I have a long history of sleep apnea which dates back to at least 1974 (age 7). It was caused by a congenital disorder called Goldenhar’s syndrome. I was not overweight or anything like that. However, I was probably the worst kid in class when it came to dozing off. However, my parents saw to it that I had at least reasonable amounts of sleep. This continued all the way through school and even into college.

    The plot really thickened when I was going to West Virginia University (WVU) in Morgantown, WV from 1996 to 1999. In 1997, I finally got my first sleep study, and unfortunately, my body was playing games (not acting up when being monitored and observed). I was first diagnosed with periodic limb movement in sleep and MILD sleep apnea. The doctor that I had at that time told me that the limb movement was more of a culprit than the sleep apnea. As a result, he placed me on a combination drug that included levadopa and carbidopa. However, the sleepiness got even worse when going to WVU in the beginning of 1998. Later, this doctor added another dose of this same combination drug, but there was no real improvement and I was also having near daily nightmares. I was also eventually placed on Ritalin, a powerful stimulant. This helped a lot, but was not fool proof. All this stuff was done in Wheeling, WV.

    In the Summer of 1998, I was referred to Dr. Ernest Manders in Pittsburgh, PA. Naturally, he tried lesser measures and worked up to more drastic measures. He first had me try sticking a quote "nasal trumpet" (a tube that goes into the nose and down part way into the throat and also has an opening that is shaped somewhat like a trumpet). However, this proved to be too painful even after about ten minutes of leaving it in. I was supposed to sleep with this tube in me! Unfortunately, it was getting time to go back to WVU. This caused needed subsequent trips to Pittsburgh to be very inconvenient. I ended up going back to my doctor in Wheeling to get more Ritalin.

    In the Fall of 1998, I had another sleep study done in Wheeling, and the results are much the same. However, the doctor had me try a drug called Cylert. Again, the drug seemed to help, but was not fool proof, even at 112.5 milligrams a day. Needless to say, I continued to have problems in college. Also at this time, depression and burnout were getting worse. In the Spring of 1999, I failed my first class. I just could not stay awake in class or to even do my homework.

    In the Summer of 1999, Dr. Ernest Manders from Pittsburgh and I agreed on the next phase. We elected to try a surgery called a tongue advancement. Here, a piece of fascia was removed from my right leg in order to make a "sling" that would create a groove in the back of my tongue. It circled around the back of my tongue and around an area below and inside my chin. While the surgery itself was rather minor, there were many problems, including having to spend a night in ICU on a darn ventilator. However, my sleep quality did not really improved. It did, however, substantially reduced my snoring at night. I used to snore like a freight train. While I was in the hospital for this surgery, I had a "portable" sleep study done on me. On a portable sleep study, a subset of monitors are placed on you, such as EKG, pulse oximeter, respiratory effort straps, and a special microphone for picking up snoring. However, my oxygen saturation got down to 80%, which is too low. It should not be below 90% and DEFINITELY not below 85%. As a result, I was asked to try nighttime oxygen at home at 1 liter per minute.

    I went back to WVU in the Fall of 1999, and I continued to use the oxygen at night. However, there seemed to be no benefit, and I was still dozing off in class and not being able to do my homework. Also at this time, depression and burnout were worse and adding to the problem.

    I later tried a CPAP machine (Continuous Positive Air Pressure). While it seemed to counteract the obstructions in my throat causing the sleep apnea, the machine caused SEVERE stomach bloating, and I had to kill the power after about 1-4 hours. I had to use a pressure setting of 16.5 cmH20, which is pretty high. Most CPAP users use a pressure of 5-10 cmH20. However, these normal pressures were not strong enough to counteract the throat obstructions that I had. Later, I tried a BiPAP machine (Bi-level Positive Air Pressure). This machine works with your breathing and uses a different pressure for inhalation and exhalation. With this machine, I needed pressures of 12.5 for exhalation and 17.5 for inhalation. Needless to say, I continued to have severe stomach bloating—just about as bad as with the CPAP machine. Because I had to kill the power after about 1-4 hours being hooked up to the machine, my sleep quality was not improving. In fact, the stomach bloating was probably adding to the sleep problem. I was told to try Gas-X, but this also failed to cut the mustard, even at extra strength. It was a losing battle!

    Later, I was told to go back to the nighttime oxygen, but to crank it up to 2 liters per minute. However, there was still no real improvement. I was continuing to do poorly in school. At the end of the Fall semester in 1999, I failed three classes and had a semester GPA of 0.93!

    I was also told to try head elevation. My mother bought me a wedge to place on the head end of my bed in order to raise my chest and head, much like that of an adjustable bed. However, the benefits were very small.

    As a result of this losing battle, I decided to take a leave of absence, since I was just beating up against a brick wall. I even took a test on the internet to measure my degree of burnout, and it was pretty bad. On the part of the test that measured the effects of my exhaustion, I scored an 84. A score of 0 is ideal (no effects of exhaustion). A score of 100 is disastrous. Needless to say, I was only 16 points from being on the worst end of the scale. I was glad that I decided to bail out of college for a while until I get this stuff truly fixed.

    While I hoped to get a tracheostomy done before mid-Summer of 2000, things just kept going wrong, and the surgery was getting put off again and again. It was if something demonic was gong on. Mr. Sleep Apnea was ruling my life! I got another sleep study done (in Pittsburgh), and this time, my body put up a wonderful confession. My oxygen saturation got down to a frightening 59%, which is kind of critical. I actually stopped breathing a whopping 70 times in ONE HOUR! In addition, I woke up EACH TIME that it happened, although I don’t remember it. This waking up was picked up on the EEG. I was spending hardly any time at all in stages 3 or 4 sleep. In stages 3 and 4, you get the most restful sleep. Another doctor in Pittsburgh agreed with Dr. Manders and me that it was time for a tracheostomy.

    As December 6, 2000 (the date of my scheduled tracheostomy) was approaching, I was getting excited, almost as if I was about to go to an amusement park. I was ANXIOUS to send Mr. Sleep Apnea to HELL—where it BELONGS! I was creating drawings and such on ideas that had to do with the death of Mr. Sleep Apnea!  I was sending these pictures to many friends, relatives, and acquaintances through email.

    December 6, 2000 FINALLY came, and I had my surgery done at Montefiore Hospital in Pittsburgh. I was taken into the OR at 12:38 PM EST, and the surgery lasted about 45 minutes. I went through it with just local anesthesia—no sedation! I was treated very well in the OR.

    Here is what all happened in the OR after getting onto the operating table.  Various monitors, such as EKG, pulse oximeter, and a blood pressure cuff were placed on me, along with a safety strap across my waist.  I was also given nasal oxygen.  An IV was started in me before being brought to the OR, just in case if I had to be put to sleep.  This was probably the reason why all the monitors were placed on me.  A wedge of some sort was placed behind my upper back in order to hyper-extend my neck without effort from me.  It was a bit uncomfortable, but not by any means unbearable.  My neck area was palpated, and reference marks were made.  As my neck and trachea were palpated, I had feelings as if I was being strangled.  However, I figured that the doctor would not strangle me; He just needed to be sure of what he was about it cut into.  In addition, betadine (an aseptic better than alcohol) was painted on my neck and upper chest area.  Later, I was covered with blue surgical drapes, which were much like heavy bath towels.  Also around this time, I was given several injections of Lidocaine to numb the area.  Since a significant amount of Lidocaine was needed, it stung quite a bit, but was not unbearable.  It reached about 50% of my pain tolerance.  The front of my neck was cut open, and the skin was retracted a little ways.  About two-thirds or three-fourths of the way through the surgery, the trachea itself was finally supposed.  Shortly afterwards, I was given some tracheal anesthetic.  This was more merciful than the initial numbing of my neck.  The needle almost could not be felt.  The worst part here was that the stuff caused me to go into a coughing fit for about 2-3 seconds.  This happened a couple of times.  However, a little bit of time was given between the two doses in order for me to get back to my senses.  After this, the hole was created in my trachea.  Another startling thing was that after the hole was created, the area was suctioned out in order to help keep debris from getting into the trachea.  This resulted in a feeling as if my breath was being taken away.  However, my chest muscles were able to keep things from getting out of control, and this lasted only a few seconds.  The Montgomery cannula was then inserted.  After some final suturing, I was asked to try some stuff out.  I was asked to speak, and I found that I could get only about 2-3 words out in one breath.  I was also shown how to occlude the cannula with my finger since I was not supposed to leave the thing corked for a few days.

    After being wheeled out of the OR, I was taken to a recovery room for a few minutes, mainly because a regular room was not ready for me yet. However, I was happy in the recovery room, for I was not sick, like many patients are in there.

    Finally, I was taken for a LONG ride on the stretcher all the way from Montefiore Hospital over to Presbyterian University Hospital. While these hospitals are physically connected to each other along with Eye and Ear Hospital, Eye & Ear Institute, and Children's Hospital, my trip was probably close to a mile long!

    The remainder of my hospital stay was pretty easy. Since I brought a small music keyboard with me and the fact that Christmas was approaching, I took the keyboard and held it a lot like an accordion and went out into the hallway in my unit and played Christmas music for the staff and other patients! Needless to say, the nurses were surprised and impressed. Since I was up and walking about, I helped myself a lot, such as when I wanted to get a snack or something to drink. I don’t believe in making the nurses do everything for me when I am able to help myself. I felt good about this. As for recovery, I did have minor problems with swallowing, but this was also rather short-lived. As for pain, I had moderate pain for the first couple hours or so after being brought to my room, but not once did I need any pain medicine.

    On the next day (December 7, 2000), I was able to go back home already. I adjusted to my tracheostomy rather easily. I was able to do light housework and such.

    Later in the weekend, though, I started getting swelling in the neck area. I was doing a LOT of coughing after the tracheostomy, and much of this appears to be due to the preexisting bronchitis that I had. I call this bronchitis the West Virginia curse! On Monday evening, I was coughing a good bit, and my uncle’s new wife thought I was getting a cold. However, Monday evening went ok for the most part.

    On Monday night, all Hell broke loose! Around 1:00 AM or so on Tuesday the 12^th, I was trying to get settled down to go to bed. However, it was COUGH, COUGH, COUGH! Around 2:00 AM, my Montgomery cannula was SHOT OUT! Between the swelling, pressure, and all that coughing, the cannula came out a lot like a bullet! Needless to say, we had blood and gore. I was moaning some from the pain due to this incident and went into my mother’s room to wake her up. We both were horrified. The odd part was that while the cannula was out of the hole in my neck, I was able to speak relatively easily. Around 2:15 AM, my mother and I made an emergency trip to Pittsburgh. Yes, there was ice in the weather forecast. I took several kitchen garbage bags with me to drape over my chest and neck area in order to minimize any mess in the car. On the trip to Pittsburgh, I was mentally handling the ordeal better than my mother was. We finally got to the emergency room at Presbyterian University Hospital around 3:30 or 3:45 AM. The reasons why we didn’t go to the nearest emergency room was because the bleeding slowed way down and was not life threatening and also most doctors are not familiar with the Montgomery cannula. In fact, even the doctors that were on call in the emergency room where I went were not familiar with this type of cannula. They didn’t really do anything, since my life was not in danger. I was told to see my plastic surgeon that day. Around 7:00 AM, my mother and I went to and had breakfast at the cafeteria on the eleventh floor in the hospital. Around 7:45 or 7:50, my mother was able to reach my doctor through one of the wall phones that are scattered through the hospital. I was told to come in as soon as feasible.

    Around 8:20 AM, I was finally able to see Dr. Manders. He was horrified and surprised when he heard about what happened. He was further surprised by the fact that the cannula was uncorked at the time when it was shot out. However, it was severely clogged with blood and possibly other gook. The hole in my neck nearly closed up in only about six hours! The cannula was cleaned while I was in the emergency room during the night. Naturally, he tried to re-insert the cannula back into my neck, but was unable to get it in there properly. He then tried a size #6 Jackson cannula, and was unable to get this one in. Finally, he was able to get a size #4 Jackson cannula put in. Had he not been able to get this one in right, I would have been headed back to surgery! The Jackson cannula was then tied around my neck. This mess was quite painful, even for a tough guy like me. This ordeal hit me about 3-5 times worse than the surgery itself did! He was hoping that my mother and I could stick around the area for the next night, but this was not too feasible. As a result, he decided to have me get an x-ray to see if the Jackson cannula was where it was supposed to be. After trial and error, a satisfactory x-ray was obtained, and I was ok. We were told to stick around the hospital area and see the doctor again at 12:30 that afternoon.

    Around noon or so, my mother and I headed back to the clinic where Dr. Manders saw me that morning. On the way up the elevator, I said to my mother something like "I feel as if I was through a war zone." My mother had pity on me. While in the waiting room, my mother decided to do a safe experiment on me. Since there was no one else in the waiting room, my mother gave me a back and shoulder massage and also did some reiki on me. She worked on me for probably 15-20 minutes. Believe it or not, but this treatment that my mother gave me actually wiped out at least 70-80 percent of the trauma from the night before and that morning! After being called into a examining room, I was found to be doing ok and was sent home.

    My mother and I finally got home around 4:00 or 5:00 that evening. After taking a different route to our house due to getting the mail while still in the car, we pulled down into the alley that runs behind our house. As we were going down this alley, I said to my mother again something like "I feel like I’ve been through a war zone." My mother replied with something like "And you looked like it" in a sympathetic voice. My mother and I were both shot from the long night and long day.

    Things went generally well throughout the Christmas season, and even Ol’ Jack (my Jackson cannula) could not spoil Christmas Day! The worst parts while having the Jackson cannula was whistling in the cannula along with blood and gook in the inner cannula a lot. Finally, we were able to go to Pittsburgh again on December the 29^th. At this visit, Dr. Manders removed my size #4 Jackson cannula and was able to successfully put in the size #6 cannula, but not without some blood, guts, and gore. When I was lying on the stretcher, I had blood and gook being coughed right up through the hole in my neck! While things got ugly visually, the pain was not as bad as it was before. After being cleaned up and had a dressing applied, I was sent back home.

    I was due to go back to Pittsburgh again on January 16, 2001 in order to hopefully get the Montgomery cannula re-installed. I was ready to say good bye to Ol’ Jack! When this day came, my mother and I had a pretty decent day for a change. While Dr. Manders was able to insert my original Montgomery cannula, he thought maybe I should have a bit longer cannula. Luckily, he had a new Montgomery cannula in stock, so he installed this into me. The pain this time was even less than on December the 29^th. However, he had a devil of a time being able to see into the cannula, and even tried using an otoscope with the room lights turned out. Fortunately, the alignment of the cannula was just perfect. With that, we were sent home. My mother and I enjoyed ourselves throughout the rest of the day.

    It is now February the 2^nd as I am writing this, and things seem to be doing pretty well with my new Montgomery cannula. After seeing what my doctor tried to do in order to get a good look in there, I started playing around with some stuff at home, trying to be able to get a good look in my own cannula—and into my own trachea! I sometimes have some small amounts of bleeding around the hole. Sometimes, the cannula wants to start working itself outward. When I think it is getting out kind of far, I have been just shoving it back in myself with no major problems. Fortunately, I can go about 2-3 days at a time between making depth adjustments on my Montgomery cannula.

    Needless to say, Ol’ Montgomery and I are getting along with each other quite well. My sleep apnea is now in HELL, and its "ghost" ain’t far behind! I am sleeping a good bit better since I had the tracheostomy. May Mr. Sleep Apnea never be seen nor heard from again for all eternity!