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Re: Doctor Refuses to see me.

Posted: Wed May 23, 2012 8:35 pm
by ozij
Do you have the doctor's latest Rx? Did he himself change the settings on the machine? Any chances it's the PA lying to hide the fact the machine is not set the way the doctor wanted it?

I would drop a doctor who diagnoses "equipment malfunction" by phone and refused to see me faster that a hot potato.
As for a doctor who thinks I can spend a year with malfunctioning equipment -- I would consider him a quack.

Assuming the new setting is what the doctor intended it to be, I would revert back to the previous settings on my machine to see how they affect me.

If I were in a combative mood, I'd also do the following:

I would contact the doctor's office in writing and I would ask for a written referral to the DME describing the equipment malfunction; while at it, I would express my shock dismay and concern at the fact that the doctor intends to leave me with malfunctioning equipment for the coming year, and I would mention my deep concern at the implications malfunctioning equipment would have for my health. That should get their attention (should you want it) or make them worried that a malpractice suit may be in the works.

You don't say what your previous settings were, nor what made the doctor change them.

Re: Doctor Refuses to see me.

Posted: Wed May 23, 2012 8:42 pm
by Pugsy
Leak line is fine. Leaks aren't the issue.

Question for you though...are you sleeping well or is your sleep fragmented badly with a lot of awake or semi awake time mixed in with your mask and machine on?

And as Ozij asked...what were the pressure settings when things were going well? Why did the doctor change them?

Re: Doctor Refuses to see me.

Posted: Wed May 23, 2012 8:54 pm
by inportsmouthva
Doctor said that the change was made because I needed a higher setting.
Yes there is awake time. I am aware I am awake too. So I guess you would say I am fully awake.
Previous Pressure was fixed at 11 without any ramp time. The pressure was changed on April 4 to 11 to 12.5. He indicated that he hoped this would bring the AHI's lower.
What really is confusing though is the vsnore numbers going through the roof.
I don 't know where that is coming from all of a sudden. Unless it is sinus, but I do take nasnonex before bed.

Re: Doctor Refuses to see me.

Posted: Wed May 23, 2012 9:15 pm
by Pugsy
Awake events really mess with the graphs. The machine doesn't know if you are awake or not and it just calls them like it sees them. If it is possible that you were awake during some of those scored event clusters then you can't rely on the data to be accurate. Next time you have a lot of awakenings...turn the machine off and back on so you can look to see if the clusters go along with times the machine is turned off briefly.

A couple of nights ago I woke up in the middle of the night with extreme nausea and I thought for sure I was going to have to get up and go vomit but I didn't. Instead I laid in bed for about 45 minutes or so. Thinking about the nausea which was really bad.

Here is my report below...I think you can easily spot the awake time. The entire report may be off your viewing screen due to size...just right click image and choose "view image" to see the entire report.

[img]http://i1081.photobucket.com/album ... .jpg[/img]

Re: Doctor Refuses to see me.

Posted: Thu May 24, 2012 8:24 am
by Slartybartfast
Very strange. You've got an automatic machine, yet your doc isn't setting it wide enough to let it do its thing. I'd bump up the upper pressure limit clear to 20 and see what happens.

Your pressure is hitting the ceiling, indicating your machine is calling for more pressure to stave off events, but your doc clamped a lid on the setting, preventing your machine from doing what it needs to do. On the face of it, that indicates one of two things: Either your doc doesn't know what he/she's doing or there's some other factor that hasn't been mentioned that's contraindicating a higher pressure limit.

Either way, if you're getting vsnores and all those events, you need more pressure.

Re: Doctor Refuses to see me.

Posted: Thu May 24, 2012 9:00 am
by -tim
If you have ever had lung problems or have trouble blowing up balloons, don't bump it to 20 in one go. On the other hand if you're a jet pilot and have a current physical, 30 would be fine if the machine could go that high.

You have the ability to look at the data. Bump it up 2 above the current one and try again.

Remember the machine could be defective. You can test it. Get a large pan (this is messy a 10 gallon or bigger plastic container or outside works well), and a tall container of water like a two quart pitcher or even an old gallon distilled water jug). Fill the container of water and put it in the pan and put that near your cpap machine. Keep everything electrical away from and above the water and water will shoot out of the container put a towel over anything electrical and the cpap machine. Take the mask off the end of the hose and turn on the cpap machine. Dip it into the water until it stops bubbling. Lots of water will come out with the bubbles when you try this. Did I mention having towels around too? Mark how deep that is in the water. It should be exactly 12.5 cm or a small fraction less than 5 inches.

Re: Doctor Refuses to see me.

Posted: Thu May 24, 2012 9:13 am
by Maxie
I'm surprised that he won't see you but there are other doctors and your primary care doctor is an option. Also, there are people on this forum who can interpret your data as well as explain to you how to do it yourself that, in my personal opinion, are just as good as your doctor. One, of MANY, thing I have learned from this forum is that you have to take charge of your treatment and not rely on yearly, semi yearly doctor appointments. Right now I view my doctor's office as a source of supplies but I'm meeting with a representative from my health insurance carrier soon to check out options in that area also. Your success is in your hands and with help from friends here I think you will do fine.

Re: Doctor Refuses to see me.

Posted: Thu May 24, 2012 9:28 am
by Slinky
Some thing to consider: some of these "desk dragons" seem to feel a need to protect "their" doctors religiously to the point of a detremental affect on the doctor/patient relationship. They deliberately fail to forward a message to the doctor and/or take it upon themselves to provide an answer of their own. They often take it upon themselves to deliberately deny any appointments are available or deliberately schedule them further into the future than necessary.

Re: Doctor Refuses to see me.

Posted: Tue May 29, 2012 11:02 pm
by mnfe
If you want to try to continue with this doctor, I would consider bringing by your SD card and asking them to take a look at the data. SHOWING them the issue might help. My doc also said he likes an informed patient and said I could do that any time I saw something (he knows I am using Sleepyhead).

Re: Doctor Refuses to see me.

Posted: Wed May 30, 2012 2:34 am
by DavidCarolina
A YEAR???

Thats unacceptable to say the least. This process requires continual adjustments.

Your doc is in the stone age. Are you near a major city? Search out someone really good and get in there fast as you can.

Re: Doctor Refuses to see me.

Posted: Wed May 30, 2012 3:11 am
by LSAT
DavidCarolina wrote:A YEAR???

Thats unacceptable to say the least. This process requires continual adjustments.

Your doc is in the stone age. Are you near a major city? Search out someone really good and get in there fast as you can.
I don't agree....Once the initial adjustment works...most people do not need a doctor to make adjustments. I personally have not seen my 'sleep doctor' since 30 days after I got my machine almost 4 years ago. I have made 1 adjustment since the initial set up. I have been on a pressure of 12 for over 3 years.

My statement is general and does not pertain to inportsmouthva who seems to have a speciflc problem. Maybe the DME should be involved.

Re: Doctor Refuses to see me.

Posted: Wed May 30, 2012 9:08 am
by nanwilson
I haven't seen my doctor since I had my initial appointment....just over two years ago. I am my own advocate for my therapy, I know how to read and interpret my stats and can keep track by my self. The doctors office has never called me back for any appointments, obviously he doesn't care. So just call me Doctor Nan, as I am self treating and pretty proud of it.

Re: Doctor Refuses to see me.

Posted: Wed May 30, 2012 9:23 am
by chunkyfrog
I didn't see my doctor at all until nearly a year after the first sleep study.
(He wouldn't write a RX for online purchases until I'd seen him once)
Thanks to this forum, I didn't really need him,
but as long as insurance pays, I'll happily donate my time to help educate him.

Re: Doctor Refuses to see me.

Posted: Wed May 30, 2012 4:57 pm
by DavidCarolina
Quite frankly LSAT, youre projecting your situation onto somebody else. This person has come here with a significant problem that needs solved because his sleepdoc refuses to see him. I dont care what you think, just because you didnt have any problems doesnt mean that he isnt.

In my case, I was given an initial pressure of 7 at first sleep study. I returned to office to his consternation and arrogance and said the pressure was insufficient. He insisted i was wrong. Finally agreed to another sleep test. Suddenly and miraculously upon my next visit my pressure is at 13. No apologies of course.

The fact remains that we all know our own bodies better than some chump sitting at a desk who wants you out of their office in five minutes so they can optimize their cash flow. Indeed, this explains my very late diagnosis of OSA and subsequent ongoing complicated series of problems. So I dont think its wise to speak for other people. They know when somethings wrong in their body and if we followed initial Physician instructions "off the top of their head" some of us would be dead.
LSAT wrote:
DavidCarolina wrote:A YEAR???

Thats unacceptable to say the least. This process requires continual adjustments.

Your doc is in the stone age. Are you near a major city? Search out someone really good and get in there fast as you can.
I don't agree....Once the initial adjustment works...most people do not need a doctor to make adjustments. I personally have not seen my 'sleep doctor' since 30 days after I got my machine almost 4 years ago. I have made 1 adjustment since the initial set up. I have been on a pressure of 12 for over 3 years.

My statement is general and does not pertain to inportsmouthva who seems to have a speciflc problem. Maybe the DME should be involved.

Re: Doctor Refuses to see me.

Posted: Wed May 30, 2012 5:33 pm
by ems
Basically, I agree with you, DavidCarolina. Although this Forum has helped me greatly, this should not be a substitution for a competent physician. I see my Sleep Specialist twice a year and will continue to do so.

I realize there are people who don't agree with me, and that's completely fine. However, I will continue doing what I know is right for me.


Edit: "I would drop a doctor who diagnoses "equipment malfunction" by phone and refused to see me faster that a hot potato."

Ditto!