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Enlarged Tonsuls
I was diagnosed with severe sleep apnao around a month ago. I stop breathing 72 times a night completely up to one minute and ten seconds and partially stop 86times. I am seeingan ENT specialist in three weeks time and i am booked in for a Tonsolechtomy. I have not yet seen a sleep specialist as the waiting time is long, hoping that removal of tonsuls will cure me. Has anyone else had this experience?
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Replies to This Discussion
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Permalink Reply by suzanne erdbrink on
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Thanks Kath, such an informative site, so glad i found you all, don't feel so alone now. Knowledge is power as they say! Will keep in touch.Suzie
Kath Hope said:Welcome to the forum Suzanne and it's certainly worth seeing an ENT specialist to find out why you have sleep apnoea. However, like Terry has said, removal of the tonsils in adults doesn't normally cure sleep apnoea, but let's hope you're one of the rare cases that it does! Children have a lot more success in being cured after a tonsillectomy, although sleep apnoea does often return when they're adults. I have sleep apnoea and have no tonsils!
Our newest member on this forum, Mike Smith has just started a new discussion on how he had surgery on his septum which sounds like it didn't work either :( Here's the discussion if you've not seen it http://hope2sleepguide.co.uk/forum/topics/newbie
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i do have private health insurance BUPA but the maximum they pay is $500 , it all helps i guess, my friend that lives in Sydney paid $3000 for his. Maybe that's just Sydney prices, i think it was called a RepMAx or something? apparently its the best you can get with a humidifier built in......i wonder whether it can make a cup of tea in the morning too!
Terry Vella said:Do you have any insurance? There not $3000, $2000 max for a really good one, I know that is still a lot but this is your life we are talking about. When you get to that stage, if you do, well see what happens. In Australia, we can rent them for a few months so you can pay them off by the month, you could get them cheaper over the net so there are option. Just keep us updated on how your going.
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Permalink Reply by Kath Hope on
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Suzanne, Dr Park does his best, but you might not get a reply quickly as he's inundated with people needing his help. Meanwhile, go to this link and you can download a report from him about the truth of sleep apnoea surgery http://doctorstevenpark.com/the-truth-about-obstructive-sleep-apnea... By the way, I didn't mean for you to see an ENT surgey instead of a sleep specialist, I meant as well as. If I were you I would be trying out CPAP regardless, and if the surgery does go ahead, then you can obviously come of it.
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The sleep centre has recommended i have another sleep test done three months after surgery once the swelling goes down. if i want to hire a machine i have to buy the mask first, not hire it, this is a $300 outlay, then pay $100 to rent machine, that is fine but as surgery is now only three weeks away i didn't want to fork out $300 in case i don't need the machine after all? I am trying to sleep on my side and my belly, i think that helps. My sleep specialist appointment is for April sometime no specific date yet.
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Knowledge certain is power Suzanne, and so glad you found us
The UK system works very differently to yours, in that once diagnosed we get our machine supplied by the NHS and, officially, one mask a year, although a lot of clinics are good at changing them earlier when necessary or swapping to help people find the 'right one' for them.I can understand why you're waiting, although I personally wouldn't want to be without treatment, but see you're in a difficult position. You're doing the right thing in trying to sleep in safer positions and you could try elevating your bed at the bedhead end by a few inches (books under the base would do). Also, don't have any alcohol within 3-4 hours of bed and try not to eat late as well. Plus, make sure your nasal airways are as clear as you can get them to help with breathing.
Keep us posted and good luck with the surgery...
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Thanks Kath, i am reading Dr Sparks report now....so much to consider! He did reply and said that surgery may help significantly but not necessarily. !!
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Permalink Reply by Terry Vella on
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Suzanne, I'm with Bupa as well and get the $500 back approx 25%, not sure how long we would have to wait if we were public, knowing this government probably years. You prorbably wont need the best machine out and $3000 is about right for that machine, mine is very good and around $2000, if you decide to go down the CPAP path I can try to point you in the cheapest direction.
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In Aaustralia, you can hire a machine for $100 a month and a mask for $100 a month and change them as many times as you want then the money you pay comes off the purchase price. This is really good for the mask because most of us never get it right he first time, it took me 5 masks till I got one that really worked for me. Like Kath said you still need the operation but the CPAP could be an alternative but in Australia you still have to see a sleep specialist to get a prescription for a CPAP.
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Suzanne, glad you got such a quick reply from Dr Park, he cant say much over the net and without seeing you but you now have options if the operation doesn't work. You no longer need to feel like there is no hope at all. Most if not all of us on here have felt that way at some stage, that is why only we know what you are going through and can give support and assistance.
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Thanks Terry, once i have had my operation if, and it seems likely, i need a machine i will ask your advice, i like the idea of hiring a mask, that makes much more sense, not something my sleep centre offered but it was just a telephone call to the nurse after we discussed my results, not an in depth discussion as i haven't seen the sleep specialist yet. so glad i found you all! Just recommended you to a friend, she was told there is a 12mnth waiting list for her sleep test! And she has an autistic son! Told her to contact you, she lives in Sydney. Thanks Terry.
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For masks and machines we go to shops to hire and purcahse them, I go to one in Melbourne called MCS (Melbourne Centre for Sleep) I don't think they have any in Qld but will find an equvilent for you. If your friend is going public that is probably right, my sister did a home study which only cost $100 vs $1000 in a hospital and was done a week after her appointment, it is not as accurate but a good indicator.
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That was what i had, a home study one, i wasn't aware there were any other types! Oh i have so much to learn! Thanks for your research for me, its appreciated.
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