RPE Freak Out

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candygrrrl
Posts: 69
Joined: Mon Feb 27, 2006 7:16 am

RPE Freak Out

#1 Post by candygrrrl »

Sorry, guys. What follows is going to be a big vent. Colored with more than a few broad brush strokes of utter hysteria. But my husband is on a business trip, my best friend is likewise out of town and the dog just looks at me funny, wondering why mom can't say "Chewbie". So here I am.

I am totally freaking out. Not as bad as the near total meltdown I had when they first put the thing in (I thought to myself, "Fork it. I'll do the surgery. Just get this thing out of my mouth.") but I'm still on very shaky ground. Deep breaths. And lots of alcohol, if only I could figure out how to drink without dribbling down my frontside.

Jesus.

If I'd known I wouldn't be able to talk, I would never have started this process. I mean it. Why don't they tell you that? My doc knows what I do for a living. Knows that my livelihood depends on me being able to talk 24/7 to people both over the phone and in person. All I can think is, I'm going to lose these writing contracts. All the other writers, who can speak without sounding like they're in a car wash, are going to get my assignments and I'm going to have to wait tables.

Oh, and what I really want to know is: where am I supposed to put my tongue? I have literally developed a headache – a big Screaming Mimi of a headache – trying to figure out where to put it and how to hold my mouth/jaw so as not to choke on my own spit.

On the bright side, there go those last few pounds I've been wanting to chuck since the holiday pig outs.

Thank you for listening. I'll go dribble in my corner now.

Flora2006
Posts: 1088
Joined: Mon Jan 09, 2006 5:39 pm

#2 Post by Flora2006 »

candygrrrl - I am so sorry you are feeling this way. I really hope you feel better soon and you will be able to talk within the next few days. Have they said how long it should take you to fully recover?

Good luck and keep us posted! I really hope you feel better :)
Image

~~~~~~

Ceramic top braces: January 9th, 2006
Metal bottom braces: May 1st, 2006

summergirl
Posts: 35
Joined: Sun Oct 30, 2005 12:41 pm

#3 Post by summergirl »

I know how you feel ,I felt the same way ,in fact it got so bad Ihad enough and asked him to take it out.You are soooo right you just can't talk with it.They should tell you but don't because I think they know people wouldn't get it don't and I sure the heck is 1 of them.On the better side of things it does get a little better in time not much just a little.I HATE it just as much today as I did when I first got it.These things STINK big time,anytime you need to vent just do it I understand what you are going through.My dog looks at me funny too,as if too say what is up with you mom.The salava gets much better in about 2 1/2 - 3 weeks.

Summergirl :evil:

candygrrrl
Posts: 69
Joined: Mon Feb 27, 2006 7:16 am

#4 Post by candygrrrl »

Thank you guys for your concern and wishes!

Summergirl, how long have you had yours in? How much longer to go? Is yours in as a way to try and circumvent SARPE?

Flora, to answer your question, that's why mine is in – to see if we can avoid SARPE for my narrow upper palate and cross bite. Apparently, they have a good success rate this way with certain adults who "qualify" (I'm guessing those who have neither extreme narrowness nor too terribly bad cross bites). If they get the expansion they're looking for within a week, I can forgo surgery and continue making my turns once a day for about four weeks. Then, the appliance stays in as a "cast" for another month or so. All told, I could have this dratted device in for as long as three to four months.

If, however, they do not get the results they want by next week, I have to have SARPE as soon as I get back from a trip first week of April. Then I assume it's biz as usual with the RPE – at least two months, from what I can tell from folks who are journaling their SARPE adventures here.

However, as much of a pain in the rear as this thing is, I think I'll take it over the surgery. I don't think my insurance will approve the SARPE (and I have to get it done so quickly, there may not be time to find out) and it's a huge chunk of cash otherwise, plus I'm a little unclear about recovery time. I have an outdoor adventure vacation planned in June, plus I'm training for a trail run in August. SARPE could nix both.

Again, thank you guys for your good wishes. Now, I'm off to try eating. Somehow, I just don't think it's going to be any fun!

Brandyleigh35
Posts: 1018
Joined: Mon Jan 23, 2006 4:25 pm
Location: Alaska
Contact:

#5 Post by Brandyleigh35 »

Hey Ladies,
I just had the SARPE last Friday. I'm not 100% but pretty close. Not enough aggravation that it woud interfer with anything I had planned at this point. As far as surgery goes it was relatively pain free. I manged pretty good on Advil for most of it. I have to wear my appliance for 4 months after expansion is complete (which for me will be next Sunday.) My ortho says it takes that long for the bones to refuse and completely heal and the don't want to start moving stuff around with braces until everything is secure.

I totally feel your pain about the appliance though. I have had mine about 1 and 1/2 weeks. It is really hard to eat with and I too have a job that requires me to talk 24/7. I just tell people in advance what is going on and most are pretty understanding. It all comes down to how bad you want the problem fixed I guess. I'm willing to be in pain, and uncomfortable for awhile in order to achieve the end results which I know will be worth it. If you want to know more about the SARPE feel free to check my blog out, I documented everything from beginning to end on it.

Hope you feel better soon!

Brandy

candygrrrl
Posts: 69
Joined: Mon Feb 27, 2006 7:16 am

#6 Post by candygrrrl »

Hey Brandy:

Thanks for your thoughts. I've been faithfully following your blog about SARPE and I since I've been reading it, I've lost my fear about the surgery itself. I'm really in awe of how well you are recovering and think you're going a great service for everyone facing the same thing.

At this point, my main concern is simply the cost. I already shelled out close to $7,000 cash for the ortho treatment itself. Another $5,000 would be a big blow to my finances. But if it has to be, it has to be. I got into this for medical reasons because all three of my consults told me orthodontics would greatly improve my oral, and therefore overall, health, especially in my later years. The one thing I want to do is try and keep my teeth until the day I die. A straight, even smile – the first of my entire life – is an added bonus.

So, really I'm just venting. I've been in denial about the process for a while and yesterday was a huge blow. I literally had no idea how awful this expander would be! And as I'm sure many of you know, it's difficult to discuss this with other people, who either think your nuts or totally vain.

Thanks again and hope all continues to go well with everyone!

candygrrrl
Posts: 69
Joined: Mon Feb 27, 2006 7:16 am

#7 Post by candygrrrl »

Hey Brandy:

Thanks for your thoughts. I've been faithfully following your blog about SARPE and I since I've been reading it, I've lost my fear about the surgery itself. I'm really in awe of how well you are recovering and think you're going a great service for everyone facing the same thing.

At this point, my main concern is simply the cost. I already shelled out close to $7,000 cash for the ortho treatment itself. Another $5,000 would be a big blow to my finances. But if it has to be, it has to be. I got into this for medical reasons because all three of my consults told me orthodontics would greatly improve my oral, and therefore overall, health, especially in my later years. The one thing I want to do is try and keep my teeth until the day I die. A straight, even smile – the first of my entire life – is an added bonus.

So, really I'm just venting. I've been in denial about the process for a while and yesterday was a huge blow. I literally had no idea how awful this expander would be! And as I'm sure many of you know, it's difficult to discuss this with other people, who either think you're nuts or totally vain.

Thanks again and hope all continues to go well with everyone!

paw655
Posts: 123
Joined: Mon Feb 27, 2006 4:36 pm

an opinion from the far left..

#8 Post by paw655 »

As I am sure I have a reputation on this forum for being slightly unconventional, I'll keep going forward.

First off all, I'll be honest. I have not a clue in the world what an RPE is, or what a SARPE is but I am just responding to the sentiment in your posts.

I am going to be completely honest, and will probably tick off more than one or two people with my post, but I believe my opinion is as valid as the next person's.

I would return to the ortho and ask for the RPE, whatever it is, to be removed. Bottom line, orthodontic treatment is pretty advanced such that there are probably other ways to achieve what the RPE is to achieve, but orthos just don't talk about it. As I am probaly a little older than most poster, I can say that "way back when" we didn't have things like expanders, RPEs (whatever it is), we had three things: braces, headgear, and rubber bands, and things went fine. Now that there are advances orthodontists CAN use, they feel they MUST use them. However, if it is not working for you, and interfering with your professional life (which is probably what pays for the braces in the first place), then I (and I only speak for myself) would return to the ortho and say that this phase of treatment was not working, and what were the alternatives. Maybe treatment would go a little longer, but if it were the difference of an additional month or two with regular braces as opposed to having your life fall apart in front of you, then maybe it's worth asking about.

As the patient, you have the right and responsibility to state when treatment is not working in a manner that is acceptable to you. I have found it interesting when I have indicated to health care professionals that I wanted to "deviate from the norm", more often than not once they found out why, they simply moved on without judgement. In one or two cases, when I questioned why an MD wanted to run a particular test, which was very costly, I was told "just to see if there is anything going on, there's no real need for it if you don't want to do it."

Please don't interpret this post as suggesting you give up on orthodontics, or choose to disregard the directions of your orthodontist. It sounds like you are committed to the process and it is important to have a good working relationship with the ortho. However, there are times as a patient that it is OK to say, "you know, I am very committed to my treatment but this appliance is causing me real difficulties in both my professional and personal life, such that it could jeopardize aspects of my professional life. I would like to see [whatever is supposed to occur with RPE] but is there an alternative. I understand it may make treatment longer but I have to balance all aspects of my life so I'd love to hear some other ideas you have." You get the idea.

Normally, I am willing to go with what a doctor or dentist advises, but if there is a pressing reason not to, then I will ask about alternatives.

Good luck
Allison

candygrrrl
Posts: 69
Joined: Mon Feb 27, 2006 7:16 am

#9 Post by candygrrrl »

paw655:

You make some valid points and present a valid option.

To clarify for you: Orthdontics, it was explained to me, can correct my crowded, crooked teeth but not my bite, which is the result of a too narrow palate which has caused me to have a cross bite.

The RPE (or Rapid Palate Expander) is used mostly with pre teens whose upper palate has not fused together, to produce a spreading of the palate in order to proceed with bite correction. It is used in adults in certain cases to tip the bone outward (adult's palates are already fused) for a better, more aligned bite. SARPE – short for surgically assited rapid palate expansion – is what patients must undergo if RPE doesn't work. Again, the end result being a widening of the palate for better teeth placement and more healthy bite.

Certainly, I could have chosen not to undergo orthodontics for any reason, and taken my chances that my teeth – as crooked and crowded as they were – would remain healthy. But I chose to give it a go, based on the best information I was given by three different docs at the time. Knowing, of course, that doctors are business people and of course want to "sell" you on a certain course of action.

As miserable as I am, I am committed to trying the RPE. I am not commited to surgery. I did ask my ortho what would happen if we neglected to do the SARPE and she said, "Well, we can go more in depth with that if and when that time arrives, but basically, we won't be able to do anything to correct your bite." Which again is the main reason I chose orthodontics. However, can I take my chances and see what results after my teeth are straightened? Might not my bite correct itself even just a little bit, putting me in at least a better position than I was when I started? That's what I plan to ask the doc next week.

paw655
Posts: 123
Joined: Mon Feb 27, 2006 4:36 pm

apologies

#10 Post by paw655 »

I apologize for the way the post came across. I absolutely agree with getting braces and think it is a great idea for anyone who has concerns with their teeth, even if the rest of the world can't see why they would be needed (that is my situation).

I think the fact that you got braces to correct, as much as possible, your teeth and bite is great. My concern is that sometimes the cost/benefit ratio of what health care providers expect us to accept may be unreasonable. If you can put up with the RPE, then absolutely go for it because it might make a huge difference. For me, I have sometimes had to ask myself if the "cost" (not monetary, but inconvenience, pain, etc) will bring a "benefit" (a better bite, but one that will never be perfect as long as the current bite is not actively destructive to your mouth) that is worthwhile. Each of us know our circumstances the best to make that judgement, but I did want to mention that sometimes, in the appropriate circumstances, that I have found it is OK to say no.

ren
Posts: 77
Joined: Thu Jan 05, 2006 12:58 pm

#11 Post by ren »

hi, I hear you on the RPE situation...I've had the SARPE as well-it's defintely the way to go! I have one positive note that you probably won't have to wear it as long as I'm still wearing it-I changed my ticker because for me at this point it is a badge of honor.

renee +\+

Brandyleigh35
Posts: 1018
Joined: Mon Jan 23, 2006 4:25 pm
Location: Alaska
Contact:

#12 Post by Brandyleigh35 »

Candygrlll,
I'm glad you are finding the blog helpful, it really hasn't been that big of a deal, and I'm so excited now that I can actually see my palate expanding. Yes I know what you mean about expense. My insurance covered most of mine but I had to pay $900.00 out of pocket for the SARPE and paid just less then a month before $7200.00 for my braces. So financially I feel your pain.

I think as an adult with the fused palatal structues it is the way to go. I can't imagine just cranking the expander without the SARPE surgery. I think I would be totally freaked out about that, not to mention that is just sounds very painful to me. I just don't see how it can work, especially in a timely manner. That is one thing that I really like about the SARPE. It gets a lot of expansion done in a relatively short amount of time.

I know what you mean about reading about it and it calming your fears. I was not worried at all when I went in for mine. I had done a ton of research on it and knew what to expect. Even my doctor was impressed with how relaxed I was. I think that also helped things to go well too! Anxiety is just extra stress and I think less stress is better.

The appliance in and of itself is annoying as heck. I can't say I'm liking it at all, but I'm tolerating it well, if that makes any sense??? I'm starting to learn what I can an cannot eat, and basically just figure that the day this thing is removed will be a day to rejoice. I"m still not sure what I'm going to do about he talking part. I have a big inservice coming up that I have to host, as well as the requirements of me having to talk to people everyday at work. That is going to be challenging, and as the gap continues to grow, probably rather embarrassing and uncomfortable too! I keep telling myself that it is only for a short time though, especially in the big scheme of things. Four months is really nothing.....people will not remember, and it will pass before you know it. Eye on the Prize! that is what gets me through.

Hope this helps some...Oh, and I was going to say, I completly disagree with the post from Paw655. IF you want great results. The SARPE with the RPE is the only way to go for adults. If you want mediocre results, or are willing to settle on what you get then talk to your doctor about other options. I can tell you that I have a friend who is having the same procedures done as I, but no SARPE. Her doctor has used invisalign to tip her teeth out, and she will be having lower jaw surgery this June. I can say with no hesitation that she looks terrible. Her teeth look like she has buck teeth now, and it has totally take her looks from a cute girl to what I consider to be very unattractive. She did this because she was afraid to undergo the SARPE. I saw her the other day, and even with only 5 days of expansion my upper arch, and smile look stunning compared to hers and that is with my new evolving "Cletus" gap too. She also commented on how awesome my teeth looked compared to hers LOL.. While it is very tempting to take a different route, you are really limited in the options you have if you want the best results. My ortho was going to take the easier route because he didn't think I would want to go for the SARPE. Thank goodness my OS suggested it as I would've never known it was an option, and quite frankly was really the best option out there. Once my ortho realized that I was willing to do whatever was necessary to achieve the best results then he totally agreed with the OS and said that this was truly the best way to go overall. I do understand the financial constraints but again, be sure you really understand what you are getting if you don't go the RPE, SARPE route, as you could end up with a better bite, but an appearance that is dramatically changed in a negative way due to the need to accomodate.

Hope this helps.

Brandy

candygrrrl
Posts: 69
Joined: Mon Feb 27, 2006 7:16 am

#13 Post by candygrrrl »

Brandy, to answer your query about turning the key without SARPE: I turn the key and then feel a slight, couple second's long pressure on my upper teeth. That's it. I'm guessing what this is doing is moving the teeth outward, a process which, as has been discussed many times on this board, is controversial – advocated as long term stable by some docs, not at all by others.

I go back in this Wednesday to see if I have achieved the 1.5 mm expansion they're looking for in order to proceed. If they don't see it, SARPE is the recommendation. My doc has been honest with me the entire time about this 50/50 possibility, but swears they have had excellent results with adults of all ages with RPE without SARPE. To me, excellent results is 20+ years, but I know my doc hasn't even been in practice that long (although her partner has and I'm also meeting with him).

I know there are no guarantees in life with any medical procedure, but I will raise questions regarding long term stability, tooth shape and position, profile alteration, etc. before I make any decision. I know there are also other expansion type processes out there – the Mini-Implant and Controlled Arch, which Jaws on this board is undergoing – that are less obstrusive than what I'm undergoing. While I know that not every doc has the time to stay up to date on the latest procedures, I will bring those up as well, if the recommendation is RPE without SARPE.

Just wish I'd known all this before I started. My bad.

Anyway, thanks for your encourgement and info. May it all pass quickly and well!

airxjordan24
Posts: 40
Joined: Sat Jan 21, 2006 3:56 pm

#14 Post by airxjordan24 »

I have had my RPE expander since Feb 13. I feel you you on not being able to speak clearly. The first week with it was horrible. Second week improved a bit, and by third week my speech is almost normal. I still cannot speak certain words clearly, but most people hardly notice. So all in all, IT WILL GET BETTER! Just hang in there.

My ortho recommend surgery, but i opted not to. Not only because of the financial issue, but also i want to avoid going under the "knife" if possible. I have had my RPE in about a month now and been turning 1 turn per day and I can see my upper arch widening, so it is doing something.

Also the question about the pain: I have felt no pain what so ever from turing my RPE. You will just feel slight pressure when you make the turn, but it goes away in about 1 min.

However my RPE recently broke, and I had to get bands refitted. That thing hurt like hell! Now my treatment has been halted for 2 weeks until my new RPE arrives. Hopefully your's wont break.

GOOD LUCK!
1/21/06 - spacers and brackets
1/25/06 - 2 lower biscupids extracted
1/30/06 - lower archwire
2/13/06 - expander on uppers
Image

candygrrrl
Posts: 69
Joined: Mon Feb 27, 2006 7:16 am

#15 Post by candygrrrl »

You know what's funny about the expansion for me? After I make the turn, I feel pressure for about a minute, then my teeth start to "itch". Very weird feeling. The itching lasts for about half an hour, then everything is okay.

Eating also sucks – literally. The best way I've figured to do it is to take very small bites, chew very slowly with the very backs of my teeth (thank you wisdom teeth!), and then take sucking sips of water between bites to dislodge the stuff from between the roof of my mouth and the expander. This too must be done slowly so as not to choke!

But on the bright side, my speech is improving ever so slightly and was the best it's ever been a couple hours after I woke up this a.m. (although it seemed to have degenerated again after today's turn :( ) So this will be the time I'll try to speak to clients. I took the plunge and phoned one of them this morning and she was actually kind enough to say she hardly noticed the difference in my speech and not to worry about it.

Ah well, ever onward!

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