Why is my palate always in incredible pain following Sarpe?

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Metalmouth33
Posts: 21
Joined: Fri Mar 10, 2017 10:53 am

Why is my palate always in incredible pain following Sarpe?

#1 Postby Metalmouth33 » Mon Apr 17, 2017 2:22 pm

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: 68
Joined: Wed Sep 14, 2016 5:43 am

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

#2 Postby jawregret1 » Tue Apr 18, 2017 12:27 am

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: 746
Joined: Wed Feb 18, 2015 7:31 am

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

#3 Postby snapdresser » Tue Apr 18, 2017 3:58 am

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

#4 Postby jaime » Tue Apr 18, 2017 4:13 am

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: 21
Joined: Fri Mar 10, 2017 10:53 am

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

#5 Postby Metalmouth33 » Tue Apr 18, 2017 12:39 pm

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: 21
Joined: Fri Mar 10, 2017 10:53 am

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

#6 Postby Metalmouth33 » Tue Apr 18, 2017 12:46 pm

Also thank you for your sympathies.

snapdresser
Posts: 746
Joined: Wed Feb 18, 2015 7:31 am

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

#7 Postby snapdresser » Tue Apr 18, 2017 5:06 pm

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: 21
Joined: Fri Mar 10, 2017 10:53 am

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

#8 Postby Metalmouth33 » Tue Apr 18, 2017 5:54 pm

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
Posts: 746
Joined: Wed Feb 18, 2015 7:31 am

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

#9 Postby snapdresser » Wed Apr 19, 2017 4:15 am

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: 841
Joined: Mon Jun 02, 2014 8:00 am
Location: Ontario, Canada
Contact:

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

#10 Postby jaime » Wed Apr 19, 2017 9:34 am

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: 21
Joined: Fri Mar 10, 2017 10:53 am

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

#11 Postby Metalmouth33 » Wed Apr 19, 2017 12:27 pm

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: 841
Joined: Mon Jun 02, 2014 8:00 am
Location: Ontario, Canada
Contact:

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

#12 Postby jaime » Thu Apr 20, 2017 5:28 am

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: 21
Joined: Fri Mar 10, 2017 10:53 am

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

#13 Postby Metalmouth33 » Wed Jun 21, 2017 11:05 pm

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.


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