24 Years Old, Bilateral Cleft, Missing Four Upper Teeth and Severe Underbite - Iowa City, IA

I had braces for years growing up, but it never really fixed my bite.
After finishing braces for the last time in high school, I wore a retainer that had my lateral incisors on it (since I'm missing mine).
I continued to wear the fake laterals on a flipper through college. It was great looking "kind of" normal. After college, I had more free time and realized I needed to get those teeth replaced.
After talking to the orthodontist, they recommended I get jaw surgery to fix the severe underbite. This would require a year of braces, jaw surgery, and then another 6-12 months of braces. But it would totally fix my bite!
Turns out the front two teeth (which had crowns on them) both needed root canals. The right tooth couldn't be saved since the root was badly formed in the first place. They did a bone graft using cadaver bone, which kind of worked, but I think I'm still missing some bone above my right central incisor. Currently wearing a pontic attached to the braces for the right central incisor. I got a root canal for the left central incisor, but I might end up needing to get it pulled in the next 5 years or so... :(
The orthodontist decided to move in my cuspids to substitute the laterals. At the time, they didn't even ask whether or not I should think about implants, since it would be more complicated. They recommended I get a bridge between my cuspids to replace my two central incisors? Not sure if that is actually a good idea!! Basically I'm going to end up missing my centrals and laterals in the top - what is a good replacement for these four teeth? Also the premolar behind the right cuspid is a very undersized tooth, so it's definitely not going to look like a cuspid tooth without some kind of veneer.
Furthermore, I had a pharyngeal flap surgery to repair my cleft lip when I was younger to help me talk normally. This limits the distance they can move my upper jaw forward? I think they said I need at least 7 mm of movement. I don't want them to move my lower jaw back for two reasons: I like my face shape with my lower jaw position, and my dad has sleep apnea (and he's not even overweight!) so I don't want to risk getting sleep apnea.
It's very difficult talking to orthodontists and oral surgeons because I don't know anything, my case is complicated, and I want a good result that I'm not going to regret. I don't want to offend anyone or make anything difficult. But I want to be able to eat and talk normally, not have apnea, keep my strong lower jaw, and have normal-looking teeth in my smile.
I am very confused, I've had braces for almost a year now, I'd like a second opinion, I'd appreciate any advice, jaw surgery is 4.5 months away, if I'm going to change any plans I need to do it soon. Thanks for your input!

Whew I've gone through a lot in the last 6 months. I'll try to remember what things were important and not spew too much pointless information.

In the initial review I wrote in July 2015, I had a lot of anxiety. I had just had the "initial appointment" with the oral surgeon and a resident. They had taken a brief look at me and diagnosed me with "mandibular hyperplasia".

My mandible is and always has been normal. My primary issue was "maxillary hypoplasia", which is common in cleft patients. The upper jaw was underdeveloped, because of the scar tissue (due to bilateral cleft) that prevents the bones from growing properly. Because of this incorrect diagnosis, they originally wrote down that I needed 7mm advancement with a double jaw surgery. Double jaw surgery might work well on an average patient, but since I was born with a cleft lip and palate, I have a lot of scar tissue which limits the distance the upper jaw can advance. Due to the scarring, they would have had to set back my mandible a considerable distance to make my teeth line up. This would have put me at a high risk of apnea, made my jaw look smaller, and overall have an unsatisfactory outcome.

I didn't know any of these details at the time, though. I only knew that I didn't want my lower jaw set back.

So this anxiety continued to increase for several months until I started talking on the phone with a resident to prepare for surgery. We talked a lot about the treatment plan, because I was really nervous about having double jaw surgery. Looking back, I shouldn't have waited so long, and just gotten it over with a second appointment.

So after talking with the resident on the phone before my pre-surgery appointment, I went a little nuts, and read quite a bit of literature on cleft patients and maxillary hypoplasia. The consensus is that: for cleft patients, if the advancement required is 6mm or greater, distraction is the preferred treatment. I had heard a lot of discrepancy about how much advancement I needed. One orthodontist said 6mm. Another said 8mm. (Immediately before surgery, the oral surgeons said I needed 12-14mm.)

After educating myself, I finally felt confident in talking about having distraction instead of orthognathic surgery.

I went to the final "pre-surgery" appointment. I explained that I was really nervous about double jaw surgery, because of my family history of apnea. The oral surgeon said it was definitely preferable to have distraction in my situation - and that given I had a pharyngeal flap surgery, they could probably advance my upper jaw only 5mm maximum with orthogathic surgery. This made me feel a lot better. Immediately I realized that the world was not coming to an end and everything was going to be okay.

If I was doing it again, I would have done more research, and maybe gone to see another surgeon for a second opinion. And I also should have brought my girlfriend with me, she would have really helped me talk to the surgeons without getting worn out.

So at this point in the story, I'm glad that I'm having distraction, but I'm still anxious about the whole thing anyway.

I ended up calling the resident again a week before surgery, and he reassured me on a few more things I had started to worry about. (I was worried about the pontic tooth hooked to my braces coming off during surgery - turned out not to be an issue. I also said that having external distraction is totally tolerable if it would lead to a better result. That turned out to be a non-issue too.) Everything was totally fine though, and I always felt better after talking with him.

The actual surgery went well. They had to do a quick endoscopy to make sure my nose airway was clear. They gave me some kind of sedative in the IV. I've never felt that way before - it was like being intoxicated, only without any dizziness or nausea. I've never felt so altruistic and friendly haha. Turns out that my nose airway was a tight fit, but they managed to get the air line through my nose.

The surgery went very well. They installed an internal distraction device. After 5 days, I started cranking my jaw forward.

After about 2 weeks, however, I hadn't made much progress, and it turns out that one of the screws in the device had come out. Apparently this basically never happens. The rep from the distractor company was flummoxed. So I ended up having a second surgery on Dec 30 in order to fix the distractor. Ugh.

Cranking my upper jaw forward was incredibly painful. Maybe I was just cranking it forward too quickly (the normal rate is 1mm/day, I probably could have gone slower if I'd talked to the oral surgeons about it) but over time I got better at taking a good dose of ibuprofen every 6 hours, and one 5mg hydrocodone with 325 mg tylenol right before activating the distractor.

I learned that I don't like narcotics very much - they just make me sleepy and stupidly happy. Surprisingly, going on walks was actually really good for reducing pain. It helps me do something to distract my brain from the pain.

It was also kind of hard to clean my mouth, but I got better at it over time. Brush carefully, use salt water and chlorohexidine mouthwash.

So finally, after cranking my upper jaw forward ~12mm, I had another appointment with the surgeon. He adjusted the distractor a couple millimeters to make sure things were aligned right. And I've just been feeling great ever since!

Let me tell you the benefits:
1. I CAN BREATHE THROUGH MY NOSE!!! THIS IS INCREDIBLE!!! I've never slept better than I have in the last two weeks. I didn't realize how poorly my nasal airflow was before the surgery. I think I might've had some apnea problems before all this started.
2. My eustachian tubes work a lot better now. I used to have chronic ear infections, and could never get my ears to "pop" and clear, but I don't think that will be a problem anymore.
3. My teeth are much closer to where they should be. I currently have an overbite (the surgeons are anticipating a little bit of relapse) and my jaw is a little crooked to one side - but they'll fix that in Feb 17 when they remove the device.
4. I feel a lot better about my appearance.

If you have a cleft lip/palate and have maxillary hypoplasia/underbite, and need 6+mm of advanacement - I highly recommend internal distraction. It's not too noticeable, and it gets the job done. It's kind of like having braces for your upper jaw - just cranking it forward every day.

There's two options with distraction - either leave the device on for 12-14 weeks to let the bone heal, or take the device off early and place plates to hold the jaw in the right position. I'm having the distractor removed and plates installed on Feb 17. Can't wait.

Finally, I'm considering having a revision rhinoplasty to adjust my nose. That becomes an option 3-6 months after the last surgery.

Also - I'm finally settled on having "canine substitution" to replace my lateral incisors. It's an easy, reliable solution, and I'm not the kind of person who nitpicks about what my teeth look like, anyway. I'll have to have an implant to replace my right central incisor. My left incisor has a root canal, but I haven't had any more trouble with it lately.

All in all, it's been a long and difficult adventure, but definitely worth it. Probably didn't need to be so stressful if I'd been more active and talked more to the surgeons about my concerns. They ended up doing a great job though!