Need some help! Recent Sleep Study Results

[ElleMarie]

I have been on cpap for 3 years and bipap for 7 years. Hx of 100.7 AHI, Restless leg syndrome, and severe insomnia. Lost 100 lbs had retitration, then had a sudden gain of 45 so wanted a new retitration...big mistake.

Went for sleep study and they did not allow me to use my machine, the A/C was broken (I live in Phoenix it was 86 degrees in my room for study)...they allowed me to use my machine for 2 hours before I left but had to throw out all data and start over with new study.

Newest study...2.2 AHI and 5.5 in REM. So he says no apnea. I was not allowed to use my machine (was told I could as we are only retitrating). I awoke numerous times, but they weren't considered breathing events. According to study I NEVER moved from my back (I NEVER sleep on my back and constantly roll from side to side) also study showed I never moved my legs including when I got up to go to the bathroom.

I need some advice, Doc recommends I go 1-2 years without machine and then have a follow up study. I can't imagine doing that!! I don't even read in bed without my machine and even the thought of it makes me want to cry. Any advice?? TIA

[trish6hundred]

Hi ElleMarie,
WELCOME! to the forum.!
It sounds like you have been through quite a bit, but You might consider getting a second opinion.
I don't think that going without your CPAP therapy is a good idea at all.
Hang in there for more suggestions.
I wish you good luck getting your problem straightened out.

[PoolQ]

It all sounds strange to me. CPAP does not cure anything so if you had sleep apnea, you should still have sleep apnea. And recommending going without for 1-2 years I do not understand at all. What is supposed to happen in 1-2 years?

Personally I am not sure what I would do, but I would not accept what is being suggested.
1. perhaps get a different doctor?
2. make sure they cannot tell if I am using my machine and in two weeks tell them that I gave it a good try, but that I was no longer sleeping through the night, falling asleep during the day and getting concerned about driving my car while so tired.
3. tell them that I am confused at the test results and ask them to please explain them

[ElleMarie]

I plan to find a new doctor, but it is so hard to find who is good. I DO believe my doctor WAS good, he was a Phoenix top doc a number of times but the past 2 years he seems to be in decline (he is older and has some health issues) He is also the interpreting doctor and I can't get him to understand that I believe he is being give bad data by the sleep center. (for example, the tech came in twice to say she things she put the cords in the wrong holes, this was for leg movement and mine NEVER moved all night so I believe they were never hooked up properly) The same outfit allowed me to use my mask for 2 hours prior to leaving (but still during recording times) and never noted it in the study results because "they will get in trouble for not following doc orders"

I am very suspicious of the center and likewise the doctor that is reading the results NO ONE can move in the bed and not move their legs, that should be a sign to him that the data is faulty. Uggg, I tried yesterday and today to nap on the sofa, with a humidifier right next to me, with my head very propped up to TRY not using my machine. HORRIBLE, I woke snorting, gasping, and very startled over and over and both times gave up after about 15-20 minutes both days.

ANY sleep doc knows you never encourage someone to go without a machine. So if any of you live in Phoenix, I would love to hear your experiences with docs you love or hate...might as well rule those out. And I will NOT go back to STARS sleep center.

[PoolQ]

I think I would give my insurance company a call and tell them that you are very concerned that you are not getting proper treatment, Tell them what your Doctor has told you to do (1-2 years) and your concerns about the testing facility, along with your attempt to comply with your doctor and the difficulty you are having sleeping. As them for their help, perhaps you will get it.

[srlevine1]

Here is some good news. The famed Mayo Clinic has a sleep center in Phoenix. http://www.mayoclinic.org/departments-ce...a/overview
Mayo Clinic doctors and other staff trained in sleep disorders evaluate and treat adults in the Sleep Disorders Center at Mayo Clinic in Arizona. The Sleep Disorders Center, located at Mayo Clinic Hospital in Phoenix, Arizona, is accredited by the American Academy of Sleep Medicine.

Mayo Clinic doctors trained in sleep medicine, including doctors trained in lung and breathing conditions (pulmonologists), mental health conditions (psychiatrists) and other areas, staff the center. Doctors have expertise and experience treating people who have sleep disorders. Sleep specialists are involved at every stage of your sleep evaluation, from the initial examination and treatment to therapy and follow-up care. Staff in the Sleep Disorders Center sees about 3,000 people each year who have sleep disorders.

Mayo Clinic doctors in the Sleep Disorders Center may work with doctors trained in brain and nervous system conditions (neurologists), doctors trained in ear, nose and throat conditions, registered sleep technologists, respiratory therapists, and others to diagnose and treat your condition.

The Sleep Disorders Center, which is open 24 hours a day, five or six days a week, has six beds available for overnight sleep studies (polysomnograms). You may also have other tests performed to evaluate your sleep condition in the center. The Sleep Disorders Center offers spacious rooms with queen-sized beds, private bathrooms, televisions and Internet access.

[ElleMarie]

Thank you srlevine1, I will see if they are in network. Often Mayo isn't in network for many because they use many cutting edge technologies that many insurance companies are unwilling to pay for. But I will see, they are only an hour from my house.

[srlevine1]

Considering the quality of the first encounter, your insurance company may give you a waiver to go out of network. Also, from some of my friends, it appears that Mayo personnel will try to work around insurance companies if possible. They are the good guys. Hope all goes well. Best of luck.

[Sleeprider]

Considering the history of ElleMari, and the implausibility that she would go from AHI>100 and RLS, to not needing any therapy; is it possible the results were mixed up between two patients undergoing study? Pity the poor person that got diagnosed with severe OSA and RLS.

Elle, the results just seem too improbable. You might want to request a copy of the detailed polysomnography trace and look for your arousals you were aware of, and other patterns you recognize. It really sounds like someone else was recorded.

[ElleMarie]

Doctor's office called today!! He thinks the data is bad. VERY BAD, too inconsistent and is requesting a home study. I have sinus surgery next week so he wants to wait 6 weeks after that to do study. He looked back over the past 9 years of studies (5 of them) and came to the conclusion that this is impossible. He has made me feel way more confident in him and I will stay the course until at least we find out what the home study shows!! Thank you to all that responded. That was scary...1-2 years of utter fear!! LOL