Frustrated in Ohio AGAIN!

[pjd]

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.

[dsm]

Sorry to hear that pjd. Not good.

Any doc that tells you that the Bipap SV & Adapt SV are identical is either confused, incompetent or simply dishonest.

But that bit aside, you do sound like you are in the clutches of a difficult medical person. 5 sleep studies ? - hmmmm.

I think you have answered your own question in regard to the value you can expect from this doc in the future. None, it would appear. The evidence suggests that the only value in this whole equation is the $s he is extracting from your insurance company.

It seems it won't get any better with him.

DSM

[gijane43]

I understand this whole process can be frustrating. I'm a RPSGT that used to work in Central Ohio. I moved to IN for personal reasons. Not to change the subject.... I worked under a group of Docs at the hospital I worked at. I am recommending Dr. Timothy Walter and Dr. Uma Marar. They have a sleep lab by the name of Capital City Sleep in Grove City. They are very professional and I highly recommend them. They have a few other offices also but are mainly out of Grove City. Dr. Walter was my medical director for about 2 1/2 yrs at the facility I was employed. Hopefully they can help you. They do have a web site with all the info you need.

Good Luck,

Lisa Mahoney, RPSGT

[rwalther]

I'm convinced that virtually everyone purporting to be "experts" in this industry ... are really middle-ages village-idiots reincarnated as "Sleep Experts".

I was really lucky. I was in the hospital to remove my gall bladder, my doctor said "You snore a lot and obviously have OSA." He prescribed an "Auto-CPAP w/ Full Face Mask" ... and I got my stuff from CPAP.com and have been sleeping gloriously ever since. I watch my own data, make my own adjustments, and have had wonderful success. My insurance even paid 80% of the CPAP.com bill. Since I didn't have a "Sleep Study", I figured I'd have to pay for it myself, so this was a nice surprise.

The more I hear about these nightmares ... the more I appreciate how simple my experience was, and how flexible my doctor was.

It almost feels like there should be a "black market" for this stuff, for those that can't get it "legally" (AKA: "reasonably").

"Hay buddy, take a few whifs of this CPAP. First one is free. I'll throw in the humidifier, but don't tell anybody whose car-trunk you bought it from."

Rusty

[HelpMeBreath]

If you believe he is soaking your insurance company, you should contact them and show them whats happening. I hate insurance companies and I hate how litigious this country is, but I also cannot stand rubber stamping doctors who have lost site of their purpose.

The sleep center here in Wisconsin knocked $2,000 off of my study because I didn't have any money. My final bill for two studies (the first one I couldnt fall asleep) was $600. The seemed genuinely concerned with my health and asked me to just give them some good press. Thats how business should be conducted.

[ozij]

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.

Or buying a machine out of pocket.

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.

You are using what???? Your wife's cpap?????

And what has the wife been using during these past thee months? NOTHING
Because she has "40 minor hypopneas". What makes them minor?

How much a month would a second very basic s8 cost you, for you very own temporary use? https://www.cpap.com/productSearch.php? ... ompact&q=1

$425/3 = $142.

For a 3 months saving of $142 a month you have been denying your wife her therapy. You could have used her prescripition to by a second machine. , no need for the machine to drop off the truck, Rusty.

If your doctor gave you medical permission to use an S8 compact at a pressure of 8 you should have bought it. Your doc would have been glad to sell it.


O.

[sleeplessinaz]

OMG!! I AGREE with OZIJ!! Let your wife have her machine and her life back for pete's sake!! Why is she deemed less important that YOU????

A fifth sleep study in three months was denied as unnecessary are you are questioning that? Why on earth would you need more than 2 sleep studies-----???? I would think 5 or 6 IS-- EXCESSIVE in my book!! LOL!

Maybe your problems are deeping than sleep apnea---I would get a new FAMILY Doctor to run some tests to see what else might be wrong besides seeing a sleep doctor that knows nothing about you----Sounds like you need to do more reading and more research bud!!

SIAZ

[fatfeminist]

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.

i am very happy with my Dr. (and ys it is dr. john kim) the times i have seen him he has been really awesome to me, and his office has been more than helpful in getting the info to the DME to make me getting a higher quality machine a streamlined process. i would gather any of the dr's at that practice would give you the same quality care, i think they are all pulmonologists.

good luck!

D

[rested gal]

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.

Identical in every way? No, they aren't.

[tangents]

My opinion:

1. Get copies of all the data from your sleep studies. Full reports, not just the summaries.

2. Make a spare copy of each one.

3. Take one set of data to a new doctor (Dr. Kim sounds great) at the first appointment you can get. Discuss with him which machine to get - without another sleep study. Make it a data logging machine and tweak your therapy with his help.

4. Give your wife's machine back. She deserves a good night's sleep too.

An alternative to the above is simply to buy an inexpensive CPAP machine for yourself, like the M Series DS100 CPAP Machine with Heated Humidifier for $333, like Ozji suggested.

[pjd]

Thanks for the help and recommendations. Especially you gijane43, it is nice to get an “insiders” perspective. I have trolled a few of the professional boards and I have been shocked at what some report as their standard sleep clinic practice; of course that is why they are complaining, but apparently it happens. I am starting to think that rwalther is correct when stating:

“I'm convinced that virtually everyone purporting to be "experts" in this industry ... are really middle-ages village-idiots reincarnated as "Sleep Experts".”

Each profession has its stragglers and must find a less demanding and potentially less damaging arena for them to work; neurology apparently has their “Sleep Experts”. Of course there are always the few exceptions that shine, and that is who I am looking for to manage my sleep related paperwork.

DSM, I should have qualified my rant concerning the five studies. At the first one I did not sleep at all; just laid there all night in bitter disappointment with myself for not sleeping. Likewise, as stated, the forth ASV study was a wash as well for lack of sleep; but the second and third studies got results with 3 and 4 hours sleep, respectively. The fifth and denied study was to be another ASV titration on the Adapt SV without substitution. My real disappointment with my Dr was his complete lack of interest in my wellbeing, and his unwillingness to expend any effort to secure additional testing or treatment that he initially felt was necessary; simply abandoning treatment when the insurance started asking questions.

HelpMeBreath wow, good for you, my sleep studies have been billed at over 3K per night and then the Dr bills another $300+ to read the results. Then on top of that he bills another $100+ for each office visit. My insurance cuts those numbers WAY back, but still pays more than they should for his level of service. This is a true fault with the American health system; contracted fee reductions that are driving medical cost inflation at the ultimate expense of those without insurance and least able to negotiate or afford the inflated cost.

ozij, thanks for the reality check. I won’t say I am not concerned for my wife’s breathing, but during both sleep studies she showed no fluctuation in her excellent oxygen levels and slept the whole night each time. Her primary concern has been insomnia and she was disappointed with CPAP from her first trial. If it had been a rental, I suspect it would have been returned long ago. After her titration study the lab tech actually told her the results were in the range where CPAP was not necessarily indicted. The Dr apparently pushed the order through, possibly as justification for the titration study and his related fees, or on the chance that she might benifit; but we were ignorant of the results and options at the time. Either way, we were both his patients and he had no problem with me using her CPAP, and her going without. Again, a standard of care issue for one of us, if not both, and I think the Dr should have reacted when I reported using my wife’s CPAP. Oh and the DME billed the full max. $ for the S8 compact, not a discounted price like available here; we just did not know at the time.

Thanks again fatfeminist, good news and experiences are encouraging. And sleeplessinaz, my real sleep study problem, besides that stated above, is my inability to actually sleep connected to the polygraph in a strange and often less than ideal setting. Also, I should make it clear that I did not abscond with my wife’s CPAP while she had a desire to use it; no, I just used the equipment available and paid for that was sitting unused, but we both appreciate the concern and suggestions.

Thanks again everyone for the help and thoughts. I really do look forward to finding a real sleep Dr.

[ozij]

Good luck, PJD.

Do get another cpap, and tell your wife that frequently, the problem is breathing disturbances that don't affect oxygenation, but result in fragmented sleep. Look up UARS (Upper Airways Restriction Syndrome) on this site (e.g. posts by BarryKrakowMD) and other places. CPAP may definitly help people with UARS, but it takes getting used to. UARS is far more prevalent among women.

I hope you will find better doctors.

And you wife is welcome to register and ask for tips too!

O.

[RichCMH]

I see Dr Maureen Delphia in Columbus. She has office hours at Grant Medical Sleep Lab downtown as well as her office near Mt Carmel.

My DME is HomeReach affiliated with OhioHealth-Grant/Riverside. The RT was great but they, as all DME's do, overcharge! $42.77 for a 6' hose!

Now comes the really fun part... OhioHealth (O.H.) has horrible billing/account management system!!!!!!!

O.H. called me 3 months after the studies and wanted payment. I said I never got a bill! I finally got a bill and started making payments. In July now 7 months into making payments I was called because I was not making payments. It took me 30 minutes to convince the person I had been making payments. They finally pulled up ALL of my account info and said, oh it looks like you have... and it looks like this was never submitted correctly to your insurance! REALLY??

So as the dust settled on a new insurance claim, I owe $1046 for each study, insurance picked up an additional $1000 on each - cool! I continue to make payments on my account.

I get a call in October again asking me when I plan to start making payments - that I have an account with $1046 outstanding. I said that is impossible I have sending and O.H. has been cashing my checks, thus I owe just over $400! I could not convince the person of this fact! I had to go to the OH offices with bank statements, cancelled check print-outs to convince them of how much I had sent them.

It turns out I had TWO accounts and I had been paying on ONE, actually overpaying on it! They showed me as overpaid! They actually owed me $$, but never bothered to let me know that OR - better yet - credit $$ to the second account! REALLY?

Two months later I am at $100 and I get a notice that my account had gone to collections... REALLY?? I sent the last $100 to O.H. and the collections people keep calling. I told them to call O.H. Sir, we cannot do that... REALLY?

I had to call O.H. and get a supervisor to call the collections and finally, it is all resolved and done! WHAT A F'n MESS!

Sorry... I had to vent - I feel better now!

-R CMH

[lifeartist59]

After reading the mess that the person had with billing, I was wondering who here in Ohio you can report this to. Maybe the Attorney General? Something needs to be done, since that can really mess up your credit scores etc. I live in NE Ohio and so far have not had those sort of problems with my treatment and testing center. Best of luck to you, hope you can get it all straightened out!

[pjd]

Ranting mode activated:

OK, not meaning to hijack this thread, but this is a big part of my frustration; just who do these companies think they are, trying to keep us out of the clinical menus? I mean, who has a prescription that they can not confirm? If my pharmacist gave me a bottle of pills that simply said take one a bedtime without the amount and dosage clearly labeled, I would give the pills back or report them to the licensing board. I can not imagine that the FDA would knowingly allow DMEs or manufacturers to keep prescription information hidden from the end user. The FDA has all sorts of disclosure rules, regulations, and laws; I suspect that is why those clinical manuals are even included in the PAP packaging. The fact that there appears to be no specific law concerning adjusting PAP pressures yourself supports the fallacy of this practice of removing the manual.

Likewise, I believe that there are FTC consumer laws that forbid the advertising of features that may not actually be available. For example, nonprescription comfort features such as ramping times and reminder messages are advertised as features but they are only accessible from the hidden clinic menu. This would seem a clear violation of these Federal consumer protection laws.

Why do we accept this poor treatment? Why do we each have to fight our individual battles when we could band together and work together to end this crappy treatment? Is there any doubt that each of the PAP manufactures is setting minimum internet pricing policies because Medicare is starting to evaluate online pricing in setting their payment schedules?; and everyone knows, as Medicare pays, so does most insurance.

We are a relatively small group in the big picture, but a few targeted letter writing campaigns and appropriate complaints just might have a significant impact. As is said, the squeaky wheel gets the grease. And as much as I dislike frivolous lawsuits and class action claims that only make the lawyers rich, I’ve seen a few class action websites trolling for this type of big number, big money claim. Sometimes, I wonder if it might be necessary to utilize the tools you have to correct these systematic problems.

Ok, I know, class action lawsuits would likely drive up the price of PAPs, as would fines and other regulatory actions, but do you affect change or just accept the status quo? Is there really any interest in an organized protest at any level of effort, or are we just fogged into a brain dampened sleep deprived state of passivity? We are to be SERVED as patients and consumers, not TREATED as the bottom of the product chain, those that simply and blindly fill their coffers without question, concern, or consideration.

I am sure it is painfully clear that I am not a lawyer, nor do I try to play one on the internet. I just get tired of Drs, insurance companies, manufactures, and DMEs pushing people around. DMEs think that they deserve more money because they provide service? Like only servicing or adjusting the equipment that they sold; sorry you moved, just buy new from us for service, we do not touch or adjust pressures on any equipment that we did not sell. Some service, and locked into them for the life of the PAP, well worth the premium price; we all know that DMEs charge outrageous prices and accept it only because our insurance beats back the price. But, some people are not so fortunate and are forced to carry the entire burden when they are least able to do so, and that is not right. We all suffer when this type of pricing shenanigans happen.

Rant mode off.

Sorry.