Sleep Center Follow Ups

Thor's Dad · Post by **Thor's Dad** » Tue Apr 12, 2005 2:47 pm

I was just curious about the quality of follow up by the various sleep study centers. I haven't been very impressed with my situation. I have been on a CPAP for 2 years. I've had 2 official followups with a doc. And I've complained about continued tiredness but there was never an attempt to do a second study. I use my CPAP EVERY night. I did go back to the clinic for a visit to check how my mask was doing but the tech seemed more interested in pushing other mask options.

LDuyer · Post by **LDuyer** » Tue Apr 12, 2005 3:12 pm

Hi,

And welcome!

Have you talked with your doctor recently about this? Is the doc a GP or a specialist? Also, you're located in Virginia. Would you mind saying where? Someone in your area might be able to help. There are a few people here from Virginia. The more we know, the better we can help.

And yes, a lot of people have problems getting good help with their treatment. But maybe you can get some pointers here from people.

Linda

Thor's Dad · Post by **Thor's Dad** » Tue Apr 12, 2005 3:21 pm

Thanks Linda,

I live in the Mecca of sleep centers - Charlottesville. I saw a specialist. Just not impressed with their follow up procedures. I am still using an Activa Miraga mask with the active cell. I really like it. But the tech checked the pressure and told me she thought it was leaking. There's a long story here. I sleep with my CPAP every night but I'm just not certain that I'm getting all the benefit possible. My wife tells me that she hears me "popping" my mouth and even lightly snoring with the mask on. On another note it took me 5 years to convince my GP that I had a sleep problem. My wife kept telling him that I stopped breathing at night. So he would send me home with an O2 monitor which of course showed nothing. She finally threw a fit.

LDuyer · Post by **LDuyer** » Tue Apr 12, 2005 3:27 pm

Can you tell us what kind of cpap machine you have? Also, what was the result of your sleep study? What type of prescribed pressure. These won't necessarily help us to help you, but you never know, especially with more knowlegeable people here, they may be able to help.

Don't know anyone here from your area, but you're right, there must be a lot of help there. Do you think you might need another doctor? I'm sorry, I'm not much help. But it seems to me you're not getting what you need, if you're still snoring or if your wife still thinks you stop breathing. If it's not the mask or maybe you mouth breathe, then there must be something else going on, and it makes me mad your doctor can't help.

By specialist, do you mean your GP? I have a pulminory doctor.

Linda

nodding off · Post by **nodding off** » Tue Apr 12, 2005 4:03 pm

Hi Thor's Dad,
Welcome to our little group! From what you are saying you are experiencing what many of us that participate in this forum have. What I did (and I'm not alone) is take responsibility for my treatment, as I'm the one who has the most to lose. I got an APAP and the software to go with it and use it to make sure I'm getting proper treatment. It does better than the lab! I just had a re-titration study (my first since 1995) and they recommended raising my pressure from 10 to 14. The AHI on my sleep study was 12 at the higher pressure. My auto runs anywhere from 11-15, depending on the night, and my AHI is averaging under 10. I bring my GP in the reports (I fired the incompetent bum who called himself a sleep doctor 7 yrs ago after my good doc moved to RI) and explain them to him. He is very supportive of me and helps me with the DME battle.
Also, if your wife says you are snoring or mouth breathing, that will radically affect the quality of your therapy. You may want to consider a full face mask, or a chin strap or taping your mouth at night.
Good luck!

rested gal · Post by **rested gal** » Tue Apr 12, 2005 11:48 pm

Excellent advice, nodding off! Of course it sounds good to me, as I'm one of many who took the reins in hand to handle my own treatment with autopap and software.

I couldn't have done it without the message boards to turn to. Nor without the cheaper equipment prices at online stores. Has worked out very well for me....both in treatment and in the pocketbook.

Mikesus · Post by **Mikesus** » Wed Apr 13, 2005 4:13 am

There are a few possibilities...

a) You are not getting enough pressure so therapy is not working (which is why APAP's are a favorite around here

b) you have another sleep disorder.

As you mentioned that you are making "poping" noises out of your mouth, it is possible that you are having a problem with mouth leaks. Do a search on mouth leak, you will find solutions ranging from chin straps to tape...

Thor's Dad · Post by **Thor's Dad** » Wed Apr 13, 2005 8:11 am

Wow! Thanks all for the suggests, encouragement etc.! I have a Fishel-Paykel HC 221 CPAP with heat/cold humidification. My pressure is 11. I do have a very old "sleep angel" chin strap that I use - but its so stretched out now it probably doesn't help. I did purchase another "official" chin strap. Oh I forgot to mention that when I brought this up to my GP initially he sent me to an ENT surgeon who did a soft palate shave and a uvulaectomy - that was pure heck. Of course I didn't know any better and wasn't as adept at checking things on the 'net as I am now. I would NOT do that again. I choke on small bits of food if I breath at the wrong time while I am eating. BTW I have a nurse practitioner in who works with the sleep center. My sleep study results were 69 episodes an hour lasting 5-20 seconds with an minimum O2 level of 82%.

I'm not familiar with the APAP but I'm going to read up on it.

Thanx

Dot · Post by **Dot** » Wed Apr 13, 2005 10:55 am

I was supposed to have another check-up with my Lung Dr on next Tuesday. Yesterday when I arrived home after the 2 hour ride each way with a Brother who goes to the next state (Vermont) to see a better Dr than he had here, there was a message on my answering machine telling me that my appointment was being canceled as my Dr was going on vacation next week. So any answers I was expecting to get from him will need to be put off till a later date. There is another Dr in the office with him, so you would think they would simply ask if i would be willing to see the other Dr. The message also said that I could call to make another appt. in the future "if I wanted to". I would think the Dr would want me to reschedule. Makes me wonder how much he cares about his follow-ups after the first year.
Do they ever do other sleep study follow-ups after you have been using the machine for a year or longer? I just got the new mask a couple weeks ago. It`s more like my first one with the better adjustable head rest featurs. Second mask`s adjustment didn`t fit as well.