Update post TMJ Replacement

Wow, it sure has been a while.

I remember reading blogs and watching videos of people who had had TMJ replacement and thinking "I'm going to write/video the most updates after surgery so everyone knows what it was like!"
And then I didn't. Oops.

And here's why.  The recovery was hard. So fucking hard.  It was brutal and I didn't want to scare anyone about to go through it.  A lot of it was hard because the care I received in the hospital was AWFUL (no shout-outs to you, Mt Sinai) and then my post-op complications were SCARY.

So, to point #1.  The hospital care.
I'll mention a few of the finer points:
The nurse who "didn't know when she'd have time" to re-insert my IV that gave me pain medication.
The nurse who told me "well everyone who has that surgery is in a lot of pain".
The doctors who told me to "set a timer on my phone" to remind myself to ASK for pain pills because they weren't giving me IV pain medications on time, or they weren't lasting long enough.

Anyways, it was horrific. I completely dissociated on the car ride home (2 hours in Toronto traffic) because the pain was so horrible.  As I laid in the hospital bed, I thought to myself: take care of these joints, because I am not strong enough to go through this again!

Now, sure you can argue that this is all due to Canada's universal health care having lots of problems, and maybe that's so but I can also tell you I paid $0 out of pocket for this surgery, and I know many in the US who have been fighting to have it for years with little hope.  So let's leave politics out of it.

And onto #2.
On my first night home from the hospital, I was sure that I wasn't breathing in my sleep.  I woke up a few times gasping for breath, just knowing I hadn't taken a breath in a long while, and I was scared that I would just stop breathing in my sleep and die.  I had been given oral Dilaudid for the pain, and knowing that it can suppress breathing, I thought it was the cause.  So I was afraid to take pain medication and I was afraid to fall asleep.  Finally I realized that I couldn't make it through recovery like that, so I woke my husband and told him "I'm not breathing in my sleep".

Of course, my surgical team had given me instructions to call them first, and NOT to go to a local ER since they wouldn't know what to do with my condition. So my husband called them and told them the situation. Begging to not have to a. drive all the way to downtown Toronto again and b. return to the awful, inhumane hospital, they finally gave me the ok to go to my local ER with strict instructions not to touch my face.  Which is awesome because the local hospital is 1 km from my house and brand-spanking-new.

After a night in the ER and a CT scan with dye in my veins, they found out that it was fluid on my lungs that was causing them to partially collapse.  Hence, being unable to breathe.   The treatment was pretty benign, actually - deep breathing exercises to break up and move the fluid.  This worked surprisingly well over a few days, and I could at least take pain medication without fear!

Over the past few months, the recovery has gone really well. I can eat many more foods than I used to be able to, and since the joints aren't there anymore, presto - no more joint pain!  It's not all happy-happy though.  The recovery from this is LONG and slow.  I am still very tired a lot, and I do still have a lot of muscle pain in my face and head.  There are nerve spasms - sharp, pointy pain that shoots through my face at any time as the nerves regenerate.  I still see my chiropractor every week to 2 weeks for muscle release treatments that HURT and I still get occasional tension-related migraines.

On a personal note, I still feel disconnected to people a lot.  I don't want people to understand anymore, I get that it is a random "illness" and that nobody wants to hear about your troubles forever.  But I also just want to be alone. I find myself neglecting friendships, relationships and losing patience with situations.  I feel very overloaded, trying to get back into regular life, especially since I am still going through dental work to restore my teeth. It's like this will never end.....I'm getting glimpses that it really never will - I may always be in pain after eating something crunchy/sticky/meaty/whatever.

In the end, the surgery was helpful, it was the right decision and I don't regret it.  It took away a lot of pain, and from what I hear from other patients, I have more recovering to do - hopefully it continues to get better!

Thanks for reading.