09-22-2016, 09:11 PM
New here with Extreme Apnea
Hello all,
Back in 2012 during a seizure disorder test at Stanford (I had begun having small strokes and other neuro problems), they discovered that my brain would wake itself up every 20 second or so all night long. It did this every night for the week I was connected to their neuro study machine. So, I was sent off to a sleep specialist also. During the two sleep studies I did at Incline Village, NV, they found I have extreme apnea and gave me an AHI score of 120. They issued me a CPAP machine immediately on the spot and showed me how to use it. I hated the darn thing until I finally settled on some nasal pillows. I'd sleep okay with it, but allergies and colds would make me set it aside and I'd quit using it.
Finally, after returning home from our winter in the Caribbean this June, I went to see my sleep doc again. We discussed the CPAP and how I just could not find a way to use the machine on the boat and how I had been fighting with it on and off over the last few years (no chip as this thing shows some code). He had me promise to use it every night and see him again after two months. So, I did. I wore it every night and slept better, but would still wake up and fight the machine as it leaked and had other issues. I'm a side and stomach sleeper (yes with such a high AHI) so it would always move off and need to be adjusted. He told me about the new Inspire program at Stanford and also talked about surgical options because I was beginning to show other health problems from such bad apnea.
At Stanford, I saw Dr. Capasso. He's a great doc. We went through all the options. He even explained that even with CPAP that some patients, like me, who can't lose weight, aren't sleeping well are still developing type II diabetes and other risks to their lives. My wife balked at all the options until Dr. Capasso and even my doc in Truckee both told her that she would be the one to eventually find me dead as 120 is close to the highest you can realistically go on the AHI. For instance, to get a 1, you must stop breathing for 10 seconds and then breath for 10 seconds. That's 20 seconds. That means you can realistically only score 3 points a minute for a highest score of 130. People talking about higher scores did not have the test done properly from what they said. Makes sense to me and my score is 120. Neither of them had ever seen anyone with a score even approaching that level (that's why I had to go through two sleep studies actually).
So, Capasso set me up with a sleep induced endoscopy, which I failed to be a candidate for the Inspire program. Dammit. His suggestion was the UPPP asap.
I had the surgery Sept 14, and I'll tell you flat out that it is the most painful thing I have ever experienced in my entire life. I've been through quite a bit too. I've been in an explosion, on fire, broken bones, vehicle accidents, broken face from football, power grinder to the mouth and into the nose, multiple kidney stones etc. I thought I had felt pain before, but this. OMG. From day 5 to today, it has been horrific. On top of that, I do not take pain meds usually. The opiates were giving me vivid dreams, hallucinations and flashbacks (I used to be an EMT). I saw a mangled body in bed with my wife and me, a girl in our closet, these little creatures running through the house and all through it, the worst pain imaginable. I spent two days where I seriously thought I was dying. I even said, "they lied. The people who said dying takes the pain away lied." I was laying there thinking this is how you die. It hurts like a mother and you just hallucinate your way away. It was freaky. It still is freaky. I remember wondering when I was going to just black out from the pain. Why am I still conscious? I thought extreme pain made you just back out? Then that's when I settled on that I must be dying. I know. I know. Melodramatic. But, extreme pain and drugs.
My wife asks me if I knew it was going to hurt like this would I still do the surgery? My answer is that I am not sure yet. I can't use the CPAP right now because the pressure would blow out the stitches in my throat. But, I have fallen asleep on my back, which I never do because I stop breathing normally, and I breathed fine even with the swelling from the surgery. The team of docs who worked on me said they removed 3 times the amount of tissue as they do normally. It seems to have made a difference. So, if this surgery can get me where I can sleep positionally without apnea (still very doubtful statistically), then heck yeah. If it get's my AHI down below 60, yes. Because if there is progress like that, I may opt for the less painful, but more aggressive, maxillary realignment surgery next summer when we get back from the Caribbean.
Curtis
BTW-The other benefit is on surgery day my weight was 263 (I'm 6'2). This morning it was 248. Overall my weight is down a lot. Two years ago I weighed in at 298. My goal is to be 220 by the time we leave for our boat in early January.
Back in 2012 during a seizure disorder test at Stanford (I had begun having small strokes and other neuro problems), they discovered that my brain would wake itself up every 20 second or so all night long. It did this every night for the week I was connected to their neuro study machine. So, I was sent off to a sleep specialist also. During the two sleep studies I did at Incline Village, NV, they found I have extreme apnea and gave me an AHI score of 120. They issued me a CPAP machine immediately on the spot and showed me how to use it. I hated the darn thing until I finally settled on some nasal pillows. I'd sleep okay with it, but allergies and colds would make me set it aside and I'd quit using it.
Finally, after returning home from our winter in the Caribbean this June, I went to see my sleep doc again. We discussed the CPAP and how I just could not find a way to use the machine on the boat and how I had been fighting with it on and off over the last few years (no chip as this thing shows some code). He had me promise to use it every night and see him again after two months. So, I did. I wore it every night and slept better, but would still wake up and fight the machine as it leaked and had other issues. I'm a side and stomach sleeper (yes with such a high AHI) so it would always move off and need to be adjusted. He told me about the new Inspire program at Stanford and also talked about surgical options because I was beginning to show other health problems from such bad apnea.
At Stanford, I saw Dr. Capasso. He's a great doc. We went through all the options. He even explained that even with CPAP that some patients, like me, who can't lose weight, aren't sleeping well are still developing type II diabetes and other risks to their lives. My wife balked at all the options until Dr. Capasso and even my doc in Truckee both told her that she would be the one to eventually find me dead as 120 is close to the highest you can realistically go on the AHI. For instance, to get a 1, you must stop breathing for 10 seconds and then breath for 10 seconds. That's 20 seconds. That means you can realistically only score 3 points a minute for a highest score of 130. People talking about higher scores did not have the test done properly from what they said. Makes sense to me and my score is 120. Neither of them had ever seen anyone with a score even approaching that level (that's why I had to go through two sleep studies actually).
So, Capasso set me up with a sleep induced endoscopy, which I failed to be a candidate for the Inspire program. Dammit. His suggestion was the UPPP asap.
I had the surgery Sept 14, and I'll tell you flat out that it is the most painful thing I have ever experienced in my entire life. I've been through quite a bit too. I've been in an explosion, on fire, broken bones, vehicle accidents, broken face from football, power grinder to the mouth and into the nose, multiple kidney stones etc. I thought I had felt pain before, but this. OMG. From day 5 to today, it has been horrific. On top of that, I do not take pain meds usually. The opiates were giving me vivid dreams, hallucinations and flashbacks (I used to be an EMT). I saw a mangled body in bed with my wife and me, a girl in our closet, these little creatures running through the house and all through it, the worst pain imaginable. I spent two days where I seriously thought I was dying. I even said, "they lied. The people who said dying takes the pain away lied." I was laying there thinking this is how you die. It hurts like a mother and you just hallucinate your way away. It was freaky. It still is freaky. I remember wondering when I was going to just black out from the pain. Why am I still conscious? I thought extreme pain made you just back out? Then that's when I settled on that I must be dying. I know. I know. Melodramatic. But, extreme pain and drugs.
My wife asks me if I knew it was going to hurt like this would I still do the surgery? My answer is that I am not sure yet. I can't use the CPAP right now because the pressure would blow out the stitches in my throat. But, I have fallen asleep on my back, which I never do because I stop breathing normally, and I breathed fine even with the swelling from the surgery. The team of docs who worked on me said they removed 3 times the amount of tissue as they do normally. It seems to have made a difference. So, if this surgery can get me where I can sleep positionally without apnea (still very doubtful statistically), then heck yeah. If it get's my AHI down below 60, yes. Because if there is progress like that, I may opt for the less painful, but more aggressive, maxillary realignment surgery next summer when we get back from the Caribbean.
Curtis
BTW-The other benefit is on surgery day my weight was 263 (I'm 6'2). This morning it was 248. Overall my weight is down a lot. Two years ago I weighed in at 298. My goal is to be 220 by the time we leave for our boat in early January.
