Legal Action? Lawyers Here? Missed Diagnosis

[Timur]

I also know that 5% of patients don't snore.

Sorry for the additional post, but I missed this earlier and am doing a new post instead of editing the earlier one.

No snoring was noted on my sleep study and yet I have moderate sleep apnea.  My husband reports that he has only very rarely heard me snore in the 25 years we've been married. 

Another thing to consider is that you might have UARS rather than sleep apnea. UARS is often associated with low blood pressure. 

You might want to do a search online for  Rachel Combe and read the Elle article she wrote about her diagnosis of sleep disordered breathing. She is really trying to get the word out about UARS (and OSA) in women.  The article contains some interesting info.

[sonicboom]

A very interesting article and read. The emphasis on how one feels during the day over the number of events and arousals is something continually preached on this Board.

[K.L.]

I just scheduled apt. I have no choice but to do it the way the HMO system dictates. Attend a "class" for 45 mins about SA and will be given a home sleep study machine with instructions. It will show AHI, sleep pattern, heart rate. and a few other metrics. I asked what the false neg. rate was and she said "very low." Hopefully that is true. 

I asked if the docs in their "Sleep Apnea Clinic" were board certified in sleep medicine and she said "that's all they do, sleep medicine and pulmonology."  I'd think that an ENT would be involved at some point. For all I know, maybe my problem is caused by enlarged tonsils.

I asked about a lab study. She said if the results of this first pass are "not sufficient," that a different home test will be given. If that proves inconclusive then a lab study will be recommended.

I'd like to think that my case isn't so vague that a home study won't pick it up.

[HalfAsleep]

I had a hospital sleep study, but I have noticed a lot of folks here have home studies. I believe insurance is now encouraging that option. There are plusses and minuses to both. At home, you'll be in your own bed and not get prodded during the night. At the sleep center, I even had to change beds/rooms in the middle of the night! The bed is not your own, nor are the pillows. There are wires EVERYWHERE. You have to get someone to help if you want to go to the bathroom. Not fun.

IMO neither variety of sleep study will capture a normal experience, and every non-sleep-study night is not the same anyway.

I was all worried about verisimilitude too. It turns out, I was right on the mark. But I moved forward.....

My recommendation? Go with the flow and go from there.... Things might even show up that are completely off your radar.

[K.L.]

I can't believe it. The home sleep study failed -- I was not able to fall asleep enough to collect sufficient data. It required a minimum of four hours and was scheduled to automatically shut off at 7 am. Went to bed at 12:30 am. Lie there wide awake till at least 2:15. After which I began dozing off, but kept waking up. Finally at 3:35 got up to use toilet. Didn't have to but figured if I fell asleep, I'd eventually be awakened by full bladder. Returned to bed and still could not truly fall asleep. At 4:20 I gave up and removed the equipment -- not enough time left for any meaningful data since it was going to shut down at 7.  The next availability for the equipment is Nov. 9.   So next time I'm going to get only four hours of sleep the night preceding the next test night. I have no idea why I couldn't fall asleep. However, after I removed the equipment it wasn't long before I finally fell into a real sleep.

[KSMatthew]

I can't believe it. The home sleep study failed -- I was not able to fall asleep enough to collect sufficient data. It required a minimum of four hours and was scheduled to automatically shut off at 7 am. Went to bed at 12:30 am. Lie there wide awake till at least 2:15. After which I began dozing off, but kept waking up. Finally at 3:35 got up to use toilet. Didn't have to but figured if I fell asleep, I'd eventually be awakened by full bladder. Returned to bed and still could not truly fall asleep. At 4:20 I gave up and removed the equipment -- not enough time left for any meaningful data since it was going to shut down at 7.  The next availability for the equipment is Nov. 9.   So next time I'm going to get only four hours of sleep the night preceding the next test night. I have no idea why I couldn't fall asleep. However, after I removed the equipment it wasn't long before I finally fell into a real sleep.

I'm not familiar with the home study gear - what is it?

For the PSG you have electrodes glued all over your head and chest, then a pulse oximeter snapped on your finger, then the tech turns out the light and says, "Get some sleep", then you stare at the ceiling all night until it's over.

[OpalRose]

I had an overnight study done in a hospital clinic setting.  They told me they needed a "minimum" of 2 hours sleep.  They didn't get much more than that.

[K.L.]

It consists of a small unit that's attached to elastic banding that you wrap around your torso under your armpits and snap in place. It detects the rise and fall of your chest. There's another sensor you wrap around your abdomen; it's linked to the main unit. Then there's a wrist reader and oximeter. Then nasal cannula that's attached to the main unit. The entire system measures heart rate, blood pressure, airway, oxygen and calculates AHI.  My HMO recommends lab study only when home studies are indeterminate and SA is suspected. There is no way I could fall asleep, let alone mimic my normal sleeping pattern, in a lab. For starters I find mattresses intolerable and have been sleeping on a sofa for at least 15 years. I recently switched to a recliner; so very comfortable.

[Sleepster]

I find it hard to believe that 4 hours is "needed". Desired to optimize the validity of the results sounds more believable to me.

Next time try a sleeping pill. It's ridiculous that doctors don't prescribe one for every sleep study, to be taken only if needed.

[Sleeprider]

The largest source of error in most home studies is that there is no way to determine if you are sleeping. When you do sleep, apnea are recorded, and through the flow, chest-effort and oximetry channels, there is a reasonable reliability whether apnea is obstructive or central. Anyway, the number of apnea are recorded, then divided by the sleep time to determine AHI. Since the test may be difficult to interpret when you are actually sleeping, the test often assumes more sleep hours (or the entire test period) as the hours of sleep, which greatly dilutes the AHI in people that fail to sleep well.

You were probably right to discontinue the test. The equipment is not that obtrusive, so your problem was more likely general anxiety over the test or insomnia for other reasons. The fact you have slept on couches and recliners for the past 15 years speaks volumes about your sleep dysfunction, and that might be worth discussing with your doctors.

I'm not sure that your strategy of sleep deprivation is the right approach for the next test. That often fails, and you clearly need a longer term strategy of improved sleep hygiene. Given your anxiety, tendency to insomnia and sleep dysfunction, your doctors may recommend a pharmaceutical sleep aid, or may determine you do not tolerate the sleep test environment. In this case, they could recommend a trial with auto CPAP and auto titration to see is this improves your condition. However, it may be hard to obtain insurance coverage without the diagnosis of the sleep study. Be assured, you may still be able to get a prescription, and even without that may be able to self finance the Auto CPAP sourced from someplace like Amazon ($330 to $450 for Dreamstation Auto and Resmed Autoset).

You need to find a way to relax about this evaluation and not get into thinking about the outcome. As hard as it may be, all you have to do is sleep and let the cards fall where they may.