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Welcome Murray. Keep up the good work communicating with your health team. Down the road as MyApnea.org grows, you will be able to add information from your CPAP unit, fitness trackers and other devices so your unique profile is more complete when you compare your deidentified profile with others and your doctor. Stay tuned! This site should be around MANY years to help you all contribute to patient centered health care.
A question for you Murray, what kept you from taking action to get diagnosed sooner? How many years ago do you think you might have need treated?
Gerry, You ask some great questions and have some very good observations. There are some research questions proposed that touch on some of them. One question would interest you "How does long-term chronic apnea effect brain plasticity (memory, focus, and attention deficits)?" You might want to propose one about how frustration with the length of time between appointments to manage your treatment affects outcomes. You are a champion for being your own best health advocate and continuing to work towards treating your apnea.
WOW.......you sure are a champion OldRiverRat! Many of the reasons you seem to have good outcomes from treating your apnea is your dedication to finding solutions to challenges of traveling with CPAP. You share many challenges with truckers. Perhaps there should be a scouting badge available to CPAP users who creatively learn to find ways to adapt to any environment....a "Be Prepared to Sleep and Breathe" badge! :-)
Are there any other scout leaders, truckers, world travelers or others out there who have stories for us?
Very well said! MyApnea is a patient centered outcomes network........you did a great job of describing outcomes from treating your son's apnea. In your case you have let users know your son has some outcomes that aren't exactly what is expected. As more and more people post the outcomes their children are showing, common behaviors will emerge. Then those of you who live with and care for these children will have a list of "whys" and "whats" you want researchers to look at. They will create surveys for you to answer to help focus on specific problems as well as common good outcomes to see what is different and the same. Eventually the answers to your most important questions will be available for you and treatment can be targeted. What a great thing this is!
Let others with "sleepy kids" know about this site. You can do a lot to help get answers by encouraging others to join. The more people asking similar questions there are, the more focused the survey questions can be. Thanks for joining the network.
Welcome SleepyKitty! What a good topic. Of course your doctor who has looked at your entire airway can answer those questions best. There are many research studies trying to find ways to figure out just where the obstruction in obstructive sleep apnea (OSA) is, which of the places where there is obstruction should be fixed first, what causes the obstructions and what the best ways to fix the various types of obstructions. The answers are very individual. Each person comes with a unique mix of apnea causes and their own apnea pattern.
It will be interesting to hear other people's stories and see what would be most important for all of you to be studied and answered. Awaiting the next chapter in your journey!
Welcome Andy, Your ideas could be very useful. Other sites discuss the ideas the way you mentioned. This site is unique in that it looks at outcomes and what is different about the various outcomes associated with diagnosing and treating sleep apnea. With your experiences a good research question might be something like "Does patient knowledge about their disorder and treatment affect compliance with therapy?" Another one might be "How does the quality of service affect outcomes in diagnosing and treating sleep apnea?". It would also be interesting to have users post what was most important and influencial to them during all phases of their journey getting to a doctor, getting diagnosed and succeeding with therapy for their sleep apnea. Are different things important to parents of children suspected of having apnea?
When we learn these things, patients will have the tools to get diagnosed and succeed with therapy sooner and with high satisfaction. What questions would you like answered? What aspect had the most positive influence on your family,s diagnosis and treatment.? Researchers can followup with targeted studies to further define what the most important influences are. It's a different way of thinking and doing research. What do you think?
Hello all,
Marsha has an interesting problem with the burning feeling when she uses CPAP. Usually warming and humidifying the air like she tried the night of her study helps that but it didn't for her.
I think this website and forum are a bit different from others. The intent is to look at users' stories, ask questions, find common problems and barriers that result in poor outcomes. In the case of apnea, a poor outcome would be not being able to use CPAP or find another therapy to adequately treat it. All the people who have burning like Marsha could be compared without identifying them....just their stories and research surveys and find things that are common to them but not to the users' who don't have the burning. Then researchers could build some more surveys to ask more targeted questions for users and ultimately they might be able to identify the CAUSE of the burning and more effectively and efficiently treat it. Another important question to answer might be "How many people have so much difficulty getting their apnea treated that they don't have their bariatric surgery?" If it's a lot, there would be a bigger incentive for researchers to find the reasons why. That's how I understand outcomes research works. Invite your friends and relatives to join. The more users there are, the stronger the research will be.
Marsha, please keep posting your journey treating your apnea before and after your surgery. I imagine there are all sorts of questions after surgery that need answering too. Take the treatment suggestions offered here to your doctor for help learning which ones would be safe for you. It's all about what works for you with your special set of circumstances.
You provided some great insights Ruby. Thank you. I think your last is most important. Taking responsibility to be your own advocate and do your part to make treatment successful is KEY. It should be a partnership with your doctor and you have to be an active participant.
Perhaps you could get in sooner at another sleep doctor. Safety first!!!! Many of the stories in the forum are about struggling with treatment or not getting the outcomes expected (symptoms improve). I have a question about poor outcomes for the forum participants. What keeps people from expecting good outcomes and working with their doctors and other healthcare providers to get there? Why is it acceptable to struggle with treatment or symptoms that remain? Why do you think so many report seeing several doctors before they get help and a good outcome?
Sometimes more than one sleep disorder exist together. In the case of apnea, it is not unusual for it to be most prominent and the other disorder only shows after apnea is treated. Maybe the apnea IS treated and another disorder is causing the sleepiness. Sounds dangerous if you fall. It's a good idea to check with the sleep doctor when sleepiness doesn't improve.
