at Stanford Blog
Last updated 21 Sep 2008
This Blog is for the benefit of those considering, or about to go through, MMA/BiMax surgery for sleep apnea. You are welcome to share it with anyone that might be helped. Some of the pictures and text are not particularly flattering of me but hopefully the candidness will be helpful.
This is my story and it contains my personal opinions. I am not a Doctor, and don't play one on TV, so check with your Doctor if you have any questions.
Email questions or comments to Roger AT Arrick DOT com
Menu to Special Sections of this Page
The Patient Collaboration Revolution
Fruit and Energy Smoothie Recipe
Zip-n-Squeeze Food Delivery
The Attitude Choice
Foley Catheter Information
Creative Things to do with an old CPAP Machine
Sleep Study Chart Bloopers
Dec 2006 Update
May 2007 Update
Oct 2007 Update
Aug 27 2008 - 13 Tips for MMA Patients
Sleep Surgery Support Society Meetups
3 Year, 36000 Mile Update
MMA = MaxilloMandibular Advancement - also called 'Bi-Max' or MMO
Details of MMA surgery: See this article
The best sleep forum is at Sleepnet.com
High success rate: See this article
Surgeons: Dynamic Duo Dr: Nelson B. Powell and Robert W. Riley
I've become a strong advocate for taking sleep seriously because of problems I've experienced myself, and now notice in so many others. Sleep problems, including involuntary problems caused by our airway, and voluntary problems caused by our own actions, are so under-recognized and under-appreciated as to be laughable. But, as we watch news about yet another truck driver dozing off at the wheel, it's just not funny anymore.
If you are not sleeping well, you are not healthy, simple as that. Dysfunctional sleep is proving to be a great medical mother lode with connections to heart disease, SIDS, diabeties, depression, anxiety, panic attacks, acid reflux, ADHD, migranes, hypertension, stroke, joint pain, memory loss, impotence, tachycardia, tinnitus, night sweats, gout, and the list goes on. Because of this, I believe in the future, sleep studies will become as common as blood tests. But, due to the snail-like speed at which bold new ideas are accepted, even in the sciences, this will probably take another 25 years.
Thankfully, the greatest medical advancement of all time is staring us right in the face - the internet. Now, doctors can easily become informed on disorders that weren't covered in school, or didn't even exist - which is certainly the case for many sleep disorders. Also, research can now fly at speeds that our Grandparents didn't even dream about. The simple motion of a few fingers can now retrieve information that use to require a day at the library. Add to that the tremendous power of a new phenomenon I call Patient Collaboration via forums and emails, and you have a medical revolution on your hands. This webpage is part of that revolution.
Sleep, the Mandatory Luxury
May 5 - Initial consult, XRays, scope
July 6 - Molds of teeth made
July 25 - Flying to Stanford Medical Center from Tyler, TX.
July 26 - Surgery day
July 27 - ICU
July 28 - Normal hospital room
July 29 - Back to hotel, office visit
Aug 4 - Follow up
Aug 5 - Flying home
Sept 6 - Smaller surgery to get archbars removed
A Brief History
Hello. My name is Roger Arrick. I've always been healthy and full of energy but 4 years ago, at the age of 39, I started having strange awakenings while sleeping. Eventually I suspected that my airway was collapsing and got a sleep study which showed mild apnea. I don't know how they can call it mild when it affecting me so much. Started using CPAP which helped greatly. Over the next 4 years I had several soft-tissue surgeries which didn't help much. My apnea gradually got worse and CPAP (at any pressure) stopped working. This affected my quality of life more than I could ever explain. I don't fear death, I fear living with bad sleep for 40 more years. I never understood why sleep-deprivation was used as a form of torture in wartime, now I do. The big surgery to fix apnea is MMA which moves the jaw forward to open the airway. I decided to go straight to the source to have this done and ended up at Stanford. This blog describes my journey.
On my first visit with Dr Powell, I got XRayed and scoped through the nose. Both showed a very narrow airway. As I suspected, MMA is the way to go. Previous XRays from other doctors showed the same thing. I was glad that some other surgery or dental braces weren't needed before MMA and I was emotionally ready to get this problem solved.
One more short pre-op visit was made to have molds made of my teeth. These are used for pre-surgery planning.
Stopover at the Houston Airport, then off to San Jose
Pictures in Palo Alto
Cars in California Cause Cancer - We have fewer lawyers in Texas :)
Gas Prices in Palo Alto - Doesn't look so high anymore!
Last Meal at Long Life Noodle 7/25
At the back of the Stanford Shopping Center. Lemon chicken is my favorite.
Going Into Surgery 7/26
Dr. Atkinson is the Anesthesiologist.
He is very alert!
Right After Surgery 7/26
Head wrapped for the first day.
The mask provides moist air which helps clear the airway.
Roger and Super-ICU-Nurse Larry 7/27
Some nurses are gentle, some not.
You really need gentle the first day.
I had my share of both. Larry was great.
Earthquake Sign at Hospital
Emergency Roger Scissors for cutting rubber bands
Room Window from Outside
Top Arch Bars
Best Western Riviera Menlo Park
Margo working on a quilt to pass time
Do Machines get lonely?
Dr. Nelson Powell and Roger Friday 7/29/05, Post-Op Nose Cleaning
Roger in the Hotel Room 7/29
Thinking about how to eat through a syringe.
You can see it on the table.
It's 7pm Friday, July 29. My first day out of the hospital. I brought my laptop to create this web-page for those that are following my progress. The hotel has high-speed Internet which helped compensate for my slowed brain function.
How do I feel? Like I got ran over by a truck and haven't eaten for 3 days. BUT, I've slept twice today for short segments and last night many hours. This is a giant miracle. Hopefully it's not just the drugs. About 30min after each pain drug I feel semi-normal and can walk around without moaning :)) Like others that have this surgery, my draining nose is the biggest annoyance. Other things include cracked lips, throbbing head, the usual. I'm able to eat a syringe or 2 of liquid food every hour or so - blendered fruit, yogurt, mashed potatoes and milk, Insure.
Every hour that I endure is one hour closer to feeling normal. Would I do it again? Even at this point? The answer is yes. After careful consideration, I feel not so different than this about 2-3 times a month due to sleep deprivation anyway, so this is not that big of an investment to possibly feel normal for years. Thanks to all that have emailed, wow, didn't know I even knew that many people.
It's 8am Saturday, July 30. Had a very good night of sleep. Dreamed constantly. Anyone that knows my situation knows this is a miracle. Woke up several times but then went back to sleep. I'm scared it's somehow temporary or a fluke but all the evidence points to a cure. It's been 4+ years since I've slept without CPAP - now I've gone 3 nights in a row without it.
It's important to not skip the pain meds because it sneaks up pretty quick. Margo is crushing up Tylenols every few hours and that helps with how I feel and mild fever. Every day is noticeably better than the previous with one possible exception. Today I'm going to focus on getting some real food down. The first will be a banana smoothie. Looks like I've lost 5 pounds or so, just a guess. If I still feel good, we'll probably go on a short road trip.
Face Before 1
Face Before 2
Face Left 7/29
Notice on that last picture a little scar on the jaw - that's for access to the back screws. Other than that, there are no external scars. I would really like to know how they do so much work and only make little incisions in the mouth, but Dr. Powell wouldn't tell me the secret :).
It's 9am Sunday, July 31. 5 days since surgery. Last night wasn't so good. Every time I fell asleep I awoke with a sudden twitch. I don't know if this is because my nose is clogged, the meds or what. Finally, decided to use CPAP at a lower pressure of 8. Slept OK till about 2am. Acquired a giant 1" bubble on the left side of my cheek. Felt like it was full of fluid. Slept the rest of night sitting up without CPAP. Noticed in the morning that I have a big yellow bruise around the base of my neck. Took a shower and will try to get some food down. Two steps forward, one step backward.
It's 9am Monday, Aug 1. Last night was pretty good. Loosing the flu-like feeling slowly. Woke up with breathing events or twitching this morning. Not sure if from meds, throat closing off, or congestion. Nose is major clogged, long showers help. Still have bruise around neck, on hands from IVs and small bump on the left cheek. Cheek swelling is slightly down. Last night ate 1/2 hamburger patty. Also crushed up an Ester C and they always make me feel better. Digestion is sloooooow and not working very smoothly yet. A short walk tires me out like a marathon.
So far, all days are noticeable better than the previous. Today we got XRays taken at Dr. Powell's office and will have a meeting tomorrow. Have lost 8# so far. Is my sleep fixed? Not sure, right now I'm dealing with terrible sleep-starts and they act like airway problems. No pain meds today. My attitude at this point is to give myself time to heal. The office crew gathered together in front of the web-cam to heckle me, see below.
Face Left 8/1
Crew saying hi on the office web-cam 8/1
Crew saying hi on the office web-cam 8/1
One Week Since Surgery!
It's 7:37am Tue, Aug 2 (Margo's Birthday). I secretly built her a custom shelf unit for her office before we left and arranged to have it installed while we're away. Allen (son #1) took a video of it with a short narration by me and that was her present, along with an incredibly touching card. :) My singing of 'happy birthday' was not very impressive.
Last night was pretty darn good. Woke up a couple of times but not more than 15min. No CPAP. Repeat, no CPAP. Incredible. I did take one of my "pill's", will deal with that after recovery. Slept laying on the side half the night, some on back, some sitting up. Laying on the side requires a little pillow arranging to prevent pressure on the sensitive jaw.
Numbness is the same, bottom lip and below, and a very small patch under the right eye. Everything else is live, neck, cheeks, upper lip, nose, etc. Starting to get prickling feelings from the stitches. Can tell my nose is a tad bit stiffer on the sides. It doesn't collapse like it use to when I inhale. This is because of the maxilla forward movement and a welcome side-effect.
Eating is easier now that I can spoon small stuff in through the front. Takes about 30min to clean out the teeth (still 2 rubber bands on each side) using toothbrush and saltwater rinse.
No pain meds needed at this point. Didn't really need them except for the first 3 days but kept taking them because I had flu-like feeling. Still have that feeling but it comes and goes.
One more major bodily function operational, one to go. Swelling very slightly down. Still congestion with lots of yucky, bothersome drainage.
All days are improvements with maybe 1 exception, and ups/downs in between. If this all works, no question this temporary life pothole will easily be worth it. Getting great response from the sleep forum about my posting, hope it's helpful to someone. Going to see Dr. Powell this morning, will post.
One Week Dr Visit, XRays
Got to look at the post-op XRays taken yesterday. The difference is incredible. Dr. Powell said "Oh, you're gonna like this". My airway is now large (normal or beyond). Before, my airway looked to be only 2mm, but probably bigger. NOW, my airway is bigger than my thumb.
The XRays show that there is a small plate on each side of the lower jaw, each with 4 screws. On the upper jaw there is a similar plate that is "L" shaped. Additionally there are 2 screws on each side of the lower jaw near the back, and an assortment of metal wires running from teeth to bone on top and bottom in the front.
Dr. Powell scanned these XRays for me and put them on a floppy. He said my swelling was way below normal and no signs of infection. He even said we could go home if we want, but we checked and it's very expensive to change flights.
He also removed one set of rubber bands - now only one on each side. Can open my mouth easier now but when I relax the jaw goes back - feels about right. Got to meet Dr. Riley too. He didn't know who I was, but I knew him.
Pre/Post Op XRays Comparisons
Dr.Powell/Riley's Office at 750 Welch Rd.
Stanford Hospital Front
Stanford Hospital Frank Lloyd Wright Textile Block Style
It's 9:30am Wed, Aug 3. Remember when you were a teenager and slept in, woke up, went back to sleep for another little dream, then slowly woke again and decided to get out of bed because you felt like it? This happened to me this morning!
Yesterday's food intake really gave me a boost. Swelling just slightly there, still a yellow patch on neck and faint blue patches on wrists. No pain meds. Still some nasal drainage problems. All bodily functions now on-line. Today is sight-seeing day. Went to an antique store, hobby store, drove around forever. Ate lunch at taco bell, dinner at Denny's. Avocado and yogurt for night time snack.
8th Day Pictures
Face Left 8/3
Yellow Lab at the hotel
66 Mustang Convertible on El Camino Real
I had MMA at Stanford and all I got was this silly T-Shirt!
It's 8:30am Wed, Aug 4. Last night was the best sleep I've had in 2 years. Woke after 7 hours and was ready to get up. Incredible. Laid in bed for over an hour but didn't dose because I didn't need to. Just enjoyed resting without needing to sleep. This wasn't all in my head after all.
Today I have another noticeable improvement in energy but still have to rest after walking 100 feet. Eating is going good. Chopping food into little bits, sucking them through a small mouth opening, mixing around (absolutely no chewing), then swallowing. Takes about 30 min to eat 2 tacos (Minus shell).
Today is packing day before the trip back home tomorrow. Margo and I are going to try a movie today if we can find the theater. Thanks to all my friends, family, forum members for all the well wishes and prayers which obviously worked nicely. Peace.
First night back home. Feel 90% normal. Main complaint is a lack of energy, some nasal drainage, and temperature sensitivity. When it's slightly cold I shiver, when it's slightly warm I get faint. Sleep? Well, let me tell ya, last night I slept, and slept, and slept, woke up this morning after 8 hrs and slept another hr. Right now, I don't feel sleepy - a miracle. I do feel like the luckiest guy on earth.
Another decent night of sleep. Had one event in the morning that jolted me awake. Could have been congestion. Went back to sleep for another hour. 9hr total. Yesterday afternoon I fell asleep on the couch. Wow. Can't figure out why, but I lost another pound yesterday. I must not be getting as much food as I thought. Had Milk, eggs, ravioli, 3 tamales, ice cream, various drinks. Certainly not going hungry. A stitch fell out of my mouth, guess it's time for them to start dissolving. Spent all morning putting away all the CPAP machines, masks, straps, hoses, etc. Took up 2 large drawers.
Woke up in the middle of the night twitching. Not sure what this is but some nights I have it and some I don't. I'm trying to taper off the medication I've been using for the last 6 months and maybe that's not helping any. It could also be that I had more caffeine than I usually do yesterday (decaf tea, and some MMs). I've become very sensitive to caffeine since I've been off (about a year) and it's been known to cause this. Also, yesterday I had so much energy that I did a lot of work and may have exhausted myself. Walking up the stairs is no longer the exhausting chore it was a few days ago and I'm loosing my temperature sensitivity. I'm ashamed to say that I probably overworked myself by installing a tall FM antenna mast. All of this could have contributed to last nights sleep. But, in spite of it, I'm not very sleepy. I'm pretty sure my airway problem is fixed, now I just need to find out what the random twitching is all about.
Nightly I put on a second set of rubber bands which holds my jaw more comfortably. But last night I didn't. These small bands go on the little hooks between the upper and lower arch bars. They are difficult to get on and sometimes they snap and pop my lip - ouch! :) I can open my mouth only about 8mm so brushing requires a small toothbrush. I tried to use the water pick but the lowest setting is still too aggressive for sensitive gums with incisions.
Lost another 1/2 pound yesterday in spite of eating very well. Found a way to eat chicken - chop it up using one of this contraptions that looks like an inverted bowl with a spring-loaded handle on top, press down and the cutters do their job. Several chops and you have very small bits, then add some gravy and WOW is that good. Haven't used the syringe for many days since I can spoon in little bites. Even though I'm troubled by last night's sleep, I figure I'm doing so good and recovering so fast that I should ignore it. Two steps forward, one quarter step back.
Physical, Mental, and Emotional Inventory
3 Week Update
Still recovering. My energy is back 98% but there are spurts of energy and ambition, then bouts of mild depression and malaise. I hear that mild depression comes with surgeries. Some of my strength is gone and I've been doing small workouts with light weights. Have only gained back 1# in spite of eating well. Been going to work most days this last week for a couple of hours at a time. Swelling is 90% gone. Still more swelling on the right side. Chin and lower lip still numb - probably will be for many months or longer. Nasal drainage is less but not completely gone.
My sleep is unusual. Some nights I sleep for 4 hours and wake up ready to go, then lay in bed dozing for another 4 hours. Sometimes I have terrible twitching which keeps me up or wakes me up. I also have bouts of waking up with my heart racing. I can't believe this is an obstructive event, but possibly a central event caused by breathing confusion from going off 4 years of CPAP. Still trying to figure that out. Will report back next week
4 Week Update
Can't believe it's been 4 weeks. Wow, time does fly. I'm working normal hours these days as my energy has mostly returned. I'm also getting back my ambition as the mild depression fades. I'm now able to emotionally endure problems unlike a week ago - perfect timing :) The twitching that was causing so many problems has subsided. I wish I knew exactly what was helping but I'm trying several things including various vitamins (folic acid, C, Iron, Cal/Mag), getting off ice cream, chocolate, caffeine. It could be easing of sleep debt or surgery stress too.
UPDATE - Source of the twitching was very small amounts of caffeine - Even decaff tea.
Every night my sleep is a little better. I seem to need almost 10 hours, but the mornings contain many awakenings. I try to take naps sometimes but only doze - I'm sure it's the nightly seroquel I take which I'm tapering off of. Of course, No CPAP - a miracle.
Haven't used any rubber bands on the arch bars for the last 5 nights - done with that. My swelling is 95% gone, still more on the right side. Lower lip still numb, no improvement. Have gained back 3 pounds (5 to go). Eating is not nearly as hard as I thought. Getting plenty of food. No chewing. Some of the stitches have fallen out during brushing, but most are still in. Randomly I have teeth pain which feels like pressure. I'm sure this is the feeling that people who have braces experience. I can open my mouth about 10mm. Eagerly awaiting the next surgery on Sept 6th to remove the arch bars, and to say a final goodbye to Palo Alto and Stanford.
5 Week Update
Wow, my shirt doesn't look like that in real life - must be a camera thing.
Another week flys by. As you can see by the picture, not much swelling left. My energy is 99%, but still slightly weaker than normal. My sleep is CPAP-less and getting better every night. I wake up about 4am and about every hour after that. Getting 9-10hrs a night. Guess I needed some catchup. I can tell something is happening with my numb chin because of various strange sensations - hopefully it's nerve regeneration.
The arch bars are starting to bug me. Having to use wax to prevent pokes from the wires. Thankfully they come off next week at Stanford. Body weight is steady. Eating without chewing is no problem. Mixing whey protein with pancake mix works great! Can still open my mouth only about 10mm. Life is becoming normal.
6 Week Update - Arch Bar Removal Trip
We flew to San Jose from Texas on Labor day and drove the short 15min trip up to Palo Alto/Stanford the day before the arch bar removal (Sept 6th). Some doctors do arch bar removal in their office but I've heard from some of them and it's not a happy thing. Dr Powell does this in the hospital as a short surgery to make it easier on everybody. I was completely knocked out, It was a non-event - no pain, nothing. My upper jaw was numb for the rest of the night but I was still able to catch up on eating. It's treated like any surgery and you have to go through admissions, put on the fancy dress, and the whole bit. Seems like a lot for such a short procedure but I'm happy with the comfort it provides.
I saw Dr Powell in the hallway before surgery and asked him how many surgeries he had done that day: His answer - 2!. My surgery was done at 4:30pm and I hadn't had anything to eat since midnight and that was by far the most difficult part. Somehow I got the instructions wrong from Dr. Atkinson about what I could drink. He gave me a C-minus on comprehension :)
The arch bars are connected to the teeth with wires. The arch bars are also connected to the bone above and below with suspension wires and all this is now gone. My mouth is 'normal' now and I think it might be slightly more comfortable to sleep too. My upper lip is not protruding like it did before now that the hardware and wax is gone. I look fairly normal at this point but still have a very slight amount of swelling on one side of the jaw.
The next day I felt totally normal after a good night sleep and we drove up through 'The City' San Francisco, across the Golden Gate Bridge to tour the Marin County Civic center designed by Frank Lloyd Wright - Awesome! Got a parking ticket :) After that we headed back to Dr Powell's office for a post-op XRay. The lateral shows my airway still huge but slightly narrower than the immediate post-op XRay of 6 weeks ago. He said it was normal and that I was still 'over corrected' meaning "BIG AIRWAY". They also show that in addition to the plates, there are some wires above the front teeth that are going to stay - I didn't know that but it's no big deal. I guess I can't dry my hair in the microwave anymore :)
We chatted for quite some time and looked over the XRays. He showed me how to use tongue depressors to wedge my jaw open gently to increase opening. My current jaw opening is 19mm and he said he had never had a patient that didn't regain full opening. He wants me to have a sleep study within 4-6 months for the record. At this point I believe I'm fixed but I still need time for my sleep to normalize. Almost every night is good and the ones that are not can be attributed to caffeine, late night drumming, or lack of decent nutrition (protein). I'll be switching to Monthly updates from now on.
2 Month Update - Sept 26, 05
Are you ready for a story? Two days after returning from Stanford for Arch Bar removal was a Saturday. After another decent night of sleep, I got up and worked all day around the house, drummed a bit, worked out, dinner with the family, the usual. I was very energetic which is a good sign that I got good sleep.
Then, out of the blue, totally unexpectedly, Saturday night was one of the worst nights I've ever had. Constantly being woken up with choking and swallowing. Sunday was a total loss. Fatigued, I laid on the couch most of the day. The following week I worked part time and did slightly better while still having some bad nights. Felt terribly fatigued during the days and had lost more weight - even down below my post-surgery weight - scary.
Finally on the following Sunday I'd had enough, knowing I was unable to go to work the following week, I made a call to Dr Powell's office. I talked to his partner Dr Sesso and explained the situation. Later that afternoon, Dr Powell called and we talked about what might be going on. No pain, no obvious sign of infection, no 'pop' indicating something had come loose. I told him it was impossible to travel since my energy was gone. The next day (Monday), Dr Powell called and said to find a way to come see him. I bought tickets for Wednesday and hoped for energy.
Traveling 1600 miles Wednesday alone was very difficult. Several times during the day I felt so fatigued I almost passed out. Got into town in the afternoon, did the hotel thing, and got to Dr Powell's office around 4pm. Julia took an XRay and put me in a room. Dr Powell came in holding the XRay and said he was going to finish up with other patients first then come talk with me. I said: "Let me see the XRay". He said he would show it to me later. I figured I had a surprise coming :).
Around 5pm he came in and showed me the XRay. My airway looked like it did PRE-MMA surgery! He said he'd never seen anything like it. One difference was that my hyoid bone was located higher than before. We went into his office and compared XRays on his light table with Dr Hester, Dr Sesso and the 2 apprentices (one from Israel and one from Korea I think). Everyone shaking their head.
Dr Powell asked if it was possible that I swallowed during the XRay and I told him probably not. I've had more experience in the last 4 years with XRays than a neutron star! After some more head scratching he told Julia to take another XRay. During the second XRay I made an extra effort to relax my throat and it showed my airway completely fine! In fact, slightly better than the last post-op XRay taken 2 weeks ago. Wow, what a ride :)
Update: After a lot of experimenting I found that this whole event was caused by spray paint exposure. My airway was tensed up during the first XRay due to thick drainage.
But still we had to figure out what was going on with my sleep. After some time it was concluded that I have thickened post-nasal drainage that is causing swallowing and choking during sleep. They concocted some prescriptions including a nasal spray Atrovent (not a steroid), Mucinex (Guaifenesin, 600mg), and Lunesta.
It appears that I got into something on that energetic Saturday that inflamed my airway and made my mucus thick. It could have been a million things including spray paint, pollen, saw dust, dog dander, etc.
I stayed in Silicon Valley for 2 more days and got moderately good sleep although still fatigued. Went to see a customer, a laser cutting shop, and a pre-surgery MMA patient that wanted to chat. Very busy day.
The weather was beautiful. Many of the stores and restaurants leave their doors open. I was told that the day before I arrived there was a massive thunderstorm in the valley that got everyone excited. The outdoor furniture at the hotel was all wet.
Saturday Morning I woke up at 3am to get ready for my trek back to Texas. My flights went from San Jose down to LA, then to DFW, then to Tyler. Hurricane Rita was plowing through East TX and was on track to be there just as I arrived. My hope was not getting stuck in LA. Can't imagine sleeping overnight in an airport, but still it would be much better than my CPAP days. On the first leg I actually slept well sitting straight up and missed the drink cart! Got all the way to DFW but the landing was crazy due to high wind gusts. The Tyler leg was canceled due to high winds. My brother Randy who lives in DFW came and picked me up and drove me to Tyler (2 hours+). There were several wrecks and overturned trucks on the highway as the rain and wind gusts blew us all over the place. Also a big fire. My driveway at home looked like a war zone with tree limbs all over. Very happy to be home. Thanks Randy - You Da MAN!
Last night was an OK night and I have enough energy today to do some home projects. Most of the time I was sleeping with my mouth open. I guess that's OK. I had one breathing event while on my back that jolted me awake but the rest of the night was OK. The nasal spray and Mucinex must be helping some. I still feel inflamed but the drainage is flowing better and that was my problem - I think. Using a nasal irrigator seems to really clear me up too.
In other news: Chewing is becoming possible. Last night I had a steak but had to cut it into thin slices. Can crunch gently on potato chips and the like, but can not chomp a carrot or other hard things. Concerning facial features, every once in a while my wife says that I look virtually normal, or even slightly better. My chin is still numb but sensations are returning and sometimes I get tingling feelings so I think nerve regeneration is in the works. I can still only open my mouth about a thumbs width and have started daily stretching to regain full opening. And, when I sleep a 'normal' night, I don't have the afternoon crash/nap that I use to, which is certainly an indication that my sleep is more restorative than it use to be.
So, here it is 8 weeks after surgery. Besides the recent surprise detour and lost week, I feel like I'm on the mend, and might have found a critical piece of my sleep puzzle - Spray paint sensitivity. Without a doubt, MMA fixed my main breathing problem (tongue collapse), but it looks like I've underestimated the affect of allergies (mainly thick drainage) on my sleep and will begin working on that.
Every week I get more emails about my story. I'm glad so many are finding it helpful.
One trick to getting enough to eat is to chop food into fine bits. A great tool for this is the Pampered Chef #2585 Food Chopper. It works well with fruit, pasta, and even chicken meat. Add a little BBQ sauce, salad dressing, or soup broth and you're good to go. Watch out for spicy sauces because they tend to sting healing incisions. The chopper comes apart for easy clean up too. No, I don't get a commission :)
Zip-n-Squeeze Food Delivery
Even though I haven't used it, Zip-N-Squeeze has been used by many people I've talked to with great success. Basically, it's a flexible bag that allows you to dispense liquid or soft food easily without sucking. It can also help with oral hygiene while the toothbrush is off limits.
I've heard that this company may now be out of business (9/09), so don't just send them money until you confirm.
9 Week Mini-Update
The thick drainage that caused me so much problem is better and my sleep is back to how it was before this hit me. Fall allergy season is affecting others in my home with sneezing and coughing. Mucinex and Atrovent is doing a good job for me. Felt good all week with good energy and ambition, and gained back a couple pounds.
3 Month Update - Oct 26, 05
Quick Update. The surgery is a distant memory. So is CPAP. There is no pain or swelling left. Jaw opening has increased from 19mm to 29mm in the last 3 weeks. (45+ is the goal) Chewing is possible for most things except hard candy and steak. I still have some teeth that feel funny or loose. My chin and a small place on the roof of my mouth is numb but feeling is slowly returning. If it doesn't return completely, I can live with it.
Most people that see me daily do not notice any difference in my appearance but people that haven't seen me since before the surgery notice a slightly pronounced jaw.
Sleeping on my back does not usually work, I wake up with what appears to be a breathing disruption. So, I sleep on my side and with my mouth open. I'm not exactly sure what is going on but it's still only 3 months since surgery and it's possible there's tissue that needs recovery time. Minor allergies definitely affect my sleep adversely and I've been taking meds to help that.
My State Farm Insurance plan has really done good with all this. I am impressed by their speed and they have a customer for life. My goal is to have less medical expenses than I pay them in fees so they can make their money back. I'm on my way to that.
EMails about this blog are still coming in. I'm glad it's proving helpful for people. Hearing someone else's story obviously helps tame the worries of a future surgery.
4 Month Update - Nov 26, 05
My energy and ambition are strong. Started remodeling the master bathroom and have several big projects going at work. I'm also catching up on reading now that my concentration is better and my eyesight seems better. It's amazing how many things bad sleep affects. This would have been impossible pre-surgery.
Many people ask about pain - I have none, and never did have much. I can still only open to about 29mm which is enough to eat a hamburger but not what it should be. Daily I do stretching exercises to improve that. I can eat most things. Meat is very tough but doable, and nuts are too hard.
The sensation in my chin is slowly returning. I'm pleasantly surprised. Cold ice-cream feels very strange on the lip :)
At Thanksgiving dinner, family members that I haven't seen since before surgery said they couldn't really tell that my jaw was different. One said I looked better.
I still stand amazed that State Farm Insurance came through for me without a struggle. Wow, how blessed can a person be?
Christmastime Update - Dec 16, 05
Heck, I'm not afraid to say "Merry Christmas"! Merry Christmas, SO THERE! :) Celebrating Christmas is not an act of disrespect to others! What's this world coming to?
Ok, now that's all out of the way. Although my sleep is not perfect, I can easily say that this is the first year in my life that my sleep is BETTER than the year before. Much better. MMA was certainly worth it without question.
Thanks and Merry Christmas to all of those that have emailed me about this blog - Jeff, Sam, George, Bill, Dee, Tod, Larry, John, David, and the list goes on...
CPAP-less in Texas,
6 Month Sleep Study - Feb 2, 06
Dr. Powell scheduled a post-op follow-up sleep study at 6 months. This is done for all MMA patients even if they feel cured. I had the option of having the study here in Texas but since I've been experiencing events while on my back I thought it would be best to go to Stanford.
Stanford has a special sensor called PES to measure esophageal pressure and that gives Doctors one more piece of information. More information = good.
I showed up at the clinic at 7pm and they sent me to a room promptly. After filling out some forms and slipping into my jammies, a nice tech came in and started wiring me up. Wires and wires and wires. Thought it was never going to end. The glue that they use to attach the sensors is very strong, unlike other studies that I've had that used a vasoline-like substance. The glue, and later the remover, had a strong odor and made me light-headed for a few minuites. Much like paint thinner. I think it's overkill.
After all the wires were hooked up to my head, face, chin, chest, legs, she gave me a tissue. What's this for? She said my eyes may water when she installs the PES sensor. The sensor is basically a small-diameter feeding tube not much bigger than a pencil lead. Into my nose it went and then massive gagging, strange noises, and a flood of water from my eyes. Uncomfortable would be an understatement. Each time I swallowed I could feel the tube - so I quit that.
Into bed I went, downed half an Ambien, and off I went. Minus a few interruptions to adjust the sensors, the night was uneventful and I slept most of it. I pushed the button at 6:45 (didn't know the time then) and the tech came in to "disconnect me". Removing the PES lacks the drama of insertion. The tech said they got enough data but she isn't suppose to tell me anything - that's for the Dr. to do. After a few minuites I was gone.
At 10am I went over to see Dr. Powell. The office crew - Carol, Marieline, Julia - commented that the blog had been helpful to many patients. A quick XRay showed my airway is huge with no noticable change since 4 months ago. No results from the sleep study. Could take a week or 2.
For lunch I went over to the Stanford mall and got my favorite - Tiramisu, and some lemon chicken at Long Life Noodle. At 2:30 I went on the long-awaited tour of the Frank Lloyd Wright-designed Hanna House near the Stanford Campus. Absolutely fantastic and we had a great conversation with the tour guide who had many interesting stories about the house, the Hannas, and Mr Wright.
That night I had dinner with a fellow robot builder Chuck - my first time to eat swordfish. Chuck has been a robotics guru for ages and also has one of my synthesizers. Later I realized that I felt good in spite of sleeping at the clinic the night before.
The next day was Friday and I had lunch with another apnea sufferer who's considering surgery, then later that evening had a visit with yet another apnea sufferer in Atherton. The latter has had apnea since he was a kid and just recently discovered it. It explained why he felt the way he did and he was ready to get it taken care of since it was getting so bad. His appt was scheduled for the next week.
This area is difficult to navigate, especially at night, since the roads are not grid-like. After 37 wrong turns, I ended up on the 101 going South....no North. Traffic was going about 5 miles/hour. No sweat, I was on VACATION, and didn't have anywhere special to go.
Saturday was traveling day. Got to the San Jose airport at around 5am, back in Texas at 2pm. Thank goodness for the iPod!
My sleep is SOOOO much better, but not perfect. I'd say I'm 70%+ better. I can certainly live this way but would like to be even better. Before the surgery, I could not live that way any more. Now I have very small events in certain positions and when my airway is inflammed due to allergies or paint, sawdust, whatever. They are just enough to wake me, but taking an Ambien lets me sleep fine and I feel rested most days. The afternoon sleepies cause me problems but I've learned that having a high-protein snack at 3pm helps tremendously. Before surgery the breathing events were drastic and caused heart racing, panic, choking, etc, and a sleeping pill would not cover them up, plus I HAD to use cpap. Now, I've been CPAP-less for 6 months. I'm guessing that the sleep study will show a very few small events. My problem is that I'm such a light sleeper, anything wakes me. We'll see what the study says.
Forgot to mention... I can now open my mouth about 34mm which is an improvement from 29mm 2 months ago - not bad. And I'm having new sensations in my chin. It looks like I'm going to regain some of the feeling in my chin but not all.
Sleep-Study Results - Feb 28, 06 - Updated
The sleep study at Stanford appears to be more exhaustive than any I've had before. An esophageal pressure sensor (PES) was used which is very uncomfortable. I stayed on my back the entire time - worst case. The study showed 44 events per hour - mostly hypopneas, some out-of-bounds negative pressure from the PES, no centrals, no PLMD, and good o2.
After going over this study and a pre-MMA study done TX, it appears these can be compared. In both studies, CPAP was not used, I had 10mg of Ambien, and stayed on my back most of the time.
In the pre-MMA study I had NO REM sleep, zero. Mostly stage 2.
What's interesting is that the number of 'Events' in my post-op study is twice as many as the pre-op study. Obviously I'm much better, so what's the deal? The reason is that during the post-op study I was actually able to sleep through these events because they were mild, unlike the pre-op study where airway collapse was more complete and kept me from getting into REM. It appears that there are a lot of people with a low number of events, but damaged sleep architecture resulting in severe fatigue. Our brains are adapting by staying out of deep sleep to prevent airway failure. This is characteristic of "light sleepers". Of course we all know about "deep sleepers" that can lay down anywhere, sleep anytime, and snore, choke, gasp through it all. I've written about these "Two Types of Sleepers" on the forums. AHI cannot be used as the ultimate score. This is my un-learned opinion.
The XRays still show my airway is huge and my sleep is definitely much better. I still have some events while on my back and maybe some small ones on my side but they are nothing like before. Before, CPAP wasn't stopping the events (at any pressure), they were much greater in intensity, and were keeping me awake all night. Fatigue was terrible and getting worse by the month. Now, I've slept for 9 months without CPAP. Most days, my energy is 99% with a difficult dip requiring a nap in the afternoons - a great improvement over the pre-op days.
I can't help but think if I had gone step-wise through the phased protocol I would be 95% instead of 70%. I've become suspicious that my previous soft-tissue surgeries may have been less than optimal and possibly harmful. In spite of this imperfection, I'm so much better than before and my life, ambition, concentration, attitude, etc are greatly improved. MMA is difficult, I guess most are, but it was worth it to get some decent sleep.
My jaw opening is still about 34mm so I guess the improvement is going to be slower from here on out. Can't remember to do those stretching exercises! Chin numbness is reduced to a strip about 1/2 inch wide so I'm hoping it will all come back.
13.5 Month Update - Sep 17, 06
We'll it's been more than a year since MMA. I'm sleeping about the same, much better than before MMA, but not perfect. The afternoon dip is really difficult and I'm unable to work through it. After Dinner I'm fine. Thankfully I'm self-employeed and can work my schedule around this.
Mouth opening has settled at 37mm and I have no trouble eating anything. Tough, chewey meat is a slight exception - it tires my jaw.
I lost about 10% of my body weight after the surgery, and it never came back. This story is common.
Haven't used CPAP since the surgery and that in itself makes the whole thing worth it because CPAP was so difficult for me.
I'm having to take an Ambien to get decent sleep. I guess it's not the end of the world but I'd like to be off. Plus, it's about $100/mo ($1200/yr), 30 years would be....$36K ! My State Farm insurance is great but there's no prescription coverage. It's funny to hear people complain about $10 co-pays :)
If I had it to do all over again, I would have gone through the phased protocol step-wise using experienced Drs. It seems like most people that have great success with MMA have done that. I'm happy with my improvement, but it's not what I need ultimately. So, next month I'm going back to have the soft-tissue work done. Not nearly as big a deal as MMA, but still an ordeal.
Looking back over this last year I see that I've accomplished a lot of things around the house including remodeling a bathroom, and at work including replacing our entire accounting infrastructure and a big programming project. All this wasn't nearly as difficult as the previous 4 years. Without decent sleep, everything is difficult.
I'm looking forward to progress in apnea treatment so others won't have to go through all this.
Onward and Upward.
Dec 2006 Update
It's been 17 months since my MMA surgery. Left over effects continue to be a small strip of numbness on my lower lip, a bite that doesn't match in the back, and an infrequent clicking in the TMJ (no pain). All of these were expected, accepted, and certainly a small price to pay to resolve chronic sleep deprivation. Eventually I might pursue getting my bite fixed, but only with Dr Powell's approval since I don't want to undo any progress made to my airway.
On Oct 17th, 2006, I went back and had Dr Powell do some soft-tissue work including a modified UPPP (leaving the tonsils), RF to the turbinates, and RF to the base of the tongue. He also inserted small pieces of bone into my nostrils to stiffen them. Since I had no idea how difficult this surgery would be, I arranged to stay the entire week. Surgery was on a Tuesday afternoon with an overnight stay at the Stanford hospital as a precaution. I think it was the exact same room I had last time - #216. I talked to many nice people at the Hospital, some remembered me from last year, and several commented on the blog.
Recovery was very quick. We went antique shopping on Thursday, viewed the Winchester House on Friday, had a nice dinner with Jeff in Los Altos, then flew back home on Saturday. There was no noticable swelling. I could have easily travelled home the day after surgery. The pain was minimal aside from a slight sore throat for about 3 weeks.
An unimpressive picture of the stitches in my soft palate at 2 weeks post-op.
I didn't notice any improvement in my sleep until about a month later. Now, at 2 months, I can definitely say that my sleep has improved. I'm still struggling to get off Ambien but in the last week I've cut the dosage in half and am doing great. The second half of the night is fragmented with lots of tossing and turning but I feel fairly rested. I'm very pleased with this progress. If I can get completely off Ambien I will be a happy camper indeed - and $1500 richer each year.
I would estimate that this final surgery has improved my progress from 70% post MMA, to 90%. My sleep is the best it's been since these problems started in 2001. There are other surgical options, including hyoid suspension, but at this point my sleep is good enough that I'm not considering it. Later I might go for a sleep study and see what the numbers are.
My suggestion for others considering surgery for apnea continues to be to find a good Doctor - one that has many years of experience treating apnea, that does so regularly, and one that will see you through whatever it takes.
Dr. Powell is an incredible Doctor having passion, knowledge and skill that is unsurpassed.
This last year and a half has been an incredible ride. While not the easiest thing in the world, it was all worth it to feel normal. The second greatest thing was meeting so many nice people and making so many new friends - at the Drs office, at the hospital, and other apnea patients. Being a geek, I'm an introvert and have never been much of a people-person, but this experience has profoundly changed me for the better. There's something special about being connected to others through a common mission. I've also always been an unconfident traveller. Now with 10 trips to the Bay area under my belt, I'm much better in this area too. Go ahead, look it up, "unconfident" really is a word.
A special hello to Jeff, Todd, Tom, Bill, Michael, Karen; the entire crew at Dr Powell's office including Marieline and Carol; and the Nurses at the Stanford Hospital.
Merry Christmas and Happy New Year to all.
May 2007 Update
How time flies. It's been 2 years since I first visted Stanford to get this show on the road, and 22 months since surgery. Can't believe it.
Since the last update in December, the biggest thing health-wise has been a kidney stone. Not fun at all, and certainly more pain than MMA surgery. I opted to avoid lithotripsy out of concern for kidney damage and hoped it would pass on its own. The stone moved down to the entrance of my bladder and stuck there leading to a surgical removal.
I mention this non-sleep-related event because an interesting thing occured. My reaction to kidney stone surgery was dominated by a feeling of being unfortunate. Sort of like a car wreck. This is completely different than MMA surgery where I felt very fortunate. I guess the main difference is that my sleep problems became the norm and a solution, of any kind, was a positive. For the kidney stone, I hadn't had time to accept the condition as the base-line, and surgery was just getting me back to normal. It's interesting how our brains work.
I'm still using 5mg of Ambien to get to sleep. A few attempts to stop backfired requiring several days of catch up. I will keep trying. The patent for Ambien ran out in April and it went from $4/pill to .60/pill. You read that right! A bottle of 30 use to cost $120, now $18. This saves me hundreds of dollars per year.
For those of you that read the Sleepnet forums, you've probably noticed I don't post quite as much as I use to. This is mainly due to my focus moving away from solving my sleep problem, back to real life. I try to resist and return to the forum as often as I think about it.
My bite is still edge-on-edge making chewing difficult. I've noticed some clicking and a tiny amount of jaw discomfort on the left side. It's not an issue at this point but I'll keep an eye on it. Having my teeth worked on is definitely a consideration. I'm not sure how well that will work at my age (45), but I might ask Powell what he thinks. The obvious concern is that I don't want to compromise my airway in any way.
I feel very fortunate to have experienced such a large health problem while young, to experience healing, to feel extreme graditude, and to value feeling normal. Most people experience heath problems later, only after they have taken their health for granted for the majority of their life. This experience has definitely changed my outlook.
Well, that's it for now - back to life. Best wishes to all the nice people I've meet on this journey.
Oct 2007 Update
Things are going fine and thanks to all who have written to check up on me. It's fantastic to see all of the new sleep surgery blogs out there shining a spotlight on an otherwise dark corner of our sleep journey.
Not much has changed in the last few months sleep-wise, but I have learned an important thing about recovery of jaw muscles following MMA that I would like to share.
As you might have read above, my jaw acquired a slight clicking sound and even a scary pop every now and then. The pops would occur when I opened my mouth very wide such as a yawn. Thankfully, I yawn MUCH less now than before surgery. There was no pain but the noises were unsettling. These symptoms were gradually getting worse and had me mildly concerned.
Then, I had a molar become sensitive so I headed off to the Dentist. He said the tooth had a slightly exposed root, some wearing of the enable near the gumline, and possibly a tiny cavity - so I had it filled.
After the filling, the tooth was better but still a tad bit sensitive. My natural response to this was to chew more on the other side. After about a month of balanced chewing, jaw clicking and popping went away!
Apparently, I had developed a habit of chewing only on one side and the muscles on that side redeveloped and adapted after surgery much more than the unused side. I can see how this habit developed because early in recovery (8 weeks post-op) one side felt more ready to chew than the other. The more it was used, the better it felt and the more it recovered. The other side got left unused and undeveloped. I doubt this is peculiar to me even though I am somewhat peculiar :).
So, I would say this is something that all MMA victims need to keep an eye on. When beginning to chew, try to use both sides in a balanced way so the muscles redevelop evenly.
If anyone has seen any medical paper dealing with this, please send it to me.
That's all from this side of the tracks. Happy sleeping to all.
3 Year, 36000 Mile Update - Sept 2008
It's hard to believe it's been 3 years since the surgery.
I guess I'm an ole-timer now :)
In Sept 2008 I headed back to Powell for a grand fanale sleep study and to join a meetup of other sleep sugery survivors who meet on the SleepNet forum. The meetup has been in the works for more than a year and it was gonna be the first of its kind.
My study was at Bay Sleep in Menlo Park unlike the other one which was at Stanford. It's not quite as fancy but the Tech did a great job and I liked the electrode paste which didn't require a toxic concoction to remove. No PES either. Sleep didn't go quite as well as it would have at home, but I did finally get to sleep and got a good long stretch. I made sure to get some sleep on my back and my side.
The next day I meet up with Powell for the results.
After that I just killed time by going to Feldman's Book store, checked out the new Tesla electric car dealership, and attempted to find a death certificate for my genealogy research at the Redwood City county clerk. I failed that last task due to parking.
The Meetup with other patients started out on Friday night then we rejoined Saturday. It was great to meet all those people and to connect with others that have been through a similar battle. Check out the pictures of the meetup. It was such a success that we will probably do it yearly.
While in CA, Hurricane Ike slammed into south Texas and headed right for my house. I had no idea what to expect, but thankfully it petered out about 50 miles from my house and we only got scared dogs and a broken shortwave antenna. In spite of all that, my flight made it back without delay, but it was depressing to learn my backup protein bar slipped out of my bag while under the airplane seat. 837 Emails in my inbox - back to work.
I'm not sure I'll do any more updates. I consider this journey complete and this battle as won as it's gonna get, but it will never be forgotten and has changed me forever for the better. Who knows what life has in store for me next.
Best wishes to all.
Here's a small sampling of the Emails I've received over the last 3 years...
Blessed will be the day my CPAP shows up on EBAY!
I am a paramedic and need to be well rested for my job. Good sleep is definitely a necessary luxury!
I hope I can help someone else out there who is considering this life changing decision.
NOW I CANÖ Now I can breathe easily at night. Now I can take a deep breath without chest pain. Now I can go to sleep without any breathing device. Now I can go to sleep and wake up rested. Now I can have dreams during sleep. Now I can sleep without snoring. Now I can take a nap on the beach. Now I can have energy to enjoy my waking hours. Now I can enjoy my breath and my sleep. MY LIFE IS CHANGED FOREVER.Thank you Dr Riley
From Ed in FL
I discovered your blog many months ago and told Hap about it when he was considering the surgery. Since then heís been in touch with you. Your information helped me so much before the surgery, and again yesterday I read your updates to help guide us in the weeks ahead. Hapís three week marker since his surgery his today, and heís doing well. Before the surgery I copied your "Attitude is Our Choice", and Iíve read it many times. Itís been a great help to me, as has ALL the information, photos, x-rays you have shared about your own process of recovery.
Thank you so much, Roger! You have been a tremendous gift in our lives.
Hap wrote: You are at the top of the list of non-family support people. Itís truly an act of kindness to be there for so many others. Thank you, sincerely.
"For the one who sows to his own flesh will from the flesh reap corruption, but the one who sows to the Spirit will from the Spirit reap eternal life. And let us not grow weary of doing good, for in due season we will reap, if we do not give up. So then, as we have opportunity, let us do good to everyone, and especially to those who are of the household of faith" Galatians 6:8-10