Central Apnea doc or hospital?

[doety]

Hello: So glad to find this place. I posted for the first time yesterday about being diagnosed with central apnea. I use a CPAP with oxygen feed. This is apparently caused by taking Methadone to treat Restless Legs Syndrome. I wish I'd never taken anything to treat RLS -- the drugs only cause horrible problems. Nothing is working.
I got some nice responses. One person told me to look on the Kaiser system for the best specialist. I don't even know how to begin. I would go anywhere in the country to figure out a solution. I'm afraid I'll die soon is I'm not treated.
Is there an excellent hospital/doctor in this country that I could contact? I'm saving my money for retirement, but if I die, it won't help me.

[rested gal]

doety, I can't help with choosing a doctor, but will put a link here to make it easier for people to find your introductory post:

Methadone cause?
topic started by doety - Feb 26, 2011
viewtopic.php?p=571128#p571128

Perhaps someone who reads your initial topic as well as your plea here will have more suggestions.

[Janknitz]

Doety,

If you want Kaiser to pay, you're going to have to stay with a Kaiser specialist in your own region. I can tell you unequivocally that Kaiser will NOT pay for a physician outside of Kaiser or for one outside the region you are in. You must be prepared to pay out of pocket if you go out of the Kaiser system!

As I said, make a list of sleep specialists within your Kaiser region and then start googling. On the Kaiser home page under "locate our services" select "medical staff directory" and "search by specialty". Start with neurology and pulmonology and go to each specialists home page, looking for training and statements about sleep medicine. You may also have to search for each speciality at each and every medical center in your region--a PITA, but worth it if you find that good doctor in the end.

Alternatively, you can post something here like "looking for a Kaiser sleep doctor in the XXXX region" and see if anybody has any suggestions. If you have a good relationship with the sleep clinic at your local Kaiser, you can ask discreetly if they can point you to a sleep doctor who may have some experience with your particular situation. Believe me, the RT's have opinions about these things. A good way to frame this question is "if your mother had sleep apnea, which Kaiser doctor would you want her to see?". If you know doctors, nurses, or therapists that work in other Kaisers in your region, ask them this question, too.

Once you get some names, start googling and learn everything you can about the doctor. You can ask for an appointment and meet the doctor, too.

Kaiser sleep doctors tend to be very busy because Kaiser is pretty agressive about the diagnosis and treatment of sleep apnea. So one telling factor (IMHO) is how quickly you can get seen by the chosen specialist. If it's very quickly, that's a sign that doctor may be a problem, because nobody will go to him or her (this is not so for all Kaiser specialities--it's so hard to get referrals in some specialties that I think the specialsists sit there and twiddle their thumbs waiting--that's been my experience with the pediatric cardiologist and neurologists, for example). But sleep physicians are kept very busy at Kaiser.

[LoQ]

Hello: So glad to find this place. I posted for the first time yesterday about being diagnosed with central apnea. I use a CPAP with oxygen feed. This is apparently caused by taking Methadone to treat Restless Legs Syndrome. I wish I'd never taken anything to treat RLS -- the drugs only cause horrible problems. Nothing is working.
I got some nice responses. One person told me to look on the Kaiser system for the best specialist. I don't even know how to begin. I would go anywhere in the country to figure out a solution. I'm afraid I'll die soon is I'm not treated.
Is there an excellent hospital/doctor in this country that I could contact? I'm saving my money for retirement, but if I die, it won't help me.

List of Some Sleep Medicine Doctors in Denver
Try calling this number: 303-270-2708
Tell them you would like to see one of those doctors (all but Dr. Malik had both sleep apnea and RLS listed as things they treat) other than Dr. Malik--tell them "I have both OSA and RLS" on the phone call.

Tell them you have Kaiser but for this appointment you will be self-pay. See if you can get an appointment with one of those 4 doctors. If you are self-pay, ask them if they will give you the insurance contracted rate.

These look like pulmonologists to me. Pulmonologists are typically excellent doctors. They know their stuff.

[avi123]

doety, I can't help with choosing a doctor, but will put a link here to make it easier for people to find your introductory post:

Methadone cause?
topic started by doety - Feb 26, 2011
viewtopic.php?p=571128#p571128

Perhaps someone who reads your initial topic as well as your plea here will have more suggestions.

rg, there is a problem with your post and it has to do with the fear of doctors of being sued. Your and doety posts might attract lawyers and not doctors.

Why should any physician touch this case in which the patient is blaming docs?

See here:

Doety is blaming docs about: One recent doc said people were using Methadone for RLS and why didn't I try it. I did, seemed fine until it didn't. After another sleep test, another doc said "you've got central apnea. It's caused by taking Methadone. I'll add an oxygen line to your CPAP." So now I have this heavy oxygen concentrator to lug around if I want to travel.

Is doety interested in entering into a legal case or solve her OSA treatment?

Why can't doety continue with Kaiser? And since her case, from the description so far, is a routine OSA case why the doctor needs to be a specialist? Almost any Internist could start dealing with it. Doesn't Kaiser have first class physicians?

If doety davka wants to choose her sleep doc then https://www.cpap.com has a list of such specialists thru out the USA. See it here:

At the bottom of the above link check "Community" and "Find Local Sleep Services" in Denver.

[chunkyfrog]

avi, dear, I believe the OP is feeling 'put off'; and not being well treated--or even treated at all.
The symptoms remaining need to be addressed ASAP--I know any of us would be frustrated to be treated 'like cattle'
and frightened to be uninformed and beset by such disturbing symptoms.

[scrapper]

avi wrote: rg, there is a problem with your post and it has to do with the fear of doctors of being sued. So your post might attract lawyers and not doctors.

I don't see anything in here to criticize "the queen of cpaptalk" over...neither fear of doctors being sued or attraction to lawyers......... Not assisting personally is choosing docs is not in any way a suggestion of fear or lawsuits. I see it more as an educated person realizing his or her own limitations and appropriate role in supporting others.

Avi123 wrote: Why can't doety continue with Kaiser? And since her case, from the description so far, is a routine OSA case why the doctor needs to be a specialist? Almost any Internist could start dealing with it.

Avi123: have you read the other post attached by Rested Gal??? This is hardly routine osa. See the long history, the genetics component, death of a parent for the same problems, the RLS, methadone, med side effects including central apneas, oxygen, living in the mile high city. Please do not chase people away with offensive comments stating this is "routine".

[kteague]

Doety, if you provide a little information here it might help. It's my understanding you are on CPAP for OSA with oxygen added to address the centrals. Is that correct? What is the exact and full name of your machine as written on the machine? The two reasons I ask are #1 to see if it is the kind that treats centrals, and #2 to see if your machine provides data about the effectiveness of your treatment.

Maybe before you go doctor hunting you can gain some information that will help you move forward. I don't want to throw out a lot of suggestions that would be irrelevant based on your machine, so I'll wait till you answer. You need to know exactly how bad your central apnea is to know if you need to act in a hurry or if you can take time to plan your path. Based on your answers about your machine, I'll respond with a concise list of direct questions to ask your doctor, and I'm sure others will chime in.

I would just hate for your poor sleep and feeling bad to end up being more about the RLS than the central apnea, and it would be good to know that before you complicate your life. So tell us about your machine and let's go from there.

[JohnBFisher]

Just as a note, use of oxygen is a common method to treat central sleep apnea. For many people, it fully resolves the central sleep apnea. But for some people, it may not fully address it. However, supplemental oxygen is usually cheaper than using an ASV unit, which is another approach to treating central sleep apnea. An Adaptive Servo-Ventilator (ASV) (which is a BiPAP on steroids) helps break the cycle that causes central sleep apnea.