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Re: Considering Tracheostomy

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Posted by Rosie on February 18, 2010 at 18:59:17:

It's been great to finally find this site, I really would love to get some feedback and advice from people who live with sleep apnoea and its consequences.
I'm 52, female and was diagnosed with severe obstructive sleep apnoea in 2004. When I was first diagnosed, after years of fatigue and exhaustion, I learned from my parents thats as a newborn baby, I used to snore incredibly loudly, to the extent that other people on trains etc would make comments to my mum. When I was 5 months old, my adenoids were removed, which helped a bit, but I continued to snore all my childhood and into adolescence. I was always a fit and slim child, doing many ballet and dancing classes, and excelling at long distance running. By the time I was 15 or 16, I had started to become exhausted, and was losing concentration at school. I was still snoring, but pushed myself hard at school and got into medicine at uni. I moved into share accomodation, where my snoring and choking at night became legendary with my flat mates! I struggles to keep the exhaustion at bay, and on days off would often fall asleep for hours, instead of studying. By the time I was an intern and resident in my late 20's, I was working 12 hour days, on call for days at a time, and working shift work (nights in Casualty) At 29, I had a complete mental and physical breakdown, I was diagnosed with depression, but I can only remember just feeling completely exhausted. I was unable to work at all for a year, but slowly recovered by sleeping and resting, meditation and exercise. During my 30's, I continued to experience regular episodes of exhaustion and lack of energy, and cyclical mood swings when I was overtired. I struggled to maintain a marriage, parent my daughter, and work part-time. I just felt like a zombie ALL the time, I could only get through the day if I had a sleep for 1-2hours, and then still felt awful. My husband was really frustrated with my snoring and leg movements at night. My symptoms worsened over the years, and I constantly felt off my face, with no energy. In 2004, I finally had a sleep study, which showed severe OSA, even as a doctor, I had not realised what was happening. Since then I have been on initially CPAP, starting at a pressure of 12, but have continued to require higher pressures to control the apnoeas. I felt fantastic for the initial 2 weeks, but then began to feel just as exhausted again. I am now on bilevel VPAP (due to morning headaches)at an IPAP of 17/ EPAP14.7. I use a Mirage Quattro Full face mask, which despite many different trials, seems to continue to leak around the nose and chin, and wakes me. I have trialled different designs, and nasal cushions etc, with no luck. The VPAP seems to control the worst of the apnoeas, with my index down to 5-10 an hour, but I always wake after a full night's sleep feeling terrible, fuzzy and exhausted. An ENT surgeon has found no obvious surgically treatable problems. I still cannot function properly, I still feel like a zombie, can''t work,am too tired to do anything, and don't want to feel like this forever. I am getting more tired as I go into menopause too! I hve had every blood test known to the medical profession- all normal! My last sleep study showed severely fragmented sleep patterns on VPAP, persistent obstructive episodes, but no central apnoeas. I am now considering having a tracheostomy, with a Montgomery cannula, as I am desperate, and know my sleep is constantly fragmented. My sleep specialist is extremely reluctant to go down this path, but I just want to have a chance at some quality sleep.
When I read some of the stories on this site, I cried, I realise that there other people out there with sleep apnoea, not responding to CPAP.
I would love to hear some of your experiences with surgery, have these methods helped, has it been worth it? I know all the theory behind the techniques, but I need to hear from people who live with these problems. I would especially love to hear from anyone who has had a tracheostomy, did this completely or partially help the obstructive episodes? How difficult is a trachae to manage every day?
Thank you for reading my post, it really helps to share experiences. Good luck to all of you in apnoea land!!! :-)
Rosie

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