BACKGROUND
I was diagnosed with sleep apnea in 2009 (API 45) . I was living in Chicago at the time and went to see a sleep expert. He reviewed my x rays, sleep study, etc., and told me that my mouth was too small and that I needed to have jaw advancement surgery. After he described the procedure, I politely told him I was going to try far less invasive options.
I did all of the following before I was forced to have the jaw advancement surgery:
- I had Synoplasty with turbonate reduction and valve replacement.
- I had Uvulopalatopharyngoplasty UPPP surgery (very painful, VERY).
- I tried using the Continuous Positive Airway Pressure (CPAP) machine.
- I tried a dental device that kept my lower jaw advanced while I slept.
- I tried sleeping on a wedge.
- I had Hyoid advancement
- I had Tongue Suspension (twice). I had to pay all the costs for this because it was experimental.
- I tried CPAP one more time.
I had four sleep studies during and after all of the proceeding treatments. API…41.
I had five years worth of surgeries, none of which helped. I reexamined the following options that were left:
- Tracheotomy
- Jaw Surgery
- Live with the sleep apnea, risk stroke, and have it take years off my life.
So I was back where I started, but at least I could say that I tried everything, really. So I went with option 2: jaw surgery, basically cutting my head to remove the upper jaw from the skull, breaking the lower jaw and then bolting it all back together.
SELECTION OF SURGEON
I began looking for surgeons who could perform this surgery. I had some basic criteria that were personally important to me. (No offense intended to anyone, these were my criteria.)
- Medical degree from an AMA-accredited medical school.
- At least eight years experience doing this surgery.
- Someone who performed this surgery at least twice a month. Surgery is like a lot of hands-on professions: the longer you do it, the better you are. I did not want a person who performed this surgery one or two times a year.
- Some record of published work. (I am a scientist and there is value in having your peers review your work and determine if it holds water. And it is worth being published.)
- Must be in Blue Cross/Blue Shield (BC/BS) ( in or out of network).
- Have some reviews on the internet. (The internet is full of a bunch of garbage, so star ratings are almost worthless. However, a review that someone wrote is valuable. I wanted to look for trends of people having similar experiences.)
Armed with these criteria, I spent six months developing a list of surgeons. I had a list of approximately 50 who met my basic criteria. Then I started culling the list based on their published works or their hospital affiliation. (If you work with the Mayo Clinic you beat the doctor that is with the university hospital of eastern nowhere.)
I finally ended up with three surgeons. One was in North Carolina, one in NYC, and one in Stanford, CA. I reached out to all three directly. Keep in mind that the criteria above had nothing to do with liking the person. I could care less about that. I cared about their skill and proficiency to do this significant surgery on my jaw and skull.
None of them were in the Georgia where I live, so location did not really matter. I was going to have to fly there and rent a place to live for almost 30 days after the surgery.
After almost a year of research, I selected the surgeon that in my opinion was the best. I picked Dr Kasey Li at Stanford. Dr. Li was also out-of-network for my BC/BS health insurance.
FINANCES: A WORD OF WARNING
Make sure that you have a DETAILED understanding of your insurance benefits. I have BC/BS. My out-of-network out of pocket maximum is $5,000. I called BC/BS in January almost two months before the surgery. I spoke to them again in February just to make sure that $5,000 is all I would have to pay. That was TOTALLY untrue.
Here is how (BCBS) works. If you go to an out-of-network doctor, BCBS will accept the doctor’s bill and pay out a percentage of the contracted rate that they have with in-network doctors up to the maximum. Then BC/BS pays 100% of the contracted rate. The key here is “contracted rate” and out-of-network doctors never sign a contract to charge a specific fee with BC/BS. The doctor will charge what he/she feels their labor is worth. If that is about the contracted rate, they will charge it. The insurance will only pay up to the contracted rate. YOU pay the rest, even if it’s above the $5,000.
Example
You select Dr. Smith to do a procedure and he is out of network. BC/BS has a contracted rate for this procedure of $10,000. Dr. Smith charges $15,000. BC/BS will start paying the percentage of the $10,000 until you reach your out-of-pocket maximum of $5,000. Then BC/BS will pay the rest of the contracted rate ($10,000) at 100% until it is paid. So you personally paid Dr. Smith $5,000 and BC/BS paid $5,000. The problem is Dr. Smith is still owed another $5,000. BC/BS will not pay it because it is above the contracted rate. So guess who gets the bill? YOU DO!
Make sure you fully understand what this procedure will cost you. I did not find any of this out until the day before the surgery. The surgeon was super upfront with his fees. I was told by BC/BS that I would not have to pay more than my out-of-pocket maximum. Period. I feel I was deceived by the BC/BS customer representative who answered my questions.
PREPARATION SUPPLIES
After reading all of the blogs about this surgery, I knew some of the things I was going to need post-surgery and started to buy them beforehand to spread out the cost, including the following:
- Nutri Bullet blender. I have a friend with Crohn’s disease and she has been on a liquid diet for almost 10 years and highly recommended this.
- 60cc syringes. These seemed to be the most talked about way to “eat,” so I got several boxes.
- “Jaw bra” and extra cool packs. (life saving)
- Protein powders. (Waste of money). It is easier to buy the already liquid ones
- Wedge pillow. I have to sleep on a wedge pillow for a while after surgery. I was going to ship my wedge pillow from home, but my dad had a good idea buy a new one and have it shipped to the place I was going to rent.
- Waterpik.
- White board and a LOT of dry erase markers
SURGERY
Tuesday, March 22, 2016 – Day 0 Day of surgery.-
I arrived at 05:30 to the 3rd floor of the Stanford Hospital Ambulatory Surgery Center and was checked in. About 35 minutes later I was all dressed for the “ball.”
The anesthesiologist gave me an IV and then Dr. Li came and asked how I was doing. The anesthesiologist gave me something to relax, which worked in a hurry. I remember moving onto the table and then I woke up five hours later in the ICU with ice packs around my head and very bad pain in the back of my throat. No real pain from the surgery but I could tell my mouth was banded shut.
The rest of the day was just spent lying there, but about 4-5 hours after surgery the pain and nausea started. The nurse gave me 4ml of morphine every four hours and alternated that with anti-nausea medication every two hours. I was very afraid of not being able to breathe through my nose. However, this was not a concern at all. I woke up with an oxygen mask over my nose and mouth and I could also get a small amount of air into my mouth. Dr Li had prepared me for this because I kept bringing up the breathing issue and he kept saying ”really, you will be fine.” I really was.
As the first day passed into the next, the nausea kept getting worse. Eventually I could not help throwing up. Throwing up was a really big fear. Breathing was first, pain second, and then throwing up. I FREAKED out knowing that right there in the ICU I was going to choke to death on my own vomit. I really cannot express in words how utterly terrifying this was. I looked at the nurse and she just said “overcome the bands and get it out” and I did. It was this black color and almost had a sweet smell; I hope I never smell that again.
Dr. Li had left just enough slack in the bands so that I could get the vomit out, albeit not easily or with any expediency, but I did get it out. I did not want to leave the ICU. I was afraid of what would happen if a nurse was not sitting next to me. The hospital gave me some blunt scissors to remove the rubber bands that held everything together if I had to remove the bands. They moved me to a shared room.
Wednesday, March 23, 2016. Midday- Day 1 after surgery.
I was taken from the ICU and wheeled to a shared room where I was in Bed B. I slept terribly, and I threw up three more times, but eventually I either digested the vomit or tossed it up. Dr. Li came by and I said I felt better. Note: I “said” because I could only open my mouth a little and talk a little. Dr Li gave me a very stern warning and said “You are not to talk, not at all. If you torque one of those plates, we will have to go back into surgery, and you have the possibility of losing part of your jaw due to infection.” Warning noted. Add two more things to my anxiety list.
I asked for ice every 1.5 hours or so. This helped keep me looking reasonably normal and not the super super-swollen pictures you see. Trust me, I was very swollen. Very.
I read online that ear plugs were a good idea. They are ESSENTIAL, unless you have a private room. A sleep mask is a good idea, too. I mean, I know that hospitals suck, but 24 hours of Telemundo is enough to drive any sane person…insane.
I started to notice a lot of pressure in my ears. I was guessing it was from jamming the ear plugs into my ear canal.
They had me on a 125ml IV so I had to pee every hour or so. which was a massive pain at night. After the first night I asked if they could turn the IV lower so I did not have to go to the bathroom so much. This helped a lot
Thursday, March 24, 2016. Day 2 after surgery.
Due to a last-minute scheduling change, my parents could not rescue me from the hospital until Friday, the 25th. I flew to Stanford especially for Dr. Li, so I had another day in the hospital. In hindsight, I was very grateful for the extra day. My left nostril would NOT stop bleeding. I apparently told all my white blood cells “you guys take the next couple of days off, no clotting.” So I bled and bled which, you guessed it, went to my stomach. I stayed on top of the anti-nausea medication and was fine, but my nose filled up with dried blood. I was very grateful for the pure oxygen blowing into my face. It reassured me I was not going to asphyxiate.
Dr Li came to my room and brought equipment from his office to suction out my nose. This was greatly appreciated and I felt so much better afterwards.
By the afternoon, I couldn’t stand the ear pain. It feels like I am in an airplane and I can’t clear my ears. I have decided to put on fairly loud rain/white noise to try and drown out the Spanish soap opera that runs 24/7 in the next bed.
Friday, March 25, 2016. Day 3 after surgery.
Discharge Day
NOTE: I have had six surgeries at four different hospitals to cure my sleep apnea problem. All of the hospitals were top-notch. However, I have never received the quality of care that I received at Stanford. In addition to the outstanding people, the use of computers, their policies about gloves, always sanitizing their hands, and using alcohol wipes, was top notch. I cannot say enough about them.
My parents arrived from Florida and picked me up from the hospital. After “Breakfast” (picture below)
we we went to Dr Li’s Office.so that he could clear my nose and answer any questions. My questions now focused on torqueing my implants. I did NOT want to do any part of this surgery a second time, not at all.
Dr Li took my first post surgery X-Ray; damn there is a lot of metal in my head now.
We left Dr. Li’s and came home with instructions to drink and to walk and a pair of scissors to use in case of an emergency. I was to keep them with me at all times.
Prior to the surgery, I went to the grocery and planned for food. (See “Food.”)
I yawned a lot this day, mostly because I slept like crap. The usual process of yawning provided unusual sensations that freaked me out. First, it felt like I was pulling at the upper jaw bone as the lower one tried to pull away. This was followed by a “POP” that I could feel. Not fun, but Dr. Li assured me that this was to be expected.
That night I had a terrible dream where I tried to cry out when I opened my mouth. I woke up from the pain. The pain, the snapping and popping sounds, the sensation you are pulling the upper jaw from the skull (whether or not it is true, it felt that way) made for a horrible night. Bad Day 3.
Saturday, March 26, 2016. Day 4 after surgery.
I slept well last night, almost four hours total. The yawning is not as bad today. I am having pain where the lower jaw hinges with the upper jaw.
I went grocery shopping with my parents and bought a bunch of liquid smoothies off the shelf. I made a strawberry blueberry smoothie…not good. I got a strawberry seed stuck in the only passage that I had to get food into my mouth. It took almost an hour to free it. Note: When making smoothies, err on the side of WAY more water/juice than fruit, and then blend longer. I destroyed my bathroom with the Waterpik trying to get that stupid strawberry chunk dislodged.
At the store I am having food envy when I see all the things I like to chew. I did have a Bolthouse Farms breakfast parfait with strawberry yogurt and granola that was 350 calories. I needed this since I have lost 6 lbs. in four days. It was delicious.
Per Dr. Li’s instruction, I am showering 3-4 times per day to keep the nasal passages moist. I also use my jaw bra 2-3 times a day with ice packs to try and keep swelling down. I am clearly swollen, like a human chipmunk that has not shaved in a week.
I sneezed tonight. Despite mental images of crap coming unhinged, my jaw breaking and blood flying everywhere, it was just a sneeze. Dr. Li 4….Anxiety 0.
Sunday, March 27, 2016 (Easter). Day 5 after surgery.
I slept OK last night,. I went to a coffee shop and sat on the patio and “drank” my nonfat vanilla mocha from my straw/syringe. People stopped to watch me like I was a zoo animal, but I am not going to be a hermit and I wanted a coffee.
Starting yesterday, I started doing lymph massages each time I shower. (You can find You Tube videos on how to do this.) It is making a difference. The gross “stuff” that has been in my chin, jaw, and throat is starting to move down my neck to be reprocessed by my body or disposed of. Dr Li told me that the very gentle massage that I do to myself would cause discoloration in my neck and chest. The heads up was much appreciated.
Today I have a shooting pain in my face. I’m assuming that’s where a bolt is. When I touch it, it causes a shooting pain in a tooth in that area. If that is the worst that happens, than I am cool with that.
I made gazpacho today. Despite removing all the skins and all the seeds, I could not get the mixture smooth enough to use with my straw. Sucks.
I had my first “cough” today. Because my mouth is closed for all intents and purposes, the air came out of my nose. Thank God my mother always made me cover my nose and mouth when we sneezed. A thing flew out of my right nostril that had the texture of grape jelly and was the size of my thumb nail. NASTY! There was no additional blood after that.
My teeth are very sore and sensitive to cold. Feels like when you have a tooth that needs a root canal. That and the canker sores are awful (due to the arch bars tearing at the lips). I will ask Dr Li about this tomorrow
March 28, 2016. Day 6 after surgery.
First official post op appointment
I had seven questions for Dr. Li this morning. I know he is growing tired of my list of questions each time I see him.
At one point he said “Really, I have never had a patient like you. It seems like all you do is sit around and think of questions to ask.” As a matter of fact, I have nothing to do but sit around and wonder what the clicks, snaps, pops, and sensations are.
Dr Li said the tooth pain was due to the arch bars and the bands pulling on them. As the bands loosen the sensitivity will go away.
I went with my parents to get coffee again today. I got hot and sour soup with only broth at a local high-end Chinese restaurant.
Dr. Li said I could shave, but it was hard since I cannot feel anything around my chin. I found it worked best to apply strong pressure with shaving cream and make smooth strokes. Even though I could not feel my chin, there was less drag on the razor.
In the end, I could not do my chin, so I asked my father to shave it. I am buying an electric razor tomorrow, so I don’t have to ask him again.
The lymph draining is now very obvious. From my chin to my sternum my skin is a bright yellow color and looks gross, but at least the lymph is moving.
One of my questions for Dr. Li was about infection. I asked if I have crossed a point where that was no longer a concern. Dr Li said “no way.” There is a risk of infection until eight weeks and possible jaw movement until possibly twelve weeks. I had somehow hoped he would say “If you don’t talk and do as I say, the risk is almost zero.” Apparently that is not the case, so I will be counting the days until I know I have almost no risk of this thing going sideways or losing part of my jaw.
Dr. Li debrided (suctioned) my nose, and it was actually painful this time. I could not help but shed tears; it was just how my body decided to respond.
I am making a totally new liquid supplement. This is where the Masters in Nutrition has been helpful. My food has been very good, but getting it in the damn food hole has been difficult at times.
After the “jelly incident” last night I have decided to try and spit up any crap going down my throat. The process of spitting up is really gross. You kind of make this hissing, clabbering noise as you try and push the mucus out of the jaws. It does come out and it is more “jelly.” I do not want that in my stomach.
March 29, 2016. Day 7 after surgery.
I saw Dr. Li this morning and we set up the last three appointments, including arch bar removal on April 25. I would rather have the extra week to make sure everything is good and stable.
I asked him about the “jelly.” He said the air tube went in the right nostril and that is the one that was more aggravated. So leftover blood is to be expected and it was nothing to worry about.
I made a delicious soup today. I also learned that when they say “cool completely before blending,” they really do mean it. My dad and I took a hot shower of curried creamed cauliflower when the blender top blew off.
Wednesday, March 30, 2016. Day 8 after surgery.-
I experimented with full fat vanilla milk shakes today. Yummy! The only issue was that the full fat milk caused a lot of mucus. I may wait a while before I try this again.
I did break down and buy some Ensure. The butter pecan flavor is freaking delicious.
Thursday, March 31, 2016. Day 9 after surgery.-
The hot showers are becoming much more productive. Dr. Li gave me strict instructions not to blow my nose. After 20 minutes in the shower and two irrigations with saline solution, I have noticed that with some gentle two-nostril exhalations, the old bloody mucus is coming out. I much prefer that to having to drool it out.
I am still having ear pain. I can’t tell if it is the jaw joint or the estuation tube. Either way, it aches.
Friday, April 1, 2016. Day 10 after surgery.
I woke up super-super dizzy. Like the worst most drunk I have ever been in my life, even dizzier than that. I take medication for mild anxiety. It comes in capsule form and I have been breaking the capsules open and trying to get the little beads down my throat. One of the symptoms that you are not getting enough medication is that you get dizzy. I will try spreading the doses out and swishing my mouth with water.
I saw Dr Li this morning. I asked him about the ear pain and he said that some patients have ear pain because there are rods in the ear that can be slightly moved when the surgery is happening.
He changed my bands. We both agreed to leave them as they are and not loosen them. I would rather be like this and have improved chances of success than have the bands looser, which would tempt me to talk. Keep me mute for another week. I am cool with that.
For the first time in at least a week I needed a Tylenol. Nothing…the pain laughed at that.
I did notice this evening my teeth are killing me. Lord, they ache. I took the Oxycodone 2 in liquid form.
Saturday, April 2, 2016. Day 11 after surgery.
I went shopping today. I forgot and left my syringe and rubber straw at home.
- It is important to remember to take these with you when you go out. If you don’t, when you get thirsty, you have no way to drink. I now keep a syringe and rubber straw near the front door in a zip lock bag.
I was dying of thirst when I got home.
I bought this meditation app for my phone that places you in a deep relaxed state so that you can imagine yourself “healing.” I am not sure what demon I unlocked with this exercise but I could feel all sorts of pressure in the muscles of my jaw. I heard snapping and popping, etc. I actually got up to walk around. I will give it another try tonight, but at least it was good at accessing whatever I have “LOCKED” away there.
My parents left today. 25 days to go to I get these bands off. I will be alone for the next 18 days until my GF shows up. In part, I am glad that they are going. It has been sooooo frustrating not to be able to talk and so tempting to try to talk. When they are gone, I will keep my mouth firmly shut. On the flip side, there is comfort that if something did happen, there was someone there. This surgery is not possible to weather alone. I am so glad that they were here. You will need someone to assist you for at least five days after release, no matter how strong you think you are. Dr. Li does not release patients from the hospital unless there is someone to stay with them for those first five days.
I made a count down sheet that I have placed on the frig. Every time I have every had to do something I dislike (with a known ending) I have made one. It helps to know that whatever you are going through will eventually have an end. One day down….
I went back to bed after they left and then got up to shower. The yellow discoloration is almost gone and I am starting to be able to smile again. The smile is totally jacked up, and not like before. I am hoping that this is just due to 25% of my face being numb.
Sunday, April 3, 2016 Day 12 after surgery
I feel like total crap. The bands are killing me. I took more Oxycodone 2, but then it made me itch like a crazy person and I could not sleep. After googling Oxycodone 2 and itching, all I found was blogs by people who are apparently addicted to it and loving it. One person said “oh I learned to love that itch.” I took Benadryl and that did not help!
I am going to buy some Tylenol PM tomorrow.
I am still getting dizzy. I am breaking the anti-anxiety medicine dose into two sessions, but I am taking it on an empty stomach. I will try “eating” a protein shake before I take the pills.
Monday, April 4, 2016. Day 13 after surgery
I went to Starbucks this a.m. The lady behind the counter thought I was deaf, and started signing to me. I don’t know any sign language, so I did not respond. Apparently she was asking me something and I was ignoring her and she left angry. Great, now I am the rude deaf guy. Really, can you think of anything worse than being a rude deaf person?
I have decided to learn touch typing. I learned in high school on a typewriter, but when I went to college I did not have nor did I need a computer ( dating myself). I always wanted to be able to type well. Now I have the time to learn.
About using sleep aids: first, don’t mix them with pain meds. Second, they taste like crap. I found that crushing the pills, dissolving them in a small amount of water, and mixing them with one chocolate Ensure works well.
Tuesday, April 5, 2016. Day 14 after surgery
Pretty uneventful day. I felt terrible. My right ear just ached and ached all night. I also woke up literally dripping with sweat. I had to change the sheets and my tee shirt. I am not joking. It was like someone dumped a bucket of water in the bed. No clue what that is about…..
I made Borscht today. It is a chilled beet soup. Yes, it sounds kind of gross. But I am getting tired of the “traditional creamed soups.” I will chill it, puree it, and eat it tomorrow.
Wednesday, April 6, 2016. Day 15 and two weeks after surgery!
After two weeks of sleeping on the wedge pillow, Dr Li said I could sleep flat tonight!! He wants to do a “minor procedure” to add screws to the fixation plate. I emailed him last night because I had shooting pain in my right ear. While I have never actually had an ice pick in my ear, I would imagine it feels like what I felt last night. Holy crap, it hurt…4 times throughout the night.
Dr Li said that happens occasionally and it is from the jaw joint.
I ate the Borscht soup today. Two words:”Utterly disgusting.” I spent two days and maybe $30 in material to make it. I tell you what, I would pay you $1000 NOT to eat it. WOW, it was sooo nasty. The funny thing was because my mouth is closed, I had to swallow what was in my mouth, and then spend 10 minutes trying to get the taste out of my mouth. Forget waterboarding. We should capture terrorists, band their mouths closed, and make them eat Borscht.
The dizziness is less. Taking the anti-anxiety medication with food has helped. I still get dizzy but now at more predictable times, like around 7 p.m. (presumably when the first dose is gone) and when I wake up. It is just slight dizziness when I make sudden movements, not like before where I needed to actually hold onto the walls.
Thursday, April 7, 2016. Day 16 after surgery
I slept flat last night, and slept like a dead man. I like this “sleeping well thing” even though I cannot talk and am having other issues (teeth pain, ear pain). The sleeping is pretty damn nice!
I made a soup that a friend who has Crohn’s disease eats often. I made this up before surgery so I know it is good. And my Vitamin K supplement finally arrived!
So a word about nutrition for a moment. If you want to make sure you grow bone as fast as you can, you need four things. First, you need calories (energy to do the work). So when making your food, fatten it up. This is a diet in reverse. You need the calories to build new bone.
Second, you need protein. Surprise: bone is actually mostly protein. People think bone is made of calcium. Bone has calcium, but bone is made of protein. So second on your list of things to eat is lots of protein. I am not going to puree a chicken breast, so I have opted for protein supplements.
Third on your list of must haves is calcium. The protein is almost like a sponge shape/configuration. The calcium (which has two functional ends) is amazing at making the protein matrix of the bone that much stronger. Funny really, the exact same mechanism that causes soap scum in your bath tub (calcium) is the same mechanism your body uses to strengthen bone.
Last one, and this is the one almost no one thinks about. Calcium does not do anything until it is “told” to be absorbed by the body. Vitamin D tells the body to absorb calcium. This is why you see Vitamin D added to milk. The two need each other. BUT, that is only part of it. Vitamin D “tells” the body to absorb calcium. The body says “sure” and puts it anywhere, such as your kidneys, your arteries, your teeth, your bones. That is not necessarily good or bad as some calcium will eventually make it to the bones. But for skeletal bone growth, there is one other vitamin that “tells” the body where to put the calcium:Vitamin K.
Almost no one even thinks of it, and for the most part unless you need bone growth or have a high calcium diet (you do not want kidney stones or calcium in your arteries), you get enough Vitamin K from things like carrots and broccoli. For me, I am consuming a LOT of protein and calcium and I want ALL of it to go to one place: my jaw bones! So make sure you take Vitamin D and Vitamin K supplements when you are eating after surgery.
One cautionary note: vitamins are toxic at high levels. They are needed for life and at low levels they are healthy and totally amazing for you. But more is not better with a vitamin. If you eat too many carrots, your skin will turn orange and then your hair will fall out (Vitamin A toxicity). So follow the instructions and do not take too much. More is not better with a vitamin.
I’m getting ready for more screws to be installed tomorrow. Night sweats again and this odd thing with my nose. I don’t even know how to describe it. I woke up and I inhaled and it was like the air was freely flowing in my nose and out my mouth without me doing anything. I know that sounds impossible and I am sure that it is, but it is the only way I can describe the feeling I had.
Friday, April 8, 2016. Day 17 after surgery.
Nights sweats to end all night sweats. I had to change a tee shirt twice and ended up sleeping on a towel. I swear I should wake up dehydrated, or the alien mother ship is just covering me with water after the experiments!
I went to Dr Li’s office and after they got me all hooked up to twilight, he installed another screw. It took maybe 10 minutes. Did not feel anything. Nervous as hell.
Back to the jaw bra and icing my jaw down. At least it is just on one side.
Thank God for the anti-anxiety meds. I asked about the night sweats and he says it does happen occasionally. I am also stopping acetaminophen and moving to Advil just in case. I think the acetaminophen may be part of my nigh sweat problem
I am now on antibiotics for five days. He said I could start talking tomorrow, but since no one is here, I would rather keep my mouth shut!
Big fight with the girlfriend. It is difficult when I am in CA and she is in GA and we can’t talk. We text, but that stinks along with the time change.
I have gotten very good at online puzzle games and am burning through books. Three down so far (not much of a TV person) and I am slowly getting better at touch typing.
So I got the new pain meds: Tylenol with codeine and Cipro. (Yes I know I said I was going off acetaminophen.) Both are liquids and they both came with this tiny syringe that fits the hole in the bottle (My 60CC syringe is too big.) My first attempt to inject a med into my mouth ended up with me wearing at least 8 mL of the 10mL. I remembered something my father came up with to help me “suck” phlegm out of my mouth two weeks ago. I refilled the tiny syringe and then used a drinking straw to get it to the back of my throat. Success!
I did switch my sleep meds to Advil PM. Used the same method of taking it (crush, warm water, and chocolate Ensure).
I tried to puree crab bisque with milk in my Nutri Bullet. Not a good idea. First, I have bits of crab stuck freaking everywhere.
Second, it went down the wrong pipe and set off coughing that lead to sneezing. Then I had blood in my saliva. Minor freak out. But I remember hearing after my UPPP surgery that a little bit of blood in mucus or saliva can happen. The key is to look at how dark the color of the blood is.
While trying to “de-crabify” my mouth, I got a good look at my lower inner lip. DAMN! There is all sorts of added tissue build up, looks crazy. I emailed Dr Li and he said that would all go away and was a result of the arch bars being present. Nasty looking.
My mouth started bleeding tonight, I swooshed with ice water for 5 min and that seemed to stop it.
Saturday, April 9, 2016. Day 20 after surgery.
It took forever to fall asleep. My jaw was very sore.
OK, let’s talk about constipation. No one wants to, but let’s.
If you are eating high-protein, you need to consume high fiber, which is difficult. I advise a “regular” dose of stool softener/laxative. I am using Miralax, and I take a dose every other day. It is up to you and your doctor what works for you, but if you are consuming high-protein and the fiber is not as high, trust me, it will help.
My jaw is super swollen and sore today following the new screw. I am back to wearing my jaw bra.
Sunday, April 10, 2016- Day 21 after surgery.
Slept well. This is actually an adjustment for me. I am not sure I would say that I “prided” myself on it, but I could sleep at the drop of a hat before the surgery. There were many, many weekends where I would wake up after 10 hours of “sleep,” eat something, and then go back to bed for 2-3 more hours. Like a lot of weekends.
Now I wake up and my body is like “I am good. No really, get out of bed. I don’t require any more sleep.” This has happened more and more since the surgery. This is what it must feel like to be “normal” and not drag yourself by sheer force of will through life.
After “dinner” I went to clean my teeth with the Waterpik and I could see that part of my lip is firmly between my clamped teeth. Who knows when that happened? Not being able to feel your lower lip stinks anyway, but apparently making a light snack of it sometime today was on the agenda. I pushed against the bands and my bloody lip was freed of the bands.
Monday, April 11, 2016. Day 22 after surgery.
I saw Dr Li today for the follow up on the screw placement on Friday. It took all of three minutes. He said it was fine and he would see me in a week. I told him that the left ear pain has gone, but the right ear pain remains. He said to wait and see.
I am starting to get stir crazy. There are only so many books one can read.
April 12, 2016. Day 23 after surgery
I had the shooting right ear pain again last night – three times. I have decided to start using hot compresses, it can’t hurt. Third day in a row of rain here in Palo Alto. I can’t wait to leave CA and get back to my own stuff/life.
I had some cold water today, and I could feel some of the cold on a part of my lower lip!! I have not felt a thing, nothing on my lower lip and chin since the surgery. That is the best news I have gotten all day!
I am remaking a creamed cauliflower soup now. This time I am not making it curried. I like curry but the curry stains the syringes and leaves a taste in the syringe.
April 13, 2016.- Day 24 after surgery.
I have noticed that I wake up and yawn more since changing to sleeping flat. I really hope after all of this that I am fixed.
The pain in my ear was different last night. It was more of a cork screw. Rather than being pain 0-10 in a micro-second, it started low and slowly built to around a 7. I am not sure if this is the result of the reduced bands or the hot compresses. Hopefully it will continue to improve.
Thursday, April 14, 2016. Day 25 after surgery.
Last night was awful: I had terrible ear pain. Eventually I started to lightly massage the joint, and that helped. It was still a miserable night. The hot wet washcloths have helped relax the muscle.
Friday, April 15, 2016. ( Tax day) Day 26 after surgery
I slept amazing last night. I am not sure what the combination was that worked, the hot compresses or the massage or the Advil or any combination. But whatever it was, it worked. I slept great.
Saturday, April 16, 2016. Day 27 after surgery.
I repeated what I did last night and had another good night’s sleep, although I did have night sweats. The massage and Advil seems to be helping. Nine more days until I can start using my jaws again. I had a sneezing fit last night and realized the secret to sneezing is letting it come out everywhere.
I made the cabbage celery carrot millet soup again today. I experimented with moving my jaw ever so slightly laterally.
Sunday, April 17, 2016. Day 28 after surgery.
I have officially consumed my 100th Ensure. Except for the fact that they have no fiber; they are really pretty good. I have started to stretch my jaw again. I am being super-careful, but it helps the ear pain to stretch and massage.
Monday, April 18, 2016. Day 29 after surgery.
My girlfriend arrived last night and I realized something: it is impossible to kiss. Seriously, you can’t feel a thing. Dr Li loosened the bands and I can sort of talk now. The pain trying to open your mouth is no joke. I can also sort of drink from a bottle now!!
Tuesday, April 19, 2016. Day 30 after surgery.
The loosened bands have allowed me to get a pill into my mouth. You have no idea how big this is. It used to take literally 10 minutes of washing and swooshing water in my mouth to get the pills down! So nice!
Hot compresses, for me, are a must. Afternoon and evening for 10 minutes on each jaw if I don’t want to wake with pain in the middle of the night.
Wednesday, April 20, 2016. Day 31 after surgery.
Six more days, until the arch bars come off! I tried not to talk much yesterday, but it was hard and now my jaw is super sore. I have learned to drink from a water bottle. That is great!
Thursday, April 21, 2016. Day 32 after surgery.
I now think that the dizziness is not related to the anti-anxiety meds. I have been on a regular dose and still get very dizzy when I move from horizontal to vertical and vice versa.
Friday, April 22, 2016. Day 33 after surgery (2 more days until I get all this stuff off.)
Dr Li said if the dizziness did not clear up, I would need to see an otologist to a “maneuver “. I hope it clears up. I am done with procedures.
I learned how to drink without my syringe. It took forever, but it was nice to be able to drink normally.
Sunday, April 24, 2016. Day 35 after surgery.
I have been very tired lately. Sleeping a ton, but tomorrow is the last day!!!
Monday, April 25, 2016. Day 36 after surgery.
I got my arch bars off today! I was so excited to be able to brush my teeth and chew real food. That is NOT how it went down. I could barely get my mouth open enough to get a baby toothbrush into my mouth and could not keep my mouth open long enough.
Eating was totally impossible and foreign. My tongue was putting the food where it always has although the jaws and teeth are now in a different place. Guess my tongue missed the memo.
I also need to use a mirror to find my mouth! With numb lips, chin, teeth and gums find where your open mouth is IMPOSSIBLE!
My jaw would have shooting pain for no apparent reason. And I have a terrible lisp. This sucks.
Tuesday, April 26, 2016. Day 37 after surgery.
Still can’t brush my teeth and eating eggs was also impossible and painful. I kept biting my cheeks and the right side of my jaw was killing me. I am still on liquid foods.
Wednesday, April 27, 2016. Day 38 after surgery.
I was able to eat some dumplings. Very, very slowly and very carefully. Most of the time I was chewing on my lips, which I cant feel. How do I know I was chewing on my lip you may wonder. Well dumplings are soft, so if, while chewing, I came across something firm (I can feel pressure) I knew it was not a dumpling!
Saturday, April 30, 2016. Day 41 after surgery.
The tongue is an amazing muscle. Really. It now seems to know where to keep the food so that I can chew it. It just figured it out all on its own.
I can also get my mouth open to use the baby toothbrush but cant keep it open for very long. I have to take little breaks. I bought floss sticks so that I can floss my teeth. My lower teeth are much more yellow and both upper and lower teeth gums and jaws are totally numb.
Monday, May 2, 2016. .
I received a notice from my insurance company today that they will be paying $8,000 of the $47,000 and the remaining $39,000 is my responsibility! Nice.
I am also getting these sharp pains in the lower jaw where the plates are. Maybe the nerves are waking up.
Monday May 9th.
Back to work.
I cant talk very fast or spit starts flying out of my mouth, not professional! Also because my lip and chin are numb I have to sort of guess where my mouth is so I am opting to eat alone.
I am able to eat fried rice and had some pancakes this weekend. It is hard for my tongue to police my teeth. Food is still left all over in between my cheeks. Rinsing with water after eating is needed because with my new extended jaws my tongue is not long enough to curve over my front teeth! Going to have to work on that.
Other great blogs that I read and which helped prepare me:
https://roxsjawsurgery.wordpress.com/
https://aboyandhisjaw.wordpress.com/
http://www.jawsurgerytips.com/tips/list
http://www.jawsurgerytips.com/tips/list
Food
Apple and grapefruit juices
Bolthouse Farms Breakfast Smoothies ( strawberry and peach)
Bolthouse “protein plus” chocolate
Ensure “Plus” Chocolate and butter pecan
“Core Power 26g Protein Milk” ( off Amazon)- Chocolate
Potato and Leek soup ( whole foods)
Lental and red Curry soup ( whole foods)
Cream of Celery soup
RECIPES
Cream of Cauliflower Soup
½ stick butter
1 large onion, chopped
1 lg head of cauliflower, chopped and cored
4 c. chicken broth
3 minced garlic cloves (I use the ready to use spice that is sold in the tubes because it’s easier.)
1 cup shredded cheddar cheese
4 oz. (½ block) Philadelphia Cream cheese
- In a large pot, add butter and onion and sauté until the onion starts to turn brown, add garlic.
- Add the cauliflower to the pot. Sauté for about 5 minutes.
- Add the chicken broth, reduce heat, and simmer 2 hours, adding water/broth as needed.
- Add the cheeses, remove from heat and let cool for 30 minutes.
- Place in refrigerator on a hot pad overnight.
- Blend until smooth the following day.
Ginger Carrot Soup
2 lbs. carrots, washed and chopped (no need to peel); discard the ends. Let dry completely.
Olive oil, as needed
Salt and pepper, as needed
½ stick butter
1 onion, chopped
3 cloves garlic (Use the tube kind)
1/3 cup flour
2-4 Tblsp. fresh grated ginger (You can use the ginger in the jar sold in the produce section.)
4 c. chicken or vegetable broth
- Preheat oven to 425°F.
- Placed chopped carrots on a cooking sheet and drizzle with olive oil. Sprinkle with salt and pepper.
- Bake in preheated oven (425°F) for 30- 40 minutes, until carrots turn brown and wrinkle.
- In a large pot, sauté onion in butter for 3-4 min on medium-high heat, add garlic.
- Add flour, ginger, and chicken/vegetable broth.
- Add carrots. Simmer partially covered for 3 hours or until carrots are very soft.
- Remove from heat and let rest on the stove for 30 min.
- Place in the refrigerator on a hot pad.
- Puree the following day when the mixture is cool.
Nutritious Vegetable Soup Blend
½ stick butter
1 large onion, chopped
4 stalks celery, washed and chopped
4-6 carrots, washed and chopped
1 head cabbage, washed, cored, and coarsely chopped
1 cup millet, washed
3-4 garlic cloves (Use the tube kind)
4-6 c. chicken or vegetable or chicken broth.1 Tblsp. salt
1Tblsp. pepper
- In a large pot, sauté onion and celery in butter until soft.
- Add carrots and sauté 2-3 min longer (You can roast the carrots if you want a change in flavor. See Ginger Carrot Soup recipe.)
- Add cabbage, millet, garlic, and chicken or vegetable broth.
- Bring to a boil, then reduce heat and let simmer 3 hours adding water/broth as needed.
- Remove from heat, add salt and pepper and let rest for 30 min.
- Refrigerate on hot pad and puree the next day.
Note: This will be good for 4-5 days (Do not freeze.)
Broccoli and Cheese soup
2 lbs. broccoli , un washed and chopped . Needs to be completely dry.
Olive oil, as needed
Salt and pepper, as needed
½ stick butter
1 onion, chopped
3 cloves garlic minced/chopped (Use the tube kind)
1/3 cup flour
1lb sharp cheddar cheese
1 cup half and half
4 c. chicken or vegetable broth
- Preheat oven to 425°F.
- Placed chopped broccoli on a cooking sheet and drizzle with olive oil. Sprinkle with salt and pepper and sprinkle with minced garlic.
- Bake in preheated oven (425°F) for 15- 20 minutes, until broccoli turns brown.
- In a large pot, sauté onion in butter for 3-4 min on medium-high heat, add garlic.
- Add flour, and chicken/vegetable broth.
- Add broccoli. Simmer partially covered for 3 hours or until broccoli becomes very mushy.
- Add cheese and half and half
- Remove from heat and let rest on the stove for 30 min.
- Place in the refrigerator on a hot pad.
- Puree the following day when the mixture is cool.
surviving jaw surgery 