Questions about when to have a new sleep study

joeyv20 · Post by **joeyv20** » Wed Feb 07, 2007 4:36 pm

How do you guys decide when to ask for another sleep study? Or, do you all see docs that make that call for you? I obviously am asking this question based on the fact that I do not have the sort of equipment that provides all the data and feedback regarding my sleep. I have had my machine for 3 years and don't expect to be purchasing a new one soon.

I have been having trouble sleeping the past few months. Since joining this forum I have found hints and suggestions that have helped me to get a better fit for my mask and I no longer wake with leaks. Hubby says I am not tossing and turning all night like I was so, I know it's getting better. However I am still fighting to stay awake sometimes. I don't have that old heavy feeling in my chest like I did before the xpap. I used to feel like I was carrying a weight on my shoulders all day long. Now, I am feeling like if I stayed still and did not keep myself mentally stimulated, I would doze off. I think it may be time to sign up for a new study and wanted to know what folks around here thought, how you all managed, etc. I will be making an appointment with my "new" internist and think you guys might have some good advice. I do intend to speak with him about finding a pulminologist as has been recommended by others here.

Joey

Slinky · Post by **Slinky** » Wed Feb 07, 2007 5:06 pm

Well, Joey, if you truly have the Resmed S8 VIII you have a top of the line machine and it has data capabilities up the ying yang.

Whilst YOU don't have the equipment to access that data (Reslink is beau coup bucks!) a good sleep lab could have and can make use of your data that "might" help you avoid another titration study.

Barring that, especially if you have no or poor insurance, a sleep lab might agree to arranging an AutoPAP loaner to check your titration and determine any changes in pressure(s) that might be needed.

If you have insurance, a lot depends on your insurance company's policy in this regard.

Since you've noticed a change NOT for the better you are wise to consider a new sleep study or at least an AutoPAP titration (two weeks loaner of an AutoPAP). If you end up going the AutoPAP titration tho you want a GOOD, EXPERIENCED sleep specialist evaluating the results!

Unless you have lung problems of some sort you don't need a pulmonologist, you just need a sleep specialist which could be a neurologist, pulmonologist, internist .... "just" a doctor who specializes in sleep medicine.

At least in our area pulmonologists seem to dominate the sleep medicine field followed by neurologists. I got my most thorough, comprehensive sleep evaluation at our local hospital's accredited sleep lab wherein they had two neurologists and 3 pulmonologists, all specializing in sleep medicine. But I got the best follow up care via a local sleep lab run by 3 pulmonolgists who specialize in sleep medicine or in critical care AND sleep medicine.

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joeyv20 · Post by **joeyv20** » Thu Feb 08, 2007 6:24 pm

Hi Slinky,

Please accept my apologies in advance, I do not understand how all the features of this forum work. For instance Quoting a previous post. I will do the best I can, I hope to learn by trial and error.

[/quote]Well, Joey, if you truly have the Resmed S8 VIII you have a top of the line machine and it has data capabilities up the ying yang.

What I know about my machine regarding it's higher level function is that it says VpapIII on the case, nothing else, it has a 9 pin and a 15 pin connection. When I first signed on here I was asked to fill out my profile, I could not find a plain VpapIII in the choice menu so, I asked on the forum and was told that I should use the closest one. How shall I best manage this? Give up using the "forum profile feature" and just write it in? Or is there a better option? Thanks!

Does it sound to you from my description that my machine is as data capable as you suggest? If so, is there something I need to do to get up to speed?

Whilst YOU don't have the equipment to access that data (Reslink is beau coup bucks!) a good sleep lab could have and can make use of your data that "might" help you avoid another titration study.

Dumb Bunny time , How do I know if they can get this info from my machine? And if they can acess this information, how would I make this arrangement? To this point all this apnea/xpap stuff has been my idea. I asked a doc to order the original sleep study, I called the DME's, I asked them what the doc needed to do to order the machine, When, after a year of therapy I felt that it was not working as well as it had, I asked for another study, I called the sleep center and asked them how to write the Rx for the repeat study, I spoke to the doc, gave them the info from the sleep center and they agreed to write it. I knew I likely had apnea (actually I was hopeful that I did as it would mean there was relief available) I was so happy to have the option of the machine and improved sleep that I asked very few questions about any of it. When I did ask questions no one had answers, not the docs, not the DME, it's been pretty clear that I am on my own pretty much here until I find a knowledgeable practitioner (I have been looking for 3 years. I have a new internest that I have seen regarding other issues but have never discussed the xpap treatment/therapy with them. I am gathering information to take with me for a "yearly" visit/physical that I will be scheduling soon. I am working to get all my ducks in a row for that visit. I just picked up recent blood work from a hospital (done for a surgery I had in December). I am trying to learn what I can about xpap now that I have this wonderful forum. I am making notes of all the things that I need to discuss, inform them of or, follow up on. I would be more comfortable if this doc is more informed regarding apnea but I really don't know, it did not really come up much at previous visits. I feel I will be best served if I am knowledgable and can advocate appropriately for myself. I already know a good deal more than I did.

Barring that, especially if you have no or poor insurance, a sleep lab might agree to arranging an AutoPAP loaner to check your titration and determine any changes in pressure(s) that might be needed.

My insurance is quite good and it has paid fully for all the studies, machinery, etc., no problem. The sleep study place rather creeps me out though and I would just as soon pass if I can . It is a free standing center and it's me and the guy that watches the computer, the technician. The room is like a cheap motel and it just is not a comfortable environment. That said, if I go there for another study, at least I will be familiar with the technician, this will be visit 3. Visit 2 did result in a change in pressure, an increase.

Since you've noticed a change NOT for the better you are wise to consider a new sleep study or at least an AutoPAP titration (two weeks loaner of an AutoPAP). If you end up going the AutoPAP titration tho you want a GOOD, EXPERIENCED sleep specialist evaluating the results!

Is the AutoPAP titration as "good" as the full blown study? How will I know if I have a good, experienced specialist? I wish there was some sort of magic I could rely on for all of this.

Unless you have lung problems of some sort you don't need a pulmonologist, you just need a sleep specialist which could be a neurologist, pulmonologist, internist .... "just" a doctor who specializes in sleep medicine.

I have to date, no lung problems of any kind. Just the apnea diagnosis. So I hope to find a "sleep specialist" that my internist feels comfortable working with. This new internist seems to be really well versed for the most part clinically, I am really impressed with his mind and his ability to put things together and to take a good overall look at a new patient that is not a "simple" patient. I come from the school of thought that it must be very difficult to be a doc these days with so much specialization and information. So far I feel good about this doc and he seems to be a good person as well as a good clinician. I would not realistically expect him to be a sleep specialist. I hope he knows of a colleague that he respects in the field practicing locally.

Thanks for responding to my other email. I appreciate it. There is so much to learn. There is so much information here to sort thru.

Joey

dsm · Post by **dsm** » Thu Feb 08, 2007 8:37 pm

Joey,

The VPAP III is a rolls royce when it comes to meaningful data that can be read by the machine. This is one of the few Bilevels that provide airflow ventilation data as well as AHI & AI & HI data (all very helpful). Most provide only one or the other but not both.

All you need is a 'null-modem' cable (9-pin at each end).
A pc with a serial port (9-pin). And the Autoscan software ($100 from any of several online Resmed sellers).

We can help you get it all set up and can explain the significance of the various charts & data.

DSM

joeyv20 · Post by **joeyv20** » Thu Feb 08, 2007 9:19 pm

Thanks DSM!

WooHoo! We have access to the 'puter and the cable, no problem! Can you help me to find the software? This would give me something to work with and to share with my internist (I am hopeful he will have knowledge and know what to do with it or will know someone that will). I do feel sure that he will not try and "fake it" if he is not knowledgeable, in that case I expect he will help me find someone that can help. I hope my trust is not misplaced. I really don't want to return to that sleep center if I don't have to.

The software will also provide me with more information about how I am doing, I feel like I am always guessing about it, I just base things on how sleepy I am. Not very high tech but, it's gotten me this far, which is better than I was. Before xpap I slept thru the movie, Lord Of The Rings! LOL! I actually go to the movies and watch them now .

Thanks so much for the response, I am very hopeful about all of this! Sadly I don't know how to go about finding the software that you mentioned. Any chance you can provide me with more information about how to seek out a supplier?

Thanks again!

Joey