VA "doesn't do" sleep studies?

[quadvet]

That's what I was told. Anybody ever have a sleep study at the VA?

Thanks much.

[RAFS]

That's what I was told. Anybody ever have a sleep study at the VA?

Thanks much.
Hey Matt,
That is not true ! I've had sleep studies at the following VA's :
Albany, New York Wilkes Barre, Pennsylvania & James A. Haley VA Hospital in Tampa Florida.
I'm sure there must be many other VA's in the US that do sleep studies.
If the VA you go to doesn't do them it seems to me that you would be sent to one on consult that does sleep studies. If not possible then you sent should be sent to a VA contract sleep lab that does them for the VA.
See your service officer or patient advocate if you have to to get a sleep study done at the VA's expense. Good luck !

[quadvet]

Maybe it's just my VA. Got it both from my doctors and NSO.

Thanks RAFS.

[RAFS]

Maybe it's just my VA. Got it both from my doctors and NSO.

Thanks RAFS.
Matt,
Your very welcome. I was glad to provide the info to you.
Yes, may be it's just your VA. Then they should send you to a contract sleep lab to get your sleep study done so you can get your machine adjusted right. Press for getting sent to a contract sleep lab.
Good luck with every thing. PM or e-mail some time & let me know how your making or made out in your persuit getting sent to a VA contract sleep lab or to a VA that does sleep studies.

Regards,
RAFS

[quadvet]

Will do bud, thanks. :thumb:

[wazabiker]

My VA, Charles George, Asheville, N.C. does not do sleep studies in house. A local hospital does them on contract with the VA.

[quadvet]

Thanks, Wazabiker. Do you know if that contracted hospital is able to accommodate us with SCI?

[SCI-Nurse]

Have you talked to anyone at your VA SCI Center? We do them at ours. The sleep study center is not very accessible. We can accommodate the studies in a private room on the SCI unit when it is needed (their tech comes down with essential equipment). If the study is being done for sleep apnea (the most common reason) it does not require the full lab set-up.

And yes, if your physician orders it, but it is not provided in-house at your VA, and they put in the proper justification for fee-basis at a community institution, the VA should pay for it. Your NSO needs to talk to someone at the PVA headquarters about this.

(KLD)

[fishin'guy]

quad Vet I had my original study done at Providence in Seattle, since then I beleive most Dr's have their own sites. My Dr was Pasquale, and I beleive he's very close to Swedish In Seattle. I live No of Seattle, and there's 2 S/Study within a mile of me. There should be some near Portland. But check w/ the VA they should have some sort of agreement w/ a study site. Good luck buddy.

[quadvet]

Have you talked to anyone at your VA SCI Center? Yes of course. Was told, as stated in OP, that VA does not do sleep studies, by my PCP. NSO said same.
We do them at ours. The sleep study center is not very accessible. We can accommodate the studies in a private room on the SCI unit when it is needed (their tech comes down with essential equipment). If the study is being done for sleep apnea (the most common reason) it does not require the full lab set-up.I had something like that done at my VA SCI center. It was limited to pulse oximeter, breath sensor and snore sensor, in a 4-man room, TVs blaring, loud talking and nurses running around till after midnight - most assuredly, not a polysomnogram. As my accredited sleep doctor said regarding the results: "That is not an adequate report on which to base anything.". My VA doctor agrees, here (http://www.talkaboutsleep.com/sleep-disorders/archives/Snoring_apnea_spinalcord.htm):
TalkAboutSleep.com: If our readers suspect undiagnosed sleep apnea in someone with SCI, what should they do?

Dr. Stephen Burns: They should ask for a referral to a specialist in sleep medicine... sleep apnea should be confirmed with a sleep study (polysomnography).
Does that not also apply to veterans? The only way to be properly diagnosed and treated is through polysomnography.

And yes, if your physician orders it, but it is not provided in-house at your VA, and they put in the proper justification for fee-basis at a community institution, the VA should pay for it. Your NSO needs to talk to someone at the PVA headquarters about this. Tried, no dice.

ETA: I meant to add a thank you for your response, it's helpful to myself, and hopefully others too.

[quadvet]

quad Vet I had my original study done at Providence in Seattle, since then I beleive most Dr's have their own sites. My Dr was Pasquale, and I beleive he's very close to Swedish In Seattle. I live No of Seattle, and there's 2 S/Study within a mile of me. There should be some near Portland. But check w/ the VA they should have some sort of agreement w/ a study site. Good luck buddy.Thanks Fishin'Guy, I'll get 'r done one way or another. Fortunately I'm 100%service-connected, which also means retired, so Medicare will pick up 80% of the bill at a civilian sleep doctor. Don't know what less fortunate veterans do.

[quadvet]

Have you talked to anyone at your VA SCI Center?

(KLD)Yes, I spoke about this with:

- My PCP, several times
- A backup PCP covering for my PCP, who was out of the office for weeks
- The RT who did my "sleep study" on the SCI Ward and worked with me throughout my admission, and is in charge of home CPAP supplies
- Another RT covering for the primary, who was out of the office for weeks
- Tried to reach my Attending Physician; the desk clerk wouldn't or couldn't transfer me to his phone.
- Twice with Chief of Spinal Cord, through her aid
- My state PVA National Service Officer
- Twice to the Northwest Chapter PVA National Service Officer on the SCI Ward


Any other suggestions greatly appreciated.

[RAFS]

That's what I was told. Anybody ever have a sleep study at the VA?

Thanks much.
Matt,
So sorry your having such a hard time trying to get thru to some one about your sleep study. If you don't get any satisfaction locally maybe the service here on Care Cure Veterans Forum can go to bat for you or how about asking to be flown down here to the James A. Haley VA SCI Center at VA expense? There is a sleep lab on the first floor of the Pulmonary Dept in the hospital building then maybe you could get an SCI Nurse to spend the night with you in the sleep lab room should you need anything during the night. Let me know if you need me to go to bat for you at the Tampa VA getting things lined up so you can come down here & get a proper sleep study done. Hope to hear back from you soon.

Take Care !

Regards,
Bob
Fellow CC Member, Veteran & wheelchair user

[quadvet]

Bob-
Your generous offer greatly appreciated. Since my original post in this thread, I went outside the VA system and had a sleep study done. So, I'm taken care of for now.

[RAFS]

Bob-
Your generous offer greatly appreciated. Since my original post in this thread, I went outside the VA system and had a sleep study done. So, I'm taken care of for now.
Thanks for the info. That's a bummer you had to go outside the VA to get what you needed. Glad your set for now. Hope your sleeping better.
What did the private sleep doctor pick up on? Do also have central sleep apnea as well as obstructive sleep apnea? Are you under the VA's home oxygen program? I am. A respiratory therapist comes to my house every month & checks the ventilator settings, checks the internal & external batteries to make sure they have the right power in them if the house power should fail at least I have battery back up & a huge tank of oxygen to bleed 2litres per min thru the ventitlator tubing. It's so nice not having any private home oxygen service bills to pay.

When are you going to call me? I'm still waiting. It's your turn to call as I called you when you were in the hospital in Seattle several months ago.

Take care Matt !

BOB

[quadvet]

My sleep study results show an approx. 60:40 ratio of Central versus Obstructive apneas, with an Apnea-Hypopnea Index (AHI) of 13.7, no oxygen. I have an appointment with my sleep doctor tomorrow to address it.

Do you have central sleep apnea? What CPAP machine do you use, and what pressures? Bummer you have to use oxygen, sounds like you sleep good though.

Sorry for not calling yet, all kinds of excuses. :o Soon, I promise, looking forward to it. :thumb:

[quadvet]

The silence is DEAFENING!, but the message is LOUD and CLEAR:Secretary Shinseki has demanded that all veterans enrolled with VA get the best health care available anywhere (* (http://www1.va.gov/opa/pressrel/pressrelease.cfm?id=1661)) This ain't happening; never been, and don't plan on it ever being.

And don't come around here looking for help, even with such a blatant case of neglect and abuse...

[cheesecake]

Quadvet~
I am glad you got your procedure completed but very frustrated to see the difficulty you had. If you would PM me, there is a program that I believe you are eligible for where someone else fights for you. So far, I have had good results while helping others this way.
Drop me a PM and I will see what I can get in place.

[quadvet]

I'm so forking exhausted and chest hurting so bad, I know it's killing me. I'm going to start using this thread as a sort of journal as to what is going on. Because I have so many other threads about this already, the first in Dec. '07 here (http://sci.rutgers.edu/forum/showthread.php?p=762435#post762435).

Lots has happened since then; two fully scored polysomnograms, three different types of PAP machines, a multitude of masks and chin straps, and a MAD (mandibular advancement device, designed to hold the lower jaw forward so as to prevent the tongue from dropping rearward and closing the airway).

The trouble is getting a mask to seal. My chin drops to the rear, the MAD I have doesn't prevent that. So I use a ton of tape, as pictured.

[Simpler Times]

Quadvet, I believe that is a Mirage Quattro mask you are wearing in that photo, and I have never heard of someone being so difficult to fit that tape was an acceptable solution. Night after night that has to be very hard on your skin. I am a polysomnographic (sleep) tech and if you have a decent medical equipment company, they should be willing to come out to your home and take the time to properly fit you for a mask. Everyone's chin drops back as they relax and get into deeper stages of sleep, particularly in REM where your body is essentially paralyzed, unless you have a REM related disorder or some other issue going on. I am not a physician, just a tech, so I am not giving medical advice, but there is no reason for you to suffer with this issue. Have you tried different styles/brands of masks? We use Resmed, Respironics, and Fisher and Paykel just to name a few. Then there are various styles: nasal, full-face, nasal pillows, and even new hybrids that address difficult fitting patients such as yourself. Call the center where you got your sleep study and ask if they can direct you to a company that can help you get a proper fitting. Hope this helps. Have a great day! And night!

[Simpler Times]

One last note, MADs are usually reserved for patient's with minor sleep apnea issues and not usually used with a mask. Actually I have never known of any patient using the two together, however I have only been in the field for two years now. Have you tried using the mask without the MAD? In my personal experience, I have the best luck fitting difficult to fit patients with Fisher and Paykel masks. Go online to the various websites and see whats new. With many medical equipment companies, as long as you return the mask in less than 30 days, you can try as many new masks as you need without incurring additional cost. That may be different in your area. BTW, Hampton VA does sleep studies.

[orangejello]

The trouble is getting a mask to seal. My chin drops to the rear, the MAD I have doesn't prevent that. So I use a ton of tape, as pictured.

Yikes! That doesn't look very comfortable :(

I hadn't seen this thread until now. I hope you can find a solution somewhere. I have a different kind of sleeping issue but I know the frustration and exhaustion that really starts to wear a person down when it keeps going on and on. It is very hard on the body and makes getting through the day so much harder than it has to be. Sending good thoughts your way.

[Simpler Times]

Quadvet, a second look at that picture and I realized that mask is not properly positioned. The top of that green triangular piece should be closer to the bridge of the nose than the forehead.

[quadvet]

Simpler Times,
Thanks for your posts, great to have a sleep tech on the site. Yes, I have done what you suggest. Having no upper teeth is the stumbling block. Air leaks substantially out the sides, because the teeth aren't there to prevent my cheeks from caving inward. Also because of the missing teeth, my jaw muscles lack tone, and that, I assume, allows my jaw to drop further and more readily than otherwise. These points are why my doctors are wanting me to try the MAD dental appliance in conjunction with the mask.

I haven't had positive results with the one MAD I have that is made for edentulous patients [it won't stay in place], and my VA dentist is making a different type of device he thinks might do the job. I'll report on that, when I get it.


Quadvet, a second look at that picture and I realized that mask is not properly positioned. The top of that green triangular piece should be closer to the bridge of the nose than the forehead.That is because standard mask dimensions, length by width, do not fit my face. That is also a result of the missing teeth; my mouth closes further than what is normal.

[quadvet]

Yikes! That doesn't look very comfortable :(

I hadn't seen this thread until now. I hope you can find a solution somewhere. I have a different kind of sleeping issue but I know the frustration and exhaustion that really starts to wear a person down when it keeps going on and on. It is very hard on the body and makes getting through the day so much harder than it has to be. Sending good thoughts your way.Adapt and overcome... well, at any rate, we adapt. Thanks for your kindness, I hope your sleeping issues can be improved.

[skippy13]

I'm rather surprised that the VA hasn't simply suggested providing teeth for your upper jaw. It would be too simple though, and I'm sure that there are reasons why you have not done this, but I know that the VA does dental implants and makes dentures for vets. Maybe it would help.

Lack of sleep and proper breathing while sleeping can be very harmful to the body long term. A little dental work if appropriate wouldn't be too much to ask.

[Simpler Times]

Quadvet, have you thought of trying nasal pillows with a chin strap to hold your mouth closed? I myself do not like the direct pressure of air going up my nose, gives me a headache. However, many patients love these.

[quadvet]

Skippy13, I do have dentures, but they don't do the job. I thought of tooth implants, but did not know the VA provides them. The VA dentist did tell me that if this second dental appliance also won't stay in place, he will put a couple implants in my upper jaw to anchor it to.

Yes, Simpler Times, I have tried nasal pillows, nasal prongs and nasal masks, and the hybrids. I liked the Swift nasal pillows best. But even the best of chinstraps exacerbates the problem of my jaw dropping posteriorly. Which is not uncommon, from what the VA sleep tech said, and what I have read online.

At this point, I am waiting for the new MAD dental appliance the VA is making for me. The dentist took impressions for it on June 1 and said he will call me when the unit is ready to try. As I said above, if it won't stay in place, he plans to do implants to anchor it to. I don't know what else to do but wait.

Thanks for your responses.

[smokymtn memories]

I wondered how it was going, slow as usual. I think he's going to have to do the implants and wish they'd just do it and get it over with.

I was worried you had'nt stayed on top of it and it seems you've done about all you can do until the new unit is ready to try. You know you can vent to me anytime M~.

T~

[quadvet]

Got a problem with my head and neck position that I can't figure out how to solve. Neck positioning pillows have not helped. And I don't see how a dental appliance can help, either. Side and stomach sleeping are not an option for me.


Laying in a relaxed position, as would be in sleeping. My chin is jammed into my chest, closing the airway:
http://i88.photobucket.com/albums/k170/Valiantdogs/_neck1.jpg




How I have to rock my head back for my airway to be open; neck muscles can't be relaxed, or my chin will jam to my chest, as pictured above. No, I am not thrusting my jaw forward (hence, why I don't see how a dental appliance would solve the problem; might help, but not a solution):
http://i88.photobucket.com/albums/k170/Valiantdogs/_neck2.jpg



How I've been surviving for years; a few hours a day of very poor sleep in my wheelchair; with the chair back reclined flat and the head rest adjusted to the best position available- obviously not optimal for treating sleep apnea:
http://i88.photobucket.com/albums/k170/Valiantdogs/_neck4-1.jpg


Edited to add: Experimenting with a hole cut in mattress under my head, trying to replicate above chair position:
http://i88.photobucket.com/albums/k170/Valiantdogs/neck_1norag.jpg
Note that my chin is in a better position, but my head and shoulders aren't on the same relative plane as when in my chair. In my chair, my shoulders are much lower, and that helps rock my head into a more natural position.


So, I tried putting a rolled up hand towel under my neck, but it was too thick. So I used a rolled up washcloth (smaller) and got this:
http://i88.photobucket.com/albums/k170/Valiantdogs/neck_2withrolleduprag.jpg
Which made some difference, but first night experience is a big fat negative. Didn't work.


Another angle, showing how deep the hole is under my head:
http://i88.photobucket.com/albums/k170/Valiantdogs/neck_3showinghole.jpg
Note the tracheostomy scar from being on a ventilator when I first broke my neck... don't want to go that route!

I tried a Tri-core neck positioning pillow (see it below), but it only compounds the problem:
http://i88.photobucket.com/albums/k170/Valiantdogs/_neck3.jpg
Tri-core neck positioning pillow:
http://ecx.images-amazon.com/images/I/2117qhcxSUL._SL500_AA300_.jpg

[smokymtn memories]

I would have thought the people doing the sleep studies would have run across problems like this before and come up with something that would work.

Keep at it M~....don't give up! By the way, I like your sheet/blanket. Looks like some of the flannel I've used to make pj bottoms! I'll talk to you soon. T~

[cheesecake]

Hey Quadvet: Just wondering if the Bopp pillows that you feed an infant in or the nect pillows for sleeping on airlines might work?

Thinking outloud

[quadvet]

The thing that's killing me, literally, is that this is a treatable condition, that isn't being treated...best care anywhere, my ass!!!! http://forum.akron123.com/images/smiles/akroncdnr/SmilyYellowThumbDown.gif

[skippy13]

I have found that here in Oregon they pick and choose what they will treat and what they will not. I have been in the VA system for over two years and have finally been offered a doctor of my own. Prior to this I have been seen only by PA and NP. I love the NP don't get me wrong, but they can only do so much.

I wish that they would help you to get the proper treatment, but we cannot make them do what they do not want to do. I have tried and failed many times at the VA and have had to resort to Medicare that I pay $300.00 per month for to get necessary surgeries and other treatment such as PT.

We are not alone Quadvet. I have heard from many other vets in Oregon that the care is practically rationed. It should not be this way but it is. For any that are 100% permanent and total (like me and you) they are supposed to take care of any and all medical needs. Here in Oregon I have heard repeatedly that they will only treat the very narrow area of service connected injuries or illnesses. Nothing else. I have run into that problem repeatedly myself.

I hope you can finally get the proper setup for your needs. It is your right.

[chasmengr]

VA Omaha has been great to me. I have a PCP, a neurologist, a PT & a psychiatrist. They have bought me a nice wheelchair (TiLite AeroZ), and I'm having an overnight sleep study done next Tuesday night. I have Medicare, too. But I choose to use VA because it is great (except slower for non-emergency appointments), and a whole bunch cheaper!
My MS is NSC.

[SCI-Nurse]

We are admitting one of our C4 SCI veterans next week for a sleep study. He initially requested fee basis to have it done at an outside facility, but could not find one that could or would accommodate his needs for care during the study (as a person with tetraplegia). We fairly easily arranged a 23 hour stay on our SCI unit and we set it up with our sleep study people.

Keep in mind that every VAMC is different. As we always say, if you have seen one VAMC, you have seen one VAMC.

Regardless, your denial of services should be taken up with the PVA service officer for your area. It is not an acceptable denial, esp. since there is clear evidence from research that SCI can be a direct cause of sleep apnea.

(KLD)

[quadvet]

hopeless

[SCI-Nurse]

hopeless

????

(kld)

[quadvet]

????

(kld)Not ignoring you, just not sure what to say (without getting into technicalities beyond my ability, here and now). Both diagnosing and treatment of SA can be complicated; and accepted protocol is flawed. But who am I, that anyone of consequence would listen to. VA SCI docs' scope of knowledge is challenging enough. I'll keep plugging away at "protocol", but the effects of sleep deprivation is hell; not withstanding years of continuing untreated "moderately severe" sleep apnea.

Still feel it falls sorely short of the "best care anywhere" mantra, on the one side; and closer to the "delay, deny and hope that I die" mantra on mine, the receiving end.

Thanks for your concern, KLD; I know you care very much, and have expressed my gratitude for that before.

[fishin'guy]

Quadvet, so sorry you have such a problem with fitting the mask!! I feel very fortunate to have a good fitting mask, after 20 yrs of sleep apnea, I feel for ya, no sleep or fitful sleep can be a buggar, I feel for ya.Good luck buddy. Guy

[skippy13]

I know it would be expensive, but why can't they custom make or obtain a specially made mask for you? (I just thought of a new business to try! Custom made apnea masks.) There must be someone capable of doing just that somewhere in the world.

Being that I am in the same VA system as you, are, I understand the frustration you have about it all. It seems to take forever just to get to the right solutions for your medical problems.


PS...I just googled custom made sleep apnea masks and came across a website or two that actually make them from a mold of your face. I'm sure that there is a solution to your problem, but as I said before it will be expensive and we both know how our local VA doesn't like to spend money on outsourcing care. Start demanding that they custom make a mask for you. After all, your very life depends upon it.

[SCI-Nurse]

I agree. There are custom solutions out there. If your VA does not do this, then they should be providing this through fee-basis contracting. If no one is helping to push through a fee-basis consult for you, then you may need to go to your PVA NSO and ask that they file an appeal and work on this request in your behalf.

(KLD)

[skippy13]

QV, you want an advocate? I will kick some stuff for you. Just let me know.

[smokymtn memories]

Skippy it's a disgrace that you, Quadvet, and other vets have to fight for normal care! Resolving the sleep apnea problem should be a no brainer! One should not have to fight for their care, but I agree with Skippy, fight for the treatment you have every right to receive!

I can't believe how long they are taking!!!

[cheesecake]

QV~ I know you have been pushing long and hard and still have no resolution. You need a hand, say the word and I will assist in whatever way I can.

I fear for you each night--knowing how severe your apnea is, please accept help from us to help you.

[quadvet]

Thanks all for your concerns and suggestions and offers. There are a host of issues, not just the mask. I have an appointment with a local civilian doctor this week that may help. And upcoming appointments at my VA SCI Center and local VA.

[Gulfdav]

Bay Pines VA in St. Petersburg has a sleep clinic.

[semperfidelis79]

I know mine asked me few times but i refused

[SCI-Nurse]

I know mine asked me few times but i refused

Why? Sleep apnea is more common in people with SCI, and can seriously impair your health. There are treatments if you have it.

(KLD)

[quadvet]

I know mine asked me few times but i refused That's what I said about CPAP back in 2002 when first diagnosed with sleep apnea at my VA*. Tried CPAP at the time; horrible experience (machine not adjusted/set correctly). Was told I would die in my sleep eventually, without treatment. Figured what the heck, let nature take its course.

Fast forward to 2008, I'm hurting so bad I'm begging for help. Another "sleep study"* and get my first CPAP. Complications discussed in this thread prevents successful treatment. Pushed hard and finally got approved for fully scored polysomnogram/sleep study and assistance with factors complicating treatment, at a civilian sleep lab. Results showed "moderately severe" sleep apnea, on the accepted rating scale of mild/moderate/severe. However, said civilian sleep lab unable to rectify complications.

With much research and talking with multitudes of sleep apnea sufferers both on and off-line, I discover possible solutions to complications preventing successful CPAP therapy. Pursued the solutions through the VA; met with resistance and disproportionately long waits.

Fast forward to present, still begging for help; things moving too slow; following "protocol". But I am the exception; treatment is not normally so difficult.

When CPAP therapy is working right, it's a GREAT feeling. Don't neglect yourself, Marine, you're too young.

Welcome to CareCure. :)


*bedside oximeter test, Not Polysomnogram/fully scored sleep study, as discussed in this thread

[smokymtn memories]

I just don't understand why it is so hard for the va to help you! The time it is taking is unreal! Are you even getting any closer to receiving the help you need!?

All those years! It is unbelievable! They should be ashamed!!

[quadvet]

I just don't understand why it is so hard for the va to help you! The time it is taking is unreal! Are you even getting any closer to receiving the help you need!?

All those years! It is unbelievable! They should be ashamed!!I don't know the answer to that question, because I don't know what the solution is. Yet.

I've had radiofrequency ablation of my nasal turbinates x 3, which seems to have helped some. My VA dentist made an oral appliance designed to prevent my lower jaw from dropping posteriorly, to help prevent airway obstruction. Got it last week, after working on it for over a year, and many appointments. Unfortunately, it didn't work. Called and was waiting to hear what comes next, but will call again today, see if i can get any action...

Yes KLD, the PVA National Service Officer at my VA SCI Center has been involved for some time...