What tests can my PCP run before sleep doc appointment?

[nila]

Hello folks, long time no see!

I finally have an appointment with a sleep doc, a month from now. This will be a one-time visit, and no overnight test. I am very ill, and have to travel out of town to see the nearest sleep doc, so I will probably not be able to return for second visit for at least 6 months.

I am also unable to use a PAP machine due to an ancient back injury. (I worked closely with local DME folks and tried several machines, but can't last 5 minutes on them.)

That said, how can I maximise the usefulness of this visit?

My PCP knows next to nothing about apnea, but is quite amenable to reasonable suggestions. I suppose I should do a nocturnal oximetry? For a week, maybe? What else can I do ahead of time?

I'd hate to have the sleep doc need something I could have tested beforehand, and make me come back in 6 months after I have done it. But like my PCP, I don't know what I don't know .

Thanks for any suggestions you can offer!

[PaulaO2]

An oximeter for about a week would work. But you'd have to download the data each morning because they don't keep the data for more than one recording. Unless it is a model that is plugged into another data logging unit but I doubt that a home model exists.

May I ask why a back injury prevents you from using a CPAP? Not that I am doubting you, I am just curious as to what the situation is. It's not like you sleep on the machine. It is the mask that would be the issue, not the machine. If it is the mask you meant, there are a lot of options out there. Like I said, I don't doubt you, it is the skill of the DME that I doubt.

[trish6hundred]

Hi nila,
WELCOME BACK! to the forum.
What Paula said.
Best of luck.

[PaulaO2]

Sorry, I was in a hurry and neglected to explain.

An oximeter study would be your best bet. It would show your night time blood O2 rate. Dips lower than your norm could indicate several things but foremost would be apnea events. Most oximeters that they let you use for this only hold one night's worth of recordings. As soon as you hit 'record' again, it erases the previous data. You would need to either take it to the PCP each day and have them download it (which I doubt they would be able to do) or you can download it yourself. Even then, my guess is your doc doesn't even have one you can use and you'd have to get it from the local DME (supplier). They could download the data for you each day. More than likely, they will say you only need one night's worth but that would be incorrect. For the best representation, you'd need several nights to use as comparison and to establish trends. You would also need to wear it for an hour or two during the day, so you can see what your waking blood O2 is to also compare.

In our Supplier's List, you can go to Supplier #19 and get a real cheap CMS-50D plus model. It comes with software but your best bet is to download the latest from their website. We even have a how-to guide on how to use the software and the oximeter. You can request a fast shipping so you can get it in before your appt.
http://www.apneaboard.com/wiki/index.php...2_software

Other than that, there's not much else he can do for you. He can rule out other conditions but that's about it.

[nila]

Thanks, Paula, for the quick response! I started to reply right away, but then my appointment showed up early.

An oximeter for about a week would work. But you'd have to download the data each morning because they don't keep the data for more than one recording. Unless it is a model that is plugged into another data logging unit but I doubt that a home model exists.

Ok, cool. Do I need special software? Can you recommend, or does it depend on the meter? Do they just plug in with a USB, or what?

May I ask why a back injury prevents you from using a CPAP? Not that I am doubting you, I am just curious as to what the situation is. It's not like you sleep on the machine. It is the mask that would be the issue, not the machine. If it is the mask you meant, there are a lot of options out there. Like I said, I don't doubt you, it is the skill of the DME that I doubt.

I tried an auto S9 and a couple others. I cannot exhale against a pressure of 4, which is the lowest the S9 can do. I think folks here, at the time, agreed with the S9 that if it is too strong for me then anything would be.

I have a connective tissue disorder, and my diaphragm is messed up, where it connects to my back. A sneeze means I am in bad shape for days .

So, my PCP referred me to the sleep doc to explore alternatives to a PAP. Does that seem like the right thing to do?

---

Hi nila,
WELCOME BACK! to the forum.
What Paula said.
Best of luck.

Aw, thank you!!!

[nila]

Sorry, I was in a hurry and neglected to explain.

An oximeter study would be your best bet. It would show your night time blood O2 rate. Dips lower than your norm could indicate several things but foremost would be apnea events. Most oximeters that they let you use for this only hold one night's worth of recordings. As soon as you hit 'record' again, it erases the previous data. You would need to either take it to the PCP each day and have them download it (which I doubt they would be able to do) or you can download it yourself. Even then, my guess is your doc doesn't even have one you can use and you'd have to get it from the local DME (supplier). They could download the data for you each day. More than likely, they will say you only need one night's worth but that would be incorrect. For the best representation, you'd need several nights to use as comparison and to establish trends. You would also need to wear it for an hour or two during the day, so you can see what your waking blood O2 is to also compare.

In our Supplier's List, you can go to Supplier #19 and get a real cheap CMS-50D plus model. It comes with software but your best bet is to download the latest from their website. We even have a how-to guide on how to use the software and the oximeter. You can request a fast shipping so you can get it in before your appt.
http://www.apneaboard.com/wiki/index.php...2_software

Other than that, there's not much else he can do for you. He can rule out other conditions but that's about it.

Thanks for the more info .

Do you think i could get software from the DME, or download some that works with their machine. My insurance is spotty, but i could probably rent for free from them.

Are there good and bad oximeters? What should I ask for? My doc will probably prescribe whatever kind I want, unless she knows a better one.

[Sleepster]

Nila, I see a visit to a ENT doctor in your future. If CPAP therapy is simply out of the question, and you do have obstructive sleep apnea (OSA), surgery may be your only option.

If you do have OSA and it's mild, perhaps a dental device will work for you.

When you do talk to the sleep doc I'd advise you to be prepared to discuss the particulars of why you weren't able to tolerate CPAP therapy in the past. A good doc can steer you toward better equipment, like maybe a different kind of mask. They are making great strides in equipment options.

[nila]

Nila, I see a visit to a ENT doctor in your future. If CPAP therapy is simply out of the question, and you do have obstructive sleep apnea (OSA), surgery may be your only option.

If you do have OSA and it's mild, perhaps a dental device will work for you.

When you do talk to the sleep doc I'd advise you to be prepared to discuss the particulars of why you weren't able to tolerate CPAP therapy in the past. A good doc can steer you toward better equipment, like maybe a different kind of mask. They are making great strides in equipment options.

Thanks, sleepster.

I don't believe I will be able to use a machine unless the exhale pressure is zero -- which, as I understand it, it not possible with current technology. (Is that right?)

I think it's also unlikely that I can use an appliance, as I have severe TMJ and all the ones I can find pictures of on the net, anyway, exert some pressure on that joint. Or else they require a pressured exhalation.

Do you think I should skip the sleep doc and go straight to the ENT, given that travel and finances are difficult? Not that I want surgery, either... there seem to be no very good answers.

My purpose in going to the sleep doc would be to ask expert advice on dealing with this situation where all the normal options are unavailable. But now I'm wondering if you folks are more expert than my small town sleep doc and I should just save my money.

[PaulaO2]

I also have a connective tissue disorder (ehlers-danlos syndrome, hypermobility type) so I can understand the situation.

From what I understand of how an oral appliance works, no, you will not be able to use one. I don't think I could either due to jaw issues.

Unfortunately, if you cannot breathe against a pressure greater than 4, and if 4 does not stop enough apnea events, your options are limited. There's various surgeries to look into. I doubt they would be a "cure" but they would help.

And yes, go to the sleep doc. It is worth the effort.

Use the oximeter and see how low the O2 goes during the night. Yes, you can get an oximeter from the DME and as long as the oximeter is called a "CMS" with numbers and letters after (like CMS 50D+), you can download the software from Supplier #19. On the left side of their site is a list of links. Click the Manual/Download link. You want the SpO2 Review, probably the version 1.2.

[nila]

Oh, yes, of course, we talked before about EDS . It might be what I have, but I am not sure. The inheritance pattern is wrong.

Did I tell you my 'mono' turned out to be encephalitis? It is why I am so forgetful. I remembered our conversation, and your kindness, but somehow did not connect it to your name yesterday. I feel dumb .

Anyway, thank you so much for the details about oximeter and software . And have a great day!

I also have a connective tissue disorder (ehlers-danlos syndrome, hypermobility type) so I can understand the situation.

From what I understand of how an oral appliance works, no, you will not be able to use one. I don't think I could either due to jaw issues.

Unfortunately, if you cannot breathe against a pressure greater than 4, and if 4 does not stop enough apnea events, your options are limited. There's various surgeries to look into. I doubt they would be a "cure" but they would help.

And yes, go to the sleep doc. It is worth the effort.

Use the oximeter and see how low the O2 goes during the night. Yes, you can get an oximeter from the DME and as long as the oximeter is called a "CMS" with numbers and letters after (like CMS 50D+), you can download the software from Supplier #19. On the left side of their site is a list of links. Click the Manual/Download link. You want the SpO2 Review, probably the version 1.2.