Complex Sleep Disordered Breathing: Stanford?

I was in my doctor's office yesterday, talking with another patient. She has sleep apnea, and we were talking about how she is doing on treatment. She has, in addition to OAS, centrals caused by nerve damage. Even on CPAP, she is not doing well at all. She says her dog is waking her up from extended periods of not breathing. Her husband is an abulance tech, and he keeps thinking he needs to take her to the ER. She is doing very badly.

She goes to the same sleep center I do, and I know the docs there are not too keen on the SV machines. They believe they don't work. However, my experience at the clinic is that they may not know how to get things to work. Without this board, and the knowledge here, I may not have been treated at all, much less doing as well as I am. So I am suspicious that she may not be getting the best care where she is.

I have a good relationship with my GP, and mentioned to her that I was concerned about this woman, given what I experienced at the sleep clinic. This confirmed my GP's concerns, and she wanted to know if there is a better place to send this woman. We are north of San Francisco. I have heard good things about Stanford, but don't know enough details. I understand Stanford also has clinics in San Francisco, which would be closer for this woman. I will also pass on contact for this board, but only having met the woman for a few minutes, I don't know if she would or could use it. So, doctor or clinic names would be great!!!

TIA

What a good thing you are trying to do for the lady you were talking with in your GP's waiting room, riverdreamer.

Was also glad to hear your GP is concerned about her, too:

riverdreamer wrote:I have a good relationship with my GP, and mentioned to her that I was concerned about this woman, given what I experienced at the sleep clinic. This confirmed my GP's concerns, and she wanted to know if there is a better place to send this woman.

I've been watching this topic, hoping that someone with CSDB out on the Coast might have a suggestion about a particular doctor or sleep lab with experience in diagnosing and treating either CSDB or centrals. If a specific suggestion doesn't turn up, then Stanford would probably be the place to go.

Perhaps your GP could make a phone call or two to Stanford, asking to speak to a sleep doctor who is experienced with Complex Sleep Disordered Breathing and with adaptive servo ventilator machines.

Or...here's a thought. ResMed's U.S. office is in Poway, CA. Perhaps the GP could contact them and ask which sleep centers in California are currently using their ASV machines to treat Complex Sleep Disordered Breathing.

Just curious if something like an oxygen concentrator would be useful in a case like this.

Hi Rested Gal,

My doctor is the kind of person who sets the tone in her office, where people feel good about sharing what they are going through. I feel really lucky to have her, and to help if ever possible. I just sent an email to her, suggesting she talk with the docs at Stanford. What a good idea to talk to the Resmed people! I hadn't thought of that at all.

john_dozer, I don't know enough of what is happening for this lady to know if O2 would help. She sounds complicated enough that I really think she needs a good doctor who will stick with her through figuring things out. While my GP fits most of that description, she just doesn't have the specialized knowledge needed.

If anybody else out here knows the best place to go, I will pass the info on.

I can't help with a doctor for you but i can reinforce that the right machine can make a huge difference! i was diagnosed with complex sleep apnea and nerve damage from MS is considered to be the culprit. I was given a respironics auto SV for a trial but found no matter what they tried with the settings my AHI was still between 94 and 98- and oximeter showed that my oxygen sats were not dropping as much as without the machine (low 80's rathern than down to 50 without themachine) they cahnged me to the Resmed Vpap adapt SV and mu AHI dropped to 0.4 and AI of 0!!- the machines feel very different and they told me that some people do better with the resmed others do better with the repspironics- i guess the algorythms are quite different and they must fit diffeferent breathing patterns- i'm obviouly a Resmed gal!

your friend could find everything changes very quickly if she gets to trial a different machine- i hope it works outs for you quickly

Thanks, kebsa!

Reading some of your posts is why I knew they should be able to do more for this lady. This board is a gold mine! I just wish someone had a name of a doctor or clinic for her. I know that the sleep clinic she goes to is not very aggressive in problem solving for their patients, because I go there myself. If the woman was someone I knew better, I would push her to get on here, and learn for herself. I didn't feel comfortable asking her for her contacts, so that isn't possible. I did give our GP the url for this board, so it is possible she will get here anyway.

I just HATE seeing people suffer when there is something that could help.

Riverdreamer,

In addition to checking with Resmed, check with Respironics for their Bipap Auto SV. I started out not being able to do CPAP, and the right setting on the right machine has made it possible for me to adjust quickly to therapy.

The fact that I learned from this board to try lots of masks (which I did before my titration) allowed me to start with a mask which worked, and that was a big plus, too.

And of course, software and card reader are a major plus -- does your GP have card readers and software so she could check the woman's card if she doesn't have computer capabilities?

Hi Kiralynx,

I did give my GP the contact for Respironics, as well as Resmed. I figure the more options, the better. I doubt very much my GP has the software. She isn't a specialist in sleep medicine, she is an internist who sends people out for the sleep studies. However, her practice is full of people with complex health issues, and she is aware that sleep is a big part of things. I'll have to suggest that she might want get it, though I don't know if she will have time to learn enough to use it, or not. I am just barely figuring out how less complex issues work, can't imagine yet taking on the really tough ones.

I will remind her about the masks. I wish I knew a little more about the issues the woman is having.

Thanks!