Sleepless in Phoenix

One Year Later

2011-01-07T17:18:00.002-07:00

Well I am still living, breathing and sleeping one year after my surgery which took place on January 5, 2010. That date will always be ingrained into my memory. And I do not have a good memory when it comes to names and dates.

My sleep is good...very good. Have good energy levels and my overall health is much better. My upper gum area is still 30%. I apologize for not posting more, but I have been enjoying life to much and actually forgot about my blog for a while.....that is good news.

Please feel free to email me if you have any questions or concerns. If you have been reading this blog and are deciding on having the surgery or had the surgery send me an email.

John

thrasheraz@cox.net

Six Months Since Surgery

2010-06-30T09:55:00.004-07:00

Sorry about the delay in getting back to you all in reporting my progress. It has been just about six months since my MMA surgery. My post-op sleep study was accomplished in April and I received the report (see section below). I just got off the phone with Dr. Li, my surgeon. I received a stern and needed lecture from him.

Let me back up a little first. I sent Dr. Li an email this morning in which I exhibited some concern about my post-op sleep study results. The report from the Stanford Sleep Clinic states, “This study shows obstructive sleep apnea.” “Recommend follow-up in clinic for further assessment and treatment options.” My questions to Dr. Li were pretty much asking, “Did we have success?” Now that I reread my email, that was a pretty dumb question. The point I guess I am trying to get at is: No matter what the numbers say in my sleep studies, the bottom line is how do I feel and how am I sleeping?

How Do I Feel You Ask?

There is no better time than right now to say I am doing remarkably well post MMA surgery and all of the credit goes to Dr. Li. First and foremost, I am sleeping very well. Over the past three weeks, my sleep has improved markedly. I have had many days (I mean nights) in a row where I have slept up to six hours straight without waking up. Even if I wake up two or three times, I still fall right back to sleep. Since surgery, I have not had one incident where I woke up and felt like I needed air or had stopped breathing. I have been waking up in the morning and feeling like I had a good night’s sleep. That had not happened for the past 20 plus years.

Now to an unexpected blessing: Throughout this past year in preparing and planning for this surgery my whole focus was on stopping the sleep apneas and getting a good night sleep. I never really thought about improvements that would occur during exercise, sports and other daily activities. When I used to swim or play basketball, I would always be exhausted after only two minutes of activity. I would stop and as we would say, “I would be sucking air.” I could swim one or maybe two short laps in a pool and even though I would be breathing while I was swimming, I would still need to stop, stand up and take in some air. Basketball was the same thing.

I experienced a short time ago on my first attempt to swim after surgery, that I could go 6, 8 & 10 laps without being tired or needing to stop and gasp for air. My x-rays, shows that my airway before surgery was about the width of a match stick and post surgery about the width of my large finger. I can’t wait for the first opportunity to play full court basketball again. When I exercise now, whether it is walking or lifting weights, I seem to be more willing to do the exercise and to be able to do so for extended periods of time.

I am back to eating about anything I want, however it takes me about twice as long to accomplish this. So I am usually the last one finishing eating, but that’s ok because they say it is healthier to eat slowly and also you eat less when you eat slower. I have been able to keep off most of the 22 lbs. I lost, even though I probably am taking in the same amount of calories. They say sleep apnea causes weight gain and I believe it.

My upper gum area is still about 50% numb. But this numbness is gradually decreasing and I expect this may take another 6 months before it is close to being back to normal. I have not had any pain in at least four months or more….. check my previous blog postings.

Post Op Sleep Study Results

I received my overnight Diagnostic Sleep Study report and just today I talked with one of the sleep clinic doctor regarding the report. Briefly, the doctor stated I still have what they classify as moderate sleep apnea. My numbers are as follows:

Study Areas_____Post Op___Pre Op

Sleep Efficiency____91.4%___75.4%

RDI_____________23_____27

Apnea Index_______1.5_____8.9

Total Apneas_______10_____54

Total Hyponeas_____139____109

REM Periods_______ 6______2

Stage Shifts________93_____208

No. of Awakenings___29______54

It is important to understand that the pre op numbers are not from a diagnostic sleep study. It was a split study with a CPAP. CPAP machines did not work well with me and caused central apneas. So comparing numbers is not a very good analysis of success.

Conclusions

In the words of Dr. Li, “It is not what the numbers say, but in how you feel.” My MMA Surgery was an overwhelming success. I do not need to sleep with a CPAP machine. My overall health has improved greatly. I sleep much better. I “live” much better. I thank God for my health, family, doctors and friends.

A Win is a Win……..

2010-04-26T11:43:00.003-07:00

Insurance Issues

A win is a win even on a technicality. My insurance company has paid everything I believed they should have paid. However, they only paid this “just” amount because of a technicality according to their letter. As I have previously written, I was blindsided by two insurance company policies that I was unaware of and which resulted in my insurance company underpaying my surgeon’s medical billing by $12,000.

These two insurance company coverage policies are:

“Multiple and bilateral surgical procedures" which means if they perform more than one procedure or surgery at the same time then one will be billed as the primary and will be covered at 100%. All other procedures will be billed as secondary and will be covered at 50%. In my MMA surgery that means that the upper jaw surgery was covered at 100%; the lower jaw surgery was covered at 50%; the Septoplasty was covered at 50%; and the arch bar placement was covered at 50%.

"Primary billed procedure and secondary (minor) billed procedure" which means the insurance company can determine that certain procedures performed during surgery that are billed separately, such as the Septoplasty and arch bar placement can be placed into the primary billed procedure such as one of the jaw surgeries. Once they do this they then only pay for the primary procedure and in effect disallow all of the secondary charges.

My approach to these two issues: I recommend fighting these coverage policies separately. I was successful on getting my insurance company to keep each of the four billed procedures as separate procedures and pay on them accordingly; thus abandoning this "Primary billed procedure and secondary (minor) billed procedure" policy. This is when they brought up the “multiple and bilateral surgical procedures" policy to only pay 50% for the second, third and fourth procedures. To make a long story short, I then wrote a letter directly to the President of my insurance company in which I argued against this “Multiple and bilateral surgical procedures."

I only won this battle and got them to ignore this policy because they failed to advise me of this policy in my pre-surgery authorization letter. Therefore they covered each of the four procedures as separate procedures. Their letter specifically said that this policy still exists and the only reason they were covering everything at 100% was because in my preauthorization letter they failed to advise me of this procedure.

Sleep Issues

Now on to my sleep….. My sleep is improving. Just last night I sleep all night from 10:30 pm to 5:00 am with just one awakening (and just for a few minutes). Prior to that I had been waking up about one to three times per night (after 2:00 am), but I then would fall back to sleep. I am certainly more refreshed when I wake up and have much more energy during the day. I still get pretty tired by 6-7 pm, but I still think and act like I am only a 30 years old during the day so I should expect to be tired at age 60. Everyone states that your body systems will take up to a year to learn normal sleep patterns. After all, I was not sleeping normally for over 30 years.

More Good News

Some further good news, I had some general blood tests taken two weeks ago and the results were very impressive. My cholesterol and testosterone levels have greatly improved and that is without any medications. For 20 plus years my testosterone levels have been very low and have not responded to various medications. Now they are in the normal range without any medications. My cholesterol levels are in the high normal range and again without medications. Prior to surgery I was able to keep them in the normal range only by medications. My antibodies still need major improvement. Let’s see how they look after 9-12 months of deep sleep. I will keep you posted.

Post Op Sleep Study

I go for a post operation diagnostic sleep study at Stanford on April 29. It will be exciting to see how my obstructive apneas have decreased and what the other numbers show. I will let you all know. Thanks for being interested in my progress.

Sleep is Great...Insurance not so Great

2010-03-26T09:35:00.005-07:00

Sleep is Great

I am going to bed, falling asleep and sleeping for seven hours with only one or two awakenings. I am a light sleeper and I attribute these awakenings to that and I am not experiencing any breathing problems. I am waking up somewhat refreshed and have plenty of energize throughout the day. In the evening I am tired, but I am 60+ and I have to say I am making up for lost time so I have a lot going during the day.

I still have some swelling and numbness in my upper gum area, but no pain anywhere. I am still down 22 lbs which is great and eating is still a chore. So be it.

Dr. Li's office advises that most patients get a post op sleep study at three months, so I need to get going on setting that up at Stanford.

Insurance not so Great

I thought it has been only two weeks since my last entry, but it has been one month. Sorry about that. I have been totally involved in corresponding with my insurance company. They have thrown out two policies at me which have reduced my reimbursements by as much as $15,000. You should all be aware of these two policies if you are considering MMA Surgery.

They are:
"Multiple and bilateral surgical procedures"
"Primary billed procedure and secondary (minor) billed procedure"

With both of these insurance policies and reimbursement procedures the insurance company saves many dollars. I was not advised of either of these policies when I was talking with the customer service representatives prior to surgery. I was advised in the pre-authorization letter that the two minor procedures, the septoplasty and arch bars would be considered incidental and part of the primary procedure which is the Maxillary Osteotomy and Mandibular Osteotomy.

The bottom line was my insurance company wanted to pay for the upper jaw advancement at full benefits and the lower jaw advancement at half benefits because they were performed at the same time, even though the work and time was equal for both and each required separate incisions.

I am still battling these issues, but I am fighting a multi-billion dollar business. So look into these two issues and contact me with any questions.

I will keep you posted

I can't think of a title......

2010-02-26T16:45:00.007-07:00

Sorry for the delay in this update. It has been seven plus weeks since my MMA Surgery. No news is good news. Anyways I am still sleeping well. I have no breathing interruptions. Nothing has really changed as far as my sleeping. It has been “clear sailing”…..I mean sleeping. I am still waking up early, but I have done that for forty years or more.

I am able to open my mouth wider now (about 27 mm), but not wide enough to accommodate a Big Mac or other medium to large food sources. No complaints. My upper gums are still somewhat numb, but my upper jaws are pretty normal. I am able to chew soft foods, but salads are difficult. There has not been any pain in the past week or two. In ten days I go to my dentist and get my teeth cleaned and my tooth put back in. My gums still seem to get more swollen after each meal.

The swelling in my gums seems to affect my speech quite a bit. I am able to speak as much as needed, but I do sound like a nerd or someone that has a speech impediment. Again no complaints.

You have not heard much from me about my looks. That is because I did not really care. My sleep was so much more important to me. Well, I do not notice much difference. I think I look somewhat different (and not for the better) in the face, but to me it is because I lost 22 lbs. and my cheeks and surrounding areas show the lost of weight. The good news is my stomach also reflects the loss of weight also. My Greek mother-in-law is visiting and thinks my nose looks bigger and in her words “better”. I think that’s because Greeks have bigger noses……so I guess I am more Greek to her. “Opa!!!!!

I am having some serious problems with my insurance company. I was planning on only having to pay approximately $6,000 (my yearly catastrophic limit). It now may be closer to $18,000. But leave it up to the insurance companies to have some small print (which I missed) which further reduces my coverage. I will explain further in my next blog…..don’t forget to remind me.

Thanks for your prayers. They were answered. Thank God.

Six Weeks Since Surgery ... Things Looking Good

2010-02-16T14:55:00.003-07:00

The surgery is behind me and so is the flu and a bronchial infection. Now I can start evaluating my sleep and the results of my surgery. I think I have had only 2-4 days in the last six weeks that I have not been sick. Today is one of them and hopefully many more to come.

I am looking forward to getting back to exercising which I have not done in six weeks. I am sure that half of the 22 lbs I have lost is muscle. I look forward to eating and eating the proper food. I am going to try and stay at my current weight of 185 by eating healthy and exercising.

To my sleep. I can sleep on my side or back. I fall asleep within 10-20 minutes and I wake up 2-4 times during the night. I have no breathing problems. I never remember having such an open breathing passage way through my nose. I learned not to breathe through my mouth while on a CPAP with nose mask. My wife has not heard me snore and I have not woken up hearing myself snore. I wake up in the morning as if someone gave me a cup of coffee about 5 minutes before I woke up. This is the first refreshed feeling I have felt in 20 years. I am still somewhat tired, but who wouldn't be tired after being sick and having major surgery.

On to pain, no pain, swelling and numbness. I have very little pain and it is only on a few occasions. It is mainly in the back of the lower jaw and sometimes radiates to my ears. It only last 2-4 seconds and it happens 3-4 times a day. Actually it seems to only happen 1-2 times a day now. There is some numbness in my upper gum area. I noticed that when I started flossing a few days ago. No real numbness in chin, face or nose. My gum area also feels like it is swollen a bit.

It has been one week since my arch bars were removed. Eating has been slow and tedious, but effective. I am eating eggs, toast, mash potatoes, shredded chicken and beef, cut up spaghetti and my homemade meatballs. When I chew, I have to do it very delicately, since there is some pain when chewing, but it seems to be getting less and less as I chew more and more. I am not even attempting salad, bacon, pizza, nuts, etc.

Dr. Li says I can go see a dentist for a professional cleaning (and have my tooth put back in) in 30 days (from acrh bar removal). Thank you again for your prayers.

Free at Last! Free at Last! Thank God......

2010-02-09T09:34:00.003-07:00

There are no better words to describe my feelings than the words spoken by Martin Luther King in his "I Have a Dream" speech. Yesterday Dr. Kasey Li removed my arch bars. I feel like I have to learn again how to eat and speak.

After four to six shots (I stopped counting....I hate going to the Dentist), my face felt like it was the size of an exercise ball. He yanked.... excuse me extracted out the six to eight (I also stopped counting) wires holding the arch bars in place. These wires anchor in the arch bars around my teeth. Now that I think about it, it felt like he was pulling an iron anchor out of my mouth. It may sound like I am complaining, I am not, but I think I feared the arch bar removal more than the surgery itself. Let me say right here and now that Dr. Li did an excellent job and even though I am a "baby" (this is not the place to mention I am an ex-Marine) when it comes to repairs to my teeth after it was all done it was not a big deal..... no real pain.

Now that I am free of the arch bars and bands that held my teeth and jaws closed for 34 days, 8 hours and 23 minutes (but who's counting) I have to pace myself very carefully. I understand from other MMA surgery patients and from my own inadvertently bite of something that it can be quite painful if you get too aggressive on eating or talking too much. The pain that occurs with a too hard of a bite or too much talking is hard to describe. I am not sure whether it is jaw bone or jaw muscle pain, but it originates at the back lower jaw area (where it the lower jaw was cut/broke apart and screwed back together).

I have decided that I will have to work slowly back into the chewing and talking routines. I can tell you right now, if one has to be drastically reduced it will be the talking, because this 6' frame is almost down to 180 lbs. and I have seen too many food commercial (especially the Superbowl ones) to hold back much longer.

Enough of the downside. I really needed to lose some weight. My goal........ to start eating only the good things. I am actually craving a salad, but that is probably 3 weeks away.

Now that my flu, cold or bronchial infection is losing its hold on me I plan on:

1.) resting allot; 2.) eating/drinking well; 3.) exercising; and 4.) thanking the Lord and all of you for your prayers.

Ohhhhhh My Sleep, I almost forgot about that, (that sounds good, just forgetting about it) my sleep is back on track. It was difficult sleeping or attempting to sleep when I had a fever, cough and sinus congestion. Now that that has diminished, I expect a long gradual improvement. Last night I slept for four hours straight and then on an off till seven in the morning. But the most important thing is I woke up and did not feel bad. I actually felt somewhat rested. Just give me a few more days (maybe weeks) like this and my wife will have to keep me from mountain biking in the hills behind our house!

When we arrived home from Palo Alto last night our fantastic and loving daughters and families had a bouquet of roses (and a beautiful note) waiting for us when we opened the door. I am not a flower person, but I am a father that loves his family and this meant allot to both of us. My wife deserves these flowers and much more for all she has endured before, during and after the surgery.

The Good, The Bad and The Ugly….Part II

2010-02-05T18:54:00.002-07:00

It has been a full month since my surgery. Many MMA surgery bloggers report that the time flies by. Unfortunately I cannot say that. This past week has been pretty tough. It has been a week since my last blog entry. You will see why in a minute.

The Good

My recovery from surgery has been going well but I believe it has likely been hampered to some degree by my illnesses. I have very little pain and numbness due to the surgery. I am able to sleep on my back without any breathing problems. My sleep is gradually improving.

My arch bars come off in three days….Haaarahhhh. We are both flying over to San Jose on Monday for just the day. It is just a 10 minute procedure done in Dr. Li’s office. Mary is taking very good care of me.

The Bad

Tuesday and Wednesday nights were the worst nights I have had since surgery. For that matter, I think they were the worst nights I have ever experienced, including CPAP usage and non-usage. The longest period of sleep I obtained was no more than 10-15 minutes and you are not going to get even close to deep restorative sleep in that short span of time. I was coughing every 2-3 minutes all night long.

The Ugly

I apparently caught the flu or a severe cold this past Sunday or Monday. I had a fever up to 101 and have been constantly chilled 24/7. My sinuses are clogged and I have the worst cough I have ever had in my entire life. My stomach feels bloated and very upset and this has not gone away even for just an hour or two.

I initially started with an antibiotic thinking this was a sinus infection. After two days, I got worse. Dr. Li informed me that I very likely did not have a sinus infection since I had a fever and was coughing. I immediately went to my primary care doctor. Can you believe I called my doctor’s office at 8:00 a.m. on Thursday and I was in his office at 9:30 a.m.? He believes I have some sort of a bronchial infection. He ordered chest x-rays just to be sure pneumonia was not setting in.

He placed me on a new antibiotic (it is a smaller pill and easier to take); gave me two shots in the cheeks (not the ones that Dr. Li worked on). One was a strong antibiotic and the other was an anti-inflammatory injection. Another record……These two shots hurt the worst than I have ever experienced. And remember, I had a ton of shots when I was in the Marines and throughout my life. I was willing to take whatever they had to make me feel better. It has been a day and a half and my cheeks still hurt.

However, the most significant thing I was given, which I believe will lead to my recovery is an oral prescription medicine called “Promethazine with Codeine”. This is a cough suppressant which also causes drowsiness. I do not mind that side effect at all. It actual helped me sleep last night. I am doing better today. I really needed that sleep last night. But I still feel pretty lousy. I have not been able to eat much. My stomach feels bloated and upset all the time. Hopefully in one or two more days, I will feel better. Every time I need to take a pill Mary removes my front bands, I take the pill and then she puts the bands back on.

I feel like my body is an open petri dish. With my immune system in shambles and my body recovering from the surgery it seems like I catch whatever ailment is near me. Well, give me a couple more days and I should be doing better. Just having the arch bars removed will be a giant step forward.

Ahhhhhhhh Sllllleeeeeeeeeeep

2010-01-29T19:46:00.002-07:00

Last night I slept from 10:30 pm - 3:00 am and then again from 3:00 am - 7:00 am. I slept like a baby. Very peaceful undisturbed sleep. I still did not feel that great when I woke up and got out of bed. But about 2:00 pm in the afternoon, I thought I was in heaven. I felt great, energetic, happy and many other wonderful feelings. This was the best I have felt in 15-20 years. I guess I gained a little on my huge sleep deprivation debt. Thank God.

3 Weeks plus ....... "Steady As She Goes"

2010-01-28T10:13:00.005-07:00

Well this is a milestone. I am counting by weeks now rather than days. My sleeping is slllllloooowwwwwllllllyyyyyyy improving. I am falling asleep quicker now, 15-30 minutes. I awake 2-3 times and usually fall back to sleep fairly soon. Heck, that is probably better than a lot of 60 year olds. I have had only one incident of waking up gaging for air in the past two weeks. I am still recovering from surgery; still have some anxiety and stress; and my body is still learning how to sleep. So no problem as far as I am concerned.

I have been reading some older blogs from other MMA patients and comparing where I am today compared to where they were at three weeks. Thank God, I am doing as well if not better. With my bands on my archbars still keeping my teeth completely closed, I find myself clenching my jaws and putting undo tension in my jaws. So I have to remind myself often to relax the jaws and mouth, especially at night when I go to bed.

Thanks Katherine (my daughter) for reminding me to update this blog. I love you.

My energy level is fairly good. I do not get sleepy very often in the afternoon or evening. Only one nap in the past week. I am doing my taxes now, so I try to stay pretty focused. My focus is still a problem. I hope it will improve as my sleep improves. Once I start getting more deep sleep; this will reduce the very deep deficit I have built up over the past 15-20 years.

I haven't mentioned pain or numbness because there is very little and it has been that way since day 6 or 7. I have been having long dreams almost every night. I forgot what dreams were. I have started to develop some pressure buildup in my ears with some slight popping. But what the heck my head has been through a lot over the past month.

My wife has not only been helping me tremendously with my food prep and care, but yesterday went out with me on a new investigation. I wrote down questions feverishly as she asked questions of her own. It went well and the new client understood my situation completely. He was just assaulted and had a bandaged face.

Day 17 …. Sleep is Improving…Slowly

2010-01-22T20:03:00.003-07:00

I am still having trouble getting to sleep…. Not a big deal, we all have trouble getting to sleep. However last night after waking up once, I then fell asleep and stayed asleep for 5 plus hours. That is a miracle. I still don’t know where my CPAP machine is and I don’t care.

On to more good things….. I have little to no jaw pain. I have no numbness anywhere. I am not on medication. Unlike many MMA surgery patients (as reported on their blogs), I have little to no sinus congestion. And remember, I was suffering with chronic sinus infections for years prior to my surgery.

Many MMA surgery patients report that the movement of the jaws forward also produce a stretching of the nose (also flattening). This, they and I both report, allows for the nose to be stiffer and less prone to collapsing when inhaling. That is another benefit of this surgery.

I am still not experiencing that refreshed feeling when I wake up in the morning. It has been so long since I have experienced that, that I am wondering if that feeling really exists. I do have more energy, not a lot but some. I do not seem to need naps anymore. And come 9 -10 pm at night I do not seem to have to drag myself to bed.

Cleaning my teeth is still a chore, more like a battle. I can’t open my teeth more than a quarter inch and that is difficult to do. I have 4-5 bands roped around metal braces (arch bars) that block much of my teeth surface. My lips are so sensitive from the arch bars rubbing on them that when brushing or using the water pick they become the pain center for pain.

I understand why they say we eat way too much in America. For the past one to two weeks I have been eating about 25-30% of the calories that I was eating pre-surgery and I am surviving. Granted, I am not doing as much physically but that is still a big decrease in calorie consumption. My stomach feels full most of the time and only growls in the early morning when first getting up. I am trying to push the calories and protein in though. I do not want to do anything to disturb the healing process.

From reading other blogs, I noticed many MMA surgery patients were opening their teeth and jaws to accommodate ground up foods at weeks two and three. That sounds good but I think I will sacrifice the food cravings for less jaw movement and faster/stronger healing. Dr. Li advised me that the reason he loosened my bands at two weeks was for patient comfort and not freedom to eat more things.

One last comment for today. I have started to listen to music again with some quality headphones (same ones I used before surgery). I am noticing that I am hearing many many more of the words from the songs. These are the same songs from the 50’s and 60’s that I listened to pre-surgery. I guess this goes to prove that when you suffer from sleep apnea and sleep deprivation that your focus and concentration levels are very poor. Just another benefit of fixing something that was broken.

Day 14….Home at Last, Home at Last

2010-01-20T11:28:00.003-07:00

Tuesday Night (Jan. 19th): It is good to be home. I am thinking being home will lead to better sleep. Last night I only woke up twice and once was to my alarm going off to take my antibiotics. I only have one day left of the meds. For those of you new to my blog, I came down with some unknown aliment 3 days out of surgery and we decided to take an antibiotic just to be careful.

Medication and Pain

I am not on any other medications. I have read some blogs where MMA surgery patients went on sleeping pills. I did that for some time one to two years pre-surgery and do not plan on any post surgery sleeping meds. My swelling has been very minimal the past 7 days. It is hard to tell if there is much swelling around my upper and lower teeth because of the arch bars.

I have to say that the pain I have experienced from the surgery has been minimal and the meds and ice took care of it quite well. I believe I was off pain meds all together after eight days and then I was only on them for my sore throat from my unknown aliment. I am still applying ice 3-4 times a day. I am not sure if that is just a security blanket for me or whether I really need it. I figure if there is any residual swelling it will help with that.

Departing Appointment

At my departing appointment with Dr. Li, x-rays were taken and he loosened my rubber bands slightly. Now my teeth still remain closed, but I can open them maybe a quarter inch at best. I thought they would open without any effort so I could start slugging down soft foods, but that is not the case. I can feel less pressure on my teeth being held shut which is a good thing and my facial expressions I think, look more relaxed. Even if my teeth opened easily to ¼ inch, I doubt I would try squeezing in soft foods.

Frankly I am a little nervous about moving my teeth and jaws too much too early. Dr. Li stated that the loosening of the bands to a quarter inch is done not for food consumption but for the patient’s comfort only. So it sounds to me it is best to keep them shut as much as possible. Since I am trying to obtain the best results and my jaw bones were somewhat thin, I have no problem continuing with fluid meals for the next three weeks.

Dr. Li’s office provided me with copies (glossy 8x10s) of my before and after profile of my jaws and airway opening. My throat opening now appears to be about the width size of one of my fingers where before you could barely see an opening… maybe about the size of a match stick. Also, the opening coming out of my nose down to the airway looks like it has increase slightly.
I may be showing off these photos more than my six grandchildren’s photos……. I wish they made pocket photo sizes.

Cleaning of Teeth

Dr. Li remarked that I need to get busy on cleaning my teeth so I am ready to break out the water pick and baby toothbrush which I have not yet used. I have strictly been rinsing with salt water. I am actually contemplating going to my dentist and let his expert hands clean my teeth good with a gentle water pick. I don’t know how they expect to get in between my teeth and clean anything.

That will probably be my first question emailed back to Palo Alto and Dr. Li.

Sleep Quality

A few nights ago I had a terrible night’s sleep and trouble trying to get to sleep. My nose and airway did not seem blocked but my lungs did not seem to be getting enough oxygen. I tried everything. I learned from Dr. Li that it was probably anxiety and I needed to relax and let the sleep come naturally in due course.

Eating, Eating, and Eating

I sure miss eating potatoes chips and hamburgers and pizzas and…… I find myself watching food commercials now where before I never watched them. I would fast forward by them with my TIVO. I have seen some pretty nice roadside bulletin boards too…. Those hamburgers look bigger than life!

My main substances so far have been Ensure, yogurt, apple juice, cranberry pomegranate juice, canned peaches, Cold Stone milkshakes, In and Out Burger milkshakes, protein powder, milk, both regular and chocolate, Gatorade, hot tea, tomato soup, cream of chicken and Lipton’s noodle soup. For liquid we are using chicken and beef broth. I am going to try cream of wheat for breakfast. Now that I am home, we will be making some lentil and chicken soups.

I have been through a variety of baby foods such as green beans, chicken dinner, banana, and pears.

Foods that have not worked because of taste or would not liquefy: donuts, oatmeal, cheerios, and noodles.

Remember my food has to go in the side of my mouth and through the missing tooth. Maybe I will experiment with my new ¼ open in front, but don’t count on it.

I am currently down 18 lbs, but remember I put on 8 lbs preparing for my upcoming surgery and I was very easily 15 lbs overweight. I will be sure to watch my nutrition, but I won’t be worrying about weight loss unless I start getting weak. I plan on walking as much as possible. I also plan to get back to the everyday dealings including seeing and playing with my grandchildren. I will have to make sure I don’t get any head butts to the jaw!

Other Blogs

I just started re-reading other blogs to see how they were doing at 2 weeks. I can’t believe it…. Roger ate a ½ meat patty at one week. I may have to call him and see how that was done. I do have to remind myself that I am 60 and these youngsters were in their 30 and 40’s.

Day 12.......It's Official, we leave Monday

2010-01-17T18:56:00.004-07:00

I have been communicating with Dr. Li over the weekend and we believe he will release me Monday. We will be hitting the road to return to Phoenix after our 9:15 am Monday morning appointment with Dr. Li. He will be loosening my bands so that I can open my mouth about a quarter of an inch. It has been 12 days with my teeth banded tightly together.

Update on my sleep:

I have not laid eyes on my CPAP since I packed it up the morning of the surgery. I am not sure if I even know where it is!

I am having a little trouble falling asleep and staying asleep. It took me about 2-3 hours to get asleep last night..... I felt like I was not getting enough air down my airway and oxygen in my lungs. After doing a hundred different things to try and rectify it, I just laid down and went to sleep......exhaustion, I think.

Asking Dr. Li what this episode was all about, he simply stated, anxiety!, being too compulsive and the fact that my jaw is banded shut. I like to be in control and I cannot be in control at this point with my jaw banded tightly shut. So, instead of doing a "hundred different things", I need to just relax and let go...let sleep come as it will. But, wait to hear what I have to say next........

For the first time in 15 years, I woke up (at about 3 am this morning) and felt wonderful..... I felt rested. I wanted to get out of bed, grab my wife and go dancing somewhere. With my mouth banned shut, I could not get that message across to my wife. But bless her heart, she has not slept much more than me over the past two weeks.

I went back to sleep and woke up unrested, and with some jaw pain and a headache. But I still remembered that great rested feeling that I experienced a few hours earlier, even though it was short lived......... I will be patient.

Update on my surgery:

Slight jaw pain that icing seems to take care of.

Arch bars that are wired to my teeth and hold the rubber bands are uncomfortable but bearable.

Food has been a challenge. I have to make sure I get enough protein and calories. I have to make sure I get enough fluids. I have to make sure I eat yogurt because I am still taking an antibiotic (because of my unknown aliment). I use to be a fussy eater, well no longer. I just ate green bean baby food mixed with beef broth. I also am just finishing up a shake made with whole milk, strawberry yogurt and protein mix. I am craving a pepperoni pizza with beer chaser.

I stopped using the large syringes the hospital issued to me to administer medicines and to eat liquids. I have found the reusable ketchup bottles you can buy at Target and Bed Bath and Beyond are much more efficient for delivery blended strained food and drink. I can be a little more forceful since I have a missing tooth on the right lower jaw.

I still have an on again off again headache that could be related to a lot of things such as caffeine withdrawal, tension from having my teeth closed completely with no jaw movement, and my unknown aliment.

John

Day Ten .....Great News

2010-01-15T11:21:00.006-07:00

Unknown Aliment...... Seems to be Dissipating

My unknown aliment is going away. When I woke up this morning I was feeling much better. Thank God. I can now get my focus back on my recovery from my MMA.

One last thing on this unknown aliment ..... I wondering if my throat pain, elevated temperature and over all sick feeling I had for 4-5 days could be attributable to the Children's Ibuprofen I started taking six days ago. Could I have been allergic to this over the counter medicine? I always struggled taking it. It burned my throat even after being watered down. I stopped taking it last night. Well anyways, Dr. Li says it is a possibility but he still bets on a virus.

Recovery from Surgery....... Update

I have had a few good nights of sleep (prior to my aliment). It was wonderful sleep. I did not want to be woken up. I have not had this experience in the past several nights, but now that my aliment is dissipating, I expect that to return. I am sleeping flat on my back, no wedge pillow keeping my head elevated. My wife says I neither snore nor breathe through my mouth. I have not yet experience that refreshed feeling but I will be patient.

I was down about 10 lbs., however now I am only down 7 lbs. I guess I should not over eat as much as I did pre-surgery. My last over the counter pain meds were taken yesterday evening. I likely could have been off them 2-3 days ago, but the symptoms from the unknown aliment kept me taking them. Now I just continue with the icing which I have been very faithful applying 3-5 times daily. Even though there is not much pain at the jaws, I figure the ice helps any residual swelling. My wife says she thinks the swelling in the face/jaw area is down 75-80%.

We just set an appointment with Dr. Li for Monday morning at 9:15 am. Hopefully I will be feeling even better because he won't release me back to Phoenix unless I have been feeling good for a couple of days. He will check out my jaws, nose and airway. If everything looks good there, I anticipate him removing some of my rubber bands holding my teeth completely shut. I expect he will adjust the rubber bands so that I will be able to open my teeth maybe a quarter of an inch.

If given the go ahead we will pack up and head to Phoenix and our 735 mile road trip. I won't be looking for any In and Out Burger stands like I usually do. Maybe I will.... I have never tried their milkshakes.

From the Other Side, John

Day Nine....No Changes

2010-01-14T14:38:00.003-07:00

My sleep was fair with some dreaming...... that's good.

No problems with jaw and surgery....... that's good.

My sore throat and temperature, the same...... that's not good.

My love for all of you and the Lord, the same...... that's good.

Day 8……. The Results Are Not In

2010-01-13T19:54:00.001-07:00

Unknown Ailment

My day started off as the last three days have started off. Did not sleep well. Woke up in the middle of the night with a 100-101 temperature range. Felt terrible with flu-like sickness, but no body aches. Jaw pain 1-2. Headache pain is 4-6. Throat pain, especially when swallowing is 7-8. I always thought that when you were sick and rested, you felt better when you woke up….Not so here.

In the middle of the night I could not sleep and it actually felt better to sit up for awhile. We searched WebMD and read up on flu symptoms and strep throat symptoms (as I previously reported) and I met many of the strep throat symptoms and few of the flu symptoms. I don’t know if that is good or bad.

Armed with my symptoms, we met with Dr. Li at 9:00 today and discussed the current problem. He looked down my nose into my throat with a video scope. He said the nose, mouth and throat are in pristine condition with no signs of infection. My recovery from his surgery is still progressing flawlessly. If it was not for this unknown medical condition, I likely would be dancing in the street and more importantly on my knees thanking God (I am still doing that).

Dr. Li thinks it is either the flu, strep throat, or some type of cold bug. To check one more thing, he ordered a chest x-ray which we did immediately at another location. It came back negative for pneumonia so again I am thankful. He also gave me a prescription for an antibiotic which may or may not help. I well be taking amoxicillin every 8 hours. If I have a bacterial infection it will reduce the time I am contagious so that is good.

So I am into my third or fourth day of this Unknown aliment. Everyone is telling me 5-7 days recovery. We just picked up some Children’s Tylenol, so I am alternating this with the Children’s Ibuprofen every 5 hours.

Recovery from MMA Surgery

This is Day 8. It’s been just over a week since my surgery. Everything has gone well. As mentioned above a scope of the area looks great. Pain is very minimal. We will know on Monday if my rubber bands will be loosened to a quarter inch opening or so. My menu of food intake should change since with no opening between the teeth I am currently limited to liquids strained to illuminate any small solids.

A funny story……. During surgery, one of my side tooth’s (a dental implant tooth) fell out from its anchored metal root. An easy fix once my jaw gets back in shape in hopefully 3 months. Well I have found that drinking these yogurt protein shakes and other blended-strained soups that are someone thick go done much easier from my right side of my mouth (where my tooth is missing). Thank you Lord.

I am still icing the chin and jaws 4-5 times a day for 30 minutes. I have lost 10 lbs without trying. Half is probably due to the ailment. I have stopped using the wedge pillow. I lie flat on my back with my normal pillow. That is a good reflection on my airway opening and stretching of my soft pallet.

I doubt I will have much more to report on my MMA surgery recovery until I can get this Unknown ailment eradicated.

Recovering After MMA Surgery… The Good, the Bad, and the Ugly

2010-01-13T09:51:00.002-07:00

Introduction

I want to get caught up to real time reporting, so I will discuss Days 3-7 of recovery here and now. Then on my next posting you will be hearing the current situation, status and condition.

We are staying at a Marriot Residence Inn just 5 miles from the Hospital and 6 miles from Dr. Li’s office. These Residence Inns are fantastic. We have a kitchen, living area and bedroom all in one with plenty of space. Mary has complimented the room and its design several times….. That’s a good sign.

I have to say, my sleep, my surgery pain, my numbness (or lack of numbness), energy level and feeling rested have not changed much in the past 5 days (except where noted below).

The refrigerator is full of Gatorade, Ensure, apple juice, cranberry-pomegranate juice, prune juice (it worked), beef & chicken broth, turkey gravy, and whole milk (my wife hasn’t allowed me to drink whole milk in the last 20 years – she has weaned me down to no-fat milk).

I came home to the hotel with three medications. I had a prescription filled for Hydrocodone (pain killer) and Cephalexin (antibiotic). I also bought Children’s Liquid Ibuprofen. It is very difficult to find liquid over the counter pain medication for adults.

The Good

My wife is fantastic. She is an angel provided by God. I know I was difficult to live with before surgery and all the stress, but she has stood by me and taken care of me just like I was one of her grandchildren (and we all know how loving and caring she is with the grand children (we have six and two on the way).

I have to make a comment about sleep, since after all that is why I am here and you are reading this. From day one out of surgery, I have noticed a dramatic change in my sleep. I fall asleep immediately into a deep sleep and stay in that deep sleep throughout the night until woken up. I have long, detailed dreams. It has been a peaceful sleep. I wake up and say to myself, no, no I want to go back to sleep. I missed this sleep so much. That being said, I have to say I do not wake up refreshed and energetic. That will come. But it is definitely a good start.

The Pain, the Pain……I am blessed again. My wife and I and by the way we communicate by hand signals, white board and a steno pad (thanks Sharon) have developed three categories of where pain comes from. The jaws, the headaches, and the throat. Arch bars have not bothered me at all…another good news.

My pain levels have ranged from the beginning (Day 1) to now (Day 8) as:
Jaws: 3-5
Headaches: 3-6
Throat: 2-8

Basically my jaw pain was minimal and I went off the Hydrocodone by day six. I used the children’s ibuprofen to take care of the headaches. I thought this might be caffeine withdrawal but I have been having a morning half of cup of coffee (from a regular ceramic coffee cup) for the past four mornings and they have not gotten better (see The Ugly).

The throat is a major issue (see The Ugly). No pain meds seem to help.

Have you noticed there is a lot of good!

The Bad

Getting that peaceful deep sleep is wonderful, but I am not refreshed. I have described it like being at the gas pump and filling the tank. I keep filling it (with good sleep) and yet it never gets full. The gas pump keeps pumping but it is a bottomless tank (right now).

I can’t eat anything at the huge buffet breakfast they have every morning nor anything at the evening snack/dinner/happy hour (One night I did take two sips of a light beer).
The Children’s Liquid Ibuprofen is the worst tasting medicine I have ever taken. It also burns as you swallow it down.

Dr. Li informed us that he wants to keep my teeth wired (rubber banded) closed for two weeks rather than the normal one week. After one week he usually loosens the rubber bands from completely closed to open about a quarter inch. He said he wants the complete closure for an extra week because my jaw bones were somewhat thin. I won’t (or maybe I will) tell Dr. Li I am willing to keep them completely closed for three weeks if that means a stronger bond and a better outcome. As all of you post and MMA patients know, that means just liquids no soft foods into the mouth and on to the stomach.

The Ugly

I have been having a temperature on and off for the past several days ranging from 100 to 102. It appears and disappears throughout the day and night. I have to say I feel terrible most of the time. My sleep is very fragmented because of my temperature and feeling lousy. When I go to swallow the pain is up to 8 &9 on the pain scale. We saw Dr. Li on Monday (Day 7) and I was not doing too bad at the time. He said to call him anytime and he will see me on Wednesday (Day 9).

Well like it always is when you go to the doctor, I started feeling a lot worst that evening and the next day. I emailed him and he called back. I gave him the low down and he thinks it may be the flu. Mary researched on WebMD. My symptoms match strep throat and not the flu. I have had both the H1N1 and regular flu shots and I have not had the flu in over 10 years.

I have to tell you I feel miserable so keep up the prayers. I see Dr. Li this morning. I will post after the appointment.

God Bless you all,

John

Day Two and Three After MMA Surgery

2010-01-12T21:05:00.003-07:00

Introduction

Before I get started on my complaint, I want to update you on how I am feeling from my surgery. No good sleep for 15 years; add major surgery to your jaw which is like trying to stop a speeding truck with your face; and no sleep at all for the past 36 hours; I have to say: I am very… very… very tired, but I am excited about my future. The big news is I have feeling and little to no numbness in my upper and lower lips; my chin; my nose; my upper and lower jaws; and the roof of my mouth.

After reading many blogs where patients state that at weeks four and five they still have numbness, I find this outcome of mine to be a miracle. Even Dr. Li during our pre-surgery consultation told me I could even have permanent numbness. In showing my wife that I could feel, I kept pinching my face all over and she got the message.

The professionals at Stanford really know their job, especially when it comes to pain control and patient comfort. So I can honestly say that as soon as the pain reached 3 or 4 on a scale of 10 (0-no pain; 4-pain becoming intolerable; 10-the worst pain) they took care of me. From leaving the OR and up to this point, I never had pain worst than 4, maybe 5. The worst part of the pain control was being woken up at 2 am 4 am etc. to check my pain level and to administer oral pain meds.

After this surgery you immediately start to have deep sleep where you are really out. I wish I could have been given IV pain meds and left to sleep for about two weeks.

Day Two at Stanford Hospital Regular Room

Well they moved me out of the ICU, my pre-med and surgery training apparently over. I remember they kept me in the same bed and it was motorized. The nurse just drove it along the hallways like he had done it 100’s of times. I want to say stop by the nearest Dunkin Donuts but my mouth was wired shut with rubber bands. The only other thing I was interested in was sleep.

We arrived at the regular hospital room and the first thing I noticed was I’m going to have to share a room, but I’m getting the window bed. The patient in the room was a very loud, boisterous gentleman in his late 50’s or 60’s. He did not seem to realize he was in a hospital as he swore and complained vigorously to his daughter and wife. They realized they were in a hospital and now had a patient roommate but he did not seem concerned, no matter how much they tried to settle him down. I have to say this was the first time in over 30 years that I heard someone use the N-word. He apparently was upset with one of his nurses.

However, this is not what really bothered me. His daughter was coughing and sneezing non-stop and touching everything in the room. The father/patient was coughing also, but he’s a patient so I have to respect that. The daughter did wear a mask; however it did not fit over her nose and mouth (she had a very large face). Most of the time she had it over her mouth only and regularly removed it to talk or cough.

Coming out of surgery, having not slept yet, I decided I could not afford to catch something from this visitor, who obviously had little concern (she did wear a mask) for the other patients or even her father. Maybe they had the same thing. They certainly harmonized in their coughing and sneezing. I asked my wife to bring the sick visitors’ actions and sickness to the nurses’ station with the message I would like to move. She returned with a message that they would be working on it.

I waited 10-15 minutes and I thought the best way to bring this situation to the attention it needed was to get out of bed with my IV stand in hand and go out into the hallway. I did so and sat down on a non-descript desk chair at the end of the hallway far away from my roommate and his guests.

This seemed to do the trick. And I am so glad because I was contemplating lying down on the hallway floor and start shaking uncontrollably (just kidding). The head nurse showed up and I was moved two rooms down with a new sleep apnea patient as a roommate.

Day Three at Stanford Hospital Regular Room

I slept on and off throughout the night, again sleeping pretty good except to have to wake up to get pain meds and hear the patient next to me pleading for more meds. He seemed to know the names of all of them and which ones you could take together. He did not have jaw surgery. He had a GA (Genioglossus Advancement) and some soft tissue surgeries.

The big decision for us (my wife and me) was to decide whether to stay one more night or leave for our hotel for a week or so of recovery. Dr. Li said it was my call. My wife was leaning toward staying one more night and I was not sure. My only fear throughout this whole surgery and recovery was that with my mouth wired shut, I might choke and not be able to breathe. This is where I think about what my family and church friends would say and that would be “trust in the Lord.” So with a few prayers said, we left the hospital after one day in ICU and one day in a regular room. That decision probably saved my insurance company and me $15,000 to $20,000.

Everyone at Stanford Hospital was great.

John

First Two Days after MMA Surgery

2010-01-11T21:43:00.003-07:00

Introduction

I must apologize for taking a week to get back to you. Even though everything has gone well and I have no problem sleeping, I just have not felt like sitting in front of the computer. My wife Mary posted the last posting on January 5th the evening of the surgery. It has been some experience and I will describe all the experiences below and on later blogs.

Day One the Surgery

As we all know the surgery is a piece of cake for the patient. Once they plug you into the meds, its lights out and what seems like just 10-15 seconds they are waking you back up. While they are waking you up, you have that kind of warm close feeling like we had when you were 5-7 years old and our mother would come wake us up on a Saturday morning and say, “ How are you Johnny? Do you want breakfast?”

We arrived at the Hospital at 5:30 am and we took care of all the paperwork and $100 co-pay. They have an electronic display board in the waiting room where every patient’s “patient number” is displayed along with their status, such as: “admitted” “pre-op” “surgery” “recovery” etc. It reminded me of the flight status boards you see at the airports or in the cell phone parking lots at the airports; “plane has landed” “baggage arriving” “ready for pick up”.

I met the anesthesia doctor who was very nice and he advised me that it would be just him and me….no students to train today. He also said he is a professor and has been working with Dr. Li every since Dr. Li’s first surgery many years ago. I really think things go better when everyone working together knows how each of them think and work. And frankly, I did not want a student doctor practicing on me. Again, I think the Lord has blessed me dearly.

Dr. Li told Mary and me after surgery that everything went well. That may be a “pat” answer or remark but we still believed him. After all I was breathing on my own, there were no tears in my wife’s eyes and I expected everything to go well anyways. People have asked, including my wife, at least 6 times do you feel like your airway passage is bigger. I never could feel that my airway was too small before the surgery, so why would I feel like it is much bigger now.

As far as specifics on the surgery, we all want to know how much wider is my airway? Dr. Li stated that he moved my jaws forward 15 to 17 mm. He did also tell me that MMA patients are sometimes misinformed or misguided when it comes to the MMA surgery and looking for only a larger breathing opening from the MMA jaw advancement. He said, that just as critical is the tightening of the soft pallet tissue near the airway opening which then does not collapse in the enlarged airway.

I asked if he did any other procedures on me during the surgery. I was hoping for a tummy tuck, but I know that was not going to happen. He said as soon as he dropped my upper jaw, a bunch of puss started draining out of my right sinus cavity. We all have known that I have had a chronic sinus infection and I am on and off antibiotics 5-6 times a year. Sometimes these turn into full fledged sinus infections/colds were I am bed ridden for 3-5 days. Well, he said he flushed, suctioned and scrapped the sinus cavity while he was in there. He said that if my immune system does not come back and take care of this issue and I cannot defend these infections, I may have to do something about this.

Day One the Recovery & ICU

Well, sit back because I have a dandy of a story to tell you all about my ICU stint (from 12noon until 11 am the next day). I arrived there and it was pretty much what I expected. The large room had drapes for each patient, but they are not closed, not even half closed. I can honestly tell you without exaggeration that during the 11 to 12 hours I spent there I did not sleep one minute.

Patient One across from me:
She was in her 60’s or early 70’s and seemed to moan most of the night. I think the Stanford Medical School held a class there in her cubicle once every 30 minutes the whole night with approximately 6-8 students each time. They were examining her from top to bottom. At one point I asked an orderly to close her curtain or mine to give her a little privacy. I saw a lot more than I wanted to.

Patient Two across from me:
He was in his 50’s and did not make too much noise. I could not see him very well.

Patient Three right next to me (no more than two feet):
He was in his late 70’s or more and I believe he came in after I was there. I don’t believe he was doing well because besides his continual moaning, his children and wife talked to the attending physician for over an hour and a half about a living will and whether they should resuscitate him. I felt sorry for him because unless he as deaf, he likely was hearing how bad he was doing and that they were not going to resuscitate him.

I started praying for him on and off the rest of the night. I could see his monitor readings in the reflection in the glass partitions. So unfortunately I had a tendency to keep an eye on his pulse and breathing. Also alarms were always going off on his monitor so that further brought my attention to him.

Well, some two hours, later they decided to conduct surgery on him right in the ICU. It was a procedure where they went into his neck artery and ran a probe down somewhere in his body. They were monitoring the position of the probe with a sonogram type machine. The reason I heard most of this and could not just shut my mind to it was because a student doctor was performing the surgery and the professor/doctor was running him through every step of the procedure. At one point the professor/doctor did put scrubs on and took over the surgery procedure. The good news is the patient seemed in much better shape in the morning and was talking. I wonder if I can get any college credits for hearing everything I did?

Most people that know me know that I am an optimist and am not a complainer. And I am not complaining about what took place in the ICU that night. I understand completely that is why they call it the ICU. God bless all of the doctors, students, nurses and patients.

I said this because you will hear my first complaint just below.

I am getting tired and I want to post this so I will finish up tomorrow with days two – six.

John

Surgery and First Day of Recovery

2010-01-05T22:15:00.002-07:00

I arrived at the hospital by 5:30a.m. and got the necessary paperwork completed. I was called for presurgery prep, changing into a gown and reviewing information with the nurse. The anesthesiologist ,who has been at Stanford for over 25 years, told me what he would be doing and mentioned that he has worked with Dr. Li since Dr. Li had been at Stanford. I felt I was in good hands.

The surgery took four hours. Dr. Li said everything went very well and that he moved my jaw "a lot" and that I would be "happy". He said I should do just fine. I went from surgery to ICU. I have been applying cold packs all day and they do help. My pain on a scale of 1 being least pain to 10 being the greatest, is 7 soon after I arrived at the ICU. By the late afternoon, I was about 5 1/2. Most important is to stay ahead of the pain and not wait too long for medication. I am having some trouble swallowing my saliva but hopefully this will get better. Three things the doctor told me to do: Take deep breaths, where the chest rises up; Get up and walk; Drink lots of liquids.

I have only been able to do the deep breathing but tomorrow I will work on getting out of bed and hopefully, get some liquids down. More to come!

Just Under 24 Hours to Go

2010-01-04T10:31:00.004-07:00

At this time tomorrow I will be two hours into MMA surgery. I meet with Dr. Li today at 2:00pm for my pre-surgery consultation. As before, I have a long list of questions. I am feeling good about this surgery and ready to go. As a family member has just said, the surgery and recovery should be the easy part since I have spent 15 to 20 years living with the severe symptoms of sleep apnea.

It is amazing how God has guided us through this pre-surgery process. We attended the local Greek Orthodox Church on Sunday and met two doctors. One was a sleep doctor who trained at Stanford and the other doctor was an oral surgeon, who just last week, performed two MMA surgeries. They both gave us strong support for what I am doing and offered us their prayers. One of doctors stated that now they are trying to diagnose sleep apnea early in children before their growth plates are fully grown. They can make adjustments orthodontically so jaw surgery can be avoided later on in life.

I am starting to act and feel like a race horse at the starting gate, where he is chopping at the bit and raring to go! I would like to go and check in at the Ambulatory Surgery Center now and get all the paper work done now and even find myself a gurney and a blanket. Oh well, I guess I will pass the time roaming the aisles of the nearest Walgreens looking at different types of over-the-counter pain meds and getting a dry erase whiteboard.

So...take care and thank you for your prayers and your visits to my blog. I hope to post a post-surgery update very soon.

On My Way......See You On the Other Side

2010-01-01T09:10:00.007-07:00

My MMA Surgery is T-Minus 4 Days and Counting

Tomorrow morning we leave Phoenix at 5:00 am on our 735 mile journey which hopefully will take me from nights of sleeplessness to days of awakening to restfulness, energy, good memory and the ability to enjoy good times with my family and friends.

We have likely over done it on researching, planning, packing, purchasing, etc. however it did help pass the time. I started this blog with T-45 days and counting on November 25th. Now in just under 4 days, I will be in the hands of God and Dr. Li.

Second thoughts you ask! None. I would go in this afternoon if given the opportunity. I don’t deny having some thoughts about the pain, inability to eat & chew and talk. But those thoughts vanish immediately once I look back at the last 10-15 years of my un-corrected sleep apnea symptoms. I also think of the comments made by the many MMA surgery patients who praise the surgeons and the surgery.

I look back over the past six months and it seems to me my symptoms have gotten progressively worse. I am not sure if this is just a mental issue, but in any case I am thankful that there is a procedure available to me that has a good chance of providing substantial relief.

I don’t want to jinx’s this surgery but me being the optimist I am; I believe I have a great chance of being cured of the obstructive sleep apneas. I believe this because of:

My faith in the Lord Jesus Christ.

The prayers of my family, friends and others.

Having one of the best surgeons in the country if not the world.

Having the surgery performed at one of the best medical facilities in the country.

Well you next will be hearing from me one to two days “post-op”…….those words sound good to me. God bless you all and thanks for your prayers.

John

Pre-Op Testing Complete & Insurance Preauthorized

2009-12-21T11:16:00.009-07:00

My MMA Surgery is T-Minus 15 Days and Counting

Preauthorization Received - It's a Go

In just under eight (8) days my insurance company GEHA precertified my MMA surgery. I am amazed and proud of GEHA. Our prayers have been answered. My surgery is still set at Stanford University Hospital, Ambulatory Surgical Center on January 5th at 7:30 am. Check in is at 5:30 am which is great, since I am sure I will be finished sleeping by 3:00 or 4:00 am anyway. We will be staying in Palo Alto Jan. 3rd through Jan. 14th. We are driving our car both ways. It is 11 hours and 735 miles from Phoenix.

The only thing left to do, is enjoy Christimas and New Years with the family, pack and say my prayers for the doctors, nurses, hospital staff and a successful surgery. Amen

Pre-Op Testing Complete and Passed

I have completed the Pre-Operative Testing, CBC blood workup, EKG & Treadmill stress test and all is well.

Swallowing Concerns

I recently had some concerns about my upcoming MMA surgery and how it would affect some swallowing issues/choking issues I have had since my first soft tissue sleep apnea surgery. I sent Dr. Li several medical swallow test results which took place 1-2 years ago. I was afraid the new surgery might aggravate these issues. He informed me the surgery would not impact them. So no more worries. I am good to go. I would go tomorrow if I could.

Questions & Answers from the Doctors

2009-12-14T12:09:00.009-07:00

My MMA Surgery is T-Minus 23 Days and Counting

Question and Answers from Doctors

We all come up with many questions especially when it concerns our health. I must paraphrase the questions I asked and the answers I received from Dr. Guilleminault and Dr. Li. I did not take many notes and as we all know us OSA patients don’t have the best memory, attention and focus.

Q: Will you be performing the surgery yourself or handing it off to an associate or medical student?

A: I do everything myself. I do have a long time assistant that helps me.

Note: This was an important question for me, because for my second disc surgery, my surgeon who did my first surgery, who I trusted and had complete confidence in, advised me the night before surgery that her associate would be doing the surgery, since she had to be at another hospital the morning of my surgery. I said no way and I wanted her there. Who knows who actually did this surgery, I certainly was not awake for it. Surgeons have to get their training somewhere!

Q: How does my jaw bone structure look (after looking at my x-rays)? Large, thin, strong, small, etc.?

A: Everything looks normal. Bone grafts not likely needed.

Note: I checked with my dentist (of 20 plus years) before leaving Phoenix and he told me the same thing. The last thing I want is for my surgeon to have to start removing bones from one part of my body and gluing them around my jaws.

Q: Are my central apneas (my recent studies show more central apneas than obstructive apneas) caused by my CPAP/BiPAP?

A: My central and obstructive apneas are caused by air not my brain (like true central apneas).

Q: What changes have you made in your surgical procedures over the past 1-2 years?

A: None.

Note: I asked this thinking he may have learned that certain past practices did not achieve the best results and that new avenues (ideas) resulted in better improvements. I suppose that this is good news for everyone that has had the surgery in the past couple of years.

Q: What has been your oldest MMA surgery patient?

A: 68 and also a 60 year old.

Q: How long should we plan on staying in town (since we are from out of town)?

A: 10 days.

Q: Based upon my x-rays do my prior disc fusion surgeries impact on my airway?

A: It does not appear that they have.

Q: Does OSA compromise my immune system?

A: Yes.

Q: Will MMA surgery improve my immune system?

A: I am not sure.

Q: My minimum oxygen saturation shown on my latest sleep study shows 93%. That doesn’t seem so bad. What do you think?

A: The reason it is higher than you think it ought to be is because it is while being treated with a CPAP. This is why I want to see your diagnostic studies.

Q: Can I judge the quality of my deep-restorative sleep by the frequency and length of my dreams?

A: No. You may also be having dreams that you do not remember.

Q: Will you be considering additional surgical procedures such as GA (Genioglossus Advancement) in addition to my MMA?

A: No. I do not perform GA’s unless my patient asks for that particular surgical procedure.

Note: I was concerned that once my surgeon got me on the operating table and opened me up that he might decide additional surgeries would be helpful. If possible, I wanted to know this in advance.

Q: Do you have an idea on how far you might be advancing my jaws?

A: 10-12 mm.

Q: Should I plan on donating blood for the surgery (hopefully in January) during this trip or isn't blood an issue? Or won't it keep?

A: Blood donation is based on the blood test that you will have at a later time and the likelihood is low that donation will be required.

Costs and Insurance

Back to my visit with Dr. Li. Molds were taken of my teeth. And my credit card…..no just kidding. I did receive a letter explaining the costs for the four procedures that will be billed. I don’t know if it is appropriate to say, but what the heck, I have been always been the type to tell it like it is: $45,000 (approximately). These procedures were broken out by procedure code, so it was easy for me to call my insurance company; give them the codes and they could tell me if they were customary and ordinary. This is important because I have a PPO and Dr. Li is an “out of network” provider. This means I am responsible for 25% of what is customary and ordinary and everything above that amount. Let’s just say I am very happy with the amounts that my insurance company set as customary and ordinary.

I asked my insurance company for it in writing and they refused. They did say our telephone conversation was recorded and could be accessed at a later time. I am not sure if I believe them. If I remember correctly, I think former President Nixon told the Justice Department the same thing. I should have recorded my call with the insurance company myself. It is important to note that you need to give the insurance company the zip code of where the procedure is going to be performed. The fee schedules differ according to where you are going to have the procedure performed.

The good news is that Stanford Medical Center Hospital is an “in network” provider for my insurance carrier so I will only have to pay 10% of certain services and a $100 admission co-pay. Are you ready for this? They could not give me the estimated costs for the hospital charges; however they said that hospital costs are typically twice the cost of the surgeon’s charges. That means the likely total charges for my MMA could be close to $150,000. Don’t forget the Anesthesiologist bill is separate from the surgeon’s and hospital bills. His quote for 5 hours was $3,200.

Diagnostic verses Titration Sleep Study

Most of us (considering MMA surgery) who have not received beneficial treatment with the CPAP/BiPAP treatment have had multiple sleep studies performed, hoping to find that ideal pressure setting and/or machine that will work. I learned from Dr. Li that the diagnostic sleep study is the type of study he needs to review prior to surgery. The diagnostic sleep study is the study that records your breathing patterns during sleep without utilizing a CPAP/BiPAP, thus recording your true apneas and hypopneas. This makes sense; unfortunately I never thought about that, otherwise I would have had a diagnostic sleep study performed just before coming to see Dr. Li.

My recommendation to those of you who are considering MMA surgery is to have a full night diagnostic sleep study done within the past year, especially if you have had any sinus or sleep apnea surgery performed since your last diagnostic study. I believe insurance companies hesitate on doing a full night diagnostic study and typically split diagnostic studies are done where the first half of the night is diagnostic and the second half is titration (where they try the different pressure levels).

My personal belief is that an all night diagnostic study should be done. Then based upon what they see, a second study is performed with the titrated pressure settings. I think this is especially important for someone like me who sleeps through the first 4 hours without wakening and then has very fragmented sleep during the later stages of sleep. You, of course, should ask your surgeon and sleep doctor.

Guess What....MMA Surgery on January 5th

2009-12-10T11:14:00.012-07:00

My MMA Surgery is T-Minus 26 Days and Counting

Guess What?.................... I am having Surgery on January 5th, 2010.

I am flying high right now. The excitement is so great; I have almost forgotten my sleep apnea associated problems. I will elaborate below.

First Appointment: Stanford Sleep Medicine Center – Dr. Guilleminault

On December 7th we flew to San Jose and arrive at my first appointment of the day at Stanford Sleep Medicine Center (which is now located in Redwood City rather than at Stanford Medical Center in Stanford) for my appointment with Dr. Christian Guilleminault. We reviewed my sleep apnea history; he did a quick “look-see” of my throat and nose; we discussed my recent attempts to get my BiPAP to provide relief (air pressure setting of 18 cm); and I explained that nothing has changed. My symptoms today are the same as they have been since I was first diagnosed in March of 2006.

I looked over my list of 48 questions which I had been diligently preparing over the past 4 weeks, and fired away. I did have compassion on him; actually this list was for Dr. Li my surgeon; therefore I had the letter “G” placed beside only 19 questions. and I only asked Dr. G those questions. I don’t believe I have prepared so much for one interview, since my government days where I would prepare like this for a debriefing of a cooperating money laundering defendant who was about to turn on all of his co-defendants and tell all.

I will get to some of those specific questions later, but I would like to summarize Dr. G’s conclusions first. He restated (as he did back in January) that I was born with a small airway and a small jaw structure. The new news was: as I have gotten older the muscles and soft palate inside my mouth and airway has gotten relaxed and does not work as well as they use to. I have likely been snoring most of my life and snoring has a tendency to destroy nerve endings and the cells on the surface of your airway. This is something new I have never heard or read about. He elaborated further by stating that proper and correct breathing is dictated not just by an open and proper sized airway, but also by the communication between the brain stem and the airway muscles and nerves. This coordination and communication is very important for our breathing and inhalation/exhalation of oxygen.

He further stated, the soft palate surgeries I had, without a doubt, destroyed some of these nerve tissues and inhibited the required conductivity/communications. The bottom line is my disrupted and fragmented sleep is caused by both obstructed sleep apneas and the miscommunication or reduced communication of my breathing component of the autonomic nervous system.

Another factor bearing on this communication between my brain stem and muscles, etc. is the fact that I am 60 years old. We did not discuss that the age alone creates miscommunication but rather, any cells that were destroyed or damaged by snoring and/or the soft palate surgeries would not be restored as easily as if I were in my 20’s or 30’s. He went on to say that this is why many MMA surgeries are not 100% corrective.

Another factor that he believes may be affecting my airway is the two disc fusion surgeries I had had 10 and 15 years ago. If you do the math that is about the time I started having the depression symptoms (which are similar to OSA symptoms). There are two types of disc fusion surgeries. They are posterior and anterior. Anterior disc fusion surgeries (which I had) bring the surgeons work much closer to the airway. My neck surgeon was a great surgeon; however, there are always rewards and consequences when you chose to have surgeries.

Dr. G nor his “fellow” doctor who was assisting him would give me a recommendation to have the MMA surgery. They also would not say “don’t have the surgery.” Their recommendations were: Get a 35 degree bed cushion pillow which will elevate my head up above my body to offset gravity pulling on my soft tissue and closing my airway; losing some weight around my middle; and take two types of medication (Singulair and Flonaze) to help keep my airway open and possibly help with my chronic sinus infections.

Dr. G also pointed out the right side of my nose collapses when inhaling. That is something I never noticed and likely would never notice. This situation obviously affects my air intake especially at night while sleeping on my back. I will need to address that with my surgeon. My recollection from reading other blogs is that after MMA surgery, the nose tends to look wider (larger). I wonder how moving the jaws forward will affect the collapsibility of my nose.

Needless to say, I left Stanford and Dr. G feeling deflated. No pun intended. I have promised not to say this again, but I have to. I am an ex-marine. By the way we also say, “Once a Marine, always a Marine.” So we marched off to Dr. Li, who I was hoping and praying would see things in a better light.

Second Appointment: Sleep Apnea Surgery Center – Dr. Li

I grabbed my list of 48 questions. Dr. Li was going to get all 48 asked of him. We arrived at Dr. Li's office and his staff was very pleasant and welcoming. I turned over my two packets of exhibits containing sleep studies, lab reports, my sleep apnea history sheet (eighteen pages long), medical history including prior surgeries, current medicines, etc. Now that I look back on this appointment and the way I felt just before going in was like a felt before the big game (high school sports) or the start of a criminal trial where I would be presenting evidence or testifying against drug dealer, tax evader or money launderer.

I thought I had prepared the best I could. I had all my ducks in order. And now it was up to the jury. Dr. Li’s staff took ex-rays and prepared the video scope. Dr. Li came in….finally I am here… I can get the answer to my number one concern. Can I get a chance at fixing my problem or am I going to live the rest of my living life in hell? To my fellow believers forgive me, I do hope and pray on reaching Heaven and the Kingdom of God.

Well I can’t beat around the bush any longer. After all, this is not suppose to be a novel. Dr. Li’s words are still ringing in my ears. They were “John, I believe we can improve your sleep apnea 80-85% with this MMA surgery.” Other good words were: your age is not a factor; you are a robust 60 year old; as far as performing the surgery your age is not a factor (medical safety). My age really only decreases the percentage of success. At a younger age my improvement could be 90% plus.

From this point forward, I was flying high. I cannot describe how a felt then and how I feel now. I can imagine it is how prisoners of war feel when they see their captors hold their hands up in the air and their rescuers are coming through the front doors/gates. I know the surgery recovery will be tough. I know there are no promises. But with the results that others have achieved (thanks for your blogs & emails); the prayers of all of you; my trust in the Lord; and being in the hands of one of the best if not the best; I am confident that a good night’s sleep is in my future.

Dr. Li also stated that I may have some numbness that never goes away… for the rest of my life. My thoughts were because of my age. Things don’t repair as easily.

On our way out the door, I ran into two patients which had just undergone the MMA surgery. Ms. S. could not get her notebook and pen out fast enough after I told her of my good news and upcoming surgery. It is amazing how this difficult situation brings us so close to each other. The compassion, love, desire to help and encourage our brothers and sisters with OSA; and many other attributes seem to percolate from within us. It is not much different than how we were all drawn together after 9/11. I told Ms. S. I was 60 years old and a little concerned. Her notes to me read: Surgery 5 days ago; I’m 50; best thing I ever did; Dr. Li is the best; and here is my email address. Thanks Ms. S. By the way we have already exchange emails twice each.

Onward and Let’s Go

Needless to say, I have been going non-stop since returning from Stanford. This is the main reason why this posting is being made several days after my doctor’s appointments. My list of things to do:

Set Surgery Date…………………………....…...done
Pre-Operative Test – CBC blood test……...done
Pre-Operative Test – EKG…………………….done
Donuts and coffee………………………….......done
Pre-Operative Test – Stress Test.….appt. made
Arrange Stanford hotel & make reservations........done
Verify Insurance coverage & cost- surgeon.……....done
Verify Insurance coverage & cost - anesthesiologis......done
Verify Insurance coverage & cost -hospital.................done
Cinnamon roll and coffee…………………....done
Determine Insurance catastrophic protection (out of pocket costs)..done

Make appointment with for teeth cleaning..................done
Buy Magic Bullet Deluxe ($35 after$10 off at Costco......done
Make copies of medical directive,living will, etc.................pending
Share the good news with family & friends.....................done
Update blog…………………………………......done

I have decided to get this update posted now. I will follow up shortly with the Specific Questions and Answers from Dr. Guilleminault and Dr. Li. I also will include a topic regarding Diagnostic vs. Titration Sleep Studies and a section Costs and Insurance Issues.

Immune System Compromised

2009-12-05T11:21:00.004-07:00

My MMA Surgery is T-Minus 31 Days and Counting

Immune System Compromised

On December 4, 2009 I received a call from my Allergy Doctor who provided me with the results of several blood tests which were taken recently. I have been having chronic allergy infections for the past five years. I have had eight sinus infections where I needed antibiotic treatment in the past two years. These immune system “immunoglobulins” blood test (see web site below) revealed my IgA antibodies are very low and practically non-existent. They further revealed my IgG antibodies are abundant (mid-range) but are not functioning as they should.

According to WebMD:
“IgA antibodies are found in areas of the body such the nose, breathing passages, digestive tract, ears, eyes, and vagina. IgA antibodies protect body surfaces that are exposed to outside foreign substances. This type of antibody is also found in saliva, tears, and blood. About 10% to 15% of the antibodies present in the body are IgA antibodies. A small number of people do not make IgA antibodies.”

“IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections.”

http://www.webmd.com/a-to-z-guides/immunoglobulins

The question I have: Is my compromised immune system caused by sleep apnea and not obtaining enough deep restorative sleep?

And, with successful MMA surgery, will my immune system recover?

I would be very interested to hear from anyone who may have had this same situation and what were the results after surgery.

Few Notes of Interest

2009-12-01T16:57:00.009-07:00

My MMA Surgery is T-Minus 36 Days and Counting

Pre-surgery Consultation

In six days I go to Stanford (Dec. 7th - this day will live in infamy). I will have a short consult with Dr. Guilleminault. I will then go see Dr. Li for my pre-surgery evaluation and consultation. I believe he will review my sleep study; conduct a physical exam; take xrays of my airway; take fiber optic imaging of my airway; discuss treatment options; and yes, discuss the costs.

Hopefully Dr. Li's findings will be that I am a good candidate for the surgery (remember I just turned 60) and that there is a very good chance of success. Based upon other blogs that I have read and the bloggers comments, I think I will be having Dr. Li leaning towards treating the apnea's by moving the jaws forward as much as possible even if it dramatically changes my looks. I told my wife, I can always grow a beard. Priest and Deacons in the Greek Orthodox Church are suppose to have beards anyways.

For those that are interested, the cost of the pre-surgery exam, consultation, and test is about $1,500. That will be a good test of my GEHA insurance coverage. I will likely pay something in the range of 25-50%.

I will write again upon my return from Stanford on September 8th.

No More Good Nights

Those few good nights have vanished as fast as they arrived (see my earlier blog). The only thing different in my sleeping routine has been the addition of a cool mist (with wick) humidifier set at 50% humidity. The brand name is Bionaire. If any one has comments about using a humidifier at night along with using a CPAP with humidifier, please let me know. I will try one more night with the room humidifier and then I will go a few nights with out it to see If a few good nights return.

Summary of the Best MMA Surgery Blogs

I have just started a summary of all the blogs on MMA Surgeries. I hope to post this like my Stages of Sleep document sometime between now and my surgery. Some of the sections of the summary will include: List of Blogs including location, date and surgeon; What to do before surgery; week by week expectations during recovery; what to eat and not to eat; etc.

Again any feedback you might have regarding this summary and what to include will be welcome.

So long for now. God Bless.

A Few Good Nights

2009-11-25T13:10:00.002-07:00

My MMA Surgery is T-Minus 45 Days and Counting

I have just experienced 2-3 days or should I say nights over the past week with relatively sound sleep. I classify sound sleep as: not waking up more than 3 times; and falling back to sleep within 15 minutes; and not having to remove my CPAP mask because of too much air; and waking up for the last time after 6:00 am. I can't say what caused this. No new pressures on my CPAP. No real change in other habits.

I did not feel any better during the day, but then I am realistic enough to know it takes more than a few intermittent good night sleeps to make me feel better during the day. But, thank God, I still appreciate any improvement or change for the better.

My sleep doctor has order a new mask for me which will also cover my mouth. His theory is I may be doing some mouth breathing and thus I may be losing pressure out through my mouth instead of down the airway - keeping my airway open. I will let you all know after I give it a go for a week or so.

Stages of Sleep Chart

2009-11-17T22:04:00.006-07:00

My MMA Surgery is T-Minus 53 days and Counting

Stages of Sleep Chart

I have created a chart showing the Stages of Sleep. The information on this chart was gathered from many websites and a few books. I found this chart useful in reviewing my symptoms and reviewing my sleep studies. I am not a sleep doctor or specialist, so beware. As with all things found on the web, always check other sources. If you find any errors or have comments please leave a comment on this blog and I will try to address it on my chart or in my blog.

The site to visit to see this chart is: https://docs.google.com/fileview?id=0B7aw9Z_GdcW2MDgxMzQ3MTktMGVhOS00YjkxLWI1NDMtY2YxYTgxNDkzZWJm&hl=en

One Last Try to Fix

2009-11-13T14:29:00.005-07:00

My MMA Surgery is T-Minus 57 days and Counting

Last Try - A Pressure of 18 Centimeters:

I have tried and tried and tried at this new recommended presure. Every day, I mean every night and all night (6-8 hours) for 10 months. I promise not to mention again that I am an Ex-Marine. No results. My symptoms from day one (3 & 1/2 years ago) are the same. I go to bed around 10:00/10:30pm. My Symptoms are:

• I usually fall asleep within 5 to 15 minutes.

• I sleep straight for approximately 4 hours.

• Then I battle getting back to sleep and stay asleep for the rest of the night.

• I usually am able to sleep for 15 to 45 minutes segments.

• I get up out of bed about 6:00 / 6:30am (8 hours sack time).

• I get up un-refreshed, tired, low energy, depressed, poor concentration, etc.

Let me repeat myself. These symptoms have not changed since I was first diagnosed with sleep apnea and was put on a CPAP/BiPAP machine.

I should let you know, that I do not have a surgery date yet. I don’t even know if Dr. Li will give me the go ahead after seeing me on December 7th. Say your prayers for me and don’t forget to include my insurance company for an “OK – Approval.” So the 57 days includes a 30 day waiting period for scheduling and my insurance approval. I will let you all know as soon as I hear anything.

Diagnosis and Initial Treatment

2009-11-12T18:22:00.016-07:00

My MMA Surgery is T-Minus 58 days and Counting

Diagnosis & Initial Treatment:

On March 15, 2006 I had my first of six sleep studies. Per my sleep doctor the Split Polysomnography Sleep study disclosed that I had severe sleep apnea and did not respond to NCPAP. I will try and recall the best I can what happened next. As we all know while suffering from sleep deprivation your memory, concentration and focus are severely diminished. I will give you the short version of what happened over the next three and a half years: On May 8, 2006 I initially started using a CPAP. I then tried a BiPAP, BiPAP autoSV, VPAP, VPAP-ST and H4i humidifier. I have been on pressures of 4 to 18 centimeters and everything in between. I have used nasal masks and nasal pillows. I have used chin straps, eyes masks, ear plugs, and nose breathing strips.

Did I forget to mention, on April 7, 2006 only 3 weeks after my initial diagnosis, I had four sleep apnea surgeries performed at one time. They were: Septoplasty (straightened septum); Palatoplasty (removal of uvula); Partial Tongue Base Resection (posterior tongue base); and Turbinate Reduction. The next morning I was eating Dunkin Donuts and coffee in my hospital bed. Thanks Mary (that’s my wife). I also had lasagna for dinner (at the hospital). Thank God, I recover well from surgery.

An important note here: I was lead to believe these surgeries would likely correct my sleep apnea and free me from my CPAP. I do not recall the exact words of my sleep doctor and surgeon before surgery as to the prognosis. But I believed the surgery would fix my sleep apnea. This may be due to my positive and optimistic attitude. I do recall the words of my sleep doctor after another sleep study (4 months post surgery) and not much improvement in my symptoms. He said sorry John, I don’t know what to say, you just fall in the 3-5% of sleep apnea patients that treatments don’t work. He also threw up his hands and srugged his shoulders and said maybe you could lose some weight. (I am 6’ and weigh 195 lbs).

By the way, I have only missed three days of CPAP/BiPAP usage (and that was just to test myself on what would happen without it) in the past 3 & ½ years. Did I tell you I am an Ex-Marine….. I know I did, just kidding. The apnea surgeries mentioned above did decrease my apneas; however my symptoms did not immprove. The ENT surgeon was very good and a great doctor.

Determination (both figuratively and literally)

Moving forward: as I did with my “psych” doctors, I have seen several sleep doctors. They all tried different sleep medicines, different pressures etc. After doing tons of research, I changed insurance companies (from a HMO to a PPO) so that I could go to what I think (and many others also) to the best sleep doctors and clinic in the country – Stanford Medical Center – Sleep Disorders Clinic http://stanfordhospital.org/clinicsmedServices/clinics/sleep/sleepDisorders.html

On January 14, 2009 a “bi-level nocturnal polysomnogram” sleep study was performed at Stanford. During the scheduling and preadmission period, I made sure that I would be seeing the “top dog” (with all due respect) which was no other than Dr. Christian Guilleminault. http://stanfordhospital.org/profiles/stanfordhospital/physician/Christian_Guilleminault

The next day Dr. Guilleminault and his array of medical interns stood around me and said: Your genetics and possibly your prior sleep apnea surgeries are not allowing the CPAP/BiPAP machines to work properly. Your airway is very small. A pressure of 18 centimeters may work to keep your airway open; unfortunately it also causes central apneas.

My understanding is that when I use a CPAP at pressures above 10 cm., my system gets too much oxygen, thus my mind sees to little carbon monoxide in my system therefore it shuts down my breathing. Dr. Guilleminault stated that after a few months on the pressure of 18 centimeters, if I do not see any improvements, then I should consider MMA. I met with Dr. Guilleminault and Dr. Li the next day for a preliminary surgery consultation and a “look see.” They repeated the same prognosis.

What is MMA Surgery?
http://www.sleepapneasurgery.com/maxillomandibular_advancement.html

Introduction & Background

2009-11-11T17:03:00.020-07:00

My MMA Surgery is T-Minus 60 Days and Counting

Introduction:

Greetings from John in Phoenix Arizona. I am approximately 60 days away from Maxillomandibular Advancement surgery (MMA surgery). I was so impressed by Roger’s blog (http://www.rogerarrick.com/mma) on his MMA surgery (May 2005 – Sept. 2008) that I could not resist the temptation to follow in his excellent footsteps and write my own blog. Please excuse my in-experience. I have never even read a blog before Roger’s, let alone write one.

On December 7th, 2009, I am headed to Palo Alto, California to the offices of Dr. Kasey Li for my MAA surgical consultation. I am so excited. That may sound strange to some of you. Here is a guy 60 years old, headed into major surgery on his upper & lower jaws and breathing airway and he is excited! I will try to explain as we go.

Background:

I should start with some background. I have lived in Phoenix, Arizona for the past 28 years. I am a retired U.S. Treasury Special Agent. I am currently self-employed as a forensic financial investigator. I am married (for 35 years) and we have four grown adult married daughters (and six grand children). “That’s right,” I have lived with 5 women for over 25 years.

Now on to my more serious situation: Three years ago I was diagnosed with severe obstructive sleep apnea (OSA). They advised me that my airway was being obstructed during my sleep and I stopped breathing for at least 10 seconds 47 times an hour. Most of you if not all of your reading this blog know all about sleep apnea, so I won’t bother you with much more of the details.

On more with a bit of background that most of you will find familiar and disturbing: My symptoms of tiredness, daytime sleepiness, mode swings, depression, low energy, lack of concentration, etc. have been present for the past 15 years or more. For the first twelve years I saw psychologists, psychiatrists, family practice physicians and other medical specialists who unanimously declared I was suffering from “chemical depression.” Following their advice and prescriptions, I took antidepressants, uppers ????, testosterone injections, sleeping pills, some pill that wakes you up in the morning (I don’t remember the name of them), vitamins, and minerals. I read self help books on depression. I continuously returned to the doc’s advising them the drugs did not help much. I changed “psych” doctors every 3 years. I changed antidepressant every 6-9 months (or sooner if a new one came out).

Thank God for the last psychiatrist I saw. After a few months on antidepressants and no improvement, he saw me for a follow up and said these wonderful words “John, you don’t fit the profile but I think you should go and have a sleep study conducted.” He further explained individuals who have sleep apnea usually are overweight, may have a double chin and thick neck. None of these apply to me...well, I am 10-15 lbs. over weight. I had never heard of sleep apnea, sleep studies or some of the other terminology he used but he had my interest and I marched on. Oh, by the way I am an Ex-Marine.

I have always been a morning person. I am an early riser, anytime between 5-7 am and I am up, dressed and willing to go and do anything. Now I am wondering if that was not a predisposition but rather my sleep apnea waking me up early and also the fact that my energy was severely limited and therefore I only had enough energy for the first few hours of the day. Over the past several years, I guess my sleep apnea has gotten worse, because now when I get up at 5 or 6 am, I am awake but I have no energy or desire to do anything, except to go for donuts and coffee (after all I am retired law enforcement and just because I am retired doesn’t mean I gave up my morning ritual).

General Comments:

It’s funny how I can look back at my last 15 years and only now recognized what was really going on. I can honestly tell you that for the past 3 plus years every morning I woke up I felt terrible and just wanted the day to be over so maybe I would get a good night sleep and feel better the next day. I have told several people that if I wasn’t a religious person and I did not consider wanting to hurt my family members, I would have probably killed myself and be done with it. I would be willing to bet that there are many suicide cases out there that are a direct result of sleep apnea.

None of us who have sleep apnea and suffer from sleep deprivation are surprised when we hear that sleep deprivation is considered a torture method and is one of the primary tools used by the CIA and other governments to illicit information from terror suspects. And what about water boarding? Bring it on. It would be a welcome change from sleep deprivation.

It has been approximately a year now since this has happened, but there was a time when maybe one morning every 2-3 months that I would wake up and feel great. My words to myself and my wife would be: “Wow, this is what life is suppose to feel like.” I thank God for these few mornings, because they gave me insight to realize what I might be able to achieve one day. By the way I should mention that 10 years ago I was ordained a Permanent Deacon of Lay Profession in the Greek Orthodox Church. I have not been to seminary school (College). My theological training has been hands on and from reading Orthodox teachings.

One another point which bears mentioning is the reason I decided to write this blog was to hopefully help other sufferers of sleep deprivation, both those that know what they have and especially those that don’t know what they have. But as I write this blog I am learning and appreciating an additional reason for writing this. That is, it is making me feel better… and I have not even had the MMA surgery yet! I am now thinking if this writing is successful in helping others, that I may just give up my fairly good paying self employment forensic financial investigations and travel the country speaking at medical conferences (to doctors & medical providers & maybe even insurance providers). These are the people that come in contact with the diagnosed and un-diagnosed sufferers of sleep deprivation. Why should patients go years being miss-diagnosed as I was when they can be treated either by non-evasive CPAP therapy (and have immediate relief) or eventually by surgical means with significant improvement.

I have more to add at the start of this blog and will do so in a few days. I just wanted to get this blog started and see how it looks and feels.