It’s been a very long wait, but I finally had a styloidectomy on Dec 24, 2024. It’s been about 60 hours post surgery.
My previous post a few years ago is here:
This forum has been very helpful, and I’m sorry I’ve been unable to participate more. My health has been really, really bad for the last three years. I hope to be able to participate more as I recover and can share what I’ve learned as things got worse and worse.
I’m keeping some details in the private Canadian thread for now, but I’m not sure the doctor that helped will be able to help others unless they get the point I got after 17 years of worsening symptoms and eventual incapacity. It’s a low priority surgery and the medical system is overloaded in Ontario, with a lot of recent retirements as well.
Quick summary:
17 years ago, I started to have a series of stroke-like episodes, left-sided numbness, weakness, confusion, couldn’t speak, drooping eye, etc. They didn’t usually last long, but left me confused and less able to work effectively for weeks or even months afterwards. I eventually realized they happened when I was doing certain things, and I now recognize some earlier signs up to 20 years ago: mental fatigue at the end of the day, concerning brain zaps when looking down to read notes or working on papers for awhile, etc. Eventually tracked down to turning my head to the left or looking down, or raising my left arm/shoulder, and even later noticed I had pretty bad neck pain before and during an initial cluster of events and worsened brain function.
Minor symptoms slowly became more severe, triggers more sensitive. Kept things at bay for awhile with a lot of exercise, physio, posture work, high quality/anti-inflammatory food, and just keeping my head upright and to the right as much as I could.
Only so much I could do on my own, eventually took over more and more of my life until I could only work part time, with my partner supporting me with household chores and collapsing at night, and for the last 3 years ending up in a state where I was for the most part just surviving-- trying to minimize symptoms while my family looked after me. I started falling more and more, and have been mostly house-bound to prevent further injury.
Found this site sometime between 2015-2018 actually, and went to an ENT to get my styloids looked at. Unfortunately, they said my styloids were not long enough and my blood vessels were not at risk of compression (imaging study reports failed to note compressed veins (tapered to a point), and styloid position against atlas). It wasn’t until 2021 that I found out that both internal jugular veins were compressed, with zero flow in one or the other much of the time, my styloids were right up against my atlas, and my vagus nerve was half-normal size, possibly abraded by styloids.
I was told to get a styloidectomy ASAP, and was assured I’d get one in Canada within a few weeks or months. It took almost 3 years.
Throughout, it didn’t help that my family doctors have been unconvinced, and I was unable to self-advocate or communicate clearly due to wear-down and near-constant confusion by this point.
I greatly regret not pursuing treatment in the US. I had planned on it as a back up, but lost the ability to think clearly enough to apply and besides thought my surgery in Canada would happen much sooner than it did. I’ve spent far more just staying alive, and many times more in lost work than it would have cost for surgery. I foolishly didn’t apply for disability thinking I’d be back to work within 6 months to a year.
Surgery:
The surgery itself was the best Christmas present I could hope for. I had eventually used a 3rd party service with help from my family, Medical Second Opinion, to try and communicate with my surgeon and get feedback on why my surgery was still being delayed. After having a second meeting a year and a half after the consult, I was quickly squeezed in a month later.
The surgery itself went well on the surface, but it was only on one side and they removed 1.5 cm of my now 2cm styloid. It took longer to recover then they anticipated, and I had some abnormal heart rhythms and very high blood pressure post-surgery. The operation was extra-oral, going up through a small incision at the base of my neck on the left side, using cameras and tools to cut off the styloid at the skull and remove pieces of it by sliding it down the stlyloid-hyoid ligament.
Originally, they had planned a much more invasive surgery, and may have done more if they discovered something along the way. In the meantime, I’ve been getting myo-orthodontal work done which has widened my palate and jaw and may have made the surgery easier (as was the plan).
It is very painful. Interestingly, most of the triggers for pain are the same triggers for the stroke-episodes and brain fog. Swallowing is very painful still, but it is getting better. It’s now about 60 hours post-surgery, and I’m at home. I’m still avoiding harder foods and need help doing most things. It’s hard to tell how successful it’s been, since I’ve been told to avoid triggering movements as much as possible for a couple of weeks. However, I’m thinking more clearly and am more aware than I’ve been in a very, very long time, even on painkillers. The main test will be when I can do things like bend over to pick something up or look down and use a cell phone without getting dizzy, losing my abiliity to think or use the left side of my body, and risk falling down.
In many ways, I wish it had been more painful from the start. It would have made it much easier to avoid triggers and get medical help sooner. At this point, even if the pain were to be permanent, it would be a very welcome upgrade.
I’m still having some brain fog and numbness issues though, mostly when sitting or standing for awhile, or after coughing. I’m hoping this is due to latent inflammation, and it does seem to be getting better each day so far.
I would not have been able to write this at almost any time in the last 8 months, which is probably the best indication so far that the surgery was a success.
Great that you’ve been able to post & let us know how you are!
