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In the United States, you may call 1-877-77APNEA to be connected directly to a dental office in your neighborhood.
Dr. Barsh,
Of course, you may use my comments. I consider myself a poster child for sleep apnea.
For about a year, I noticed that when I would try to fall asleep, I would have tingling sensations. I began taking two extra strength Tylenol which seemed to help. I was tired most of the time and had to take naps to make it through the day if I didn't. I'm normally a very active person, walking everyday, playing golf, etc.
While returning from a trip to Australia and New Zealand, our plane was delayed in Aukland causing us to miss our flight in California. We spent forty hours getting home. The total exhaustion from the return trip did me in. It was then that my symptoms really flared up. I suffered for months not even knowing what was wrong with me. I experienced numbness and tingling (sometimes painful tingling) all over and even inside my body and was tested for every known ailment with those symptoms. I was given sleep medications and other medications causing drowsiness which was the worst thing I could have done. I was so tired but when I attempted to fall asleep my throat was closing causing me to continuously wake up. For days, I hardly slept at all. Finally, my husband mentioned to the doctor that I would stop breathing at night. (Don't know why he didn't share this with me.)
They put me in the hospital that night for a sleep study thus discovering that I sometimes stopped breathing ninety times an hour. They put me on a CPAP machine but the force needed to keep my throat open was too much and upon falling asleep, I would immediately wake up gasping for air. I then heard about the BiPAP machine which has one pressure when breathing in and another when breathing out. When I complained about this, no one ever mentioned a BiPAP machine to me. I found out about it through someone else. I asked about switching and they told me that I would have to go through another sleep study to determine the pressure. (I had three sleep studies in all.)
The BiPAP was much better than the CPAP but because it had its own rhythm and my breathing pattern didn't match up, I was still waking up gasping for breath. Then they decided I needed to have an oxygen titration test so they gave me a BiPAP Pro machine just for the test. All I had to do was put the mask on and beginning breathing. It came on automatically and set itself to my rhythm. This was a Cadillac compared to what I had before but Aprea told me that I would have to have a prescription from my doctor and that they were sure he wouldn't prescribe this particular machine. I went immediately to my doctor and asked for the prescription which he told me he would write but that Aprea probably would not let me have it. I was determined to have that machine and told them that I would settle for nothing less and that they could not have it back. I won that battle.
None of the machines including the latter were ideal. I was so sensitive to the air blowing on my nose that I continually awoke to remove the mask and scratch my nose. It was also confining, causing me to wake up every time I wanted to change positions in the bed. Then there were the marks and indentations on my face the next morning which sometimes didn't clear up for hours, not to mention the mess it made of my hair. I tried every mask available, none of which were comfortable.
During all this time, I visited ENTs and oral surgeons looking for a better solution. I was told by the first doctor that they could break both jaws and pull them forward to open my air passage which I was told was very narrow. I pursued this avenue willing to go through hell to get rid of this machine. My insurance company denied the claim and we went back and forth trying to get approval. After the fact, we found out that the lady in the doctor's office had failed to send copies of my sleep studies even though she thought she had. I now consider this divine intervention.
After that failed, I went to another surgeon who wanted to take out my tonsils, adenoids, uvula and anything else lurking in my throat area. He sent me to an ENT who was supposed to ream out my sinuses, etc. while he would take care of the aforementioned surgeries. Fortunately the ENT he sent me to had ethics. He tested me and told me there was no need to put me through the pain of that particular surgery because it would not help my problem. He also told me that the original surgery of breaking my jaws would work but that he thought I wouldn't like the way I looked afterward because my features were normal and that particular surgery would distort my facial features. He said "You don't want to look like a baboon." I now thank God that the first surgery was never approved.
He told me that he wanted to do some research find a specialist who was well known in the field of sleep apnea surgeries. He found Dr. [Physician Name] in ... NC and sent me to him. Upon examining me, Dr. [Physician Name] told me that he could cut my tongue ligament and pull it forward and tie it off with a screw that would go through my lower jaw plus another surgery that he would go through the bottom of my jaw. This would keep my tongue from collapsing into my throat when I relaxed to sleep. After explaining this to me, he told me that he wanted me to try something else before putting me through these surgeries. He then sent me to Dr. [Dentist Name] and you know the rest of the story.
You wouldn't believe how many people I have witnessed to, many of whom have since been diagnosed with sleep apnea. This includes two of my own family members. People who have heard about my ordeal come to me asking me questions about sleep apnea and its symptoms and I gladly share what knowledge I have. I told people while I was going through all of this that I knew there was a reason for it but I didn't yet know what it was. Now, I think I do. It is to help others with my problem.
I'm taking good care of this appliance. I'm also holding onto the machine just in case the appliance breaks and I need it as a back up. I'm still looking for a permanent solution so if you hear of something, let me know. I cut an article from the Virginia newspaper that I saw while visiting my son there. It's about an experimental surgery that can be done under local anesthesia. I'm still hoping. My worst fear is being incapacitated and having to rely on someone else to keep me breathing. I worry about things like being knocked unconscious and not being able to wake up to take a breath.
Just to prove that this device works, I'll tell you what happened about a week ago. My husband told me one morning that he thought I should adjust the device out just a little because he heard me several times making slight gasping noises. I adjusted the device but that next night I kept waking up so I got up in the middle of the night and did another adjustment. I went back to bed and had a terrible night. The next morning I realized that I had been adjusting it in the wrong direction. After moving it back out, I've had no problems.
By the way, I have had no problems with the jaw. As a matter of fact, I have had less trouble since I've been using the device.
R.K.
