My Experience with Horner’s Syndrome, Part 2: A Patient’s Perspective

Hello again ladies and gentlemen! It’s been a while since I last posted something and I apologize for that, I was enjoying my beautiful honeymoon backpacking Europe! Now, back to it…

Backpacking EuropeToday, I’ll finally be telling you about my experience with Horner’s Syndrome! For those of you who know me, I’m the type of person who finds anything about eyes very interesting, especially disease. So I’m here today to tell you about my personal experience with Horner’s Syndrome. A forewarning, it’s about to get super nerdy up in here!

It all began when I was looking in the mirror and noticed that I had a droopier eyelid than the other (ptosis). My first thought was that I may have inherited my grandfather’s droopy eyelids and perhaps I have only just started noticing it recently. It wasn’t until a little later when my (now) husband noticed it and asked me about it. I remember looking back at him and saying, “Oh thank goodness you notice it too, that means I’m not crazy and not seeing things!” With this in mind, I made an appointment to see my optometrist. I was able to see him on January 6th, and when he asked why I had come in, I casually told him that I think I might have inherited ptosis from my grandfather. However, thought it was a little odd since he didn’t have corrective surgery until he was 75, and I was starting to notice it now. Colin, my optometrist, agreed. Initially, he conducted the usual testing of my pupillary responses and then repeated the tests multiple times, which I thought was odd, but I went with it anyhow (he is the optometrist after all!). Following the pupillary responses, he began to measure my ptosis eye to eye. Afterwards, he asked me if I have noticed an absence of sweating on one side of my face (anhydrosis) and if I had been in any accidents recently where I may have hit my head (which I had neither). After a few minutes of contemplating and more testing for ptosis, miosis and anyhydrosis, he looked at me with a very serious and concerned face and told me that I may have Horner’s Syndrome.

I had known Colin for a few years and we are relatively close, so when he told me this with a serious face, I should have been nervous; however, I did the complete opposite and replied with, “COOL, what is THAT?!” Colin, being such a good sport, had to laugh, telling me that I had to be the only patient that he could tell something like that to and get that reaction! We then discussed what Horner’s Syndrome is and some of the potential serious issues with Horner’s Syndrome that we need to address as soon as possible, as some of them can be quite life threatening. That being said, he referred me out to the Royal Alexander Hospital where I would meet Dr. James Lewis, a neuro-ophthalmologist. It wasn’t until I left the optometrist’s office that I was overcome with this feeling of fear. What if I did have a tumor? What if it was cancerous? What if they don’t find anything? The last question scared me the most, I was terrified. What if they don’t find anything and I do have something that will affect me for the rest of my life and they don’t find it until it’s too late. Luckily for me, I have the capability of making light of any situation and when I told my parents about my condition, I told them how excited I was because I get to go see a neuro-ophthalmologist (a reenactment to the right)!

Within a week, I was contacted by the hospital and had an appointment made for me to be seen by Dr. Lewis. After sitting in the hospital for a while and completing the preliminary tests, Dr. Lewis saw me.  At first he had the “doctor” look on with a grim face, but that soon changed once I broke the ice about how excited I was to be seeing a neuro-ophthalmologist. He looked at me and barely noticed the symptoms of ptosis and miosis, as they were subtle. He then performed the same tests as Colin had previously in the optometrist’s office, but came to a different conclusion than Colin had. Dr. Lewis did not think it was Horner’s Syndrome, which took me by surprise as I trust my optometrist so much that I had convinced myself that it had to be Horner’s Syndrome. However, Dr. Lewis wanted to be sure and rule out Horner’s Syndrome; so he performed a 10 % cocaine eye drop test in my eyes to get either a positive or negative result. SPOILER ALERT – the tests came back positive and it was confirmed that I have Horner’s Syndrome. As I was waiting for the drops to take affect I recall that my eyes felt like there was some sort of film over them as if they were being numbed.

I proceeded to exclaim how cool this was to my mother and to Dr. Lewis when he came back into the room to check my pupillary reactions. After checking the reactions again he determined that I do have Horner’s Syndrome, and it came time to have a serious talk. He told me all of the possibilities of what I may have – which was a large list of some minor and serious issues – and then went on to tell me which tests would be further performed. However, we first had to determine which order of Horner’s Syndrome I had, and for this I had to return to his office another day. Before the second meeting, I had time to think about any questions that I may have had for him. When we finished diagnosing the order, I quizzed him about all of the tests he had performed and started to frantically type them on my iPad. He started to chuckle at me since he had never seen someone so keen to learn about something before. I informed him that I cannot wait to write an article about this and learn as much as possible! After I felt like I had all of my questions answered, we discussed what further type of testing I was going to be sent for, which included an MRI and CT scan. These I will discuss in my next article, so be sure to visit back here for the upcoming article about my MRI and CT scans!

If you wish to learn more about the tests that were performed during my optometrist and ophthalmologist visits, you can find out here!



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