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Hi all, so, OK I got a diagnosis of OSA and was given a CPAP machine.
Finding out exactly what the problem is has not proven so easy. By exact problem I mean what the structural problem in my throat is - small jaw, blocked nose, big tongue, fat neck - etc etc.
My GP told me I had a big uvula, and polyps, and that's about it.
Is there a way to maybe get a scan that a medic can point at and say, "this here is what's wrong" ? Maybe ultrasound scan ?

thanks

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Sorry for such a long delay to your question John, as we're inundated at the Hope2Sleep Charity (who run this group) at the moment. The reasons are not always given as a lot of sleep clinics are run by respiratory departments, yet with obstructive sleep apnoea it's usually caused by ear nose and throat, which come under ENT (athough some clinics are run by ENT departments as well). An ENT consultation would usually be able to easily spot some of the problems although things like a fat neck and large tongue base can be seen ourselves. The main reason the cause isn't usually investigated is that with CPAP being the gold standard treatment which usually works well, finding the problems doesn't usually help as very few people are actually cured via surgery. You can certainly find out for yourself though by asking your dentist or GP to look, or like I said an ENT examination would spot more problems.

Thank you for your reply Kath. Well, I sort of lucked out because my GP was an ENT specialist who started getting into my case but he went elsewhere after Covid came so that was that.
Year ago my dentist wanted to fiddle with my teeth to allow my jaw to move forward. Other dentists and medics disagreed, and I never went for it but am left with the feeling that maybe I should have, and have something fixable, just allowing my jaw forward a fraction - and I thought OK maybe a scan will show if that would work.
What my dentist said was that my bunny teeth were blocking my jaw from sliding forward, and I was heading for TMJ problems. The cure was to file the incisors down and allow more movement. An ENT specialist said this was rubbish and another dentist said it was just for the money, so that just left me with disagreement between people with letters after their names.

So it would be interesting to hear if such a procedure is known to work - reducing top incisors to allow the jaw to move forward.

I haven't got a fat neck, I had to get a second opinion on OSA as the first doctor said my neck was too thin for it. Second doctor said nope thin necks can give it too and he turned out right. But I was wondering maybe if the basic structure of the throat is iffy then it only takes a bit of fat to cause problems, marginal differences becoming important.

It was worth persisting and getting that second opinion - that would be my advice to people approaching this issue.

thanks!

Ha, that's typical John, as your GP would have been able to give you a good examination.

Regarding the conflicting advice you've been given regarding jaw surgery, that's very difficult. We've come across several people who have had that surgery who say it's very painful, and sadly it didn't cure their sleep apnoea as there's often more than one reason for the cause. I personally would be very careful before going through that kind of surgery and would want very good odds as to the likelihood of a cure. Take a look at some of the surgical options Dr Park addresses https://doctorstevenpark.com/sleep-apnea-basics/surgery-for-snoring...

You sound like me in that you like to get to the cause of things and I have several different reasons for why I have severe obstructive sleep apnoea, but I've resigned myself to the fact that I'm grateful our condition, which can be so serious untreated, can be successfully treated without the need for longterm medication, which almost always have side effects. I honestly wouldn't want to put myself through lots of different surgery without a guaranteed cure, and the only surgery I have had is septoplasty and turbinates reduction which I didn't expect a cure from so wasn't disappointed, but I can breathe better in the masks now.

John said:

Thank you for your reply Kath. Well, I sort of lucked out because my GP was an ENT specialist who started getting into my case but he went elsewhere after Covid came so that was that.
Year ago my dentist wanted to fiddle with my teeth to allow my jaw to move forward. Other dentists and medics disagreed, and I never went for it but am left with the feeling that maybe I should have, and have something fixable, just allowing my jaw forward a fraction - and I thought OK maybe a scan will show if that would work.
What my dentist said was that my bunny teeth were blocking my jaw from sliding forward, and I was heading for TMJ problems. The cure was to file the incisors down and allow more movement. An ENT specialist said this was rubbish and another dentist said it was just for the money, so that just left me with disagreement between people with letters after their names.

So it would be interesting to hear if such a procedure is known to work - reducing top incisors to allow the jaw to move forward.

I haven't got a fat neck, I had to get a second opinion on OSA as the first doctor said my neck was too thin for it. Second doctor said nope thin necks can give it too and he turned out right. But I was wondering maybe if the basic structure of the throat is iffy then it only takes a bit of fat to cause problems, marginal differences becoming important.

It was worth persisting and getting that second opinion - that would be my advice to people approaching this issue.

thanks!

Thank you for your thoughtful reply Kath. I still think the incisor filing sounds credible because moving my jaw forward a little, makes everything feel better in my throat and face, so it would be interesting to read about some cases. But as you say it might be multiple cause. That's why I want someone to point a scanner at my throat and say "there!". I did ask the medics but they said no. However, I see veterinary ultrasound scanners on Ebay for a few hundred quid...

As an aside, one thing I have found helpful, which I picked up from the journalist James Nestor, who writes about these issues, is mouth taping. I've found that a square inch of surgical tape on the lips makes a difference to sleep quality, even under the CPAP mask.



Kath Hope said:

Ha, that's typical John, as your GP would have been able to give you a good examination.

Regarding the conflicting advice you've been given regarding jaw surgery, that's very difficult. We've come across several people who have had that surgery who say it's very painful, and sadly it didn't cure their sleep apnoea as there's often more than one reason for the cause. I personally would be very careful before going through that kind of surgery and would want very good odds as to the likelihood of a cure. Take a look at some of the surgical options Dr Park addresses https://doctorstevenpark.com/sleep-apnea-basics/surgery-for-snoring...

You sound like me in that you like to get to the cause of things and I have several different reasons for why I have severe obstructive sleep apnoea, but I've resigned myself to the fact that I'm grateful our condition, which can be so serious untreated, can be successfully treated without the need for longterm medication, which almost always have side effects. I honestly wouldn't want to put myself through lots of different surgery without a guaranteed cure, and the only surgery I have had is septoplasty and turbinates reduction which I didn't expect a cure from so wasn't disappointed, but I can breathe better in the masks now.

John said:

Thank you for your reply Kath. Well, I sort of lucked out because my GP was an ENT specialist who started getting into my case but he went elsewhere after Covid came so that was that.
Year ago my dentist wanted to fiddle with my teeth to allow my jaw to move forward. Other dentists and medics disagreed, and I never went for it but am left with the feeling that maybe I should have, and have something fixable, just allowing my jaw forward a fraction - and I thought OK maybe a scan will show if that would work.
What my dentist said was that my bunny teeth were blocking my jaw from sliding forward, and I was heading for TMJ problems. The cure was to file the incisors down and allow more movement. An ENT specialist said this was rubbish and another dentist said it was just for the money, so that just left me with disagreement between people with letters after their names.

So it would be interesting to hear if such a procedure is known to work - reducing top incisors to allow the jaw to move forward.

I haven't got a fat neck, I had to get a second opinion on OSA as the first doctor said my neck was too thin for it. Second doctor said nope thin necks can give it too and he turned out right. But I was wondering maybe if the basic structure of the throat is iffy then it only takes a bit of fat to cause problems, marginal differences becoming important.

It was worth persisting and getting that second opinion - that would be my advice to people approaching this issue.

thanks!

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Oct 5
Kath Hope replied to John's discussion Getting a precise diagnosis - scans ?
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John posted a discussion

Getting a precise diagnosis - scans ?

Hi all, so, OK I got a diagnosis of OSA and was given a CPAP machine.Finding out exactly what the problem is has not proven so easy. By exact problem I mean what the structural problem in my throat is - small jaw, blocked nose, big tongue, fat neck…See More
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