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Unhappy With Results/Treatment
Hi,
So my first post here.
I was refereed for a sleep study in May this year. I have had two sleep studies (both at home); a two night finger oximeter and one night Respironics Alice PDx test. The Alice PDx test wasn't a very good representation of a nights sleep, because I couldn't fall asleep on my side like I usually with the box strapped to my chest.
I finally got to see the consultant today for the results and I feel as if I have been fobbed off.
She said I don't have OSA, but do under-breath and stop breathing in my sleep and said I should spend £150+ on a dental device thing (I don't think the device would work very well, because it would probably put quite a bit of pressure on my teeth, which aren't great) and I was discharged straight after that.
I walked out of the place in disbelief at the fact she gave the impression that I wasting her time as soon as I walked into the room.
Tom. :)
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Replies to This Discussion
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Permalink Reply by Kath Hope on
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Sorry to hear about this Tom. Were you actually told what your AHI is (how many times per hour you have apnoeas/hypopnoeas)? I would want to know this because you say you had a pulse oximeter study at home, and I'm assuming this did show oxygen desaturations and why you then went on to be given the Alice PDx test. It could be that the study only revealed Mild OSA. However, CPAP is still the recommended treatment and I quote from the NICE Guidelines here
"CPAP is only recommended as a treatment option for adults with MILD OSAHS if:
they have symptoms that affect their quality of life and ability to go about their daily activities, and
lifestyle advice and any other relevant treatment options have been unsuccessful or are considered inappropriate."
I myself would be very wary about using a dental device and especially with you saying you're teeth aren't great. I am currently only just recovering from a week of hell after using a dental device. My dentist has revealed via xray that I have a dental cyst (I have never known pain like it and a week later am still on antibotics and pain killers) and it is not clear whether the device caused it or aggravated it if it was already there. I have now been referred to maxillofacial as this needs removing, which scares me stiff!!! However, whilst using the device for a week I was able to see evidence of whether it was actually improving anything for me via my CPAP machine's software, and it certainly did NOT cure my OSA (I never expected it to though). We were hoping it would help get my high CPAP pressures lowered, and at first I did think it was achieving this. However, when looking deeper into the stats there were other nights where I had reduced pressure without the dental device!
Did the hospital agree to give you a further sleep study with a dental device in position to prove whether or not it was helping? It is very important people have a further sleep study with the device because a cease of snoring does not always mean a cease of apnoeas/hypopnoeas.
What were your symptoms as to why you investigated the possibility of sleep apnoea in the first place Tom?
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Permalink Reply by airbusA346 on
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Hi Kath,
Thanks for replying, I think she mentioned 30 episodes while using the Alice PDx. I think it was switched on for about 6 hours, but I spent at least 1 hour trying to get comfortable, and I was awake for at least 30 minutes in the morning before I gave up trying to sleep and got up.
There was no mention of another sleep study with the dental device. And in my opinion it would have been quicker and easier to do a sleep study in the hospital, instead of 3 at home.
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If 30 was mentioned and we assume here that you got 4 hours sleep, then that would calculate an AHI of just of 7. However, this will depend on the depth of your sleep too, as if you didn't go into REM sleep then it won't be an accurate analysis of your normal sleep. If you are suffering daytime sleepiness and feel that you do have sleep apnoea, then I would ring the hospital and explain all of this and ask for a further sleep study. If they won't do this I would then get a referral to another hospital for a 2nd opinion.
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I have just rang the hospital to discuss yesterday's consultation and it sounds like because I don't appear to be a simple OSA case, they are worried about funding. The woman I spoke to is going to speak the consultant to see if she will agree to me having a CPAP trial. Also she kept mentioning CPAP being more intrusive compared to a dental device, but as far as I am aware, I am a mouth breather, so wearing a dental device would be quite uncomfortable in my opinion.
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I suspected this was the case Tom, and if the true figures of people with OSA suddenly presented themselves to our sleep clinics the NHS would not be able to cope! This is why we need the NHS to realise just how common and serious untreated OSA is, and how they would save a lot more money elsewhere in the NHS by treating everyone with OSA. Heart attacks, strokes and motor accidents are the top 3 they would save money on, but there are many other conditions linked as well.
Hope you get the CPAP trial and let us know how it goes please.
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If I do get a trial, I can just imagine them being very unaccommodating with regards to different masks etc. From what I have seen lying around in the department, they have SystemOne CPAPs, Nippy 3s (who ever gets them) and Resmed masks I think.
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Sounds good Tom, and good luck in getting a trial. Even a lot of people without OSA who have UARS often get good results in how they feel once they start on CPAP. Unfortunately, not all hospitals treat UARS (Upper Airways Resistance Syndrome). Hope we hear good news from you soon
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Kath Hope said:
Sounds good Tom, and good luck in getting a trial. Even a lot of people without OSA who have UARS often get good results in how they feel once they start on CPAP. Unfortunately, not all hospitals treat UARS (Upper Airways Resistance Syndrome). Hope we hear good news from you soon
Interesting... I have never heard of UARS.
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UARS is also common Tom (although even less known about than sleep apnoea). Unfortunately, it gives the same symptoms as sleep apnoea, but because a diagnosis of sleep apnoea doesn't show up people are simply told they don't have sleep apnoea and are sent on their way to continue suffering
Some clinics do treat UARS, but many don't! There's a free download here on Dr Park's website all about it http://doctorstevenpark.com/free-tired-of-being-tired-report
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From reading things, it does sound like my issue could be UARS (doubt the consultant would even consider that).
I was told I had a throat narrowing of 4 (the woman I spoke to on the phone yesterday, did say a name being with M, but I can't remember it). 4 was the narrowest on the diagrams I think, but she (the consultant) was a few metres away from me when she looked, so she wasn't really paying much attention and probably wanted me out of the room as fast as possible.
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Could be UARS Tom, but could also be mild or moderate OSA. See if you can find out your AHI on the sleep study is if it's mild and symptomatic then you should be given a CPAP trial. As I said above, some hospitals are willing to try people on CPAP for UARS too. Let us know how it goes.
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So I have just had a call from the hospital. The consultant has looked at the results again and will not consider a CPAP trial and a dental device is the only way to go, treatment wise in her opinion.
The woman on the phone also said the DVLA would have to get involved if I had a trial (even though I never suffer from tiredness when driving).
So I am rather disappointed at the moment. :(
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