laugh, at your most nervous. 😀
I’d been really careful to avoid wearing any metal, even down to not having underwire in my bra! Naively thinking they’d let me go in the scanner wearing my own dress and leggings. But oh no, out came the scrubs. Thankfully it wasn’t one of them open back gowns. Hospital blue is not really my colour, but at least I got to keep some dignity!.
Between getting ready and actually having the scan, there is quite a long wait, but thankfully I got chatting to another patient, which helped to pass the time and settle my nerves. I’m super shy with people I don’t know, but I smiled at her and she started chatting to me. She has had scans before because she has a long term condition, which I was tempted to ask her more about, because I suspect that the same condition is one of the illnesses my doctor is trying to confirm or rule out with this MRI. Her journey had also started after a trip to the opticians. But, we were trying to keep the chat distracting, so we were discussing everything from work, places we’d lived and husbands. Probably the most effort I’ve made in a long while to chat to someone I don’t know, and it took place in the queue for a drum and bass club, I mean hospital waiting area!. Funny what nerves does to you 😀
The scan itself is weird, but it’s bearable. I kept my eyes shut for the whole 20 minutes because I realised early on that I felt a bit claustrophobic. So my advice to anyone, is keep your eyes shut and distract yourself with calming or happy thoughts as much as possible. Despite the ear plugs and pillows around my ears, the machine was very noisy. All kinds of random images were created in my mind from the noises. Focusing on the pictures in my head actually helped to distract me. I did wonder at one point, can the radiographers see spikes in my brain activity when I’m seeing all these random scenes in my head! Some were quite funny, and definitely random.
Now it’s the waiting game again… Worst case scenario is obviously if they find something sinister in there, (trying not to think of that though). 2nd worst case scenario is they find absolutely nothing, and can’t explain my symptoms, and the cranial nerve palsy and the nystagmus. The best result is that they find something none threatening to life, that can be easily corrected. Everything crossed. (Including my bl**dy eyes in primary gaze!).
I was searching for visually impaired artists work and found the work of Pakayla Biehn. Biehn has Strabismus and represents her double vision in paintings, as if it’s a double exposure photograph. I can’t use it in my project, but thought her work is quite cool, so I’ll blog it here instead 🙂
I had an appointment with the consultant at the specialist eye clinic, just before Christmas, and he’s referring me for an MRI! I’m slightly nervous, but I also can’t wait to find out what’s behind it all. This year I will get answers!
They did so many convergence tests. I had to look at a picture on the other side of the room, from unimaginable angles 😀 My superior oblique isn’t working properly.
Superior Oblique is the medical term for the 4th cranial nerve. The nerve that controls upward and downward movements of the eye. You had ONE job!!
All going well I am having squint surgery later in 2020 to help my eyes to work together … & the rest depends on the MRI findings.
The 3-month review turned in to 8 months, and after many voicemails chasing them up, I was finally offered another appointment. It was a different doctor this time and he agreed I’d been waiting a long time and said it was about time my eyes are sorted out. Great, I thought. I’m getting somewhere! However, before he could refer me to the specialist he (or the orthoptist) has to have taken a full set of eye tests, which they’d forgotten to do. So, three months later I’m called in for another review. I see the orthoptist, who now mentions my (recent) diagnosis of hypertropia strabismus is possibly caused by a congenital nerve palsy. I now have diagnosis’s of Esotropia, hypertropia caused by a congenital fourth nerve palsy and nystagmus. At this point they still believe I was born with these conditions, so there is no rush to investigate, but they are referring me to a specialist at another (larger, more specialised) hospital. I’m hoping the new hospital will investigate and get to the bottom of what’s going on with my vision. ‘You were more than likely born this way’ doesn’t reassure me at all. I just hope the new hospital don’t have any more medical conditions to throw in the mix, I can’t keep up!.
It all started at a routine vision test 21 months ago, when the optician noticed my eyes were ‘wobbly’. I’d had twitchy eyelids, but apart from that this was just a yearly, routine check-up. As a child I’d had strabismus which is a misalignment of the eyes. Some people have an eye that deviates inwards and some with the condition have an eye that deviates outwards. There are also upward and downward deviations. I have Esotropia, where the eye turns inwards slightly. Apart from a few months of ‘patching’ I hadn’t needed any more investigations or treatment, and was discharged from the eye clinic aged 5.
At the hospital where I had my referral appointment, they told me the wobbles are caused by a condition called nystagmus. I was a little worried, as you would be, but they said perhaps was born with the nystagmus because I seem to ‘cope with it very well’, and the coping mechanisms are often leaned in childhood. Nevertheless, they agreed they would see me in the hospital again for a review, as this was the first time nystagmus had ever been noticed in my eyes, despite yearly sight checks. So the review would be to check if the condition was stable, or showing signs of worsening.
Hello and welcome to my blog. I’m going to be blogging my strabismus / squint journey. I decided to start a blog for 2 reasons. 1) I think it will be cathartic. When you have a health issue, that causes a visual difference, self confidence and wellbeing are constantly knocked. And 2) I hope documenting my journey can help others going through the same thing.
For now, until I get the hang of it, I’ll document my journey and then who knows where my blog will go. One of the wonderful things about blogs is how they constantly evolve as we learn and grow.
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Me, Myself and Eye 