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