Why is my palate always in incredible pain following Sarpe?

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Metalmouth33
Posts: 33
Joined: Fri Mar 10, 2017 10:53 am

Why is my palate always in incredible pain following Sarpe?

#1 Post by Metalmouth33 »

Heyo, so for some reason my pallet is constantly subject to an enormous level of pain.
I had a sarpe surgery just over five years ago, followed by two years of braces.

After some thought I've come to the conclusion that this pain is not phantom nerve pain. I do have some slight numbness in the gums directly where the surgery took place, there has been some occasions where I have felt something like a burning feeling in this spot, but this a different feeling from the pain in my palate and it is in a different location.

The pain i'm complaining about rests squarely in the top roof of my mouth. When I tongue over my palate, I can feel the unnatural shapes in the bone that resulted from Sarpe. The place where the bone is split is exactly where this pain is stemming from. If I jab it with my tongue, it starts to hurt even more.

Why does the bones that make up my palate ache in throbbing pain? How come this pain has not alleviated itself over time? How come this pain has been getting worse over time? It comes and goes, meaning the level of the pain varies from day to day, but there is a minimum level of pain that is always there. Recently I've had a few days where the pain threshold was approaching 8/9 out of ten.

It's hard for me to remember when I started to notice this, but the only clear memories I have of myself without any pain/discomfort is before I started all this stuff. I would do anything to get that feeling back. Please, someone, if you think you can guide me I'm all ears.

jawregret1
Posts: 69
Joined: Wed Sep 14, 2016 5:43 am

Re: Why is my palate always in incredible pain following Sarpe?

#2 Post by jawregret1 »

Hi, I'm sorry to hear you're experiencing pain post-surgery. I believe I'm experiencing something similar, but I had double jaw surgery. The lefort 1 has caused me pain in the roof of my mouth that I wish would go away. I'm 11 months post op.

I hope someone comments if they know more about this, but I just wanted to let you know that you are not alone.

snapdresser
Posts: 941
Joined: Wed Feb 18, 2015 7:31 am

Re: Why is my palate always in incredible pain following Sarpe?

#3 Post by snapdresser »

After 5 years?! Wow. I'm not a doctor, but it sounds to me like it's a nerve issue or there's a problem with the way it's healed. Maybe there's some sort of bony edge or a long-lasting but incredibly slow infection? Seems pretty crazy to me, but I don't THINK pain of that level at 5 years post-op is normal. Have you considered going in to your surgeon to discuss it?
No braces
1-piece LeFort I + BSSO + Sliding Genio on 10 JUNE 2015!
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jaime
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Location: Southeastern Michigan
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Re: Why is my palate always in incredible pain following Sarpe?

#4 Post by jaime »

This does not sound normal at all, and you definitely need to speak to your surgeon. I had the surgery almost 3.5 years ago. I don't remember having any pain in my palate except maybe in the first couple days after surgery.
SARPE: December 19, 2013
Expander out/TPA in: May 13th, 2014
Upper and lower braces: May 21, 2014
Lefort I + BSSO + sliding genioplasty: June 11, 2015
TPA out: December 17, 2015 (due to issues)
Braces off: November 28th, 2016!!!
My blog
My ArchWired thread (last updated November 29th, 2016)

Metalmouth33
Posts: 33
Joined: Fri Mar 10, 2017 10:53 am

Re: Why is my palate always in incredible pain following Sarpe?

#5 Post by Metalmouth33 »

An infection or a problem with the way it healed might be possible.

I don't want to go see my old surgeon. 1. He's literally across the country, and I live in Canada. 2. He never showed me much care to begin with, especially after the surgery. I read about on here how some of you guys had regular checkups with your surgeon to make sure things went smoothly immediately after the surgery. My surgeon saw me once and only for about two minutes. No no, the only place I'm seeing that guy now is in a courtroom, or in a boxing ring. I'd prefer the boxing ring, but the courtroom might prove to be more beneficial to me.

For now, I have an appointment with a Dentist. I'm gonna see what he thinks first.

Is it possible that my new bite is stretching/ripping the bone?

Metalmouth33
Posts: 33
Joined: Fri Mar 10, 2017 10:53 am

Re: Why is my palate always in incredible pain following Sarpe?

#6 Post by Metalmouth33 »

Also thank you for your sympathies.

snapdresser
Posts: 941
Joined: Wed Feb 18, 2015 7:31 am

Re: Why is my palate always in incredible pain following Sarpe?

#7 Post by snapdresser »

Unless you're a kid and your palate hasn't fused, that seems unlikely. BUT if there is an issue with the union, like it's fibrous or otherwise not healed solidly, then I could see that. Someone on here had a fibrous union after their LeFort and it did move a little when biting down, but I don't recall them saying it was particularly painful.

That's really unfortunate that you can't use your surgeon as a resource. He's the one who would have the best idea of what may have caused the issue. Your next best bet, I suppose, would be a surgeon with a lot of experience fixing other people's work. If you're not going to go back to your surgeon, you should at least get a copy of your file to show to the next surgeon. I suspect they'll still want to do some imaging on you to check the status of the union, see if there's some sort of abscess maybe, etc.
No braces
1-piece LeFort I + BSSO + Sliding Genio on 10 JUNE 2015!
Image

Metalmouth33
Posts: 33
Joined: Fri Mar 10, 2017 10:53 am

Re: Why is my palate always in incredible pain following Sarpe?

#8 Post by Metalmouth33 »

snapdresser wrote: Your next best bet, I suppose, would be a surgeon with a lot of experience fixing other people's work. If you're not going to go back to your surgeon, you should at least get a copy of your file to show to the next surgeon. I suspect they'll still want to do some imaging on you to check the status of the union, see if there's some sort of abscess maybe, etc.
Do you know of someone like that?

snapdresser
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Re: Why is my palate always in incredible pain following Sarpe?

#9 Post by snapdresser »

Metalmouth33 wrote:Do you know of someone like that?
I know of some within my region and as well as a couple US-renown surgeons, yes. It'd probably be easiest to find one close to where you are though. You're in the US?
No braces
1-piece LeFort I + BSSO + Sliding Genio on 10 JUNE 2015!
Image

jaime
Posts: 853
Joined: Mon Jun 02, 2014 8:00 am
Location: Southeastern Michigan
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Re: Why is my palate always in incredible pain following Sarpe?

#10 Post by jaime »

Metalmouth33 wrote:An infection or a problem with the way it healed might be possible.

I don't want to go see my old surgeon. 1. He's literally across the country, and I live in Canada. 2. He never showed me much care to begin with, especially after the surgery. I read about on here how some of you guys had regular checkups with your surgeon to make sure things went smoothly immediately after the surgery. My surgeon saw me once and only for about two minutes. No no, the only place I'm seeing that guy now is in a courtroom, or in a boxing ring. I'd prefer the boxing ring, but the courtroom might prove to be more beneficial to me.

For now, I have an appointment with a Dentist. I'm gonna see what he thinks first.

Is it possible that my new bite is stretching/ripping the bone?
Is there another surgeon in your area you could go to? Is there a reason you went to one so far away? I had my surgery in Canada too and my surgeon is/was super duper extra mega busy but I still had follow-up appointments, even if they were rushed.
SARPE: December 19, 2013
Expander out/TPA in: May 13th, 2014
Upper and lower braces: May 21, 2014
Lefort I + BSSO + sliding genioplasty: June 11, 2015
TPA out: December 17, 2015 (due to issues)
Braces off: November 28th, 2016!!!
My blog
My ArchWired thread (last updated November 29th, 2016)

Metalmouth33
Posts: 33
Joined: Fri Mar 10, 2017 10:53 am

Re: Why is my palate always in incredible pain following Sarpe?

#11 Post by Metalmouth33 »

I was living there at the time, it's the only reason I had the surgery over there.

How often were these follow up appointments? Immediately following the surgery I only recall having one follow-up. They took a brief look at my mouth and took out some stitches. Essentially I was left on my own during all the turns. My surgeon never took any part in this part of the process actually. Is that normal?

jaime
Posts: 853
Joined: Mon Jun 02, 2014 8:00 am
Location: Southeastern Michigan
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Re: Why is my palate always in incredible pain following Sarpe?

#12 Post by jaime »

I recall having two follow-ups. One a few days after surgery, and the next was 6 months later when I had my braces on.

If I was in your situation, I would find a local surgeon to speak to. You mentioned you made an appointment to see a dentist, but in my experience with all of this, dentists don't very much about jaw surgery.
SARPE: December 19, 2013
Expander out/TPA in: May 13th, 2014
Upper and lower braces: May 21, 2014
Lefort I + BSSO + sliding genioplasty: June 11, 2015
TPA out: December 17, 2015 (due to issues)
Braces off: November 28th, 2016!!!
My blog
My ArchWired thread (last updated November 29th, 2016)

Metalmouth33
Posts: 33
Joined: Fri Mar 10, 2017 10:53 am

Re: Why is my palate always in incredible pain following Sarpe?

#13 Post by Metalmouth33 »

Does anyone know of a dentist/orthodontist that is especially skilled in the fields of functional orthodontics/orthotropics/ using devices or methods similar to that of a homeoblock/ other non-surgical expansion devices?

I think the pain in my mouth has to do with pressure on the nerves resulting from relapsing teeth/palate. I had an underbite (because of my top jaw) prior to sarpe, so post surgery my ortho pulled my top teeth forward as best he could using elastics. My underbite isn't really there anymore, but my teeth don't rest as far forward as they did while I still had braces on. My teeth seems to want to move just a bit backwards all the time ( as well as slightly to the right, my expansion wasn't perfectly symmetrical, the gap opening was off center, towards my right; the ortho pulled the teeth back towards the center as well, using elastics), anyways, when my teeth move backwards, that's when the pain gets bad. It's not nerve damage per se, but i think it does have to do with the nerves, or something else up there that is very sensitive. Case and point, a few days ago I was pressing my teeth forward using my fingers, they moved a bit, and the pain was mostly alleviated. I've done this experiment a few times over the last couple years. Pressing my teeth/palate forward helps. And I think this explains why the pain comes and goes. As things move backwards, stuff gets squished, and it hurts, move it forward, it is given the proper amount of space again.

IF you know someone who is especially skilled in these practices in Canada or the U.S., could you pm me their info? I need someone to find a way to stabilize my mouth it in a comfortable position using very minor reshaping/expansion or something along those lines.

Metalmouth33
Posts: 33
Joined: Fri Mar 10, 2017 10:53 am

Re: Why is my palate always in incredible pain following Sarpe?

#14 Post by Metalmouth33 »

I was googling palate in pain after sarpe surgery and this was the 2nd hit! haha, thanks google that's very helpful, redirect me back to my own problems lol. I'm kind of a longwinded talker, I apologize.

It's been an interesting year. The pain is just the same, worse at times. I used to wear my retainer to help prevent relapse of my teeth, but it wasn't working. The palate/teeth still relapsed a bit over the last couple years anyways. And eventually whether I'd wear them or not it would sting and ache, and after a while it seems to make it worse, so I stopped wearing them except once in a blue moon now.. I had the idea of trying devices like Alf, or something similar to help stabilize, and possibly help fix the asymmetry in the palate the surgeon created. But after talking with a local dentist who utilizes those kind of practices it seems clear it wouldn't work the way I'd hope it would. He says they can work on the bone via pushing on the teeth (it does not work on the palate directly), but in the process it will create gaps in your teeth, create even more expansion etc. And anyways, my top four incisors have been loose ever since the sarpe surgery, so for me that's definitely a no go, I don't want to risk losing those teeth. . I had contacted a local surgeon, explaining my situation, but they were suggesting another surgery, probably only thinking about the positioning of teeth and stuff, totally disregarded my health concerns. :-+

Out of desperation for answers, I read some studies and looked through a few different forums hoping to find something helpful (there are a couple other similar forums to this one. This one has the most members, but overall, people here seem to be less informed), I saw that my case isn't the only one like this. I learned that all maxillofacial surgeries are inherently risky. I mean, that's kind of a no brainer. Go watch youtube videos of them sawing through the bones in someones face and you tell me that's a perfectly harmless operation. There wasn't really any consensus among the studies about what the % chance of a risk was, a couple had low numbers like 5-15% (they call that low :lol: :crazy: ), and others had quite gruesome reports like 40%. The variety in results kind of makes sense because when they do a study they often sample from one area, or one hospital. So the results in that study will depend on the skills of those surgeons. The funny part, was that every study pretty much had the exact same conclusion- that maxillofacial surgery is essentially harmless and is very useful. They believe that all of the different kinds of complications are acceptable outcomes, and that things should continue on, business as usual. For me, that's quite an insult to injury.

In one interesting study in south korea, where alot of patients got the surgery for cosmetic reasons only, the author in the study asked patients if they regret their surgery. They reported a huge % of patients receiving a complication of some kind, and then they said the majority of patients with complications regret the surgery. Then the author still had the audacity to conclude that their results are acceptable, and the only worry for the surgeon is to inform the patient of the risks. After he's done that, everything is fine, good to go. I couldn't help but send him an email telling him how stupid he sounds, in as charming a way as I could. His own research was telling him that it's an extremely bad idea, that after the fact, people don't want to do this for cosmetic only. He wrote the most in-depth study I saw so far, and still he just copied the conclusions of every other surgeon around the world. Group-think much? Needless to say he never responded lol. And anyways, cosmetics could, and would be worse afterwards, so what's the point when that happens. A few people in that country killed themselves after surgery, or at least tried.

I also learned that this is a (low) multi billion dollar industry, if you take into account all the things like equipment, surgeon fees, etc.
Of course this is just my opinion, but the industry is only interested in continuing to keep giving people more surgeries, despite it's shortfalls. I mean that it's goal isn't to only perform surgery when it's a necessary evil, the industry is working to establish itself so that even borderline cases are now covered by insurance and health care (this didn't seem to be the case all that long ago, depending where you live of course). All the borderline patient has to do is say yes, and then away they go. A strong word of caution and a full detail of every known complication should be provided by the surgeon, but this isn't the case. Unfortunately, I was not informed at all by my surgeon, he told me nothing other than what kind of surgery I would have.

Given my bad results, I'm a huge devil's advocate now, and my flat out answer to anyone considering any maxillofacial surgery would be, No. Don't do it. Not unless you're trying to escape an unbearable situation (an example is someone who can use it to treat their sleep apnea). Everyone's case is different of course, and you must decide for yourself, but you must make an informed decision.

I make a promise to anyone that feels they need to do this to try and feel normal about their looks: You can live happily the way you are, without surgery. And I promise, in time, you won't feel that way about your looks, if you don't want to. As you get older you'll look around and see how we could all use an improvement in one way or another, and you'll see how we're all getting worse over time anyways. When you gain that perspective you'll see how foolish it is to risk throwing away your health for looks. Only a Chance at better looks... it's an incredibly stupid thing to do.

Regarding my cosmetics, I look worse after surgery. I know it, everyone who knows me knows it. It took me a few years before I could admit it though. I've worked to the point where I'm happy with the way I am.

But, getting back to the main point. My mouth is in pain. It got so bad I went to my local hospital a few times to see if they can help. I get shoots of pain dozens of times a day. I've learned how to manage it, I found a really helpful ..supplement? called Serrapeptase. It's job is to reduce pain and inflammation.... it specifically says on the bottle that it's helpful after dental surgery. It says take 1 a day, but I'll pop 3 at a time and get an hour or two of relief. Normal painkillers help too of course, but this one is more natural and doesn't come with bad side effects. The only side effect for me is I get drowsy, which is great because I have trouble sleeping sometimes. I never knew how ibuprofen could cause such massive heartburn until after chugging those for a few days in a row. Lol, it's funny, but also sad. When I was a younger, something like a trip to the mountains, or a whole day playing games with friends would make me happy. But now, finding a healthy way to treat chronic pain makes me happy. lol. "Life's a b*tch and then you die" - Nas.


I wont come back here for a while, if ever. there's no answers for me here. And all I would do is warn people not to get surgery and they probably won't listen anyways,- so, cya.
And to anyone where this surgery ended up becoming a blessing. I'm so happy for you. Jealous. You are so lucky. I wish I could have had that experience. I wish everyone could have had that experience.

It's so terrible to have met someone who has dedicated their life to a skill which was actually very harmful to me. I wish they could understand how terrible of a person they were, to me.

The most important thing in life, is health.

In life, it is impossible to buy a life with another life.

You cannot rationalize to yourself, "If I help this many, but only harm this many, then it it worth it", because that's not rational.

Instead, it's like this: You help this many. And also harm this many. You do both. There is both. Even though some people love you, you're still a monster.

-signed Metalmouth33

:thumbsup: :rawk: :dance: :smoken: :-88 :-Z :-Z :-Z

SCeles33
Posts: 9
Joined: Sat Oct 20, 2018 10:15 pm

Re: Why is my palate always in incredible pain following Sarpe?

#15 Post by SCeles33 »

I'm really sorry to hear about your surgery issues :(

I know palate surgery is very different from impacted wisdom tooth surgery but, but if you were in the North Bay California area i'd suggest you to speak with Dr Matt Wetzel who can likely refer you to another excellent surgeon. He removed 7 of my teeth with minimal swelling and no infection.

As for what you're going through it sounds just like what I went through when I nearly sliced my finger in half. I still have phantom pain from the busted nerves. I hope you find the surgeon you're looking for. One who truly cares about an excellent job well done.

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