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Wednesday, April 19, 2017

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.

Thursday, September 15, 2016

1 week post-TMJ Replacement Surgery!

I'm sorry it's been a while since an update - I kinda had something big going on.  I had my surgery! On Sept 6, I got my new TMJ joints implanted.  I was a total psycho wreck leading up to it, which is why I didn't really post. It likely would have been jibberish.  But here I am! Alive! Well! 

When I woke up from surgery, it was awful.  My head was totally wrapped up in dressing, and the pain was brutal.  I don't really remember any time in recovery, although I do recall that the nurse was quite nice - until she yelled at me to breathe.  Scary. That was a foreshadowing of what was to come. Eventually I got loaded up to my room on the 11th floor, which is where my memories start.   All I remember is pain.  For about 2 straight days, just pain.  There was nothing else in my mind except that.  My mom and husband came to visit, and my mom took pictures for my son's first day of school, hung up a poster in my hospital room that they had made together, brought flowers, but all I remember is thinking - I don't care about any of this. I just want to die.  The pain was so terrible, all-consuming...I didn't care about anyone else or anything.  This lasted pretty much a week.  

It certainly didn't help that the nurses were awful with their attention to my pain.   They would not check on me, and I tried to be sparing with my call button, but eventually I was pressing it non-stop.  They would take forever to come, and then arrive with nothing and ask what I needed, as though I was going to ask for a cup of water.  "PAIN" was all I could say.  By day 2 we figured out that my IV had been coming out, and the morphine was not going into my vein.....and the nurse said "Yeah, your IV is coming out and I don't know when I am going to have time to put it back in."  ARE YOU KIDDING ME!?!!?  I was pretty much delirious from the pain from then on. Listen, I'm not one to take all the medication until I'm loopy as fuck and can't feel anything anymore. I had surgery, sure, there's gonna be pain.  But something to take the edge off. Something so I can move.  Like, nothing crazy here. Anyhow, I digress. 

I was released on Friday, and the drive home through rush-hour downtown Toronto traffic was....awesome.  Yeah, I pretty much held ice-packs to my face until I dissociated from my body. Horrible.  Friday was spent in bed, continuing to wish for death.  Saturday the same.  Saturday at around 2:30 am I felt like my breathing issues were getting really bad, especially when I woke up feeling distinctly like I wasn't breathing and with a terrible crushing pain in my chest.  My husband called the hospital, and they told me to go to my local ER.  There's a brand-new beautiful hospital less than a kilometer from my house - perfect!! I spent from 3am until around 2 the next day there, being tested with EKG, blood work, X Ray and a CT scan with dye in my veins to see what's up with my pulmonary arteries, etc.  It turns out I had a pulmonary edema with some overlying passive lung collapse - awesome.  So I went home with some breathing exercises to do and watching my high blood pressure. Thankfully, the exercises worked to clear the fluid out within a couple of days.  I still have to go for a follow up X Ray in a couple of weeks, but my BP is down to 98/66 so I think I'll be ok. 

As far as my joints go, I had a follow up with my surgeon today who is very happy with my progress. 9 days after surgery I can open to 25mm and my pain has decreased hugely in the past couple of days. He reminded me that I had major facial surgery, in case I had forgotten, since I'm looking and doing so well. It was awesome to hear, but I'm going to try not to let it go to my head since it's been 2 days of feeling good and there are bound to be some hard ones ahead.  But so far, so super good!!

Wednesday, July 6, 2016

Moving right along!

I was just re-reading my last post, and I feel so bad! There have been a lot of updates that I haven't shared. I haven't been staying away intentionally...I've just been so busy at work and home, and when I am home I am far too exhausted to do much of anything.  I've been falling asleep anywhere between 8-10 pm each night, and that's my "me" window of time.  I'd say this is definitely because of the pain that I have been dealing with lately, I can't say that I know why it's been getting so much worse, but in any event, it has.  The joint pain is intense where it has been intermittent and manageable in the past.  The muscle pain and tightness has spread from the top of my head, down into my shoulders and upper back, and the regular treatments I get there are only helping to maintain status quo (or maybe not even) so there's little relief.  Anything that I do outside of sleep, work, eat, family time seems to drain me of any extra energy I may have had and I end up in a deficit that I have to work to rebuild with extra sleep and rest and pain meds.

So having said all of that, I am super excited that I have a date for my TMJ replacement surgery!! I was originally given November 1, but there was a cancellation and I was offered Sept 6 instead.  The company manufacturing my joints (Biomet) has confirmed that they are able to make and ship the joints to meet that date.  I had my CT scan to send to the company in early May, which was so easy y'all!! I didn't have to change into any hospital gown - just walk in, lay down on the machine bed and 5 mins later I was walking back out.  Dr P's office took impressions (covering my braces with wax beforehand so they slid right off) and I've been X-rayed to the moon and back, but now I'm ready to show up on Surgery Day and give'r.

In the end, I didn't end up doing the plan that I was given and outlined in my last post.  My surgeon didn't feel comfortable putting any final restorations on my teeth before surgery, so I went full steam ahead with the scanning and I'm so glad I did, or I would not have been offered the cancellation when I was.  Those pretty teeth with have to wait.

In fact, I just had my final appointment with my surgeon, Dr. P, yesterday.  He took final x-rays and pictures of my bite and face, and answered all my questions.  I got a pretty intense surgical package that I have to complete with my family doctor and send to the hospital.  Then the hospital will schedule a date for me to go in for an anesthesia consult and fit me for compression stockings for the surgery (to prevent blood clots in my legs since I'll be out for so long).   I have to order the Therabite for use after surgery in rehab, and visit my orthodontist to get surgical hooks attached to my braces so that the surgeon can wire me shut while he works on me.  I will also need arrange for after-care with my family.  I will need help from my mom, and possibly others, to help my husband look after my son and I.  My son will be starting SK the day after my surgery, so someone will need to be with him that week, as well as taking me to the hospital and checking in on me as I am recovering there for a few days.

The surgery is set to start at 8am on Sept 6, so I've been told to arrive at the hospital at 6am.  The hospital is downtown Toronto, and we live in a suburb so it will be a smooth ride down there.  They estimate that the surgery will be over around 3:30 pm.  Then it's recovery!  I'm told that right away I'll be eating things like scrambled eggs and mashed potatoes - I'll be sure to stock up!!  At least I won't be wired shut or eating through a syringe! I am told I might have elastics on my braces, but I'll be able to fit in a spoon.  Fingers crossed.

I plan to make videos as I go along, starting soon so that you can see the before, during, and after. I really want to share this experience.  Watching videos like Shea's (sheasmith.org) have been so incredibly helpful to me.



Wednesday, April 6, 2016

New plan for surgery

Gosh, I feel like it's been so long that I posted about my braces, dental work or surgery. I apologize! I know what it's like to look forward to updates about progress and I've been slacking. 

To bring you up to speed, I'm at the last few wire stages with my braces before surgery.  I was booked to have my CT scan for surgery at the end of April, but that, too has changed.  When my surgeon booked me for the scan, we had thought it would mean (calculating forward 3-4 months from scan date to implant delivery) that put me in August for surgery.  But because the hospital only gives him 1 day/month in July and August, and the # of patients ahead of me who already have had their scans done, I'm really looking at the fall to have the surgery.  This means that if I have the scans done now, the implants will be ready and sitting waiting for me for a couple of months - months during which nobody can touch me because my bite can't shift one bit before surgery.  So the new plan is to get a bit more work done before I schedule the scans in May or June.  This should not slow down my surgery timeline, but will allow me 1-2 more months to get some work done before surgery, rather than after.

I have to tell you, when I got the date for the CT scan, I completely lost my mind.  Like, LOCO crazy, for real.  I had no idea it was going to affect me that way, but this journey has been so incredibly long and hard, that even the thought of another root canal is enough to send me over the edge.  I'm not kidding - for someone who truly loves her dentist (and I mean real, deep love - she is one of the best people to come into my life) I get extreme anxiety going to get any work done. So - jaw replacement?  I just couldn't even handle the thought.  I wanted to jump off a bridge, cancel the surgery, scream out loud...howl at the moon...whatever made the anxiety go away. I'm not sure how I'll cope when the next scan is planned, but hopefully a lot better when I've got some new teeth in my head! (How I'm preparing mentally is the subject for another post.) 

The work that is planned to be done is some more teeth straightening (I had another wire change on the top that wasn't supposed to happen) and my teeth are looking even better as time goes on!  I can't tell you how great that feels.  I also can say that, generally speaking, the wire changes are becoming a little less painful as I get further into treatment.  Of course, I'm several weeks out from the last one so it's easy to say that - I do remember there being a lot pain after the last one that really stressed me out because it was in the top front 2 teeth.  I'm deathly afraid of (and too close for comfort to) losing these teeth, so any pain there puts me at a constant DEFCON 3 level. 

Another thing that my dentist (Dr.T) and orthodontist (Dr.O) came up with is to do the top front 8 crowns before surgery.  There are a couple of reasons for this - to get them in before I potentially lose my accident insurance coverage, and to get them done now instead of after surgery when I'll be recovering.  They also thought (how incredibly sweet of them) that if I could get these nice, perfectly shaped, white permanent teeth on, I'd feel a lot better about myself psychologically before going into such a hard surgery and recovery.  And I have to say that I agree.  

So that's the new plan for now!  If you have any questions, feel free to ask. 

Friday, March 18, 2016

Hey there Chronic Pain:

You suck.  A lot.

At this point, I feel like that could be my entire post on this subject.  But if you know me, you know I can't shut up, so it won't.

So let me just tell you (chronic pain) what else I have to say.

Thank you for being there every minute of every day.  If you're one thing, it's dependable.  Thanks for being there when I wake up in the morning, and for feeling like a hangover that I didn't earn.  On second thought, maybe it was that can of ginger ale I had last night.... or not.  Thanks for getting worse when I get tired. Thanks for making me tired.  It's really fun to run out of energy at 3pm and have to pretend that you're fine for the rest of the day, because nobody wants to hear about you.  And even if they did, I don't like talking about you! You're depressing!

Thanks for getting worse over time and building up a tolerance to pain medications.  It's really fun to have to justify to your doctor, your friends, yourSELF why you're asking for a stronger medication. It isn't embarrassing, and it doesn't make me feel like a pill-seeker.   Thanks for the mood-swings that one day make me feel like "fuck yeah, it's my pain, I'll take this if I need it! I don't need to feel bad!" and the next day make me feel like "no way, I'm not taking this pill, what if I get addicted?" even though I actually hate all of the side effects of pain medication, EXCEPT for the one that makes my pain go away.

Thanks for making me feel like an old lady. When my friends and coworkers talk about the crazy things they do like go to the gym, run a race, or go out at night, I smile and nod and pretend like I do those things too.  Nope, I don't go to bed at the same time as my 4 year old son! My husband thinks it's sexy that I put my jammies on at 8 pm and pass out!  What could be more 34-year old like behaviour??  I tried doing some 3 km runs a few days a week, and guess who not so subtly told me that I can't do that??? YOU did! Thanks for the reminder.

Thanks for turning some days at work into complete wastelands of productivity.  I really love sitting and staring at a screen, wishing you'd go away so that I could focus.  I sit there anyways, so nobody thinks I'm a slacker who goes home sick all the time.  Because if there's one thing I've learned is more important than your health, it's what other people think of you.

And finally, thanks for getting a whole lot worse when supplemented by hormones.  Because going through uterine surgery and IVF is a whole lot of fun on its own....I need you to be there too.

Come to think of it, it kinda seems like you have a little bit of FOMO.  Or you would, if you ever just pissed off for a while.



Monday, February 22, 2016

Hello 2016!!

Hello everyone!

I'm back! I'm here!  Did you miss me?

Sorry for the hiatus, or maybe you're welcome for the break :)  It's been a really busy few months for me, particularly with work as I transitioned to a new location of our company (new building, new environment, team, boss, etc) and it has been busy.  So good, but busy.   I have been so exhausted at night that I just haven't felt like writing.   If I'm honest, it has been kinda tough for me personally to cope with the lack of energy.  Great at work, but really tiring.

Where am I with my jaw and teeth?  I am scheduled to have my next, and final, wire change on my lower braces only on March 7!!  I am so excited!! No more wire changes. It hardly seems real.  My teeth are pretty straight now, but the bottom ones have only just started to look that way, so it does seem surreal.  Since I had a lower canine removed, my front middle lower teeth are all shifted, and they don't really line up properly with the top ones, but it is something I'll just have to get used to.

That means I'm one (big!) step closer to my Jaw Replacement Surgery.  Once this wire change is done, and the teeth settle in about 6 weeks, I can have the big scan done.  This scan is crucial - it will be sent to the implant manufacturer and it's what they will use (along with some impressions and a lot of my surgeon's input) to design and build my custom joint implants.   Once they receive the scan there's lots of work to be done, consulting with my surgeon and getting these babies just right.  It will take about 3 months to make them, and only when they are about 1 month out from completion will the implant company give my doctor the ok to schedule the surgery.  So if you add up all that time, I'm looking at roughly August for the whole big deal.  Implants.  In my face.

So it's basically starting to feel super real to me now.  I'm thinking about when I should let my work know, how long I think I might be off for, what I'll need for surgery, how to prepare, all that stuff.  Should I take a vacation before I go off?  (I'm thinking yes).  What will I need to buy?  How am I going to feel?

Of course, there's a massively terrifying part of this too. What is the pain going to be like? How long will it take me to feel relatively normal again?  I remember how long and how hard healing was when I just broke my face..this has to be just as hard.   Most certainly, my face is going to change after this.  What is it going to look like? Will I be ok with it?  How will  my massive scars heal?  Will my son be afraid of me? Will I have facial paralysis? Will I be able close my eyes?

On the plus side, I get to get a rad new hairdo for it all.  They're going to shave my hair above my ears, and I'm not just going to let the nurses do it.  I'm planning to prep...embrace my inner rocker chick...let my freak flag fly!  What do you think of this look??


Monday, November 2, 2015

Pain Science on Bruxism, Jaw Clenching amd TMJS

I know that I have talked before about how I get my head massaged (and shrunk, but that's a different topic) every week or two on the reg, but I have yet to post any of the science behind it.  My chiropractor focuses on my temporalis, masseter and suboccipitals during treatment.  Speak English Tiffany! What do those sciency words mean?? Why do you give your chiropractor so much money to massage them?

Ah.  Relax my friends.  I don't have to explain all of this, because blogger Paul Ingraham (a self-described over-qualified massage therapist) at PainScience.com has published the most helpful article on Massage Therapy for Bruxism, Jaw Clenching and TMJ Syndrome. In this article, he describes the Trigger Points, or muscle knots, that can be self-massaged for TMJ pain relief. Am I just wasting my money? (Just kidding...I couldn't do all that Dr. Nino does for me).

Not only does he talk about where to push, but the article describes, in easy to read style, your masseter muscle anatomy, physiology, the areas that it can affect, symptoms and tips to help you relax your jaw muscles and how to care for them by lifestyle adjustments.  In fact, there are so many links in there that are incredibly useful and relevant, I can't even describe them all.

Anyways, if you are still reading here, stop.  Go to the article. It's long, but it's so incredibly useful and educating.  And if you are reading this blog in support of me, but not because you're dealing with TMJ pain...check out the Pain Science blog.  He has tips for all kinds of aches, pains and injuries.  I highly recommend checking it out, even just to better understand what's going on inside all of us.


P.S. There's also an article linked in there called Pain Changes How Pain Works.  It's a discussion about how pain itself results in more pain with less provocation, and he describes it as "Owner's Manual Stuff".