I Feel So Vindicated!

So.....I emailed my OS about the "Oral Antral Fistula" and today he called me back! HALLELUYEA!!!! He AGREED WITH ME!!! He left a pretty lengthy message saying that I'm absolutely correct that I might very well have this! The way he said the words "Oral Antral Fistula" so quick and like he knew totally what I was talking about. The words rolled off his tongue like they were a normal part of his everyday conversation, and that made me feel soo much better. He said the symptoms sound consistent, and that like we talked about the other day it could be some other kind of irritation, but very possibly this IS the problem. He said that while he is doing the surgery on my maxilla, that he will be down fracturing it and will have complete access to my sinuses. He said while he is in there he will scope them and see if he finds any holes, or communication problems (this is basically a nice way to say he will check and see if my sinuses and oral cavity are swapping spit LOL.) If he finds any issues while in there he will fix them, then proceed with the rest of my surgery. He then said....thank you for emailing me with your questions, and if you want to discuss this further please feel free to contact him.


I was so excited to know that he actually read my email and that he agreed with it! That all my super sluething actually had some value! Mostly I was glad too that he was not offended that I postulated the question regarding this matter or that I'm basically self diagnosing myself. He actually sounded rather glad that I contacted him. Anyway....I really like my oral surgeon and now feel even better about my future plans for surgery. I can tell I'm in good hands! PHEW.....what a relief!

Oral-Antral Fistula - Sometimes Copius Amounts of Research Pays OFF!

Since having my SARPE I have been having issues with my sinuses. I had told my doctors that when I made suction in my mouth I felt it in my sinuses and it would run all the way along my teeth to the back of my throat. I went to the dentist first and told him what I was feeling and that I was having a bad taste in my rear molar. He couldn't find anything so he sent me to the endo (who by the way did a root canal for nothing. ) Things didn't seem better and I had another sinus infection so I went to the ENT. He was not the regular doctor I see but his CNP. He said that it sounded as if it could be a fistula but he could not be sure. He ordered CT scans, and put me on antibiotics. I called my OS, but he said I needed to talk to the ortho about this. The CT scans came back, but due to the reflection from my braces we were not able to really see anything. So...long story short, I have pretty much been getting the run around from everyone!

So today I was over on Cary and Amy's site "Igotbraces" another guy had posted similar symptoms. A soon to be dentist had replied to him saying that it sounded like a "Oral-Antral Fistula. I of course had to google it, and research it to death. But what I found was amazing! This IS WHAT IS WRONG WITH ME, I'M SURE "OF IT!!! During my SARPE, I also had a left wisdom tooth removed. Clearly this is what created the problem, the perferation must have taken place at that time. All of the symptoms completely coorelate with what I have been experiencing, and it makes perfect sense.

So....tomorrow, I'm going to email my OS with the link to this page and ask him what he thinks. I want to know if this is something that we can fix while we are doing all my other stuff, AND if there is anything I need to do ahead of time to move this along. I will keep you posted.....I just feel so vindicated and finally hopeful that we will get this figured out. Also glad to know that I'm not just losing my mind.

Beauty and Elimination of the Beast!

Well I got a lot of information today. My oral surgeon called me and we talked about his plans for my upcoming surgery. He mentioned how some of the big doctors like at Stanford who do this surgery everyday move the maxilla out a lot. I told him I had done a lot of research on it and that the average was around 10mm for apnea. He said "yes that is correct, they are pretty large advancments." He said that he had reviewed my cephs and that he feels that if he moves my maxilla out 3 mm and then brings my lower jaw to meet it (which will be 6-7 mm on the bottom), followed by a small genio that we will be able to effectively eliminate my apnea. He says the 6 mm on the bottom will actually give us about an additional 3mm in space as it changes the pull on the tongue. He said that he wants to make sure he eliminates my apnea but that he also wants me to look good too. He said he is encouraged by the fact that I was able to correct my apnea with the sleep appliance by just moving my teeth out to line up with my uppers, and that this surgery will actually move them a bit farther then that, so he is confident this will work for me. He also said that in addition to fixing my apnea, these measurements will give me perfectly balanced facial assymetry. He said that it will not change my appearance so much that people will not recognize me, but that it will improve my looks but also help me sleep like a baby.

He said he plans to do a one piece Lefort 1, as it doesn't appear that he will need to make any other movements then just straight out. He said that he will know more the closer we get to my surgery date though, when he does the actual practice surgeries on my models, and that if we need to change it then he will let me know ahead of time.

We will be submitting my pre-auth tomorrow. I have a wonderful women who works at my insurance company who hand processes all of my claims so that I don't have any issues. She has truly been a godsend, and I should know something definitively within about 2-3 days. I'm pretty sure it all will be covered as they had already approved the lower jaw advancement. It was in the original treatment plan with my SARPE. So this is really just a modified treatment plan and my doctor has written a note of medical necessity for it so it should all be good. I got the actual health insurance claim form with all the billing codes etc on it today. The total cost, just for the surgeon is $23,425.000. This does not include the hospitalization etc. I figure by the time we are done it will be upwards of $50,000. That scares me as even with a pre-auth there is no guarantee of payment. I have read that others have had this done, gotten pre-auth, and then had insurance refuse to pay. I don't think that would happen as I'm pretty sure I have covered all my bases, but it is just stressful since its so much money!

Anyway....I'm just happy to have a diagnosis and actual specifics on my treatment plan. The doctor said that he will have the schedule for May and June ready by next week and I can call and schedule out my surgery date. I will also make my pre-op surgery appointment at that time. So really short of getting the dates scheduled and my surgery hooks put on in the next couple of months there is not much else to do but wait.

Orthodontist in Agreement

So I emailed my ortho today (like I said I was going to do) asking him if he had had a chance to talk to my OS yet regarding the new treatment plan. I asked him if he had not if he could give him a call so we could keep the ball rolling. I would then be able to get the paperwork finalized for the second round of insurance pre-approval. I got his reply back this afternoon:

Brandy,
I have talked to Dr. Edwards and he told me his plans. I am
actually glad because I was concerned that the advancement wasn't big
enough to change the sleep apnea. From my point of view, the surgery
doesn't matter. Once the arches are coordinated, the surgeon puts
them together so they match. If you have any questions, don't
hesitate to write....or call.

So, this is good news I guess right? I mean I sorta felt a little miffed with the "from my point of view" part. It made it sound like he didn't really care what the OS does to me, that his job is basically sort of done for the most part. I'm sure he did not mean it this way....it's an example of why email can be so misinterpreted. It did sound that way nonetheless though.

So....I guess I will contact my OS tomorrow and see if he has a plan worked up yet, or if he is still putting things together. I was so dying to email my ortho again and ask him what the OS said the plan was when he talked to him, but figured they probably did not get into measurements, but just generalities regarding whether they should just do the lower or upper and lower both.

I was reading a post on the MMA board regarding the usual advancement of the maxilla for sleep apnea correction. Someone said the usual distance is about 10mm. That seems like so much to me! That would mean my lower jaw would be advanced 14mm to catch up. That is too much I think! But hey.....what do I know??? I'm just guessing at this point, which I probably
need to just STOP doing! LOL.....but it did seem like a lot. :)

Sometimes I miss the good old days.

WEll Since I found out I'm having the works on my face I have been doing a ton more research. Been spending a lot of time at sleepnet.com reading info from others having MMA or Bimax surgery (basically this is just upper and lower advancement) aimed at correcting sleep apnea rather then just occlusal issues.

I'm feeling much better about all of this now. I mean I'm still nervous about the way its going to change my face, but I feel like I can do this, like I'm even excited to get on with it now. This is a big change from last week, when I was scared to death. Now I'm just midly anxious, but ok with it. I never thought I would say this but at the moment I'm so glad that my surgery isn't until May. I feel like I have so much to get done and not much time to do it. I want to get that one tooth fixed that has been bothering me. But as usual I have to go to the dentist, to get a consult with the endo, just so I can go see him to get it fixed. I swear all these speciality docs are great, but it sure makes for a pain in the rear getting things done. You have to go to twice as many appointments as usual, and for me who is already seeing my Primary care physician, an OS, a dentist, an ortho, and an dental sleep medicine doctor, it is a bit much! That doesn't even factor in the normal stuff like regular eye doctor appointments, doctor appointments for my son, etc. Its just a lot right now.

I'm going to call my ortho and see if my os has contacted him yet. I know he was out of town until Monday so I want to be sure he has had a chance to talk to the OS. I want Dr. Edwards to get busy working on my new facical reconstruction blue prints LOL. Anyone know how long that takes? I mean I'm so not a patient person so I will probably bug them to death, but oh well.....what can I say?

Steph posted her new post op xrays on her site today! I swear I love looking at other peoples xray's its so cool to see what they can do with all this orthognathic surgery stuff. I find it so facinating!

I called my Dental sleep medicine doctor today to see if he wanted to talk to my os about my advancement plans. I'm a little worried as my ortho has no experience really with sleep apnea. ONly one other lady patient that he did last year that I"m aware of. The oral surgeon asked if he took any measurements and I was like "uhh...no. He told me to come back when I was closer to surgery to get my surgcal hooks installed and that was about it" It really concerns me that he isn't taking any measurements on my airways etc. As is normally the case when I call more than one doctor the sleep medicine doctor told me that the OS and my ortho need to be working together and not him. I told him that I just wanted to check as my ortho doesn't seem to know much about apnea and really only seems to be concerned with my occulsion. I could be wrong here, but that is how it seems. I guess I don't understand why all three of them couldn't work together, I mean would that just be too many heads to put together or what? It is all rather confounding to me. You would think more is better then less.

So...anyway, that is where I'm at right now. I will post more as soon as I know more. But for now, I'm going to rest easy that I WILL be having surgery in May and that I'm ok with it!

Old Me/New Me

These are some pre and post SARPE/Braces Comparison pics. The first one was taken in either 1999-2000 so roughly 7 or 8 years ago (35 years old). The second picture was taken today (February 19th 2007, 42 years old.) They were so similar in the facial placement and smile that I had to post them for comparison. Considering it has been 7 years since the first one I don't think I'm aging too terribly....LOL

You can see though how my face shape has changed a bit. It is no longer heart shaped but more of an oval now. (click on pic to see larger)















I have decided to just relax about all of this surgery stuff. Whatever is meant to be will be and worrying about it, stressing about it, is not going to change anything. So, I will wait, pray, and then decide once I have all the info from my doctors. Until then I'm just going to chill and enjoy the time I have until my surgery date.

Steph brought up a point today about how much easier it is to just sorta jump into this blindly or more easily if you have not experienced it and do not know what to expect. I agree that this is true. The lower jaw surgery does not scare me, because I do not have any frame of reference to compare it to. I'm sure it will be uncomfortable, but I can't truly be afraid of it as It really is just unknown. The upper surgery though, I do. I know what it is like recovering and what the pins and needles of nerves regeneration feels like. I know the emotional ups and downs that go along with all the swelling, and not really recognizing your face for a few days, sometimes even weeks as the swelling persists. Then there is the numbness, which does gradually go away....but ever so slowly. Anyway...what I'm saying here is that sometimes ignorance really is bliss. Its good to know about what is going to happen to you, but once you have experienced the discomfort, well that part is truly pretty hard to just put out of your mind. With that being said, I know I will get through it and will survive. I know I will not regret my decision whatever it may be. I have the utmost respect for all of my online surgery buddies too! WE, all of us, are survivors.

Slowly Digesting Total Face Reconstruction!

Ok..so maybe I'm being a bit over dramatic, but hey, at this point I'm contemplating some very serious procedures here. I can tell you that the past 3 days have been filled with nothing but constant research. I have been looking at every blog, pic, journal article, message board, or tidbit so that I may find that little something, be it a pic,a word, a sentence that helps me dig deep and find my courage so this whole surgerical procedure won't seem like such a humongous deal.

A few weeks ago I was complaining about how I didn't want to wait until May to have my surgery. How it was so far away and I wanted to just get it done now. Oh, and of course there was the surgery envy I was feeling towards all my other surgery girlfriends who where going under the knife this past Friday. Well let me officially say THANK YOU GOD for making me wait til May for my surgery. It is amazing to me how quickly the days are flying by now, and I know that soon...probably much sooner then I want, May will be here, and it will be my turn.

I find it so interesting that I'm so unnerved by this, when I was so eerily calm about my SARPE. I mean, the whole SARPE experience wasn't that bad, not anywhere near as bad as I imagined it would be. You know what I find myself worrying most about is not making it through surgery. This is even hard to write as I'm sorta supersticious about putting words down on paper, or blog. I think things sorta take on a life of their own once they are verbalized or spoken out loud. Probably sounds weird but its how I feel. I mean if I didn't have my son, then perhaps this would all feel a lot different. I find myself worrying most though about not making it back. Not seeing is adorable little face again. Is that normal? I keep telling myself it is, and as I recall I think Steph had some similar reservations prior to surgery. It's funny but no matter how much education, or knowledge you have about something. Sometimes you just have very irrational fears that you can't seem to talk yourself out of. That part irritates me, that I don't feel like I have better control over it, but at the same time I'm trying not to beat myself up for being a little stressed out either. I feel like my last couple of days have consisted of nothing but internal dialogues aimed at trying to calm my fear of the unknown, and not talk myself out of doing this. I'm usually so strong, and nothing gets to me, so suffice it to say that I'm having a hard time with the fact that this is really getting to me.

The more I research the more I feel better, but it sorta comes in waves. I'm thinking that if this goes on for the full 3 months til surgery that I'm going to be an absolute basket case. Not to mention skinny as I don't eat much when I'm stressed!

Ok...enough of this gloom and doom talk. I put it out there, now its time to move on to something more positive and let my brain rest a little.

I'm soo glad we have a three day weekend! I'm so tired (which is probably the majority of my problem here) as everything is magnified when I'm tired. Work has been crazy busy lately and I just feel like I really need this weekend to get some rest and regenerate a bit. I want to spend some time looking for ideas to decorate my sitting room with, relax, sleep in, and spend some time with my darling husband. Other than that I have no real plans.

It will all be fine....I know it will, and I have all my "orthodorks" out there to help me get through this. I did find this article today and thought it was rather comforting. I thought I would pass it along since MMA surgery is basically the same as upper and lower. It's about Patient's perception of the facial appearance after maxillomandibular advancement for obstructive sleep apnea syndrome.

UPPER, LOWER, and GENIO! Oh MY Freaking Gosh!

Ok...so I had an appointment with the OS today. I'm completely in shock, feel sick to my stomach, and want to cry. He totally wants to change the surgery plan. Instead of just having BSS0 (lower jaw advancment) he wants to do it all! Upper, lower, and genio. He said that my lower jaw advancement would only be about 4mm and that he is worried that we would go through all of this and my problems would not be fixed. He said that to get the best results regarding correction of my apnea, he would like to cover all the bases. What he is suggesting is the latest and greatest in the Sleep Apnea world for surgical correction. I just so wasn't planning on anything so major. Even the genio is considered medical, as it changes the pull on the soft tissue in the palate (insurance will still probably not cover it though.)

I'm so torn right now. I just can't wrap my brain around all three! I feel like things have gone from a rather simple procedure, to major serious surgery. I'm terrified! I didn't ask any questions, my mind just sorta went blank once he told me what he thought. It was like on Charlie Brown, when the teacher talks...waaat, waaat, Wa. That was all I heard. My surgeon wants to talk to my ortho, then draw up some models and computer images to discuss with me. These will show the changes in my profile etc. I'm so totally traumatized....even as I type this I feel like I'm in a daze.

I did speak to him prior to this about the questionable area in my pano. He said that I could have a perferation and that he would recommend that once my braces come off we run another CT so we can get a better picture of the palate area without all the reflection. He said he has never heard of someone having ongoing sinus infections after SARPE as usually the sinuses are opened up a bit and breathing and drainage improve. Anyway....we also talked about the bone graft for the implant.

I was so looking forward to no Catheter, no hospital stay, nothing major, now I'm completely unsure of what to do. We could do lower and genio, but the os says that it would suck to go through all of that only to not fix the problem. What about the changes in my appearance? I mean, I sorta like the way I look right now, not sure I want any major changes, and the swelling, and just healing process in general.

THIS is the Worst VALENTINES DAY EVER!!!!!

Here is a website that explains MMA (maxillomandibular advancement) for Apnea (click where it says manual download on this page), or you can read my comments to see an explanation of why this would work.

1 Year Panoramic X-Ray and Progress

Ok, so I had a panoramic done this morning to take with me tomorrow when I see my OS for my pre-surgery consult. I'm so excited just to be getting closer to my actual surgery date! Anyway...I was purusing my Xray and I see this interesting area that looks like a hole (you can click on the pic if you want to see it bigger.) Coincidently it is directly above the area where I have been having issues. My left canine and my first and second left incisors are the ones that have been burning since SARPE. A dental friend of mine, also said it looks a bit suspect and if I were his patient he would refer me out to an ENT...which I have already been seeing. So if my OS says he also thinks it looks strange then I guess finding a new ENT is my next job. I will post more about this tomorrow after my appointment.

Here is a pic of my new smile with my new "obscure color" powerchains. I love this color, I think it is sortof a pearly color white, but I just think it looks nice. Below are my most current progress pics









Uppers 1/19/07 and today 2/13/07







Lowers 1/19/07 and today 2/13/07. You can really see how they have opened up since my last visit. I think it must have been that giant #19 Steel wire.

Thank God for Blood Tests and Good Doctors!

Ok, so I had to blog today as things have recently taken a turn for the better. I have been seeing a naturopath the past few months trying to get the issues I have been having with my health, hormones, sleep apnea, etc. taken care of. We started with a bunch of tests, Saliva tests, and blood tests. Then we compared the results to make sure they were pretty much the same. My test showed a high level of DHEA. Now this is unusual as at my age your DHEA usually decreases significantly. So....my doctor had me take an adrenal test to check things out.

A few years back I had a full blood workup done and they also reported that my DHEA was high, however, they said that high levels often exist in individuals that exercise a lot, and since I had lifted pretty heavily the night before my test, and was relatively young and healthy, they blew it off and said it was probably nothing. I really didn't think to much about it either and just let it go.

So...fast forward to now. Over the past three years we discovered that I had sleep apnea, which of course is not conducive to good quality sleep in and of itself. I was always tired, and my head was always fuzzy. I often would awake with a headache, and I swear there were days I could barely remember my name. It has been very frightening at times, thinking that perhaps I was truly losing my mind, or in the early stages of Alzheimers or something, but not knowing what to do to fix it.

The combined tests showed that some of my hormones were a bit low, so we are working on balancing those out. My doctor put me on a good whole food multivitamin 3 times a day, as well as 1,000mg of vitamin C twice a day. Last week when the adrenal test results came back my doctor talked with again as the test showed very high levels of cortisol. Cortisol is a chemical that is secreted by the Adrenal Gland during times of stress. Basically your cortisol levels rise and lower during the day due to stress(ors) in your environment. They peak (at their highest) at about 6-8am in the morning (thus helping us to wake up)and decrease in the evening being at there lowest about 12:00pm, supporting good sleep.

Small increases of cortisol have some positive effects:

* A quick burst of energy for survival reasons
* Heightened memory functions
* A burst of increased immunity
* Lower sensitivity to pain
* Helps maintain homeostasis in the body

Higher and more prolonged levels of cortisol in the bloodstream (like those associated with chronic stress) have been shown to have negative effects and actually become toxic to the body. Sustained high cortisol levels (such as what I have been having for the last 3 years)

*Destroy healthy muscle and bone
*Slow down healing and normal cell regeneration.
*Co-opt biochemicals needed to make other vital hormones
*Impair digestion and metabolism
*Impair mental function and cognitive performance
*Interfere with healthy endocrine function
*Weaken your immune system, so you get sick easier and more often.

This was all very perplexing since even though I have a very high stress job, I do not get stressed out. I'm very good at handling my stress, and truthfully a very calm person. Never in a million years would anyone have pegged me as a person of high stress. In fact I'm so mellow I'm almost apathetic! LOL..

My doctor told me (and I also researched it later) that there is a serious connection between sleep apnea and adrenal issues/disfunction and high cortisol is quite common with obstructive sleep apnea. My high cortisol is directly related to my apnea events. The decresed/blocked breathing at night triggers my brain to go into stress mode. A quick shot of adenaline is released, and I'm awakened so that I do not die. This happens a few times a night which keeps my body in a constant state of stress, it keeps my cortisol levels elevated continuously. They are elevated all night, and are very high during the day. Cortisol needs to decline at night for good quality, restorative sleep to be obtained, and mine never goes down!

So.....my doctor put me on a cortisol reducing supplement the other day. I take two pills before bed. I have been on them for 1 week now and what a difference it has made. I swear to God I could notice a difference the first night I used them. I awoke the next morning to a clear head. No mental fogginess, I was remembering things I hadn't thought about for years! I have more energy, I sleep more soundly and have been dreaming for what feels like the first time in years. Most of all I can tell that I'm finally starting to heal like I should be now. My immune system feels like it is back on track. It has been three weeks with no meds and my sinuses are clear. No sinus infections, or indications of any. The three front teeth that were always burning are now feeling normal, and in the past couple of days have started tingling again with the return of feeling. It feels like a freakin miracle! My doctor says that if I take these meds over the next few months, they have been proven through research to actually reset the cortisol levels to their correct amounts. So they are not something I need to take forever. She is convinced that between my surgery to correct my apnea, and these supplements that I could be functioning like my old self in a matter of months. I had my SARPE in March. Full healing has taken a long time, however, now I know why! Mostly I'm excited because now I don't have to worry so much about my ability to adequately heal from my jaw surgery!

I feel like I have gotten a new lease on life! I'm so incredibly shocked to find that one brain chemical could have such a profound effect on my life! It's crazy...but I'm so glad that my doctor didn't just discount it like the others! I'm on my way back BABY!

1 Year Braces Anniversary!

So I was looking at the date today and realized that today is officially my one year anniversary in braces! Woo hoo! One year down, and one (more or less) to go!
If I'm to be honest it really has gone by rather quickly. Not as fast as I would've liked, and of course not as aggravation free as I would've hoped, but considering what we have accomplished in the last year it has definitely been worth it. So on that note....I would say I highly recommend it.

So, I also went to my Naturopath the other day. This is the Supplemental Protocol she gave me to follow prior to, during, and after surgery. I will also be having some MLD treatments, and 24 hours before surgery I will get a nutritional I.V. and perhaps another one 24-48 hours afterward also. I also found this really cool Basket of Supplements for before and after surgery. They are kits that provide all the suggested supplementation by Dr. Wright, but they come with powdered supplies for those on a liquid diet. I'm definitely going to get one, but thought I would share the wealth with all of you too!