Hello Guest, Welcome to Apnea Board !
As a guest, you are limited to certain areas of the board and there are some features you can't use.
To post a message, you must create a free account using a valid email address.

or Create an Account


New Posts   Today's Posts

Went to my doctors about my diagnosis today....
#1
Angry 
Went to my doctors about my diagnosis today....
And requested he write me a script for a CPAP machine so I could self-titrate (I was already diagnosed with moderate OSA at 19.6 AHI. The interp page was already signed by a board certified sleep doctor). He told me no. PREVIOUSLY, he stated that I needed to go an ENT to discuss "minimally invasive surgical options". Keep that in mind for later. 

Anyways, sitting in his office, ask him why he won't let me self-titrate. His response: "If you set the incorrect pressure on a APAP machine, it could cause a pneumothorax (a collapse of the lung due to air entering the chest cavity, there are different variants or reasons that could cause this) and you would die. It would kill you." I sh*t you not. Those were his words. 

Couple things wrong with this people, and keep this in mind because this is educational. 

1. Don't let ANYONE, especially a medical professional, threaten you with a statement like this. There are plenty of ways he could have gone about this to let me know of the adverse consequences of "self-titrating". This was not it, and all it did was p*** me off immediately because

2. he lied. Do not let anyone tell you anything without first doing your research on all of your options. He expected me to let him do the heavy lifting, so when I came in properly armed with the knowledge, he lost footing. Please make sure you know your conditions, the things that might cause it, and the things they may cause. In this case, a pneumothorax being caused by air pressure exerted by any type of CPAP machine is BS (unless you have an underlying condition in which almost any type of exertion of the lungs could cause a collapse) and I wasn't biting. 

The conversation went downhill from here. I remained respectful and let him stumble over his words, and when he offered a reason, I gave him an answer as to why, again, it was BS. To give you an idea, I'll share some snippets of what went on below:
-------

Doc: "Only certified specialists should change the settings." 
Me: "There isn't anything against a patient changing their own settings in an xPAP machine, law or otherwise. There never has been." (What is illegal is a DME or doctor telling you how to use your device, or selling you a device without a prescription. In fact, changing your own settings in this sense is akin to how diabetics change their insulin dosages within reason. Their medication/therapy is what's keeping them alive, much to the same degree with SA patients. All of this is simple research. It's mentioned on this board alone, multiple times.)

Doc: "You can't just do self-titration. That's like me saying "you have pneumonia", then saying "well heres some antibiotics. There you go.""
Me: "I'm not sure what this has to do with CPAP and self-titration. Taking the wrong antibiotics would possibly kill me. Changing my pressure settings would just make me uncomfortable, or not solve my SA problems/cause CA problems which can be fixed the next time I see my therapy reports."

Doc: "It's like open heart surgery." (I'm not kidding, he fucking said that. I'm sighing at this point because it's obvious he doesn't know anything about this field. He even says "I'm not trained for this" later in our discussion.)
Me: "Well, not really, cause I'm not cutting open my own chest to change a few settings."

Doc: "It causes high blood pressure."
Me: "Really? It does?" (I was actually surprised because this seemed plausible despite all he's said earlier.)
Doc: "Yes. Forcing too much air into your lung can cause stress and stretch them excessively." (back to the lung thing)
Me: "So manufacturers are creating devices that could inadvertently pop a user's lungs based on their pressure setting? Is that what you mean?" (now this was just me being petty. There are tons of drugs, equipment and other objects that were meant for one thing, but when abused, could be used for another purpose or even harm the user. This doesn't seem to be the case with CPAP machines. I've never seen a report or litigation purposing harmful lung side effects with the use of CPAP machines. Please feel free to show me some if you have any.)

Doc: "You are the first to ask me this in 34 years." "I'm the doctor." "If the judge in the malpractice suit asks me why I let the patient order me around, what do you think the jury would say"?

Doc: "They want you to go back for another sleep study. I honestly don't know why they didn't do a split night. I always order split studies."

Me: "The manual titration isn't necessary. I can do that at home which is why I'm asking for the script."

Doc: "Well obviously they require more information. They wouldnt' have asked if it wasn't necessary."

Me: "Doctor, do you know what a manual titration is and what they do during it?"

Doc: "I, well, uh, no. I don't know." (I swear to god I'm telling the truth. I wish I had recorded our conversation.*)

Me: "One diagnoses, the other finds the pressure needed to treat. That's all. I'm already diagnosed. It says so on the interp page. Literally."

Doc: "Obviously not. If they want you to go in again, they must be missing the information for a proper diagnosis."

Me: "So even if I do this second study, you're still going to send me to an ENT?"
Doc: "No, once they give me the information I need, I'll give you a script." (What's the difference? A board certified sleep specialist signed off on my interpretation page, literally diagnosing me with OSA. You literally have ALL you need right there on that paper.)
-----

Look, you probably get my point. I'm not trying to bash the doctor. In fact, I can understand his hesitation. He's being asked by someone he doesn't expect to know anything about the condition they're suffering from to do something he has no knowledge. He's been in the field a long time, and probably doesn't expect a patient to ask HIM to do anything. He's used to giving out information and not receiving it. And to be fair, he stated that if I could prove using medical journals from two sources, New England Medical Research and some other place I don't remember, that it was okay and safe for patients to self-titrate, that he would totally comply (personally, I don't feel like I can take him on his word for this, and if I can't trust my doctor, I don't want him medicating me). What the issue is here is that instead of admitting that he doesn't know, he lied, and continued to lie, then tried to pull up sh**ty reasonings without proper evidence, but expects me to just listen to him with open ears. To hell with that. 

 I just want people to know that you need to do research on your condition. Don't walk all over your doctor who is trying to help you (for one reason or another), but don't take things at face value either. 

ANYWHO, tl;dr: I'm still without a CPAP machine, and am now currently looking for a new doctor, someone who will listen to reason and hopefully understand that I'm not going to sit by idly, waiting for someone else to carry my treatment to me on a silver platter. 

*PS: While I am not, by any means suggesting you do this, I live in a "one-party consent" state where it's legal for me to record conversations so long as I consent to it, even without the other person's knowledge. In cases like these, I wish I had known before hand so I could record said conversation for future reference. My memory isn't what it should be for as young as I am, and doing this helps very much so. From now on, I may record future situations such as this (hopefully with a doctor's approval). 

PSS: I posted this on the other apnea board, so I apologize if this is your second time seeing it, however, I want people to see this. People need to know that just because your doctor says it doesn't mean that you need to take it at face value. You have the right to any and all information regarding procedures, treatments, cures, therapies and the such when it comes to your health. And THAT's law. 
Post Reply Post Reply
#2
RE: Went to my doctors about my diagnosis today....
Wow! I am sorry you had that experience. I hope that you have an appointment with another doctor soon to finally get somewhere with all this!
Post Reply Post Reply
#3
RE: Went to my doctors about my diagnosis today....
Yeah, it is common. If this is your GP, I suggest getting another GP. If he is this weird then what else is he going to be weird about? We wouldn't hesitate to switch mechanics who said stupid false statements about how our car works but so many of us won't switch docs.
PaulaO

Take a deep breath and count to zen.




Post Reply Post Reply
#4
RE: Went to my doctors about my diagnosis today....
Incredible story. Of course you can simply obtain an Auto CPAP and DIY, and your signed sleep study would be viewed as a valid recommendation by most online suppliers. The physician that signed that report could probably write your script if you let him know you have separated from your doctor because he quacks, making rational communication impossible.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply
#5
RE: Went to my doctors about my diagnosis today....
(10-04-2017, 10:44 PM)PaulaO2 Wrote: Yeah, it is common. If this is your GP, I suggest getting another GP. If he is this weird then what else is he going to be weird about? We wouldn't hesitate to switch mechanics who said stupid false statements about how our car works but so many of us won't switch docs.

Sadly switching doctors is not really an option for us, it is very much a case of take what you are given.
All our GP's do is get you an appointment with a so called specialist at the hospital, change GP's you end up in the same hospital with the same specialist.

I failed to do my homework prior to attending the sleep clinic, had I done so I would have called him out on the bulldirt I was being given. Had I been aware of the information available on this site I would have been far better prepared to deal with the incompetents treating me.

On the one hand medics will tell you to educate yourself on whatever your problem is, but should you have the nerve to contradict them they will tell you not to believe everything you read on the internet, even though the information you quote may be from a legitimate hospital website. Dont-know
Post Reply Post Reply
#6
RE: Went to my doctors about my diagnosis today....
Oh, man. The doc thinks a CPAP machine is a balloon inflator at a birthday party?

That's a great idea to get the person who signed off on the sleep study to prescribe the machine (natch, according to your specs). Even a nurse practitioner can write a prescription. Heck, you can even take him/her the prescription template in the Forum Wiki and the prescription is pretty much written for them. 

All you need is an APAP of your choice, correct? The docs can tell you not to auto-titrate 'til they go blue in the face, but they can't make you follow their directions... If you're using insurance, just make sure you meet the insurance compliance requirements so you can keep the machine.

I plan to meet my benchmarks (compliance obligations, follow-up visits etc.) and then do whatever. I probably won't even change any settings until I'm free of obligatory doc/DME visits).

Good luck!
Post Reply Post Reply
#7
RE: Went to my doctors about my diagnosis today....
What would concern me about this particular doctor is that he cannot interpret the study or take action on his own accord. If he gets the results of a titration study, he will take the recommended fixed pressure and prescribe that, then defend to the death that the patient should not touch that without an additional sleep study.

The whole conversation ignores the fact many patients do a home sleep study followed by self titration with auto CPAP. The arguments present a doctor who is ignorant to the point of being incapable of performing his job, assuming he even believes what he is saying. I would rather be treated by an intern or student who is at least interested in the basics
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply
#8
RE: Went to my doctors about my diagnosis today....
Since the doc is sending you to an ENT, maybe get the ENT to write the prescription for an APAP?
Post Reply Post Reply
#9
RE: Went to my doctors about my diagnosis today....
FWIW, my primary admits he knows nothing about cpap. He accepts that I know more than him and I can just tell him what I need the script to say. If I needed a different machine (i.e. a bipap), then he would have to send me back to a sleep doc.

I have had doctors who have had outlandish reasons why I must do things a certain way and that was the last visit with that doctor. Some doctors are into control, others have ego problems. Others just are used to doing stuff a certain way and yes, are surprised when their patients disagree.
Post Reply Post Reply
#10
RE: Went to my doctors about my diagnosis today....
We are in the process of firing my wife's sleep doc (PA actually) and moving her over to mine. The sleep doc was fine up until we made the initial 30 day consult compliance after starting therapy. She said everything was fine even though my wife explained she was having reactions to the headgear on her amana view mask - her face would swell and the skin was breaking out on the back of her head where the webbing made contact. Finally got the doc to order a different mask which was like pulling teeth. We have had the respiratory therapist over twice and talked to the DME about making adjustments and they said they can't do anything without the doc's permission. We have left messages for the sleep doc and refuses to return calls. So, with the reaction to the mask and a couple of other issues, she has not used her machine in over a month and nobody on the med side cares. The DME has been trying to talk to the doc also, but she has blowing them off also. 

When she wet up the appointment for the new doc, she talked to his respiratory therapist who understood what she was going thru and knows the other doc's reputation told my wife to hold off on using her machine until we look at the study and make the proper corrections. You could hear her want to say "this is BS".  We are picking up her sleep study on Monday and her appt is supposed to be the end of next week. Hopefully we can get this resolved.

Most of my wife's events are CAs and are medication related.

We shall see.

Homer
Post Reply Post Reply


Possibly Related Threads...
Thread Author Replies Views Last Post
  Diagnosis question Timlondonparis 3 147 Yesterday, 11:11 AM
Last Post: Timlondonparis
  New diagnosis, Vauto on the way, some questions SBTApnea 12 676 03-15-2024, 01:18 PM
Last Post: HalfAsleep
Thumbsup [Diagnosis] Didn't know this existed. Hi! And diagnosis please smgemd 6 217 03-07-2024, 10:23 PM
Last Post: jcp519
  [Diagnosis] WatchPAT sleep apena diagnosis low AHI higher RDI. Need advice godiego 22 3,383 02-28-2024, 02:39 PM
Last Post: godiego
  Doubts about my diagnosis? (Test results + First night with CPAP) IAXEM 14 841 02-26-2024, 03:46 PM
Last Post: IAXEM
Question [Diagnosis] NEWBIE Looking for first diagnosis assistance Gothenburg85 5 333 02-16-2024, 06:25 PM
Last Post: Gothenburg85
Smile Alan's New ResMed AirCurve 10 Vauto Came Today! Deborah K. 16 790 02-08-2024, 09:16 AM
Last Post: Sleeprider


New Posts   Today's Posts


About Apnea Board

Apnea Board is an educational web site designed to empower Sleep Apnea patients.