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Hi. I am new here and confused about my diagnoisis
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swilson Offline

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Location: Canada

Post: #1
Hi. I am new here and confused about my diagnoisis

Hi, I am new here and new to being diagnoised with Mild to Medium Sleep Apnea. I was shocked, I didn't expect a diagnois like that. I have been on my machine for 30 days now. I need to make a decision on whether to buy it or not. I don't know whether I really need this machine. How it all started was I was being woken up with this noise. I soon discovered that I could breathe air in through my nose but I couldn't breathe out. My throat felt really wierd and dry. When I lifted myself up on my elbows within about 30 seconds I could breathe normally. My doctor sent me to a specialist. He poked around with his scopes and cameras but nothing seem to stand out. He said a blockage could be caused by any number of things. His office is on the 3rd floor. He sent me up to the 4th floor to get a oximetry to take home over night. I had to wait along time to find out the results. He told me the diagnoisi
s and sent me upstairs again to get a machine. I didn't know what was going on. A nurse told me that since I have good insurance coverage she brought out the top of the line (only 2 machines) from different companies. When she told me the price of the machine I picked was $ 2,100, I said to myself Oh my god. When I picked out the mask she said that's ok, it's the same price. Price!! I did not have enough time to digest everything. Later, I found out something that bothers me. The wife of the specialist owns the company where I have to buy my machine. I think that is conflict of interest. That along with being diagnoised with possibly mild Sleep Apnea (AHI= 1.8, AI= 1.7, CI= .5) I feel suspecious. These numbers haven't changed over the 30 days. I had read somewhere that AHI less than 5 is OK and AI less than 1 is OK. I see on my 2 week summary from my machine that my Obstructive = 1.1. I see on my 2 week oximetry test that my saturation level has become much more normal but my pulse has gone from (62-65) being normal but graph looks almost flatline to a pulse line that is going crazy (56 - 92, mean= 65). I'm confused because I look at some numbers and it looks like I am OK. However, when I look at other numbers it looks worse. For example, my oximetry summary for the night of Feb. 13 (after being on the machine for 2 weeks) states that I had 6 desaturation events that were over 3 minutes. I also had 19 desaturation events of less than 3 minutes. The mean average of events less than 3 minutes but greater than 10sec = 48.8 sec.

Is there anybody out there that is experienced enough to help de-confuse me?
02-29-2012 06:51 PM
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Cutter Offline

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Machine: ResMed S9 Elite
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Sex: Male
Location: Kansas

Post: #2
RE: Hi. I am new here and confused about my diagnoisis
swilson,
Welcome to the Apnea Board! I did not read anywhere in your post that you had a sleep study done, where you spend a night sleeping at a sleep center with all kinds of wires attached to your chest, face, arms and legs with straps around your chest and stomach. They can also video tape you while you sleep. Did you have a sleep study? The AI, AHI and CI numbers that you mentioned sound like numbers while you were receiving APAP therapy. You must have read those numbers from the screen on the machine since you don't have software to download detailed info from the SD card in the machine. Does any of what I said sound about right? I think we are going to need a little more information from you first. Did you have a sleep study and if you did what were the results.

This post is a natural product. The slight variations in spelling and 
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(This post was last modified: 02-29-2012 07:20 PM by Cutter.)
02-29-2012 07:19 PM
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iSnooze Offline
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Post: #3
RE: Hi. I am new here and confused about my diagnoisis
Hi Swilson,
Welcome
Based on what you wrote it sounds as if you didn't have a real sleep study done as Cutter asked above. Did you and we missed it? If your doctor prescribed a cpap machine based solely on a oximetry reading, then something seems amiss. You should have a true sleep study done to see if a cpap machine is the solution for your breathing problems.

You are correct that sending you to his wife for equipment does seem like a conflict of interest but it might not be. They might be part of the same HMO or something similar. My mom worked for a doctor's office and the office was owned by some big health company. The docs had to refer their patience to other people in the organization unless there was no specialist available. It was part of the doctors' contract, I believe.

The price of the machines through a DME (medical equipment supplier) is very high but it is because insurance reimburses a big chunk. After I had my machine I discovered that the inflated prices of the DME with insurance paying for 80% of it was still cheaper than me buying it on my own through an online store. A huge difference is that I have someone I can visit and talk to face to face if I have a problem with my machine or my mask.

Is it possible for you to get a 2nd opinion?
02-29-2012 08:04 PM
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swilson Offline

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Post: #4
RE: Hi. I am new here and confused about my diagnoisis
(02-29-2012 08:04 PM)iSnooze Wrote:  Hi Swilson,
Welcome
Based on what you wrote it sounds as if you didn't have a real sleep study done as Cutter asked above. Did you and we missed it? If your doctor prescribed a cpap machine based solely on a oximetry reading, then something seems amiss. You should have a true sleep study done to see if a cpap machine is the solution for your breathing problems.

You are correct that sending you to his wife for equipment does seem like a conflict of interest but it might not be. They might be part of the same HMO or something similar. My mom worked for a doctor's office and the office was owned by some big health company. The docs had to refer their patience to other people in the organization unless there was no specialist available. It was part of the doctors' contract, I believe.

The price of the machines through a DME (medical equipment supplier) is very high but it is because insurance reimburses a big chunk. After I had my machine I discovered that the inflated prices of the DME with insurance paying for 80% of it was still cheaper than me buying it on my own through an online store. A huge difference is that I have someone I can visit and talk to face to face if I have a problem with my machine or my mask.

Is it possible for you to get a 2nd opinion?
Sorry if I have done this wrong. How the thread works is not intuitive to me. When I reply, do I erase what is in the box?

I was not sent for overnight stays. I know what you mean. Many years ago, I did have over night sleep studies, wires included. I was diagnois with having repetitive limp movement. This time, live in different area, different doctor, etc. like I say, I was referred to this specialist and what he did was poke around inside my nose, put these long scopes and cameras through my nose. He told me to go upstairs and get the overnight oximetry machine. I did this same test 2 weeks later. Even though I am suspicous I am really glad that I got caught up into a Dme rather than buying online. I have been calling them with questions and even went in to change the size of nasel mask. It is worth the extra money. Could you tell me how to reply to messages?
02-29-2012 08:42 PM
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JudgeMental Offline

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Sex: Male
Location: Florida USA

Post: #5
RE: Hi. I am new here and confused about my diagnoisis
HI SWilson..Like others have posted, I think we need some more info for any of us to offer much meaningful help.. You didn;t say just how long those difficult breathing situations have been going on. Could they be some type of anxiety or panic attacks? Have you been under a lot of stress? It does sound like your airway was closing forcing you to exhale thru your mouth. That would be the cause of the dry and weird feeling in your throat. The noise you mentioned sounds like a snore on your exhale.
Did you have an overnight sleep study? and if so do you have the results from it. Was the Doctor a sleep specialist?
You pressure settings that you show in your signature is a rather broad range also, however your AHI is really very good. Especially if they have held steady for the past 30 days.

Yesterday is history; Tomorrow is a mystery; Today is a gift; Thats why its called "The Present".
02-29-2012 08:47 PM
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zonk Offline

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Post: #6
RE: Hi. I am new here and confused about my diagnoisis
(02-29-2012 08:42 PM)swilson Wrote:  
(02-29-2012 08:04 PM)iSnooze Wrote:  
Sorry if I have done this wrong. How the thread works is not intuitive to me. When I reply, do I erase what is in the box?
If you don,t want the quote just go to the last post and click on New Reply.

If you,re not insured, online prices are much cheaper than DME prices.

You should be able to return the mask within 30 days and try another one.
02-29-2012 09:06 PM
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swilson Offline

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Post: #7
RE: Hi. I am new here and confused about my diagnoisis
After being on the machine for 2 weeks I had to pick up the oximetry machine and use it along with the CPAP machine over night and bring both machines into their office the next day. The nurse that was there took the memory card and put it into her machine. She looked at the results and basically told me to carry on. I asked her for a copy of the results. So I have a paper copy of a summary from the CPAP machine. It contains Device settings, pressure, leak, AHI & AI events per hour, and usage. I could not get a copy of the day to day results unfortuneately. I also have a paper copy of the graphs of the 2 different oximetry tests. I also have a paper copy of the summary report for the 2nd Oximetry that I did. That report gives me highest, lowest and mean pulse rates, highest, lowest, and mean saturation rates, how many events and how long they were. I hope this can give you a better understanding.
02-29-2012 09:29 PM
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Cutter Offline

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Location: Kansas

Post: #8
RE: Hi. I am new here and confused about my diagnoisis
swilson,
The problem that the members of the forum have is that you don't have AI & AHI numbers for sleep without the APAP. Those numbers indicate the severity of the patients sleep apnea. For example, if your untreated AHI was less than 5 events per hour, you would not be diagnosed with sleep apnea. If your untreated AHI was greater than 5, you have sleep apnea. If you are diagnosed with sleep apnea, put on CPAP therapy and your AHI is less than 5, then the therapy is working. You probably need to have your Dr. explain why you have been diagnosed with sleep apnea and why he prescribed APAP therapy for you. It is possible that he prescribed APAP therapy for a different condition of which you are unaware. Otherwise, what you have described does not fit the standard testing and diagnosis for sleep apnea.

This post is a natural product. The slight variations in spelling and 
grammar enhance its individual character and beauty and in no way 
are to be considered flaws or defects.
 
(This post was last modified: 02-29-2012 09:52 PM by Cutter.)
02-29-2012 09:50 PM
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swilson Offline

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Machine: Remed S9 Autoset
Mask Type: Nasal mask
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Sex: Female
Location: Canada

Post: #9
RE: Hi. I am new here and confused about my diagnoisis
OK thanks. The next time I see the specialist, I will be asking him alot of questions.
02-29-2012 10:33 PM
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archangle Offline
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Post: #10
RE: Hi. I am new here and confused about my diagnoisis
Welcome to our group, swilson.

If you didn't have a sleep test, it sounds like those numbers are with treatment. If so, those numbers indicate you aren't having much apnea when you are using the CPAP machine.

Did you pay $2000 out of pocket for the machine, or just a copay for your insurance?

Normally, they want to do a PSG sleep test where they measure you without CPAP, but that test costs money. The oximeter tells them something, but it's not as good as a real PSG sleep test. That doesn't mean they did the wrong thing. The sleep test may very well cost more than a CPAP machine, and a lot of people don't sleep well enough in the lab for the test to mean much.

It's encouraging that they're looking at your data and studying it. It will record a LOT of data. You got a VERY good machine. Lots of people get stuck with junky machines that don't record data. If your doctor is really monitoring the results properly, it might be better than most doctors who just get the PSG and then ignore the CPAP data.

You can look at the data yourself if you get a free, open source program called SleepyHead.

How are you feeling since using the machine? Are your symptoms any better?
02-29-2012 11:56 PM
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