Should I have REVISION surgery?!?!

[KafkasGhost]

Hi all,

I am one year post-op Le Fort and three years post-op SARPE surgery. I have the surgeries to fix a crossbite and underbite that I was born with. In 2015 I had SARPE surgery but something went wrong. I was implanted with a bone-borne palatal expander (screwed into the sides of the roof of my mouth as opposed to fit over my teeth) during surgery and instructed to turn it once per day. This would achieve the width we needed to move forward and advance the now wider jaw with the Le Fort surgery after braces did their thing for a year or so. After about 2 turns the device was causing excruciating pain. The surgeon's office advised me to continue turing the device and that the pain was normal. This level of pain was so sever that I k ew something had to be wrong, but they reassured me everything was fine. At this time, the palatal expander was also starting to warp, as one of its telescoping rods was bending downwards and pushing on my tongue. Still, they advised me to keep turning. Well, eventually I was proven justified in my concerns as the device fractured and broke. It had been on the path to failure the entire time. When the device broke, the width that I had achieved between the two front teeth was reduced by half, and at that point I was barely to half of the width that we determined before surgery I would need. My molars were still in crossbite, but the surgeon felt that I had gotten enough width to just move on. He didn't replace the palate expander, he didn't operate again, he did nothing. I moved on and had my braces put on. Also worth mentioning that when the device broke it immediately gave me tinnitus which still hasn't gone away. I have many other complications and pains that I'll describe further down.

(Before I go any further, I am not looking for any legal advice... I have already consulted numerous attorneys and made lots of complaints.)

Fast forward through about a year and a half of braces and my teeth are allegedly ready for the Le Fort to get rid of the underbite. I had been complaining that the upper jaw wasn't wide enough but the surgeon and orthodontist repeatedly said everything was going to be fine and that advancing the jaw would compensate for the lack of width. I have the Le Fort and again I am confirmed when the molars are still in crossbite. Fast forward another year of post surgical orthodontics to try and bring the molars out and the problem remains.

The complications that this has caused include hearing loss in my left ear, tinnitus in my left ear, PTSD, pain in both sides of the jaw, the left side of the jaw dislocates and cracks when I open it while putting pressure on it, my smile is narrow and I don't show my canines or enough of my front teeth in general when I smile (because they are not pushed out enough to push out the lips properly,) a painful crossbite on the left and right sides but much worse on the left, a "traumatic bite" where my lower teeth push against my upper teeth when I bite together, causing my canines to wiggle and hurt a little when I bite together, nerve damage and feeling loss to the front top teeth, a weird pain near where the device fractured on the roof of my mouth, and TMJ crackling and popping when I open my mouth.

I got a second surgical opinion that suggested I have revision surgery to fix this, but noted that its very risky. Second opinion also stated that the surgeon would have overexpanded the jaw if anything because there is always relapse. The second surgeon is nervous about doing the revision because he'll need to remove old hardware but says its the only way my teeth will ever fit together properly. He is trying to talk me into just living with it. The first surgeon says I don't need further surgery and has completely abandoned me - will not respond to my messages.

This abandonment and confusion and need for more treatment is nearly ruining my life. I have at times contemplated suicide under the immense stress and dealing with the complications alone and with no support from doctors. I am ok now, I just need to fix this and move on. I feel trapped. I am unhappy with my smile, my bite is painful, and my surgeon has left my side.

Should I proceed with revision? My complications are all I think about, but the revision risks are real. Do I live with this pain and the knowledge that this all went terribly wrong, or do I suck it up, fix it, and move on after another 2 years of treatment? It has been difficult even writing this as it makes me sick to my stomach to reflect on this process.

[assertives]

I'm sorry that you have to go through all these complications and that the outcome your surgery has not been good.

I am no professional, and neither did I have jaw surgery either. But I just wanted to say though, if the complications that you are now facing are this debilitating, it may be worth it to seek a revision. Out of the list of complications that you have listed, the functional ones are progressive, and will only get worse over the years, especially the TMJ and bite problems. Your teeth and TM joints will get worn down prematurely, and the pain will only get worse. I can't comment on the hearing loss as I know nothing about it.

With regard to the revision, have the surgeon discussed the risks with you? Perhaps you may want to write down objectively what are the risks vs the benefits and what are the long term ramifications of each and then decide if the risks are worth it to you. But mentally prepare yourself that there may never be a perfect fix, and that you will need to make do with some kind of compromise, just which one you are more likely able to live with possibly for the rest of your life.

Perhaps seek a 3rd or even 4th opinion? The 2nd surgeon may not be competent enough to do the revision, but I'm there will be others out there who can do it. Take one step at a time and cross each hurdle as you come to it. Last thing I wanted to add though, is trust your gut, if you feel something is not right, seek more opinions. I truly hope you find a pain-free and satisfactory resolution to your problem.