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2nd Time Around is Amazingly Good !
Having had an ornery experience with my 1st Sleep Study Center and DME, I have started over again. AND the turnaround is AMAZINGLY GOOD !
On Monday I had a consultation at NYU’s Sleep Medicine Associates of NYC http://www.sleepmedicinenyc.com/about_us.html and found it to be an excellent facility with really skilled, experienced and caring professionals who will be establishing a treatment protocol for me and then monitoring my progress on-going.
When I first arrived, the receptionist welcomed me and offered me water, coffee or tea ! That was just the start – and that pretty much exemplifies the spirit of the place. The doctor that I interviewed with spent time reviewing my medical records and sleep study results before our meeting and, therefore, she did not waste time during our visit going over my previous RX, medical history, etc. other than to ask a few specific questions that might have to bear on sleeping. She then asked me a battery of NYU “sleep-related” questions and explained along the way some reasons for those questions.
After an extensive consultation with Dr. Anne Mooney, the Director of the program, Omar Burschtin, joined us and Dr. Mooney presented him with a compact, comprehensive overview of my case – and she was spot on ! I must say that they discussed many neurological things that I had no notion of but with which they were very involved. And then they concurred that they were in agreement with how they should best proceed. Then after Dr. Burschtin spoke with me, my meeting continued with Dr. Mooney.
However, Dr. Burschtin has designed the NYU sleep program to be a center with very open communication between patients and the doctors so he doesn’t exit the picture. As a patient, you are given his email address and are asked to email him if you have questions or need assistance at anytime. He will forward the message on to the best person to assist you, but he also keeps informed of all patients’ progress in real time as well.
As our visit continued, Dr. Mooney advised that my 1st Titration at had been difficult and that they therefore would want me to come in for another Titration in order to determine my cmH20 pressure. Also she is going to suggest a DME (durable medical equipment) provider who will work cooperatively with me in providing the mask and other equipment that I will need and interchange it out as necessary. And she and Dr. Burschtin had thought that it might be a good idea that I be fitted for a mask while I was there that day with their Tech so that I would have a head start in choosing a mask, and also be set up for a more comfortable and productive night’s sleep when I go for my Titration.
The Tech is a nice, easy going guy who got out 4 boxes containing many, many masks and he suggested the ones he thought the best amongst them. We tried only 4 ResMed’s and, at that point, we both thought that we had found what was best for me. I was pleasantly surprised that the Mirage Activa mask was much more comfortable than I could have hoped it would be.
And now I am schedule for an overnight Titration on Tuesday, 11-17; then I’ll contact the DME to order the equipment and start using CPAP ASAP. And then I will have a follow-up consultation on Tuesday, 12-15. And Dr. Mooney has advised me that they are going to closely monitor my CPAP activity and take responsibility for my health care so that I don’t have to take the responsibility on myself – some system HUH ?!?
And, lastly, because of some cognitive difficulties that I have been experiencing and, also because Dr. Mooney noted on my initial sleep study results that I have too much alpha, that the alpha is florid ( and apparently that is not a good thing ) – NYU wants to investigate my alpha situation. So NYU has offered for me to come in for an extensive 4-hour neurological testing of my alpha prior to starting CPAP and then I will be retested a year after starting CPAP. And, maybe, CPAP alone will take care of the alpha problem. Also, however, during the year, NYU will be monitoring my alpha and, if it remains too high, they will recommend some treatment. One possibility is a RX: Nuronin or Nurontin and another is maybe trying NeuroFeedback before taking the RX.
So, seems that I am in a good place with a welcoming, cooperative, skilled, experienced and caring group of professionals at NYU. How very fortunate for me !
Thank you to everyone at SG who has supported me along the way and I am glad now to be able to let you know of my good news ! ! !
Best,
Renee
On Monday I had a consultation at NYU’s Sleep Medicine Associates of NYC http://www.sleepmedicinenyc.com/about_us.html and found it to be an excellent facility with really skilled, experienced and caring professionals who will be establishing a treatment protocol for me and then monitoring my progress on-going.
When I first arrived, the receptionist welcomed me and offered me water, coffee or tea ! That was just the start – and that pretty much exemplifies the spirit of the place. The doctor that I interviewed with spent time reviewing my medical records and sleep study results before our meeting and, therefore, she did not waste time during our visit going over my previous RX, medical history, etc. other than to ask a few specific questions that might have to bear on sleeping. She then asked me a battery of NYU “sleep-related” questions and explained along the way some reasons for those questions.
After an extensive consultation with Dr. Anne Mooney, the Director of the program, Omar Burschtin, joined us and Dr. Mooney presented him with a compact, comprehensive overview of my case – and she was spot on ! I must say that they discussed many neurological things that I had no notion of but with which they were very involved. And then they concurred that they were in agreement with how they should best proceed. Then after Dr. Burschtin spoke with me, my meeting continued with Dr. Mooney.
However, Dr. Burschtin has designed the NYU sleep program to be a center with very open communication between patients and the doctors so he doesn’t exit the picture. As a patient, you are given his email address and are asked to email him if you have questions or need assistance at anytime. He will forward the message on to the best person to assist you, but he also keeps informed of all patients’ progress in real time as well.
As our visit continued, Dr. Mooney advised that my 1st Titration at had been difficult and that they therefore would want me to come in for another Titration in order to determine my cmH20 pressure. Also she is going to suggest a DME (durable medical equipment) provider who will work cooperatively with me in providing the mask and other equipment that I will need and interchange it out as necessary. And she and Dr. Burschtin had thought that it might be a good idea that I be fitted for a mask while I was there that day with their Tech so that I would have a head start in choosing a mask, and also be set up for a more comfortable and productive night’s sleep when I go for my Titration.
The Tech is a nice, easy going guy who got out 4 boxes containing many, many masks and he suggested the ones he thought the best amongst them. We tried only 4 ResMed’s and, at that point, we both thought that we had found what was best for me. I was pleasantly surprised that the Mirage Activa mask was much more comfortable than I could have hoped it would be.
And now I am schedule for an overnight Titration on Tuesday, 11-17; then I’ll contact the DME to order the equipment and start using CPAP ASAP. And then I will have a follow-up consultation on Tuesday, 12-15. And Dr. Mooney has advised me that they are going to closely monitor my CPAP activity and take responsibility for my health care so that I don’t have to take the responsibility on myself – some system HUH ?!?
And, lastly, because of some cognitive difficulties that I have been experiencing and, also because Dr. Mooney noted on my initial sleep study results that I have too much alpha, that the alpha is florid ( and apparently that is not a good thing ) – NYU wants to investigate my alpha situation. So NYU has offered for me to come in for an extensive 4-hour neurological testing of my alpha prior to starting CPAP and then I will be retested a year after starting CPAP. And, maybe, CPAP alone will take care of the alpha problem. Also, however, during the year, NYU will be monitoring my alpha and, if it remains too high, they will recommend some treatment. One possibility is a RX: Nuronin or Nurontin and another is maybe trying NeuroFeedback before taking the RX.
So, seems that I am in a good place with a welcoming, cooperative, skilled, experienced and caring group of professionals at NYU. How very fortunate for me !
Thank you to everyone at SG who has supported me along the way and I am glad now to be able to let you know of my good news ! ! !
Best,
Renee
Views: 34
Replies to This Discussion
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Permalink Reply by Judy on
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WOW! Sounds like you have found one of the best of the best sleep centers and doctors!!! CONGRATULATIONS. I'm a bit green w/envy - but sure glad for you!
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Permalink Reply by susan mccord on
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Renee, after what you've been through, I'm SO HAPPY for you and, like Judy, a little envious despite the fact that I have a pretty good situation re: DME and MD. But not THAT good and certainly not that accommodating and progressive.
This is exactly what we should all be seeking, if possible. These kinds of practices should be shouted to the skies and held up as standard care for ALL apnea patients.....
How to make that happen is foremost in my mind at the moment.....
Susan McCord
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Permalink Reply by Andy on
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Hi Renee,
Wow! What a turnaround!
It sounds like you've found the place to be!
As a comparison, the hospital in which I had my sleep study had only techs, I've never met the doctor who reviewed the study, and it took two weeks to get the results. My Pulmo doc is very nice, but has no detailed plan on follow-up.
The doc's office picked the DME, which upset me, but they seem to be pretty decent, so I'm OK with them.
I've had to push to get the attention of each of the professionals I'm working with, they've been decent, but not outstanding.
All in all, I'm happy with the situation, becuase I'm feeling great!
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Permalink Reply by Renee on
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Hello bayoulady ~
Thanks for writing and for sending along your well wishes especially as you are in the midst of such difficulties. I am in the process of starting over because the Sleep Study Center and DME that I started with were so terribly miserable and combative that I determined to make a change and to my good fortune the transition turned out to be better than I could have imagined.
Of course, I am in a large metro area and perhaps that is not the case with you. When I posted about my experience, I thought that others might see thru my experience that not all Sleep Study Centers and doctors and DMEs are the same. It was only thru SG that I learned what I know about OSA, DMEs, equipment and health care providers and insurance matters, etc. And it was with the info, advice and support that I gained thru SG that I was able to harness the knowledge, strength and impetus to research in my area and then determine to make a complete change in getting the health care I need to treat my OSA. Again, I don’t know what resources you have available in your area. And, you have the additional difficulty of your doctor / insurance company delaying your necessary care which, of course, is unethical, immoral and downright criminal. Sorry for you (and your poor little second graders) that it had to come to an attack in class. Perhaps, you could “promote” an attack sooner in the faculty lounge now that you know that’s what’s needed in order for your doctor / insurance company to “permit” you to get necessary medical treatment.
Not knowing how your insurance works (although, I have an idea of how it DOESN’T) – now that you know you have the right to ANY DME provider AND equipment you want – maybe you could think about posting on SG if others can suggest a DME in your area or, if not, call other DMEs in your area and, perhaps, make a change. Since I’m new to all this, I don’t know if it might entail having your Pulmonologist / Cardiologist writing a new script to use with a new DME but, perhaps, your appointment with the Pulmonologist might be an opportunity to either change DMEs, if you want or, stay with your present DME – BUT change to another mask, other equipment – if you would want to do that. If you want advice or suggestions in connection with this, you could post here on the SG forum and I bet you would get good responses. And when you meet with your Pulmonologist in person, perhaps, you could ask him / her to be involved with your OSA rather than your Cardologist . . . seems to make sense.
I would wish for you that you could also get a new family practice doctor, although that may not be possible with your insurance plan. Quite recently, I had to also leave the services of my Internist and GI specialist because they were not taking care of me – and it was my new Internist who was the FIRST doctor that I went to see in about 2 years that did not say that “I was not tired”, “I was alright”, “I was fine” – instead, she took my tiredness / fatigue as seriously, if not more seriously, than I did and sent me directly for a sleep study for OSA and to a new GI specialist – who saved me from having to have an operation ! All of this changing of doctors, etc.: Internist, GI, Sleep Study Center, DME – was discombobulating, challenging, frustrating (angering at times), time consuming, wearing, etc., etc., etc. – but well worth it, and in my case, I think actually necessary. Then again, being in a large metro area, I was fortunate to be able to have resources available and I don’t forget that or take that for granted for one minute . . .
I would like to wish you my very best as you are coping with so very much. It is hard enough to be dealing with OSA and sleep deficit, along with acclimating to trying to treat OSA – and then having other health issues hampering you as well.
Thank you, once again, for your kind thoughts as your are going through so much and I wish you the very, very best as you meet with your Pulmonologist and on-going.
Renee
bayoulady said:What wonderful news ,Renee. The sleep center sounds like a dream come true. WE ALL NEED that , and I'm happy that you have such excellent support!
Contrasted,my center was clean and friendly, but only sleep techs there. No doctor present or involved . A week later a pulmonologist read the results, prescribed a cpap at 8 pressure, scheduled a follow -up titration, and forwarded it to my cardiologist. My cardiologist took it on himself TO CHOOSE MY DME and MAKE MY APPOINTMENT. I did not know then (in March, that I had a choice. ) I was give a bare bones Remstar M series with a humidifier. No accsess to data other than blower hours and therapy hours and average use per night. I HAVE YET TO SEE THE PULMONOLOGIST, because they require a refferral from my family practice doctor. He has been doing the "band-aid thing" using Spiriva and albuterol with my so-called asthma , which he diagnosed me as having.....until this morning , when I had some kind of breathing attack right in front of my poor little second graders. A teacher rushed me to his office. NOW he is willing to refer me..wondering if I have COPD......about time!
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Thanks Judy ~
I wanted to write about this, surely not to make others green w/envy, but because I wanted to pass along some good news because the good news that I read on SG boost my spirits every day.
Also since I had posted my trials and tribulations and received much support, I wanted to let folks know that the twists and turns of my path have now taken me to this good place. And maybe it will give others a sense of support and the idea that, if they can manage to be resilient and persistent, they just might wind up with some better health care. Can’t be sure . . . but – maybe . . . gotta’ hope . . .
Thanks for your good wishes – and right back at ya’,
Renee
Judy said:WOW! Sounds like you have found one of the best of the best sleep centers and doctors!!! CONGRATULATIONS. I'm a bit green w/envy - but sure glad for you!
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Hello Susan ~
Good to hear from you. You bet ya’! This is the kind of skilled, experienced, compassionate and, as you well noted – progressive health care that should be shouted to the skies ! Partly why I wrote the long message was to do just that ! - which is also why I highlighted NYU, the doctors names and gave their url in the posting. Give credit where it is due !
Given all that I have learned on SG about the seriousness of OSA and equally, if not more importantly, all the great advice and support that flows through the forum each day, combined with my excellent experience at NYU this week as well as reading about your really good experiences of late – has me no longer feeling such a dreaded anticipation of having to sleep with the ghastly CPAP mask – rather, I am now eagerly looking forwarding to starting CPAP ASAP ! Imaging that ?!?
Wishing you many more nights of good sleeping and dreaming – and energetic days as well,
Renee
susan mccord said:Renee, after what you've been through, I'm SO HAPPY for you and, like Judy, a little envious despite the fact that I have a pretty good situation re: DME and MD. But not THAT good and certainly not that accommodating and progressive.
This is exactly what we should all be seeking, if possible. These kinds of practices should be shouted to the skies and held up as standard care for ALL apnea patients.....
How to make that happen is foremost in my mind at the moment.....
Susan McCord
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Hello Andy ~
Good to hear from you. Yep – I do believe I’m in the right place !
Amazing how things are turning out for you too ! Here you are with middlin’ care: only techs at the Sleep Study Center; haven’t met with the doctor who reviewed the study after 2 weeks; AND nice Pulmo doc – but NO detailed plan on follow-up – Oh, Dear Me . . . AND, then, you just wound up just being lucky that the DME worked out to be at least kinda’ decent. Yeah, seems we do have to continually push to get the minimal necessary attention needed to be healthy and, even though you’ve been tired, you’ve been doing that.
Yet, with all that – I’ve been reading your postings and you are getting really good results ! You are inspiration to me ! I am so looking to getting forward to CPAP and hoping that I have some good luck with it as you are having. As I have been told that I am a “mouth-breather”, I am jealous that I have read even your tongue is cooperating ! YOU GO ~ ANDY ! ! ! Every day that I get up and read your postings, I am buoyed that others are coming along and that is always really good news to me . . .
Thanks for writing and keep on keepin’ on !
Renee
Andy said:Hi Renee,
Wow! What a turnaround!
It sounds like you've found the place to be!
As a comparison, the hospital in which I had my sleep study had only techs, I've never met the doctor who reviewed the study, and it took two weeks to get the results. My Pulmo doc is very nice, but has no detailed plan on follow-up.
The doc's office picked the DME, which upset me, but they seem to be pretty decent, so I'm OK with them.
I've had to push to get the attention of each of the professionals I'm working with, they've been decent, but not outstanding.
All in all, I'm happy with the situation, becuase I'm feeling great!
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Hi Bayoulady,
No, I'm not in Louisiana, but wow, your story sounds just like mine! I was actually just reading yours, thinking it WAS mine! But when I got to the cardiologist part, I realized it wasn't me!
Sounds like you and I have exactly the same substandard of care!! ;)
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Hi Renee,
Thanks for the kind words.
Funny to hear I'm an inspiration, when a mere 16 days ago, I wasn't able to stay awake long enough to do anything, much less inspire anyone!
I do seem to have done well with the people I'm working with. But I think a good attitude goes a long way. If you read my first posts, I was actually excited to start on CPAP, and I look forward to a good night's rest every night.
I recall when my pulmo doctor told me that "good compliance" was using the CPAP for only four hours per night, I asked him why anyone would want to shut it off halfway through the night. He said, "Well, many people have trouble staying on the CPAP." And here I was thinking, if this thing works, I'm going to want to carry it around with me all day!
I recently reviewed my data (I just keep a log every day of the readout on the LCD) and found the "worst" night I'v had so far was just under 5 hours. My "best" night was 8 1/2 hours. I haven't slept over 5 hours a night in years!
Funny how some things change, though. Before CPAP, I used to read three or more fiction books per week, plus another one or two technical books (I study computer programming), since I was up so much at night. Since CPAP, I started one book, and I'm not even halfway through it! I can't even finish one chapter per night, and before I'd read a whole book in a night!
Anyway, just keep at it, and remember that better days, I mean, nights are ahead!
;)
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