Tired, Confused, & Frustrated by the wait

[SleeplessinSharon]

Hi Everyone,

I am new to this and was wondering if you experienced folks could shed some light for me? I had my Polysomnography Study on July 24, 2006. It took 5 weeks for the results to come back to my doctor, who told me I had to go to a sleep specialist because the results were Severe mixed sleep apnea-hypopnea sith impaired sleep quality. Yesterday, Sept. 13th I went to a Sleep Specialist/Neuroligist/Pulminologist who told me that I had the same thing my dr told me, but with these details. 48 episodes of central apnea, 22 episodes obstuctive apnea, & 197 episodes of hypopnea. The RDI was 50.5. The lowest oxygen saturation was 81%. My REM latency was 129.5 minutes for a total sleep time of 317 minutes. My frustration is now i have to go and have another sleep study with CPAP, and possibly dead space, and oxgen. The first appt. available was Oct 18th, followed by 3-5 week wait for results again, and another follow up with a sleep specialist to get the RX for a machine that will hopefully help me to start getting some rest. All this in a 4 month waiting period as I continue to keep my wife awake at night, and only grow more tired. Is it normal to have to wait this long for treatment from start to finish? The whole dead space/oxygen thing is really bothering me, as I now have been told I may have to install a tank in my house if the test shows I need it. This seems like a lot to go through to get a good night sleep, but iI hope it is worth it in the end. Any light anyone can shed to make this process easier would be graetly appreciated.

Thanks,
SleeplessinSharon(Male, 39)

[Jere]

I was pretty frustrated with the several weeks lag from initial doctor appointment to sleep study to next doctors appointment to review results to - finally - getting an RX for the gear and then starting the process of dealing with getting the equipment from the DME. The whole process took me from May to August. The only thing I can suggest is to just keep calling and see if the doctor/sleep lab or DME, as the case may be, has a cancellation.

Good luck and welcome to our world.

[Snoredog]

I had my first PSG at the end of December and it took until June to get my machine, that was many years ago before they got busy.

You need to continue with the titration study (if they are suggesting dead space mask) they sound up to date on a CSDB (Complex Sleep Disordered Breathing).

This is a mix of both central and obstructive apnea and sometimes both at the same time. There are new therapies they are now trialing which appears to have pretty good results.

Search for CSDB here and on the internet to find out more about it. The machine you will need is a ASV (adaptive servo ventilation).

I think your doctor was right on sending you to a specialist if you have CSDB.

[krousseau]

Is that Sharon, Pennsylvania? I am from western PA too. A bit older though.

Unfortunately the good sleep labs have a waiting list. You might try telling them to call you when they have a cancellation-if your work allows that flexibility and you live close enough. Lots of times the docs just refer you and since they have so many patients don't track when the appointment is. So do call and let the referring doc know about the long wait-remind him/her that you were diagnosed with severe CSDB and are concerned about the long wait-and see if he/she can lean on them or tell you anything you can do in the interim.
While you are waiting read about CSDB, look at the monitoring software, look at masks and machines. Come to this forum and ask about the different machines likely to be used-there are some very knowledgable people on this forum. And learn the first rule BE PROACTIVE.

[kteague]

Just some sugestions to possibly expedite scheduling and getting results. I've used 2 different sleep clinics and my 5 tests were scheduled both within days and up to 7 weeks out. My full results have always been ready in about 2 weeks, with the preliminary diagnosis available in 2-3 days. After a titration study, I picked up my machine in 2 weeks. Guess I shouldn't complain.

I am sorry that clinics are so busy, but it is not acceptable to make a diagnosis of a potentially life threatening condition and not provide treatment for weeks or months. When scheduling the test and you're given a date way out, ask for the name of another clinic that might get you in sooner. If they lose you for the study, you're lost on the equipment sale also, so just asking may give you some leverage. Ask up front when the earliest will be that they can assure availibility of results, machine, etc., then ask them their name. If you don't like the answer, ask if their staffing shortage will be resolved before your test date.

Filling in on a cancellation is a good suggestion. Have done that for other procedures. If you call them a couple times a day, they may have just hung up from that cancellation call and give you the spot because it saves them another call. Keep your name foremost on their mind, short of being offensive.
Kathy

[WillCunningham]

I think those are great tips. I don't have much to add, I just wanted to sypmathize. My doctor was almost postitive that I had sleep apnea so he scheduled the sleep study. It took forever to get the appointment....then it took an equally long time to get the results. Thankfully it only took a few days to get a machine after the results. That process happened while I was at the end of my rope sleep-wise. I really do wish that the process had been faster so I could have felt some relief earlier. I was so tired at the time I didn't even think to try and get in earlier or at a different sleep clinic. I would have gone a few states over if needed to get it done faster.

[gaggy]

I am new to this sleep apnea but this site has been wonderful. When I had my sleep study, I was totally dumb. Asked no questions and really didn't know what the dr was talking about. Now you bet I am informed especially after reading the posts for the past weeks. Here is my story of a sleep study. I think I am very forunate. I went to the pulmologist on a Thurs and was told I need a study asap because of my oxygen levels being so low. This was after seeing 3 other drs and other tests that month. Well they set up an appointment for the sleep dr for the next day because of a cancellation. The next day was Friday and I saw the sleep dr . They set up a split study for that Mon., on Tues morning the dr came in and went over my results and I saw the RT after he left and came home with a rental machine and mask to see if I could tolerate it. I went through 3 diff masks and getting put on Ambien. My dr office is wonderful, their RT called to check on me every couple of days. They wanted to make sure I was adjusting. Orig study was done on 8/1 and follow up visit to back to my doctor was 9/7. I now have my new machine and I believe I am going to have a life now. Yea.

[KimberlyinMN]

I must have gotten lucky. I saw my regular doctor on July 26th mainly to get a prescription for an epi-pen and blood thinners for our vacation and happened to mention the sleep apnea symptoms. He referred me to the Sleep Center and said they'd call me. The next week they called and we set up an appointment for Aug. 13th. They called me with my results on Aug. 24th to set up an appointment the next day (Aug. 25th) and that's when I got my machine. Less than a month from start to finish. Well, I guess not really "finish" since it's a new beginning with the love affair with my CPAP machine. Then again, I live near Fargo, ND AND they have two sleep centers.

Kimberly

[Bookbear]

Nothing much to add, either, except sympathy. Your experience is not all that different from what most of us experience (in my case, 6 months to the day from when my doc started the process for a referral for a sleep study to actually having the machine in hand). I WAS lucky in the respect that I got in on a cancellation for the sleep study, or it would have been at least a month longer. As was pointed out, if your schedule permits (do your best to make it so, btw), have the sleep lab call you for ANY cancellation they might have. I was told that cancellations are fairly common...family emergencies, work emergencies, even tranportation problems. I told the sleep lab I could be there with as little as two hours notice. Fortunately, it worked out for me.

Good luck!

[jnickellrental]

I called my sleep therapist and doctor almost every day until I got to each step. I would only go a day without talking to them. I wasnt mean, just following up to see if there was anything I needed to be doing. Its your health fight for it!
Josh