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Diagnosis information
I was diagnosed as suffering from sleep apnoea last November after going to my local hospital overnight for a sleep study; however, despite several attempts I have been unable to get any information from the clinicians. They are unable to tell me what my AHI score was nor any other detail, but have only said that my oxygen levels were low while I slept.
I'm sure they're right and I do have OSA but has anyone else experienced being diagnosed with so little information? I have very little confidence in the dept I am attending as they seem to know very little about masks etc. I was eventually given a Resmed S9 (after a 2 month wait) and it came with nasal pillows; there had been no discussion with me about type of mask etc and I told them when I collected it that I am a mouth breather with sinus problems!
I have really struggled with it and they agreed to provide me with an alternative; despite me suggesting that they may need to use sizing guides they ordered a Respironics Amara mask for me and I collected it on Friday. Unfortunately, it is a medium size and I am quite petite framed. The mask extends to the bottom of my chin and I cant really use it without experiencing leaks.
I'm now going to have to go back to them and request a smaller mask; I have just ordered my own sizing guide from Hope2Sleep and will wait for that to arrive before telling them what size mask is going to be right for me. I am feeling quite frustrated at the moment; I feel very little further on than I was almost 4 months ago when first diagnosed. I know people often have early niggles but has anyone experienced this kind of inefficiency? What a waste of money too..... I'm glad I'm not having to pay for these myself but I am starting to wonder if I should have just bought myself a mask!
Linda
Views: 89
Replies to This Discussion
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Permalink Reply by Kath Hope on
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Am sorry to read about your frustrations Linda, and am not sure why your clinic can't give you your AHI from your Sleep Study, unless you only had a Pulse Oximetry Test on your finger for the overnight study. In that case they would only be able to tell you have many oxygen desaturation events you had, and not all apnoeas cause desats every time.
It is understandable why you're having initial struggles, bearing in mind you were given a nasal pillows-type mask which is not an ideal type of mask to be given when first put on treatment, and especially if you're a mouth breather and have sinus problems. We're getting good feedback about the Amara mask you've got, but it is crucial that you have the right size, and when you get the sizing guide (which will be in the post tomorrow to you) if you find you're unsure about the correct size then for that mask it's always best to go with the smaller one. Incidentally, when I trialled the Amara mask I used the medium, but it was only when I switched to the small that I achieved good therapy - leaks are a problem with that mask if it's the wrong size. Also, have another look on the website http://www.hope2sleep.co.uk/products/101 and you'll see there are also 2 different sized frames available (standard and reduced size) and this also makes a difference, so make sure your clinic order the correct frame size too!
I hope you get the mask issue sorted quickly - the mask is more important than which machine you have! If you ever decide to purchase a mask we sell, please speak with me before ordering so I can help you, as once masks are unsealed and tried on they cannot be returned due to hygiene issues. I've wasted a lot of money on purchasing masks in the past that turned out unsuitable
You say you have the Resmed S9. If it's not the basic Escape model, you can view your stats on the free SleepyHead downloadable software. See this topic post http://hope2sleepguide.co.uk/forum/topics/free-software
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Permalink Reply by Linda on
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Hi Kath
I had lots of equipment attached to me when I had my sleep study, including the finger pulse bit. They also had audio and video recording. When I attended my 1st appt after the sleep study they couldn't find the results but the technician said he 'recalled' that my saturation levels were low. I don't think they've actually found them ever! I am determined to try my best to get this therapy to work, but sometimes feel that I am fighting an uphill battle at times !! I won't give up easily though.... and Hope2Sleep is a great support.
I shall certainly have a look at that software.... that sounds really interesting!
Linda
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