Drbandage

NightHawkeye: How true!
By being 'proactive', we not only are accomplishing those goals, but making better use of our doctors' time!. Office visits here in PA are pretty well limited time-wise, due to so many having left the state because of the horrible rise in their insurances - due to (frivilous*)lawsuits/lawyers.
*documented as such

blarg wrote:As a gay man, I can tell you right this instant that if we're going down the sensitivity training route, then there are many many areas in the medical world that need to be addressed long before we ever begin to touch sleep apnea.

blarg: That issue, sadly, is wide-spread, and not limited to the medical community - although THEY (physicians) need to be the point of focus.
However, I don't think we need to separate these priorities, as it "sounded" in your above quote. Both are necessary NOW.
I many times think how better off we all would be without prejedices of any kind, especially those that "group/categorize" people. Ignorance and lack of UNDERSTANDING is at the root of most of it. I have to tell myself that some (ignorants) are "more to be pitied than censored", but even that is a hard pill to swallow, because I don't understand them (ignorants).

As I stated earlier, I believe it will also be far too long before we can find a physician EASILY who is certified in sleep study - and then, we still need to hope for one with experience and empathy. And, I guess that's where WE come in. Thankfully, this board is extremely helpful in educating us with info to pass along to physicians for the greater success of many others.

Kathleen (stepping from soap box - temporarily)

Elle wrote:Are we slagging sleep specialists or GPs? I find my GP refers me when she doesn't know an area of medicine well. My sleep specialist, who is a respirologist, is very knowledgeable and is a good advocate.

Elle: Where do YOU live? Although my GP is the greatest for me, and DOES refer me to people she considers well-suited, it doesn't always end up that way in this area of interest - sadly.

I've added this, (from Woozle's post on progress, and PM'd Woozle) as I think it's pertinent:

Woozle wrote: anyway - being persistent pays off - I had to be a very aggressive advocate for myself to have the dr's listen up and help me figure out the problem
so keep trying if you are discouraged and good luck

Elle wrote:Are we slagging sleep specialists or GPs?

It need not be reduced to condemnation, Elle, although if getting mad helps motivate one to action, then that's not so bad either. There is a difference though between criticism and condemnation. My point was that sleep docs appear, in general, to be neglectful of their patients. I'm not sure how one can interpret the generally recognized statistic of less than 50% compliance with CPAP therapy any other way. Now, they may not mean to be neglectful. They may not think they're being neglectful. They may, in fact, be convinced of the good they're doing by dutifully following everything they have been taught to do. It is clear though that most sleep docs are not looking for feedback from patients. Nor are most even monitoring patients to check compliance. Hence, they have no real measure of how effective their efforts have been at helping their patients.

This is a harsh criticism perhaps, but also very very true. This criticism is not condemnation though. Rather, from my perspective, it's a matter of whether diagnosis and treatment could be improved. Indeed they can, especially on an individual basis for people who find their way to this forum.

Regards,
Bill

NightHawkeye wrote:They may, in fact, be convinced of the good they're doing by dutifully following everything they have been taught to do. It is clear though that most sleep docs are not looking for feedback from patients. Nor are most even monitoring patients to check compliance. Hence, they have no real measure of how effective their efforts have been at helping their patients.

Good points.
However, "Compliance" is the ONLY issue my "sleep doc" is interested in..even when I go in armed with charts, graphs, data, etc.!

I would like to see a 'specialty' for Respiratory Therapists, who can work WITH apnea patients, then report anything necessary to anyone who can write a Rx when necessary. Doctors, seemingly, from my personal experience either aren't that well educated in this subject, or actually have OTHER specialties, thus thinking those other patients are more needing of their time.

But does any specialist 'follow up"? I think they assume everything is ok if you aren't booking appts. Or they are going the learned helplessness route due to leading a horse to water....'

Offerocker wrote: Doctors, seemingly, from my personal experience either aren't that well educated in this subject, or actually have OTHER specialties, thus thinking those other patients are more needing of their time.

Which gets to my point #3 about needing to assume personal responsibility for one's own health care. I agree, Offerocker. There is not enough time in the day for a doc to go into detail for everyone's health issues. (So, just why is it that we should not monitor our own therapy, evaluate our own progress, and adjust the machines ourselves?)

Regards,
Bill

My sleep dr. and DME initially led me to believe my CPAP held only compliance data but on a recent visit I was told of large leaks (which must be the explanation for my daytime tiredness). The dr. told me to try a chin strap and return in 6 months. I only managed to get a copy of the printout because a DME gave it to me when I asked to speak with her about a new mask. My PCP never mentioned a possibility of sleep apnea although I have had many of the symptoms for years and it is only because I was referred for a sleep study by my cardiologist that I was evaluated. I am at triple the baseline for severe obstructive sleep apnea.

NightHawkeye wrote:

Offerocker wrote: Doctors, seemingly, from my personal experience either aren't that well educated in this subject, or actually have OTHER specialties, thus thinking those other patients are more needing of their time.

Which gets to my point #3 about needing to assume personal responsibility for one's own health care. I agree, Offerocker. There is not enough time in the day for a doc to go into detail for everyone's health issues. (So, just why is it that we should not monitor our own therapy, evaluate our own progress, and adjust the machines ourselves?)
Regards,
Bill

Bill: I'm not sure why you're asking me that question; I've never made a statement to that effect (knowlingly), because I DO believe that each of us is responsible for all of our own therapy, for which we receive 'guidance' from the medical profession.
Please expand.

Offerocker wrote:Bill: I'm not sure why you're asking me that question . . .

Sorry, Kathleen. It was intended as a rhetorical question. I got carried away . . .

Regards,
Bill

My suggestion was not to Sam-S but to bluegrassfan. Couldn't edit due to showing up as guest.
Kathy

Elle wrote:But does any specialist 'follow up"? I think they assume everything is ok if you aren't booking appts. Or they are going the learned helplessness route due to leading a horse to water....'

Elle:
I'm not sure what you meant in that last sentence, so I cannot add anything.

The specialists I've seen will follow up ONLY if they have Rx'd treatment, or if one has a progressive illness.

IF I have a problem needing attention, I will request an appointment.

My "sleep doctor"*, who "runs"/"closely associated with" a sleep lab (a pulmonologist) IS primarily concerned with my pulmonary functions. As it turned out, due to his schedule, the FASTEST "way to see him" was by having a sleep study! My internist wanted me to see HIM. He did a good job relating to pulmonary issues, BUT did NOT address my apnea except to look at the answers to the questions on the small form provided to me by a clerk, and told me that "I was compliant".

I DID ASK him about my 'numbers'(info w/me), and he told me that he was not the person to talk to about that (sic). I asked at the desk about the possibility of a RT being associated with "the group". Yes, and I have an appointment. I am saddened that the pulmonary doctor did NOT offer me that information. By saying all of this, I am supporting our need as patients to be proactive in all of our health issues. If we do NOT persevere in our treatment/necessary attention as we see it, we might then say "it was the dr.'s fault that _____", because he did not help me when I asked for it.

I can only offer MY experiences.
We need to do our best to help ourselves, and to assist the medical profession in helping US.
We also need to be aware of those times when we've hit a brick wall and need to look elsewhere for someone who suits us better, in the ways we perceive "that help" may be lacking.

* Here may be the 'kicker' in all of my story : IS there any such animal as a "Sleep Doctor"? Until that conversation, I thought there WAS! I now am fairly certain there is not, and that is my sole complaint, and that person doesn't necessarily have to be an M.D., but one who is extremely knowlegable in Apnea and has access to physicians for whatever is necessary by them. I know that can be the role of a RT, but they are few - in my experience, OR are ONLY associated with a DME, to which there can be restrictions not to their liking.

Problems DO exist, yet so do solutions. Who is in a position to implement the solutions at the highest level possible?

I am a "patient" patient, who does her best to "partner" with her doctors in her treatment to the best of my ability.

Offerocker wrote:* Here may be the 'kicker' in all of my story : IS there any such animal as a "Sleep Doctor"?

Yes, at least there is certification in "sleep medicine". Judging from the American Academy of Sleep Medicine website,
http://www.aasmnet.org/ABMS.aspx, credentials in sleep medicine are offered as a sub-specialty under any of the following four medical specialties:
- Internal Medicine
- Otolaryngology
- Pediatrics
- Psychiatry and Neurology

So, yes, I'd say since physicians can get certified in "sleep medicine" then there are "sleep docs".

Regards,
Bill

But Bill: WHERE ARE THEY?????
My neurologist is listed as such, however, even she doesn't ask about the data I drag in with me! Clock runs out, and so am I! So frustrating. Unfortunately, there have been other issues to discuss as quickly as possible.
Maybe (?) I need to make TWO appointments next time, on different dates/times? Searching for answers here.

Maybe I need to go out of state for better healcare, as many of the younger, (not yet 'established') physicians have done here in this beautiful state of PA. Luckily, could go to MD, but then the search needs to begin again. It is very frustrating for me; something I don't need - not that anyone else does either.

PLEASE excuse any remarks made out of pure frustration, for that's what they reflect. THANK YOU.

Offerrocker

I'm jumping in here late, but I'm understanding that you don't feel you're getting good care for your sleep apnea. It sounds like you don't have a good sleep doc and I can understand how frustrating that is. I had great frustration with my first sleep doc and am fortunate to have found a new one. I hope you can, too.

Offerrocker wrote:WHERE ARE THEY?????

Maybe I need to go out of state for better healthcare

I don't think you need to go out of state. There are lots of physicians who are board certified in sleep medicine in Pennsylvania.

If you look here: http://www.absm.org/Diplomates/listing.htm you'll be able to find them. Unfortunately, the list is alphabetical so you can't search for your state. But, once you pull up a letter, you'll see the city and state for the doctor.

One of the things I like about the list is it includes the speciality of the doctor. My sleep doc is a psychiatrist, which is great for me because I suffer from depression. My mom has restless legs, so I think she should find a sleep doc whose speciality is neurology.

Offerrocker wrote:My neurologist is listed as such, however, even she doesn't ask about the data I drag in with me!

"as such" - do you mean she's board certified in sleep medicine by the American Board of Sleep Medicine? Even if she is, she's clearly not addressing your apnea the way you need it to be. Unfortunately, not every doctor who is board certified in sleep medicine is great (my first sleep doc being a good example). But, I still think starting with the list of board certified sleep docs is the best way to go.

Sandy

Sleepysancy:

I didn't do any "quotes"...

YES, my Neurologist IS on the ABSM list!

Although you stated there are a lot of accredited doctors in PA, can you back that up? I'm not really challenging you or trying to be a smart-ass, but if the ABSM doesn't list by state, it really makes it difficult, so maybe you have another source of information for that? If not, I will go through the list, letter by letter - whatever it takes. (I wonder how many of these "trial and errors" the insurance co. will put up with, ha ha)

You also said: My sleep doc is a psychiatrist, which is great for me because I suffer from depression.

That would be perfect for me for same reason!

Thank you for your interest and insightful post. I really didn't get upset until my previous post, when it hit me, through re-living this, just how difficult it has been to get help - REALITY CHECK!! But then, maybe I'm supposed to do more of this for myself?

Offerrocker,

I do wish this list gave you the ability to search by state. When I said there are lots of accredited doctors in PA, it was just after doing a couple of visual checks of some of the letters of the alphabet.

I completely understand your frustration. I was going through the same thing until I saw my new sleep doc, which was just a week ago. I'm still kind of angry about the first sleep doc.

I've listed below what I found in PA for the letters A - D (I didn't type these - I copied them into Excel and filtered to see PA only - don't think I'm a total nut ) There are three psychiatrists on this list, but I'm guessing the one who also has pediatrics listed only sees kids. So, I bolded the other two psychiatrists I see on this list (not sure where in PA you are). One has been certified since 1985 - wow. My sleep doc was certified in 1986 and I thought he might have been the first. Clearly not.

Another route might be to ask for recommendations via a new post. I saw that work on another forum for a poster in Denver. People sent PMs with the recommendations to keep things private.

Feel free to PM me if you want to take anything off-line.

Sandy


Name City State Specialty Certified
Frederic A. Acevedo, M.D. Pittsburgh PA Pulmonology 4/6/1998
Jose R. Acosta, M.D. Lewistown PA Pulmonology 3/24/2004
Michael Harris Ader, M.D. Hanover PA Pulmonology 3/24/2004
Shoaib Alam, M.B., B.S. Hummelstown PA Pulmonology 9/20/2005
Mohammad I. Ali, M.D. New Castle PA Pulmonology 3/24/2004
Surinder K. Aneja, M.D. Pittsburgh PA Pulmonology 4/14/2003
Maria Antoniou, M.D. Bala Cynwyd PA Pulmonology 4/14/2003
Raanan Arens, M.D. Wynnewood PA Pediatric Pulmonology 4/17/2003
Charles W. Atwood, Jr., M.D. Pittsburgh PA Pulmonology 4/6/1998
Anto Bagic, M.D., M.Sc. Sewickley PA Neurology 9/20/2005
Imran Mushtaq Bajwa, M.D. Indiana PA Pulmonology 4/17/2003
Mark J. Baumel, M.D. Wynnewood PA Internal Medicine 4/28/1997
Suzanne E. Beck, M.D. Bryn Mawr PA Pediatrics 9/19/2006
Mark Benjamin, M.D. Elkins Park PA Pulmonology 4/8/2002
Teresa O. Bisnett, M.D. Franklin PA Pulmonology 4/8/2002
Mark A. Blakeslee, D.O. Lewisburg PA Clinical Neurophysiology 4/17/2000
Kevin R. Booth, M.D. Abington PA Neurology 4/24/1995
Andrew J. Borson, Ph.D. Ridley Park PA Psychology 6/16/1986
Pierre K. Bou-Khalil, M.D. State College PA Internal Medicine 4/28/1997
Livia Elaine Bratis, D.O. Philadelphia PA Pulmonology 9/20/2005
Alan S. Brau, M.D. Bethlehem PA Pulmonology 4/22/1996
Andrew Craig Brown, M.D. Newtown Square PA Pulmonology 4/14/2003
Lawrence W. Brown, M.D. Philadelphia PA Neurology/Pediatrics 6/26/1987
Thomas V. Burke, M.D. Williamsport PA Pulmonology 4/6/1998
Margaret Ann Burke, M.D. Phil PA Family Practice, Geriatrics 3/23/2005
Daniel J. Buysse, M.D. Pittsburgh PA Psychiatry 4/24/1989
Joseph A. Cable, D.O. Pottsville PA Pulmonology 4/23/2001
Charles R. Cantor, M.D. Philadelphia PA Neurology 4/24/1995
Brian W. Carlin, M.D. Pittsburgh PA Pulmonology 4/23/2001
Sangeeta Chakravorty, M.B., B.S. Wexford PA Neurology 3/24/2004
Wissam M. F. Chatila, M.D. Philadelphia PA Pulmonology 4/11/1999
Bilal Khalid Chaudhry, M.D. Lancaster PA Pulmonology 4/16/2003
Mehboob K. Chaudhry, M.D. Monroeville PA Pulmonology 9/20/2005
Francis C. Cordova, M.D. Philadelphia PA Pulmonology 4/6/1998
Joseph Crocetti, D.O. Wynnewood PA Pulmonology 4/23/2001
Ronald E. Dahl, M.D. Pittsburgh PA Pediatrics/Psychiatry 4/24/1989
Lawton Oswald DeLisser, M.D. Lansdale PA Family Practice 9/20/2005
John J. Della Rosa, Jr., M.D. Wilkes-Barre PA Neurology 4/29/1991
Sandeep Dhand, M.D. Abington PA Pulmonology 4/8/2002
B. Franklin Diamond, M.D. Willow Grove PA Neurology 4/19/1993
Gerard J. Diefes, M.D. Philadelphia PA Pulmonology 4/8/2002
Karl Doghramji, M.D. Philadelphia PA Psychiatry 3/30/1985
Sheila E. Duggan, D.O. Philadelphia PA Pulmonology 9/20/2005
Lee M. Duke, M.D. Lititz PA Pulmonology 4/6/1998
Jeffrey S. Durmer, M.D. Bryn Mawr PA Neurology 4/15/2003
Jameel Farrukh Durrani, M.B., B.S. Montoursville PA Pulmonology 9/20/2005