I have a date for my SARPE in March. Tips please kind people

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lalcharlie
Posts: 75
Joined: Wed Dec 31, 2014 4:32 am

I have a date for my SARPE in March. Tips please kind people

#1 Post by lalcharlie »

I was led to believe the waiting list was so long it could be another year....and now, here I am, trembling in my boots having just accepted a date for SARPE in Glasgow on 25th March.
I've read lots of blogs, but not that many on adult SARPE. It needs to be expanded the full 10mm, that means three times a day. Will that be painful or just pressure. It is painful after the op?
More importantly, will I be able to do the school/nursery runs, look after chickens/cats/husband/dogs/house a few days after surgery?
And go back to full time work three weeks afterwards?
I'm 43 :cry:

Any tips would be gratefully appreciated xxx especially on coping with device

I have a narrow palate (you don't say!) and the usual crossbite issues
Will need double jaw surgery sometime further down the line

divelizard
Posts: 12
Joined: Tue Feb 24, 2015 1:57 am
Location: Bunbury, Western Australia

Re: I have a date for my SARPE in March. Tips please kind pe

#2 Post by divelizard »

Hey find the SARPE Topic in Orthgnathic Surgery, sorry I can't work out how to post the link.

There is like 9 years worth of comments and experiences (115 pages) from 2005 - 2014.

Some people say absolutely ouch, some say no pain at all, some even it had it done in the chair with local (OMG!).

Sorry if you already have read it, I think its natural to be sh*t scared and nervous/anxious, before any surgery, I don't have any tips for turning it off and I've had lots other then my jaw escapades. :D

I'm sure you will be just fine. Also absolutely congratulations for wanting to solve your facial/breathing/teeth problems as an Adult, it takes a lot of guts, loving your work.
Braces on 23rd May 2012 - ouch
BSSO/Sliding Genioplasty - 23 January 2014 - double ouch
De-Braced 29th July 2014 - yep ouchy - but what a relief
Clear Retainers fitted 5th of August 2014 - still working on open bite, feels like its never going to be over

jaime
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Joined: Mon Jun 02, 2014 8:00 am
Location: Southeastern Michigan
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Re: I have a date for my SARPE in March. Tips please kind pe

#3 Post by jaime »

Hey lalcharlie! Check out my blog, the link is in my signature. I'm an adult who went had SARPE in December 2013 and I blogged thoroughly about it.

As far as pain doing the daily key turns in the appliance, I've never heard of anyone who had the surgery first say the key turning is painful. It's a weird sensation. For me it felt like a bit of pressure in my head, below my nose for maybe 5 minutes after each turn.

You'll definitely want to stay in bed for a few days after surgery. Day 3 is generally the worst, and then it starts to get better. I had very little energy and had to nap often. Also, depending on your pain meds, it's probably best not to drive until you wean off them a bit. I wouldn't anticipate getting back into your full routine (especially if it involves kids) for at least a week...otherwise you'll just be pushing yourself too much.

Three weeks off work should be perfect. I took 2 weeks off (I have a pretty sedentary desk job). I was pretty tired that first week back to work but it didn't feel too early to be back.

Anything else, ask away!
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)

nataliepryor
Posts: 20
Joined: Wed Jun 11, 2014 4:51 am

Re: I have a date for my SARPE in March. Tips please kind pe

#4 Post by nataliepryor »

Hi,

I had SARPE last October and am still wearing the expander and now braces also.

It was a bit daunting when they fitted it in my mouth, lots of saliva and it covers much of the roof of your mouth. 3 days and my mouth and saliva got used to it.

The surgery was fine, my nose area was the sorest (I couldn't feel where they cut). Its more a swelling discomfort then a pain. Like when someone hurts you in the face and how if feels about 2 minutes later....you know its happened but its the pressure you feel afterwards. I swelled most in the nose region/mid cheeks.

I felt very tied, wanted to sleep a lot in the 3 days post op. Swelling peaked, uncomfortable. Then it stated to go down. Smile is week, and I had a big long stitch under my nose to control the widening of nostrils. This pulled a little if I tried to laugh, its takes 2 months to dissolve. Surgeon said to me "no comedy shows for a while". Again its not super painful, its just there and you can feel it. It takes a few weeks to get your full smile back, but rest assured it all comes back fully.

Turning the expander does not hurt...sometimes felt tight but no pain. Your brain expects pain but there is none. My husband turned mine...no way I could do it. I think a still have a small lisp sound when I speak (with expander in) but no one else notices it. Slow down your speaking, it will come out clearer...especially at the start!! First night I hated the expander...but you adapt very quickly. The Saliva will calm down, just give it time.

Post op - can take 6 months for full feeling in gums to return. I can feel my teeth but my gums are still numb. This is a good thing also, you don't necessarily want to feel straight away! The expander stays in so no relapse...6-9 months (most are 6 max).

When the feeling is returning in your skin (around the areas close to nose, cheeks) it can feel like its raining inside your face (like it appears on a window when its running down) I just iced for this. Ice block in a towel or ice pack, it relieved the funny feeling in my face. The first few days, Ice ...sometimes before I was due to take some Endone, the ice helped very much for any uncomfortable feeling and gave me relief to allow time for next batch of drugs. I have a new found respect for Ice :wink:

If you want any more info or advise just reply and I will answer what I can. Try not to let it worry you too much, always easier after the fact, but it just make you feel way worse...keep getting advise like you are and remember you will feel pressure on your face when you wake up and there are drugs available to keep you comfortable.

I'm having double jaw surgery next and I actually feel more relaxed about it since having the SARPE procedure. I think its because the pain can be handled. It is a big procedure, don't get me wrong, but follow doctors orders and you should be right.

lalcharlie
Posts: 75
Joined: Wed Dec 31, 2014 4:32 am

Re: I have a date for my SARPE in March. Tips please kind pe

#5 Post by lalcharlie »

Hi everybody, thanks for pointing me in the right direction! I have found the thread on SARPE and have nearly a month to devour every word of it....


Jaime, you blog is one of the reasons I am still here, pursuing this. The results are amazing and you look great. Its very reassuring to read all the nitty gritty details about the procedure and what happens before/afterwards. I will continue to read your blog (i haven't read all of it but I didn't just look at the pics, I promise ;-)) in particular the recipe section as I love my food and I'm worried how I will cope on a liquid diet, I can easily feel faint while teaching if I don't eat, it's very demanding. I'm 9 and a half stone so am happy to lose the half! But not too much more. Have a load of running kit like you Jaime and my intention is to get fit before/throughout this process. My friend has just been diagnosed with very invasive breast cancer and has her surgery in two weeks to remove breast, then chemo AND radiotherapy, so I could join a 'Race for Cancer' run somewhere in the country if only I didn't live so far in the sticks. I'm from Northern Ireland but my husband is a forester and we're in the beautiful west of Scotland where there are more trees.
My friend with cancer really puts my surgery into perspective...I shouldn't complain about wearing expanders or any part of this jaw journey, I'm one of the lucky ones

Natalie - Thank you for answering my questions, you given me so much help. I think different surgeons/orthos do things very differently as I''ll be wearing the device for 90 days - dear Lord I'll be counting every cursed on of them - braces on 2 weeks after the SARPE on April 11th (if I'm deemed ready but the appointment has been made). Can I handle that much metal in my mouth 2 weeks after the surgery?!!!!!!

90 days. My device must be slightly different too as it doesn't sit in the roof but across the teeth and rests on my tongue like a cage when my mouth is closed. I can get my tongue onto the roof of my mouth from the back. I can't really swallow very well, it's so low.

I'll try to attach pic of my device i took this week. NOTE NARROW PALATE and overlapping teeth grrrrrrrr

https://us-mg42.mail.yahoo.com/ya/downl ... =yahoomail

Let me know if this works, it's frustrating I have no idea how to attach pics - it's just comes up IMG in backets when i hit the box above

Victoria xxxx (Charlie is my dog, Lal is Cumbrian for 'Little')

jaime
Posts: 853
Joined: Mon Jun 02, 2014 8:00 am
Location: Southeastern Michigan
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Re: I have a date for my SARPE in March. Tips please kind pe

#6 Post by jaime »

Wow, that's very flattering what you said about my blog! I'm glad I could be of help. I haven't blogged too much about having braces since it's boring, but I will be back at it for my double jaw surgery and genioplasty.

Your timeline with the expander and braces is very different from mine. So you'll have the expander for 90 days after surgery? That's not bad at all. The positive side is that you'll be so focused on feeling better and recovering that you'll barely notice the expander. That was my experience, anyway.

I can't see the photo you posted but the way you described it sounds like what I had.

Sorry to hear about your friend with cancer but it's good you're able to have some perspective about all this. I think we're privileged to be able to do this for ourselves. There will be days after the surgery when you will ask yourself why you're putting yourself through pain and inconvenience...just keep your eyes on the prize. It is all totally worth it.
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)

kelse
Posts: 85
Joined: Mon Sep 09, 2013 2:09 pm

Re: I have a date for my SARPE in March. Tips please kind pe

#7 Post by kelse »

Congratulations on getting your date! X

Sadoozie
Posts: 36
Joined: Wed Nov 12, 2014 4:22 pm

Re: I have a date for my SARPE in March. Tips please kind pe

#8 Post by Sadoozie »

Congrats on starting the long journey lalcharlie!

I got the expander put in today and have SARPE surgery scheduled for next week (10/03/2015). I too thought it would take a million years to get a date for surgery since im under a public health provider in Denmark, but the system works - go figure.

Also, i'm getting my wisdom teeth pulled out during the SARPE, so i got that going for me as well. :crazy:

jaime
Posts: 853
Joined: Mon Jun 02, 2014 8:00 am
Location: Southeastern Michigan
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Re: I have a date for my SARPE in March. Tips please kind pe

#9 Post by jaime »

Sadoozie wrote:Congrats on starting the long journey lalcharlie!

I got the expander put in today and have SARPE surgery scheduled for next week (10/03/2015). I too thought it would take a million years to get a date for surgery since im under a public health provider in Denmark, but the system works - go figure.

Also, i'm getting my wisdom teeth pulled out during the SARPE, so i got that going for me as well. :crazy:
I had my lower 2 wisdom teeth taken out at the same time and I couldn't even tell because of everything else going on. During SARPE is definitely a good time to get them removed!!
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)

lalcharlie
Posts: 75
Joined: Wed Dec 31, 2014 4:32 am

Re: I have a date for my SARPE in March. Tips please kind pe

#10 Post by lalcharlie »

have managed to attach pic of scold's bridle /torture device (would like to work out how to resize, that's next task)
securedownload.jpg

Good luck Sadoozie, as Jaime says, far better to get it all done at once!

Looking forward to hearing how the surgery went and comparing notes in a few weeks :wink:
You do not have the required permissions to view the files attached to this post.

Sadoozie
Posts: 36
Joined: Wed Nov 12, 2014 4:22 pm

Re: I have a date for my SARPE in March. Tips please kind pe

#11 Post by Sadoozie »

Thanks lalcharlie. I dont have permission to see your pic to compare with the torture device they put in my mouth. But i can tell you that its day 2 and although my tongue feels sore - my speech is much better than yesterday. So it does improve like jaime says, it just takes time.

@Jaime, you are right. Getting rid of the wisdom teeth during SARPE is recommended. The surgeons face lit up when he was telling me how "lucky" i am to get this done at the same time. Personally im not really worried about the pain/recovery, i've never been operated on before or put under general anesthesia - so i think that my problem is losing control and not knowing whats going on. But im sure i wont want to see/hear whats going on anyway, lol.

lalcharlie
Posts: 75
Joined: Wed Dec 31, 2014 4:32 am

Re: I have a date for my SARPE in March. Tips please kind pe

#12 Post by lalcharlie »

Sadoozie - the forum will give you permission to post/see pics, you just have to have posted a certain number of posts first.
Are you in the Uk?

I have dreamt about the expansion device for the last two nights - thanks for the reassurance about the speech. I don't know anyone who's had sarpe and this forum is a godsend.

Vicks

kelse
Posts: 85
Joined: Mon Sep 09, 2013 2:09 pm

Re: I have a date for my SARPE in March. Tips please kind pe

#13 Post by kelse »

Wow it is a torture device!

Those with experience say you'll get used to it & they are the best advisers. It does seem very daunting tho x

Sadoozie
Posts: 36
Joined: Wed Nov 12, 2014 4:22 pm

Re: I have a date for my SARPE in March. Tips please kind pe

#14 Post by Sadoozie »

I'm just across the north sea in Copenhagen, Denmark.

You do get used to it, i've had the RPE on for 5 days now and the sores on my cheeks and tongue are gone. You also learn how to speak with it on, and from what ive been told by friends - my speech has improved a lot since the first day i got it. Strangers don't notice it at all and only once has a person asked me to repeat myself. So, its not all that bad.


PS: great quote!

Sadoozie
Posts: 36
Joined: Wed Nov 12, 2014 4:22 pm

Re: I have a date for my SARPE in March. Tips please kind pe

#15 Post by Sadoozie »

This quote;

'Life shrinks or expands in proportion to one's courage' Anais Nin

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