Long Overdue Update

I'm not sure who's still following this blog or if anyone will see this post, but I have a few updates. I had to have a third jaw surgery in November of 2014. Basically, my original surgeon messed up, was incompetent, and not skilled enough to handle the level of complexity of my jaw deformity. So, I saw a world renowned surgeon who ONLY does jaw surgeries and other facial reconstructive surgeries (not your wisdom tooth type of oral surgeon). In preparation for this surgery, I went back into braces. But first, I had three gum graft surgeries to fix gum trauma from the previous surgeries and my poor bite. Then, I had four extractions and went back into braces. Then the surgery.

The first surgeon in rural town Washington State did not believe my jaws needed to be moved forward. My new surgeon had to move the top jaw forward 13mm and the bottom 16mm. He also tried to repair the damage the first surgeon had done to my chin, but was only partly successful because it was hard to "undo" the type of original surgery (a jumping genioplasty). The third surgery was successful in correcting my bite. I was left with more significant numbness, but it was bearable. I was very unhappy with the cosmetic result (not the fault of the new surgeon). The problem had mostly to do with how the original genioplasty was done. It was also because of how the extractions affected my smile. I really regret having the extractions, but they were apparently necessary. My bite is great, so I have to trust that my new team handled everything correctly.

In the late summer of 2019, it was noted that my bite was beginning to shift. So I went back into active orthodontic treatment (this time Invisalign instead of braces). I just finished and I pick up my retainers next week!

Also, in the fall of 2019, I was having significant pain around the areas of the screws and plates on my left side, so I had most of them removed. It was a fairly straightforward surgery that could be done in the office. No complications and I was pleased, except he was unable to remove the screws and plate in the cheek area because of the extensive scar tissue and how they were embedded in the bone. It was too much to have done in the office. So, I went to the OR to have them removed. The surgery was successful, with one exception: increased numbness. I am unable to move my left upper lip and thus cannot smile properly. It's really awful. I'm no longer able to smile, eat properly, or play the oboe.

I have to say, I regret my initial decision to move forward with jaw surgery. Now that I'm on this side of things, I don't believe what my first surgeon said regarding my TMJ. He made so many mistakes, how could I trust him on this one? Yes, my original bite was off and could only be fixed by surgery, but could I have continued to live with it? Yes. The main point of going forward was to relieve pain, and I've had more pain than I did before.

I don't want to scare anyone off from having jaw surgery if that is what your health requires. Just be very, very sure that your surgeon has enough experience and can handle your case. In the blogger world, I've seen so many who have come through this feeling and looking better. I am an anomaly, but I think my story is important.

Decision.

I've decided to take my blog down again.  No, nothing's wrong with me--healing from the 2nd surgery is going well and overall I'm pleased with the results.  It's just that with everything going on right now, I just don't have the emotional energy to keep up with this blog properly and post pictures.

I'll still continue to follow all of your blogs--and to SN, Terra, Sarah, and Amanda -- you all look great!

If anyone wants to keep in touch, please send me an email.

heldenoboe (at) gmail (dot) com

I'll leave this post up for a few days and then take the blog down.  I won't erase the blog; I may post again once the braces are off or if anything exciting happens. :)

Thank you for all your support during this journey!

After (2nd time).

The night before.  Bite is open and off center.

Just woke up.  Not too bad.

Not perfect, but much better!

Still a little off center, but bite is now closed.

I can live with this!

Second surgery.

Hello everyone,

The second surgery went well.  I am sorry I didn't update sooner; it's been a longer recovery than expected.

The surgery had a few surprises.  First off, my surgeon discovered why my bite had shifted.  You know those super-strong titanium plates and screws they put in to hold your jaw in place?  Well, I broke mine--all of them.  And my bone had grown back faster than usual, to its old place.  So what was originally planned to be a simple revision turned out to be an almost six hour surgery.

Amazingly, aside from being really groggy, the initial recovery has been easier than the first.  This time, I am not wired shut and it is much easier to drink and "eat."  I am on no-chew for six weeks, but it's a lot better than liquid only.

Thank you to everyone for your prayers, well wishes, and notes.  Some of you wrote emails, and I will write back as soon as I feel up to it.  But thank you; your notes mean a lot to me.

I will post pictures and more details soon.

Recent pictures.

I took these pictures yesterday.  You can see how far the midlines are off.  The upper is off-center to the right, and the lower off-center to the left, making the mid-lines look really off.  I'm the least pleased with my profile.  It just doesn't look like me.  I think the chin being so far forward makes my mid-face look even flatter than it did before.  Except for the obvious bite issue, I'm okay with how I look from the front.  I don't think it changed very much.  I am hoping that this second surgery does not introduce any changes to my nose, etc.  I apologize for my nostrils, but it gives a center line that shows just how far off everything else is.

Promised pictures.

First, THANK YOU so much everyone!!  Your support, prayers, and thoughts mean so much to me.

Here are some pictures:

Six week mark

Profile. (not really happy with that groove between my lip and chin)

Bite (immediately after splint is off)

The surgical splint.

Bite three days later.  It's not right. :(

Explanation and relapse.

Ok, sorry everyone that I took my blog down for a bit.  I was getting some viewer traffic that I didn't appreciate, and I've been a bit down with how things have turned out.

So, a bit of history: I had my double jaw surgery on May 30.  I was wired shut (completely and with wires, not elastics).  After the wires were cut, I was banded shut and had the surgical splint for five more weeks.  That's right--I had the surgical splint in for eleven weeks total.  I've lost 20 pounds that I have not gained back, which I am ok with, but I can't really afford to lose any more.

The day the splint came out, I was so happy.  I had to see my ortho right away since my upper archwire had been cut during surgery and so needed to be replaced the day the splint came out.  My midlines were quite a bit off, but I was told this could be fixed with orthodontics.  I got one elastic to wear (Korea strength).  All seemed well, but one day later, things were not looking good at all.

My bite began to shift in the direction opposite of where the elastic should have been pulling it (back to where it had been before surgery).  I went back to my ortho on day three.  He gave me a slightly different configuration for the elastic.  But it didn't help.  My jaw was pulling so hard in the opposite direction and I started to have very painful muscle spasms and jaw pain, headaches, etc.

I saw my OS a few days after.  I said I thought my bite was shifting.  He agreed.  He wanted to give me some more time in the new elastic configuration because technically, it should have been helping.  I saw him a week later: it wasn't.  He said right away that I would need a second surgery.  By that point, I really wasn't surprised, I knew it wasn't right and I was actually relieved that he saw it, admitted it, and was going to fix it without any question.

My second surgery is a week from tomorrow, October 3.  As it stands, he thinks he will only need to do the upper jaw, but that may change.  I have 6mm of overjet (that's post-surgery--but with the splint in, I had no overjet) and a cross-bite.  The bite is not as open as it was pre-surgery, but it's a bit open.  My OS thinks the relapse occurred because of the arthritic condition of my left joint which is very deteriorated and small, which gave it space to seat farther back in the socket once the splint was no longer holding me in place.  I don't believe it was surgeon error at all.  My case was very complex and at risk for this type of relapse (that's why I was in the splint for so long).

I will post some pictures tomorrow when I've had a chance to get them off my phone.

Aesthetically, I am mostly pleased with how things look on the outside, or at least, used to it now.  I'm not looking forward to any other changes unless they are for the better.  I'm a bit worried that he's not taking that into concern and only wanting to correct the bite, which I want him to do, but I want my face to look all right too!

So, good luck to all of you who just had surgery (S N!) and those about to (Terra and Amanda!).  Who knew I'd be joining in the next round of jaw surgeries?

Thanks everyone, for all your support.

Third post-op appointment + pictures.

Today I had my third post-op appointment.  It's hard to believe how quickly time has gone by.  My OS is pleased with how everything has been healing.  He pressed around the surgical areas, and pressed really hard on my chin.  I didn't feel anything (my chin is about 100% numb) and he said, "Oh, your chin is doing great.  Usually pressing that hard sends people through the ceiling."  I had no reply, but thought, "Then it's not very nice to press it like that, is it?"  My wires had worked themselves a bit loose again.  He decided to leave them as they are.  I'll see him again in two weeks since he is on vacation next week.

I feel like I still look a bit asymmetrical and that my midlines are off to one side.  But, I know that I have some swelling and some orthodontic work left to be done.  I think I will have a better sense of what things will look like once I'm unwired and the splint is out.

Here are some pictures from week 2:

Week 2.

Week 2.

Week 2--right profile.

Week 2--left profile.

Two weeks!

Hard to believe, but it's been two weeks since my surgery!  Here are some pictures...

Day 11.

Day 14.

My new gap.  It's 3 mm.

Second post-op appointment.

Yesterday I saw my surgeon for my second post-op appointment.  So far, he is very happy with how things are looking.  He said that my splint/wires were coming loose.  I had noticed this as well, and it was really uncomfortable because I just did not feel "safe" at this point, being only two weeks post-op, and having that much mobility.  He tightened up the wires, and things feel much more secure now.  The funny thing is, relatively speaking, I could still barely move my jaws even though things were loose, so I wonder how strange it will feel in four weeks time when everything is cut free.

Days 9 & 10.

Day 9. Left Profile.

Day 9.

Day 10. Right Profile.

Day 10.

Days 7 & 8.

Day 7.

Day 8.

One week!

It's hard to believe, but I am now one week post-op. It went by really fast, giving me hope that perhaps the next five weeks won't be so bad. I also had my first post-op appointment with my surgeon on Monday. Basically, he felt around my jaw bones to see how things were healing. He said he could feel my bone segments (this was not painful per se, but those spots are a bit tender). He checked all my incisions, said they looked great, and sent me on my way. I asked him when I could stop sleeping propped up, and he said I could stop now! I normally sleep on my side and he said that it wouldn't be a problem. I was really surprised but also really,really happy since sleeping upright has been uncomfortable. I don't have any restrictions on lifting or blowing my nose. I can return to light exercise. When I see him next, I'll see if I can get more detailed info on the op itself.

Days 5 & 6.

Just some pics.

Day 6.

Day 5.  Good morning??

Day 5.  It's hard to take a decent profile shot yourself...

Surgery Day Re-cap.

6:30 am:
I arrived at the hospital.  My good friend from the firm brought me (thank you, Molly!).  I waited for only just a bit before they called me back to go to a room since I had pre-registered the day before.

I went up to a room, changed into my hospital gown, and waited only a few minutes before a nurse came and started the IV.  That went smoothly.  Then, around 8:20 am, they told me that my surgeon was just about ready for me!

8:30 am:
Travel to OR area in a wheelchair.  I saw my surgeon briefly (he had just finished the op before mine).  Then I met with the anesthesiologist who asked me questions about drug allergies, if I had enjoyed a big breakfast that morning (no joke! I think he was trying to trick me or something), if I had ever had trouble with anesthesia before.  He asked me which nostril I breathed out of better.

Two nurse anesthetists also came and explained exactly what would happen.  I would go to sleep, and then they would start a larger IV.  Because of the nature of the surgery being in the mouth, I would have a breathing tube placed through my nose and down my throat.  The breathing tube would still be in place when I woke up in recovery, and then removed once they were certain that my airway was okay.  They said there would be a 50/50 chance that I would remember the breathing tube (I do not remember it at all).  They also explained that because of the length of the surgery that I would have a catheter (I don't remember the catheter at all either and experienced NO discomfort after surgery from it).  They also put some sort of pressure socks on that would help keep up good circulation in my legs.

The MOST IMPORTANT ADVICE they gave me: when I would wake up from surgery, there would be a lot of blood in my mouth.  They said not to swallow it, but keep pushing it forward into my mouth to let it drain out (or later be suctioned out).  They said this would help me not be sick.  I remembered this when I woke up, and I did not get sick once, or even feel like I was going to be sick.

9:15 am:
They started giving me something that would make me feel sleepy.  I remember the nurse asking me if I felt dizzy and I said "no."  She said, "Well, you'll feel something soon."  Then I noticed the lights spinning and I said (or tried to say), "Oh, it's happening now."  But I don't think I ever managed to say it, and that is the last thing I remember before the op.

Sometime around 3:30 pm:
I am aware that I am awake.   I don't think I'm in the OR anymore; it must be recovery; but my surgeon is standing over me saying, "Oh, I don't like that."  Then he opens my mouth, does some clipping and twisting of wires, and says, "There, a bit of orthodontic work."  (What he had done during the surgery is cut my top archwire so that he could expand my upper palate.  He had to cut it because the expansion was of the entire palate, meaning that I have about a 3.5 mm gap between my top front incisors.  It's very, um, not so cute.)

ANYWAY, then I remember that they took x-rays.  I was still in the bed, so they just sort of propped me up and snapped them quickly.

I was very hot after the surgery.  I remember they asked me if I wanted blankets and I tried to say no, and then they felt me and said, "Oh, she's really hot."  Then they started to wheel me to my room.  I heard my surgeon say, "Make sure she has her wire cutters," and that's when I knew that I was wired shut.

My surgeon actually came up to the room with me and made sure I was all settled in before he left.

After 5:00 pm, etc:
In my room, pretty much out of it.  I had to go to the bathroom A LOT, I think because of all the fluids I was hooked up to.  I don't remember too much of this first night.  The pain was not awful (of course, I am sure they were giving me pain meds through the IV).  I mostly felt numb.  There was a lot of blood in my mouth from the surgery, and a lot of new blood that came from my nose and the surgery site.  There was a suction thing at my bed that I basically used all night.  Fortunately, I never was sick.  They expected me to be, because they had this giant bucket ready in case I was, but I am so happy I wasn't.  Being wired, it would have been awful.

So, that is the run-down of my surgery day (at least, what I can remember of it).

Honestly, I can say the first night was rough mostly because of the blood and, just coming out of anesthesia, not always knowing exactly what was going on.  I did manage to get some sleep, and all-in-all, it was not horrible, just not the most pleasant experience.  My pain was manageable.  They gave me ice packs to help with the swelling.  Everyone did their utmost to help me stay comfortable.

Day 4.

Here are pictures from today.  I feel a lot more like myself!  The swelling is going down and I can actually smile a bit. :)  I have very little bruising.  I have my first post-op appointment tomorrow.  I will update then, and I promise I will get an update on my surgery day and time at the hospital.

To all of you who have stopped by, and to all who have left comments, THANK YOU so much.  I haven't had a chance to reply, but I have been reading your comments.  Thank you for being such a supporting community.

Day 3: Home and happy.

I came home from the hospital today. What a relief! I don't have a lot of energy today, but I'll try to post my surgery day re-cap sometime today or tomorrow. Thank you for all of your positive thoughts sent my way!

Day 2.

I'm still in the hospital.  I was hoping to go home today, but my OS thought one more day here would be better.  Here are pics from today.  My goodness, the difference a few hours can make in swelling!

Day 2. Good morning!

Day 2.  Almost time for bed!

Day 1.

I'll post more in-depth when I am home.  Here is a pic for now.  Blood is from nosebleed, not from my mouth!  I am wired shut.  Will be for six weeks.  I also have a splint.  Currently hooked up to IV fluids, so haven't attempted "eating" yet...

Soooo happy to be on this side of things tho!

Day 1 post-op

I made it!

Surgery was just under five hours. I was in recovery fora bit and came up to my room about 5:00. I'll post as I can. No pics from today, but I'll try for tomorrow. Must. Sleep. Now. Thanks for thinking of me today. You guys are great. x