FINALLY, a Diagnosis!
That only took two years!
On St. Patrick’s Day this year, I finally met with a neurologist to go over my MRI. I already had a pretty good idea of what he would say, but I was still terrified.
The MRI technician had stopped it to administer a gadolinium-based contrast dye (GBCD). So then they had to do a lot more scans than they had intended initially. Finding a need for dye or more scans was a red flag for me, but if they saw something, I had to hope it was a good sign because I already knew many things were wrong.
The radiologist was very kind and advised that I get the CD with the scans to take home. He explained that they could see there was inner ear nerve damage.
When I got home, I had my husband try to open the CD, but it required a PC installation. Somehow, he managed to get it to open anyway. I spent some time looking through the images, which I suggest preparing yourself if you have never done this before! My husband found them horrifying; I was too in need of answers to be horrified.
After finding some images with abnormal areas, I went back to my computer, which I had set to giant font and toggled on all the accessibility functions. I searched on Google for an inner ear nerve damage MRI and scrolled through images until I found one that matched what I had seen on my own MRI. All so scientific, but I needed to know what to expect and how to brace myself.
My mom mentioned things like brain tumours to me for a while, and both the MD I recently saw and the ENT doctor had referred me to see a neurologist. Most of my problems were clearly neurology related, but anything “brain-related” was still too frightening to think about it.
When I found MRIs that looked like my scan, I searched those terms and came up with Wikipedia pages and medical pages describing symptoms, prognoses, and treatments. It seemed like surgery was the obvious answer, and everything I read mentioned it was almost always benign and treatable with surgery. Finally, I was calm enough to go to bed and try to sleep with this knowledge.
This knowledge made sense, as my problems had increasingly gotten worse, my facial numbness was on the left-hand side, my left ear had lost hearing, my left eye was the worst, and I had been experiencing tremors in my left arm.
The next day at the neurologist’s appointment, he went through a very exhaustive battery of tests which I managed to do for the most part, until he needed me to walk heel-to-toe and touch his fingers. I could not do this at all. Not even attempt to do this. Just putting one foot to the other foot made me fall over, let alone try actually to take a step. Especially on the left-hand side, everything was blurry and doubled. He spent what felt like an eternity looking into my eyes with the ophthalmoscope.
Then we went to his desk, where we discussed more things before he pulled up all the files he had received regarding me and informed me that there was a sizeable BENIGN brain tumour that would need removal with surgery.
I asked him how long it had been there, and he explained that the facial numbness when I was sick at Christmas 2019 was related and when it started making problems for me. He explained that the watery, goopy eyes could be due to hydrocephaly (fluid accumulating in my brain). He could visibly see the ophthalmoscope behind my eyes with his eye tool. As the tumour grows and pushes on things, it is hard for fluid to pass.
I have since learned that it is more likely from my eyes being swollen, pressure on my eye nerves, and a slower blink response, which causes my eyes to get dry. They also see my tear ducts are abnormal, so it could be a number of issues. I have a follow up with an opthamogist for after my surgery.
He began calling multiple surgeons that he knew, but all were off for the day or unreachable at what was now lunch-time. So, after speaking to a secretary somewhere and leaving a few messages, we went out to his secretary, and he faxed my files somewhere else to get me booked right away for surgery.
Of course, this was Thursday, St. Patrick’s Day, and while they said they would call me that night or Friday, it didn’t take a brain surgeon to assume there would be no surgery over the weekend. No pun intended! Yesterday, Monday, they called to book a consultation with the neurosurgeon for Wednesday morning.
After we left the neurologist’s office, we went to the old port to take my kids to the Pointe-à-Callière museum of history and archaeology. We had a wonderful time exploring ruins, pirate ships, and relics from Montreal through the years. If you ever get an opportunity, GO! The Pointe-à-Callière Museum is one of the best museums in the city: Fun for all ages, informative and incredibly interactive and fun. Let us do what fun activities we can every time we can. I want my children to know they are loved and cherished and never stop learning. Seize the day!
I had to stop and sit a lot, as my heart rate kept spiking like I was exercising when all I was doing was walking or standing still. I didn’t want to overdo it, but I always wear a heart rate monitor, and if my heart rate was near (or above) 100, I stopped whatever I was doing and sat down until it had gone back down. I know my body is exhausted, and the size of the tumour makes life more complicated and challenging.
Later, I was given a prescription for a corticosteroid, Dexamethasone 1mg, to help reduce the inflammation while I await my surgery booking. This dropped my resting heart rate by 12 points in two weeks. I was actually starting to get a little bit freaked out, but it finally stabilised and after spiking to a resting heart rate of 72, is now resting around 55–57 at all times.
Over the weekend, which felt very long, we packed a hospital bag and my husband cleaned up the house. I spent the weekend in bed watching old comedy shows, including some of my favourites from childhood: “To The Manor Born” and “Fawlty Towers”, and also from my parent’s youth, “Ozzie and Harriet” and “The Dick Van Dyke Show”. I also re-watched “IT Crowd” and the first five seasons of “Seinfeld”, but both required more skipping or uncomfortable and awkward moments for adult situations and sexuality. For example, during one episode of the IT Crowd, Roy made up an excuse that he was masturbating when searching for information about the deceased parents of his girlfriend on Google. “What’s masturbation, mom?”
In another episode, Moss related an embarrassing episode to work colleagues at an impromptu work party where he and Roy had been in Amsterdam together and picked up two prostitutes. They were too awkward to do anything with them, so instead, they went to a fair and rode carnival rides with them for the entire day. It was hilarious. “What are prostitutes, mom?”
Please believe that I am happy to speak openly to my children and give them age-appropriate answers to tough questions, but in my present state, I want to laugh at a grown-up joke once in a while and not have to explain inappropriate things. So after the second of these moments, we turned off IT Crowd, which was rated TV-MA anyway. Seinfeld is rated TV-PG, but there are multiple episodes and themes as they discuss being single and various relationship situations that are also wholly inappropriate for kids. Such as “taking it out”, faking orgasms, “The Contest”, etc. So back we went to the 1970–1980s Britcoms of my childhood! I tried to put on a couple of episodes of Sherlock Holmes (with Jeremy Brett). Still, a primarily off-camera not-very-realistic-murder scene got my sensitive 9-year old very upset, and that was that for that one!
I spent most of Friday wishing to write an article I am still trying to finish and most of Saturday writing an essay that I did finish, reflecting on how I am feeling with my diagnosis. You can read that article here.
I have been decidedly overwhelmed by just how much my symptoms seem recognised as a brain tumour, yet no one noticed this or mentioned this possibility for over two years as I kept trying to be seen by people.
The eye dripping sensation has been maddening to me. I have mentioned this to every doctor I have seen, as well as my nose is swollen and constantly feeling like it is fluid-filled and my facial numbness. Facial numbness felt very much like something had to be very wrong, and if you google it, not much comes up that seemed to make sense to me—no instantly obvious problem. My face is continually dripping from the inside. I can’t feel things wrong when my eyes or nose are leaking, but there is the sensation of dripping. My nose doesn’t work. My eyes feel like they are smelling Vick’s Vapo Rub, or they got tingly shampoo in them. Do my eyes burn? They do not burn; they feel “goopy”, wet, or tingly. But not tingly. I can’t wipe anything away because there isn’t anything to wipe.
Repeating the words of the neurologist, I realised that what felt like goopy to me was fluid dripping onto the backs of my eyes, perhaps down my face, down the skin of my nose. Nothing that I had the vocabulary to explain.
I still don’t.
But at least I am not crazy.
At least finally, someone knows what is wrong with me. At least a team of doctors is now on a path forward to fix it.
I hope to get surgery this week.
As of April 10th, I am still waiting on a surgery booking, but hopefully, that will come quickly later in this month. The neurosurgeon I initially met with, referred me to a more specialised lead surgeon that removes my specific type of tumour in surgeries each week. They are both excellent surgeons, but as he explained, while he might see a few a year, his colleague does 50 surgeries like this a year. Even though they are both capable, one has more experience with this specific type of tumour. My new lead surgeon requested me to be seen by an ENT neurosurgeon, and an ophthalmologist, and get a visual field test, balance test, and hearing test before surgery.
Please send all the best wishes and prayers for a safe and successful surgery and a speedy recovery!
Thank you for those, and thank you for reading!
Please share with anyone else who might be suffering from a similar condition. May these loved ones also get treatment as soon as possible. Thank you!