CPAPtalk.com

So, I'm back... Been VERY busy with school, life and everything else related and in between.

I have neared the end of my dental device road and am not seeing the results I want, but have yet to get titrated via PSG. I am seeking a 2nd opinion for a partial-UP3/tonsilectomy, and am scheduled for initial MMA/GA consultation.

I am in school right now and starting to work full time while doing school full time. My sleep has been horrible lately with sleep onset not until 6AM or later, which means I usually sleep in until 2:00 becuase I feel horrible (keep in mind my OSA is minimally treated with dental device).

I have no insurance, have been turned down, and the companies that provide coverage are just out of my broke, poor college student range. I have successfully been getting financial help via loans through financial aid and through voc rehab and hospital's income assistance programs. A fee of 1500 is expected for UP3 and 6K for MMA/GA, with both not being affordable at the moment. Becuase of this I have sought to become Independent status financially through my school. (When filing FAFSA for financial aid, one must be 23 on Jan 1st of the filing year. Even if a student is financiall independent from parents, only very specific cases can he be considered Independent.)

I am 23 and my first semester of Independent status is not until this Fall semester (2006), so this is my last semester of Dependent status. Why is all this being typed? Well, becuase if you're Indepedent status your are eligible for higher loan amounts. I don't have $$ for surgery, and am seeking to finance them through school loans... Independent status allows for more loans and probably enough to cover whichever surgery I choose. Make sense? (Eh, stick with me even if it doesn't).

To be considered for Dependent override and granting Independent status is via special consideration of my financial aid counselor and the head officer. I have to have three letters written to show my need... Well, here comes the good part...

I call my sister to ask her help in writing a letter, and explain the reasons so that I can get $$$ to help get surgery. "I think you need counseling becuase you have psychological problems. I think most of your problem is in your head". My reply, "Obviously you don't know my disorder... CLICK".

It's just another one of those comments from people who don't understand OSA that really pisses me off. Yah, I really want to wake up 55 times an hour. I want to never reach deep REM sleep and never wake up refreshed. Seriously, how stupid are some people? Its just like people telling us were "lazy" and just need to "suck it up".

I'm done venting... Back to your regularly scheduled CPAP.com posts.

-- Cory

Oh Cory,

Of course you needed to vent! Your sister clearly has no idea what you are going through, and worse, apparently doesn't want to understand! That is truly the pits, to get a response like that when you are asking for her help.

Here's hoping that you can get everything that you need to gain your "independent " status and can then meet your medical needs.

I am impressed that you are able to deal with all of this given that you are getting so little quality sleep.

Take care!

Cory,

You already tried one treatment method (at least reversible) that is not suggested for your level of OSA, don't follow it up with another that isn't reversible! I would DEFINITELY not go the surgical route!! (Not unless you like squirting fluid out your nose, and all the other problems, not to mention the EXTREMELY low success rate and the fact that you end up on CPAP anyway, and it is even harder to get working after UPPP!)

There have been a number of people that have COMBINED dental devices with Pillar and gotten PROVEN results via PSG.

If I were in your shoes, I would try EVERYTHING before surgery. Including finding a way to make CPAP work.

I agree, don't go the surgical route. Most are designed to decrease snoring, not really treat OSA. You can still have OSA even if you don't snore. You have severe Sleep Apnea, possibly related to OSA, possibly not. Obviously, your tongue falling into your throat is not the reason, or the dental device would have worked. Most surgeries are NOT designed for severe Sleep Apnea, which you have.

What kind of apneas did your last test show you had: Apneas, Hypopneas, central apnea? How many of each. This is important, because all of these go into your AHI number. Were you able to achieve REM or Deep Sleep? I doubt it. Are you seeing a Sleep Specialist? If so, they could certainly write a letter as to your condition being serious. As well as other doctors you've seen or will see for your condition.

As to use of CPAP, don't forget Awake in America who sends out machines at no cost to low income or no income people. The machines are sometimes new, and so are the masks and humidifiers. They sent out several machines to the Katrina victims.

I don't remember why you are against using a CPAP. Claustrophobia from the mask? Don't forget the nasal pillows. Most people who can't stand something on their face do great with the Swift versus the Breeze type which goes over the forehead and onto the top of the head. If it is a psychological thing (just can't stand the machine and the whole idea of being hooked up all night), consider that without it you could have heart attacks, diabetes, high cholesterol, depression and all kinds of medical problems related to your immune system not being restored by correct sleep each night. And make up your mind that you want to be healthy, normal and be able to sleep at night. Don't fight it, accept it, and make up your mind that you are going to do this.

You've already spent weeks, maybe months depriving your body of good sleep in spite of spending several hundred dollars on devices which haven't brought any relief, and made yourself another statistic for the failure of dental devices.

Janelle wrote:As to use of CPAP, don't forget Awake in America who sends out machines at no cost to low income or no income people. The machines are sometimes new, and so are the masks and humidifiers. They sent out several machines to the Katrina victims.

We sent out "several" machines? We assisted 97 individuals, to be specific, and sent out 52 xPAP machines. More information is available at http://www.AwakeInAmerica.org/Katrina/.

Our normal programs, the Sleep Study Donation Program and the xPAP Donation and Relief Program, operate year-round. Information and applications in PDF format are available at http://www.AwakeInAmerica.org/DonateRelief/.

I never heard of Awake America until read their article on here. The information is great to read and learn about. My intentions are to have their site on my computer and follow some of their good actions and plans etc. Perhaps I might be able to become active in their work. I have had personal experience in having medical professionals not realize my problems and see the need to bring sleeping disorders to their attention.

Cory,

Unfortunately, family can sometimes be frustrating. I'm glad you were able to come here and vent to those of us who understand.

Mike & Janelle, Did you miss Cory's long and informative post (including representative x-rays) showing his specific physiology that is likely causing his OSA. In his case cpap is not effective because he has little space available for his airway to be opened by the air splint.

I, for one, support Cory in his effort to pursue being evaluated for an MMA. He is a very smart "kid"... I'm not worried about him making a wrong decision.

Sounds like you've got a great plan... keep your persistence in moving forward!

Mikesus and Janelle I believe Swordz has tried CPAP but it doesn't work for him. From reading his other posts, he has researched all alternatives and exhausted any and all avenues he can. So for him surgery is his next option.

Cory so sorry to hear your getting such flack from your sister. It's rough when you hear just suck it up. I heard that one last summer from my boyfriend. What he didn't understand but does now is that when I say I'm tired it's nothing like when he says he's tired. Many people just can't grasp the disorder we have. I think they get hung up on the name Sleep Apnea not seeing it's a BREATHING disorder.

Good luck with getting declared independent. I give you a lot of credit for finding a creative solution in order to get your treatment.

Best of luck,

Melinda

No, I wasn't aware of Cory's condition specifically, as I've been away from the forum for several weeks/months even, and I'm sure the xrays, topic are somewhere back there under a topic I never even looked at four or five pages past. When trying to catch up, I seldom go more than about and then only look at the topic that catches my interest. So, I might have missed this one.

Sounds like maybe the same condition that Swordz has.

Gee, Muck, didn't you even miss me, didn't you realize I hadn't been around? I am truly hurt.

Janelle wrote:Sounds like maybe the same condition that Swordz has.

Janelle, if you read the first post in this thread, you'll note that Cory IS Swordz.

Janelle wrote:No, I wasn't aware of Cory's condition specifically, as I've been away from the forum for several weeks/months even...

Gee, Muck, didn't you even miss me, didn't you realize I hadn't been around? I am truly hurt.

Here's the thread: Cory's Post

Janelle, You haven't been gone! I saw your posts just last week. I'm just making sure we don't discourage Cory from checking out all his options.

Okay, I did see those. Didn't realize Cory and Swordz were the same person. And I think my post far predated the one where Cory talked about his condition, since I don't remember writing anything like that after I saw the xrays.

I also wonder how much the other dental device he used hurt his already compromised jaw. Another good reason to see an ENT before attempting any kind of self treatment or dental device, so you know exactly WHAT is causing your OSA.

Yes I did, because he posted it a few weeks after this one was posted.

(Darn time machine never seems to work right... )

(this post Feb 03. The other Thread Feb 22)

And I was talking in regards to UP3, specifically. MMA is successful, and if necessary I would do it while I was young, as it is a rough surgical recovery.

Good Luck Cory!

Janelle wrote:Okay, I did see those. Didn't realize Cory and Swordz were the same person.

Yes, Cory and Swordz are the same! Swordz of course being the CPAP poster, and Cory being the OSA-ridden, school-skipping, jaw-deteriorating, no-job-finding, "kid".

Janelle wrote:I also wonder how much the other dental device he used hurt his already compromised jaw. Another good reason to see an ENT before attempting any kind of self treatment or dental device, so you know exactly WHAT is causing your OSA.

The dental device I was using was in compliance with my Sleep Specialist and Board recognized Dentist. I think he didn't notice my jaw, because he doesn't specialize in Oral Surgery and follow the exact protocols my surgeon does. The device slightly helped, as there were some nights that I would remember a dream, which rarely happens. Other nights, I would sleep better and awake somewhat refreshed. I kept a sleep journal for almost 2 months, and my best waking score was 6.5. (10 is best, 1 is worst, and average sleep is 4.)

Whether or not the device made my jaw worse, I'm not really sure. Examining the Xray for my dental device, and my pre-MMA Xray last week, my oral surgeon says the deterioration seems to have stablelized. I do have jaw pain still, and haven't used my device in over a week. It could just be a mental reaction knowing now how messed up my jaw really is.

I didn't self-treat, but I went through documented and successful procedural steps that several people have taken on here, TAS, and Sleepnet. CPAP, Surgery (nasal), dental device, now MMA... I skipped Pillar becuase I thought my obstruction wasn't palatal-related, but now its clear I just have a VERY limited airway.

And yes, it is always good to see an ENT or Oral Surgeon who can tell you what is probably causing your obstruction. I use probably, because its hard for any doctor to say, "Your obstruction is this, and I'm 100% sure". That's why its an educated guess, and you see the different types of doctors and get 2nd opinions.

wading thru the muck! wrote: Mike & Janelle, Did you miss Cory's long and informative post (including representative x-rays) showing his specific physiology that is likely causing his OSA. In his case cpap is not effective because he has little space available for his airway to be opened by the air splint.

To clarify, I didn't post those Xrays. I believe "Guest" took those from WesternJoe's (AKA Roger) blog @ http://www.robotics.com/mma. Those Xray's are a great example though of the success that MMA does in increasing airway width.

Is the surgery invasive? Yes. Does the surgery scare the crap out of me? yes. Can I afford it? No. Do I need it? Probably, because I've exhausted all other options/treatments. Am I sick of OSA taking my life? You know it.

wading thru the muck! wrote:Unfortunately, family can sometimes be frustrating. I'm glad you were able to come here and vent to those of us who understand. [...] Sounds like you've got a great plan... keep your persistence in moving forward!

Sometimes I feel somewhat wierd posting here because I don't use CPAP, but then I realize we all suffer from the same thing so the treatment doesn't matter. Dealing with unintelligent family and friends is frustrating, but it's another thing you deal with along with the fatigue. Anybody who's successfully treated OSA want to adopt a 23 yr old?

sleepylady wrote: Good luck with getting declared independent. I give you a lot of credit for finding a creative solution in order to get your treatment.

I found out last week my attempt at Dependent Override was rejected, but I am appealing and scheduling an appointment with a financial aid representative. In trying to strengthen my case, I am getting all my doctors to either (1) write letters documenting my treatment recieved through each of them, and (2) if applies, getting them to write letters of necessity for MMA. These latter letters also will tell why I need the surgery, how its done, and why I would benefit from it.

It's retarded that I have to go through all this BS and not be able to afford a treatment I know will work, but its another thing that keeps me focused. It seems sometimes I'm just destined not to sleep, but I'll get this dang thing corrected sometime. Can you tell the frustrated tone now?

Along with my financial aid office, I am trying to see if Voc Rehab will cover any of the procedure. My counselor says they probably won't due to the expensive nature of the surgery, but I am still going to try.

If no other avenue presents itself, I will just have to wait until the end of the year when I have enough money guaranteed from F.A. without appealing for extra. Pathetic that my own mother won't co-sign or let me borrow $$. That's a story for another day...

Remembering dreams doesn't necessarily mean you are getting good sleep, it only means you awoke shortly after or during the dream, for whatever cause. Many people think REM sleep is the good sleep, but that has proven untrue. It is the Delta or deep stage sleep where you don't dream that is the restorative sleep.

I've been finally getting deep sleep now, thanks to Xyrem, for about 7 months, and hardly ever remember dreaming at all. Am I feeling better? Heck yes, Refreshed? YES. Do I dream? I really don't know. And I probably won't know if I'm having REM sleep unless another Sleep Study was done.