Well, I would START by writing a letter to the sleep lab/doctor requesting a copy of the doctor dictated results from each of my sleep studies & titrations AS WELL AS the full scored data reports w/graphs for each. I would send that written request via Certified Mail, Return Receipt Requested. Your wife should do the same, in a separate written request and Certified Mail, Return Receipt Requested mailing.pjd wrote:Well I’ve about had it. I just got a message from my sleep Dr stating “let’s put off treatment until the insurance will pay for another sleep study”; that means wait at least another nine months for any change.
My fifth sleep study in three months was denied by my insurance as unnecessary; I’m glad I had the foresight to ask for pre-approval; otherwise I’d be paying the 3K bill. My last study was an ASV titration on a Respironics SV when the order specifically stated ResMed Adapt SV; the lab claimed that the machines were identical in every way. Well, after fighting all night with the Respironics SV’s tendency to run wild, blowing high pressures and cutting my exhalations off in mid expiration, I only managed about 30 minutes sleep. Of course they were unable to get any useful data, and my Dr’s report actually calls it a VPAP titration and recommends a future ASV titration when my "insomnia" due to PAP is under control? I am 100% CPAP compliant, and sleep 6-8 hours every night now! Unfortunately, I have not noticed a great deal of improvement in these past three months using the wife’s CPAP.
Here is the kicker, I have been diagnosed with severe complex sleep disorder breathing including pressure induced central apneas and I have been prescribed CPAP at 14 cmH2O, but with my Dr’s permission I have been using my wife’s CPAP set at 8 cmH2O while waiting for the study results. This same sleep Dr prescribed her machine several weeks before my first visit for her insomnia; it was a pre-approved outright purchase based on her 1 central event and 40 some minor hypopneas. ChaChing to the DME as they dispensed the very basic S8 compact without a thought of a rental period; they got their money and did not look back and we did not know any better.
So here I am, using the wife’s CPAP at less than ideal pressure, and denying her the use of the therapy, and the Dr wants to wait another nine months! I should note that during my first titration study I still had 24 events at 14 cmH2O, 17 being central apneas, and at 8 cmH2O I had 25 events, 16 obstructive and 8 mixed apneas, but no straight centrals. The biPAP titration part of this study at 16/12 resulted in only 9 total events, 3 central apneas and the other 6 all obstructive hypopneas, but my O2 was still down to 81.9%.
Incompetence, malpractice, blatant disregard, money grubbing thief, or simply par for the course? Dr E has been responsible for billing my insurance company over 12K with my four studies and treatment, or actual lack of treatment. His office only accepts messages, never an actual person, and it might take a week or more to get a call back. After the first sleep study, each subsequent sleep study was ordered with the previous study’s criterion, so if not corrected by me all the testing would have been duplicated. Dr E is a sleep specialist and a diplomat of the American Board of Sleep Medicine and does not prescribe autoPAPs because they use “algorithms”. Oh, and another point, Dr E has a habit of writing in reports about things not said or discussed at appointments as if they were truths, while conveniently omitting actual issues and details; I actually interrupted his last exam room dictation to correct several blatant errors and false statements. Then, when finished, in a very condescending manner he asked if that was now ok with me.
So what’s a person to do? Any suggestions for a good Central Ohio sleep Dr. who actually knows what they are doing; maybe someone open to the latest technology and treatments; and my personal opinion and advice is to stay away from Flint Rd. if you want quality care.
Fatfeminist, are you still happy with your Dr? Is he Dr Kim at the Sleep & Breathing Research Institute? I am starting to think that a pulmonologist might be a better choice than a neurologist for my breathing related sleep problems.
Then I would call my insurance company and ask 1] what local sleep labs they are contracted with and 2] what local DME CPAP suppliers they are contracted with.
Is this Dr E "the" sleep doctor that "reads" all of this sleep lab's evaluations and titrations or is he the "referring" doctor?
I'm curious as to whether you are working w/3 separate entities or just 2 separate entities: 1] doctor + sleep lab + DME supplier or 2] doctor/sleep lab + DME supplier.
I'm questioning whether you really do have central sleep apnea, mixed obstructive apnea, "just" sleep apnea or sleep apnea + insomnia and/or whether you have a lung/breathing problem contributing to those low 02 desaturations. Do you perhaps have reflux/GERD contributing to your sleep problems?
I'm also wondering where your family doctor fits into the picture if at all.
I don't think that any of us here doubt that you've received poor care, advice and treatment from this doctor/sleep lab combination. Whether just one or both are at fault is difficult to discern.
As others have advised, I'd move on to another "sleep specialist" w/my raw data in hand (the full scored data reports w/graphs) and hope and pray that the data is sufficient for him to begin better, more accurate treatment of your sleep problem(s) until enough time has elapsed for him to order an insurance reimbursed sleep evaluation and titration. Be prepared to accept that the "scoring" itself from the evaluations and titrations done by your current sleep lab may be in question and poorly done.
Good luck and God bless!
