28 Things I Wish I Knew Before My Surgery

The MRI scans are fascinating and rather beautiful

In June 2016, a meningioma (very benign brain tumour) was found. It had been giving me epilepsies and shoulder dislocations that mostly took place when I was asleep.

On Sep 13, I had my meningioma surgery.

There were so many things that would have helped if I knew about them before. Here are some of what I wish I knew before the surgery:

1. That side effects of anti-epileptic meds could be so strong
2. That they would affect my sleep patterns so badly, yet lack of sleep is a strong trigger for epilepsies
3. That missing out on a dose has severe consequences
4. That even taking it a few hours late is just as bad
5. That even after the tumour is removed, it takes a long time more for the brain to expand back into it’s original shape
6. That even after, I am still susceptible to epilepsies
7. That it takes a lot more time than “2–3 months”, as I was initially told, for complete recovery
8. That the doctors’ definition of “complete recovery” was very different from mine
9. That the surgery itself takes a big toll on the body, making it even more susceptible to seizures
10. That the post-surgery scarring as part of the healing process can also trigger seizures
11. That because of this vulnerability, it takes 2 weeks to recover after a seizure — though it took only 5 hours previously, pre-surgery
12. That meds can lose its effectiveness overtime
13. That it’ll then be required to increase dosage, thereby intensifying the already undesirable side effects
14. That you’ll only know when to increase dosage after another epileptic episode, which now makes me question its necessity
15. That anesthesia and medicine dooo nooottt mixxxx well at all
16. That interrupted sleep is one of the worst things you can have, especially when you need it
17. That jetlags would be so bad, and even become a triggering factor
18. That shoulder surgeries require changing of dressing every other day, therefore making it hard to have plans
19. That stuff like this aren’t straightforward at all and no doctor can explain all this since the possibilities are endless and they vary with circumstances
20. That 1 year is a more accurate estimation for complete recovery
21. But that it is still a rough estimation, and not a generous one
22. That taking a gap year from the start was an available option
23. That there are academic programs you can do during a gap year
24. That I really don’t notice when I’m straining myself, even when I’m not fully recovered (thanks Sports Psych ...?)
25. That that would only impair the recovery process and it’s best to really, really take it slow
26. That all this takes a lot of explaining for people to properly understand
27. That it’s not easy explaining to close ones how to treat you — some do it perfectly, many do it decently but some don’t, not at all. It’s a fine line.
28. And that it’s even more difficult to convince them that when others worry, that’s when I worry.

Throughout all this, I noticed how we don’t talk about such health issues as much as other types, like knee injuries, nor do we talk about them as much as we should.

Every little bit of information I had from people sharing their experiences from surgeries, being in the hospital, visiting someone in the hospital settling admin, etc. helped so much and maybe sharing this could be useful to someone. I was so clueless when it all started especially since I had almost zero experience in the hospital, be it as a patient or as a visitor.

I’m extremely open to talking about this and all the “adventures” that came along with it. Also, there isn’t a need to change your tone to one that you’d use for tragedies, because this isn’t one.

As of now, I’m still on meds but I’m trying to get off it on my next consultation. I’m a lot better at managing the trigger factors for seizures, after so much experience. I still have a semester of flexible schedules to go so waking up without an alarm does help with getting proper sleep and therefore getting a full recovery, asap.

There are so many people I’m super grateful for for helping me through this — everyone who gave some form of moral support, Stanford Summer buddies, family, doctors-to-be for their generous advice, French Healthcare System, les amis de Paris and especially especially Tanner, Jasmi and Nora ❤

Lastly, #throwback: