Peter Toefoot
Peter Toefoot

cured from sleep apnea on 05.06.2019

When I first knowingly came into contact with the topic of sleep apnea at the age of 25, which was in 2017, I had already been suffering from daytime sleepiness for some time, which repeatedly led to microsleeps on the highway and involuntary falling asleep in moments of rest during the day. I was also well acquainted with headaches after waking up. However, I blamed this on the strenuous daily routine. I also knew from other people's reports that I snored a lot, but I didn't really put it into context until my wife convinced me, after countless attempts, to have myself examined in a sleep lab, because she was very worried about breathing pauses and the "gasping" for air.

Diagnosis sleep apnea

In the sleep lab, I was diagnosed with 71 pauses in breathing per hour - severe apnea. It was explained to me that the noticeable impairments may still seem mild to my young age, but the long-term consequences can be serious and that CPAP therapy was urgently needed. With the findings, I was no longer allowed to drive a motor vehicle until I was fitted with a CPAP device, as it could be assumed that the exhaustion and the risk of falling asleep were too high. I was very shocked at first and promptly started CPAP therapy, which also quickly brought the first improvements. I noticed that I was more rested when everything worked with the device at night, i.e. when the mask sat properly, stayed tight, etc. I was also more relaxed when the mask was not tight. In contrast to before, I realized that sleep can be much better than I had known before.

CPAP therapy without alternatives?

I started CPAP therapy at the beginning of the year and after only a few months, side effects began to appear. I sometimes woke up abruptly with a high pulse and noticed that my breathing no longer harmonized with the positive pressure supply of the device. This increased and at times I woke up as if under panic and tore the mask off my face. My device, which could vary with pressure in a range that could be set, always seemed to "blow" at the max value when I woke up. It became increasingly uncomfortable for me to sleep with the device, which, combined with other side effects such as dry mucous membranes, occasional headaches upon waking, led me to begin researching possible alternatives on "my own" to address my apnea.

Both at my ENT doctor, at the lung specialist in the sleep laboratory, as well as during the issue and adjustment of my CPAP device, it was suggested to me that the only method for the therapy of my severe apnea was positive pressure ventilation during sleep. I was not actively informed about possible alternatives in my case by the specialist, and there was little or no general information about other therapies.

About half a year after starting CPAP therapy, I had more and more frequent bad nights despite the fact that I ironly used the device, changed the mask and used the humidifier. I had problems with high pulse, severe tension and panic during the day in addition to waking up in panic-like states. I didn't know for sure if this was directly related to the apnea and positive pressure ventilation, but I couldn't rule it out either. The overall situation became more and more a physical and psychological burden for me, which spurred my efforts to find another way.

Surgery against sleep apnea

During my research on the Internet, I quickly came across a Swiss doctor who stated that he could also surgically eliminate severe sleep apnea in the long term. My interest was aroused, despite great skepticism, and through further information about this method I quickly came across the Seegartenklinik in Heidelberg. Driven by the thought of perhaps again being able to sleep restfully and take vacations without a mask, tube, machine and power connection and to feel more peace and relaxation again, I made an appointment for a consultation with Dr. Frey. For this appointment, Dr. Frey took a lot of time, answered all my questions in detail and in a way that was comprehensible to me and without giving me the feeling of getting lost, which I was afraid of at the beginning. The appointment gave me the feeling of genuine non-commitment and I went home with the impressions I had gathered, in order to continue studying the subject and, above all, reports on my experiences. After a few days, the decision was made in me that I wanted to have the operation. An appointment for the surgery was made.

A few preliminary examinations and a 3D scan were performed until the morning of the surgery came, when the fear and panic that had been my constant companion in the time up to that point anyway caught up with me and I began to have doubts. Mr. Frey reacted in a way that could not have been done better. He gave me the feeling that I could decide freely in every second and, despite other waiting patients that morning, he did not let me feel any time pressure. After a walk with my now wife in Heidelberg, I had collected myself and the fear of the procedure had subsided somewhat. In these moments, I was concerned not only with the risks of the procedure and the actual size of the procedure itself, but also with the change in my face that would result from the surgery and which, despite the 3D simulation, was not 100 percent calculable for me.

With the goal of improving my overall situation in mind, and with the many positive impressions of already operated and healed patients in front of me, I went into the operating room and let myself in for everything.

After sleep apnea surgery

My next memory starts with slowly waking up after the surgery. I was in pain, there is no denying that, and the first feeling of my mouth and lower face was strange. For the pain, I quickly got something from one of the nurses, of whom, without an exception, someone was absolutely always there for me and, above all, quickly at hand. I was never alone!

What I noticed, besides the pain and the strange feeling of my face even while waking up, fulfilled the hope I had placed in the first waking moments before the surgery: I breathed through my nose calmly and without effort, and an amount of air unknown to me until then flowed through my upper airway. This feeling from the first moments after the surgery I try to get back from time to time today, but unfortunately I don't succeed, because I simply got used to a functioning breathing without effort, which in itself is a beautiful thing. These first moments gave me the feeling that the operation, overcoming my fear and the then following strenuous phase of healing had already been worth it.

I will not gloss over what followed. The separation of both jaws from the skull causes pain. Pain that lasts for a while, but thanks to painkillers and the really very good and seamless care on the ward, it was easy to endure. The first three to four days were the hardest in retrospect, the swelling came to its maximum, the cuts were fresh, the pain was the strongest and I was simply exhausted. After those four days, my condition improved more and more quickly.

What was absolutely moving for me, my partner and my family in the first days after the surgery, despite all the discomfort, was to see how my breathing remained even and my oxygen saturation remained between 97 and 100 percent during sleep. Breathing was not immediately as good as it is today or immediately upon waking up after surgery due to the swelling and mucus in my nose and throat during the first few days, but this is of course quite normal.

The next few weeks at home were of course accompanied by a few aches and pains now and then, but I did not need the amount of painkillers that had been discussed as possible. The discomfort was made up for many times over by the incredible breathing and especially the great sleep. I can't remember the last time in my life that I slept so well, so deeply and so restfully. The feeling of waking up slowly, breathing deeply and calmly as a matter of course, and not feeling adrenaline or a high pulse was overwhelming. My Today Wife could no longer detect any snoring and would occasionally check to see if I was breathing at all, since I was sleeping so quietly. Even simple things like taking a nap in the summer on a recliner or on the couch, waking up calmly and knowing that sleeping without positive pressure ventilation was no more harmful than staying awake, gain tremendous value in perception when you haven't had it for a long time.

The physical triggers and symptoms of my panic attacks decreased significantly, the heartburn, which was more frequent before the surgery, has occurred only once (I attribute this more to the diet in the days before) and my physical and mental performance increased noticeably for me. My daytime sleepiness has disappeared, the effect is even more noticeable than after starting CPAP therapy. After seven to eight hours of sleep, I am refreshed and fit.

From today's perspective, my health situation was not exclusively caused by sleep apnea. A very demanding everyday life also played its part, but the physical exhaustion caused by the apnea was certainly the decisive factor.

The sleep apnea surgery - A complete success

The operation has not only ensured a good night's sleep, my breathing and oxygen saturation are also good during the day. The energy reserves that I now have enable me, in addition to my actual job as a mechanical engineer, to be able to pursue agriculture, to which my heart is attached, to the current extent. I would also certainly not be able to provide the higher energy expenditure required by the offspring that has been born in the meantime and the lack of sleep, which cannot always be ruled out, to the same extent without the step of the operation.

Also, since I am still young, I will most likely be spared secondary diseases from my severe apnea, which is a very significant factor in the overall consideration.

One more point I would like to address in my report is the cost factor of the surgery. The operation was not paid for by my health insurance. Even after two rounds of objections, the costs were rejected because an operation on the jaw could not and still cannot be brought in line with the therapy of sleep apnea by the standardized services of the health insurance. Also the crediting of the costs in the income tax as extraordinary burden was rejected in the first attempt, here I am still in the contradiction and hope for a positive result. The clinic management has already offered me help here with experiences of the cost settlements of other patients.

I mention this because it was and is sometimes nerve-wracking and the question of cost certainly moves one or the other. What I can say in general, however, is that the investment and in the operation is an investment in your own health and quality of life. I would have it done again despite all the difficulties, even if it turns out that I have to bear all the costs myself.

Cured from sleep apnea

I can absolutely recommend anyone who is thinking of going in this direction to seek advice from Dr. Frey. I was told that it is actually not possible to eliminate my severe apnea sustainably ... today I am writing this experience report and am cured. I hope to be able to encourage the readers a little bit and I am also available for the exchange of experiences.

Peter Toefoot