A Few Good Nights

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

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

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

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

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.