Just diagnosed

[wolfie]

Hi Folks
I was diagnosed as having severe OSA on Wednesday at UH Walsgrave in Coventry, as you might guess it has raised a few questions that I hope you kind people will be able to help me with.
When I say diagnosed, the lady that downloaded the data from the monitor I wore the previous night said it looked like I had severe OSA. There were certainly some very pretty patterns on the graphs & charts that she was looking at.
Anyway she said that the consultant would have to see the results & he would probably recommend CPAP, however they would have to do another monitoring to establish correct pressures etc.

Any idea what that involves?? (I did ask but she was pretty vague)

I'm quite comfortable with the idea of CPAP & dont really have any concerns regarding the equipment, I can see from this forum that it is successful & I'm looking forward to a decent nights sleep, as is my wife!

The only two questions I have at present (I'm sure there will be many more!) are regarding driving & surgery.

I'm a sales rep & drive around 40k miles per year so I'm a bit concerned about losing my licence, even for a short time.
From the research I have done it appears that I should inform the DVLA as soon as I'm diagnosed but its pretty vague & open to interpretation.

http://www.dvla.gov.uk/media/pdf/medical/aagv1.pdf just says:

Including Obstructive Sleep Apnoea syndrome causing excessive daytime / awake time sleepiness, Driving must cease until satisfactory control of symptoms has been attained, confirmed by medical opinion.

Does that mean you dont have to tell them if you dont get tired in the daytime?

Also this document:
http://www.dvla.gov.uk/media/pdf/leaflets/inf159.pdf says:

It may take some time to complete our enquiries. You are therefore urged to seek specific advice from your doctors or specialists about whether or not you should drive in the meantime.

Any advice on what the best course of action is? As you can see there is an obvious contradiction between the two documents, I've read the dvla thread but I'm still unsure what response I will get from the dvla.

My other question is regarding surgery as I have an appointment with an ENT doctor on Saturday regarding this. Is surgery an option for OSA?

Sorry for the length of the post (I'm in sales so always tend to ramble)

Thanks for listening

[James @ Intus]

Welcome to the forums!

Hi Folks
I was diagnosed as having severe OSA on Wednesday at UH Walsgrave in Coventry, as you might guess it has raised a few questions that I hope you kind people will be able to help me with.
When I say diagnosed, the lady that downloaded the data from the monitor I wore the previous night said it looked like I had severe OSA. There were certainly some very pretty patterns on the graphs & charts that she was looking at.

You did a pulse oximetry test. It's the most used way to diagnose straight-forward cases.

Anyway she said that the consultant would have to see the results & he would probably recommend CPAP, however they would have to do another monitoring to establish correct pressures etc.

Any idea what that involves?? (I did ask but she was pretty vague)

It's called a titration. They put you on an Auto-CPAP (APAP) for a fortnight and the machine will work out which pressure you need. They take the APAP back and give you a fixed pressure CPAP at that pressure.

An alternative would be to get your own APAP.

I'm quite comfortable with the idea of CPAP & dont really have any concerns regarding the equipment, I can see from this forum that it is successful & I'm looking forward to a decent nights sleep, as is my wife!

It works wonders! We look forward to helping you through the process as we've done successfully with many others.

The only two questions I have at present (I'm sure there will be many more!) are regarding driving & surgery.

I'm a sales rep & drive around 40k miles per year so I'm a bit concerned about losing my licence, even for a short time.
From the research I have done it appears that I should inform the DVLA as soon as I'm diagnosed but its pretty vague & open to interpretation.

Does that mean you dont have to tell them if you dont get tired in the daytime?

You should tell them the moment you have confirmed OSA (when the consultant, not the nurse, tells you). By the time they process your letter, most likely your license will be suspended until you are on CPAP and they received confirmation you respond well to it. Because of this, it's important to either get that trial or your own kit asap. Some people choose not to inform the DVLA, risking the £1,000 fine and that's your call. Just make sure you understand that if you decide to drive you are a risk to yourself and others. More poeple are killed by sleepy drivers than drink-drivers so bear that in mind.

If you get equipment immediately after the official diagnosis, you can just tell the DVLA you have OSA and that you are being treated successfully. In that case nothing will happen. The problem is only if there's a gap between diagnosis and treatment.

Any advice on what the best course of action is? As you can see there is an obvious contradiction between the two documents, I've read the dvla thread but I'm still unsure what response I will get from the dvla.

I'd find out when you can expect your trial. If not in a hurry or if this is crucial to you, get your kit asap.

My other question is regarding surgery as I have an appointment with an ENT doctor on Saturday regarding this. Is surgery an option for OSA?

It is but with a massive caveat. Every considerate ENT will tell you it should be the last resort. I've read too many horror stories where the throat was lasered away, people couldn't talk or swallow for weeks, drinks would come straight out again. Really, try CPAP first. You don't want to do irreversable damage if it turns out CPAP or oral appliance therapy can work it out for you. Surgery has the lowest success rate and more often than not, the symptoms come back after a year or two. I would not recommend it to anyone.

http://www.google.co.uk/search?hl=en&q=apnea+surgery+horror+stories&btnG=Search&meta=

There's only a small chance CPAP doesn't work for you. If so, by then you can always resort to more drastic measures.

[wolfie]

Hi James
Thanks for the reply & words of encouragement, I will keep this thread updated as I progress down the SA road.
As I have not formally been diagnosed yet I'll leave informing the DVLA until I know for sure, in the hope I can get some treatment at the same time.

If the Walsgrave are slow at issuing a machine then buying my own is very much an option.
If I've got this correct, an APAP is a more advanced CPAP?

Saw the ENT doc today, he wants to whip my tonsils out, saying it may or may not help but it can't do any harm. He said there is a lot of lymph material in there so it would be worth sending off to histology for testing. I said are you looking for the dreaded 'C' word, he said it is highly unlikely to be that. Still spooked me tho!

[James @ Intus]

An APAP is an AUto-CPAP so yes, more advanced because it has extra sensors to measure which pressure is needed.

A CPAP is like a vacuum machine set on blowing. It's constant at one pressure.

An APAP will monitor your throat's ability to let air through and if it sees collapsing of the throat, it will up the pressure to prevent an apnoea event from happening.

As far as tonsils go, it's indeed often the first thing they rip out and it may alleviate some of the snoring but is unlikely to ever take care of sleep apnoea entirely. The tonsils play a role in your natural defense system, ripping them out may defeat the purpose of improving your health.

Once sleep apnoea is taken care of, your body will be less inflamed and more capable of taking care of itself. Who knows, the lymph material may also reduce.

As you can hear, the ENT is not confinced his suggestion will work. With CPAP success over 80%, I and many others feel it should be the first attempt, surgery the last.

[PIPKIN]

hello wolfie,
Some words of advice -dont tell the DVLA until you have started cpap therapy and your responding well to it- if you tell them before you get your gear they will suspend your license straight away.
I left mine 7months after being diagnosed and when i did inform them they replied in 8 days saying the license was fine,

As for apap its much better it changes the pressure through the night as you need it ,the nhs will only give you a fixed pressure machine and you will have to keep going back in to have the pressures titrated .
If you are going private for your gear you have Resmed at Coleshill who loan/sell cpap equipment very good service and pretty near for you if your from coventry way.

[wolfie]

Thanks James
I think I'll hold off surgery until I've got established on CPAP & see how things settle down. Thanks for the heads up on APAP, even tho I have no experience of these machines, like many blokes I love gadgets so I already want the biggest/smallest most powerful one, with the most amount of buttons & lights!

Seriously tho, I'll wait to see what the hospital offer & if it doesn't suit my needs I'll buy one.

Pipkin
Thanks for the advice, I'm going to stall telling the DVLA as long as possible, as you say until I'm under treatment.
How does titration work? I guess they have to keep adjusting until they get the pressures just right or do the CPAP's drift out & have to be adjusted?
Coleshill is 15 mins from me.