What Would You Change in Your xPAP Experiance?

I wish I would ave one a study 20 years ago !

Greg

I was diagnosed 13 yrs ago. I wish I had been given training, had knowledge of this website, knowledge of data, knowledge of types of masks & finally, knowledge of the fact that the damage to my teeth could have been prevented by the use of a retainer.

I know the teeth issue seems small for many people, but it became a big problem for me. I'd like to communicate this to all newbies, it is a BIG regret for me that no one told me when I started. I could have prevented the damage to my teeth & saved myself a LOT of money & pain. For those who wonder what I'm talking about, CPAP therapy has pushed my upper & lower front teeth out of alignment. If I had known I needed a retainer, I would have gladly gotten one & worn it faithfully every night with my CPAP mask. Now I have a choice of losing my front teeth or getting braces for 18-24 mos at a cost of $4,800. I'm getting the braces, but would have gladly paid for & gotten a retainer if I had known. Just want to spread the word to newbies that if your teeth begin to move, see a good dentist & ask for a retainer to keep them from moving. Tell the dentist what you want, my dentist at the time didn't say anything, didn't react when my teeth started to move and probably thought he would make some money at my expense when the teeth reached a critical point. Well, I changed dentist. My new dentist will be on the lookout for CPAP patients & watch for movement, then recommend retainers for them. I included this since you wanted to know what I'd change in my experience.

All the suggestions you all have made so far are great. A class is definitely needed for all new CPAP users, I can't believe the lack of info from doctors & DME's. They just assume we will just wear what they give us without question & without problems. Life with CPAP does not work that way. Thank goodness I found this website, I've learned more here (I discovered this website in Oct 2012) that I've learned in all the time I've been on CPAP prior to this.

Everyone here ROCKS!!!
Jen

jencat824 wrote:I was diagnosed 13 yrs ago. I wish I had been given training, had knowledge of this website, knowledge of data, knowledge of types of masks & finally, knowledge of the fact that the damage to my teeth could have been prevented by the use of a retainer.

I know the teeth issue seems small for many people, but it became a big problem for me. I'd like to communicate this to all newbies, it is a BIG regret for me that no one told me when I started. I could have prevented the damage to my teeth & saved myself a LOT of money & pain. For those who wonder what I'm talking about, CPAP therapy has pushed my upper & lower front teeth out of alignment. If I had known I needed a retainer, I would have gladly gotten one & worn it faithfully every night with my CPAP mask. Now I have a choice of losing my front teeth or getting braces for 18-24 mos at a cost of $4,800. I'm getting the braces, but would have gladly paid for & gotten a retainer if I had known. Just want to spread the word to newbies that if your teeth begin to move, see a good dentist & ask for a retainer to keep them from moving. Tell the dentist what you want, my dentist at the time didn't say anything, didn't react when my teeth started to move and probably thought he would make some money at my expense when the teeth reached a critical point. Well, I changed dentist. My new dentist will be on the lookout for CPAP patients & watch for movement, then recommend retainers for them. I included this since you wanted to know what I'd change in my experience.

All the suggestions you all have made so far are great. A class is definitely needed for all new CPAP users, I can't believe the lack of info from doctors & DME's. They just assume we will just wear what they give us without question & without problems. Life with CPAP does not work that way. Thank goodness I found this website, I've learned more here (I discovered this website in Oct 2012) that I've learned in all the time I've been on CPAP prior to this.

Everyone here ROCKS!!!
Jen

Hi Jen!

Your telling about your teeth has made a deep impression and certainly will be part of any curriculum I have part in developing.

I am glad we found this place.

Todzo

jencat824 wrote:knowledge of the fact that the damage to my teeth could have been prevented by the use of a retainer.

This may be a dumb (newbie) question, but how did the CPAP push your teeth out of alignment? My teeth are kinda crooked already. What should I watch out for?

Some folks can't tell; but when I started waking up with my bite a little "off" and my teeth a bit sore,
I started looking for a different mask. Luckily, I noticed it in time and there is no permanent effect.
It may be because I had orthodontics 50+ years ago, and recognized the feeling.
Others may not notice any change.
(My problem was a poorly fit nasal mask, that I was wearing too low in order to spare my painful nose.)
Most headgear pulls backward, and oral malleability may vary.

Todzo wrote:If you could go back to a more perfect world, what would your xPAP experience have been?

What would you have changed?

How would you have been treated?

How would you have gotten to where you need to be (healthy) in a better way?

I've thought about this from time to time and I can't come up with anything substantive.

I discovered this great forum (which was only about 6 months or so old at that point) shortly after my family doctor suggested he wanted me to have a sleep study because he suspected I had Sleep Apnea. This was also before I had my sleep study and allowed me some time to do some reading and research.

The data-capabilities of the machines and the software for reading the data had reached a pretty good level at the time I started therapy.
Along with that, one of the forum members (Derek Rowell) developed the MyEncore software which has been great for charting the data from the stored database of the Encore Pro software.

If my sleep doctor had been a "nice" person (or nicer and more competent), I may have been more inclined to listen to him and not have felt the need to take charge of my therapy as much as I did. I "fired" him shortly after the first meeting with him after starting therapy.

I bypassed the brick & mortar DMEs and purchased all of my equipment from CPAP(dot)COM and got my insurance provider to reimburse me for 80% of the initial equipment purchase.
I owe a great deal to Becky Polk of CPAP(dot)COM for helping me sort out the features of the machines (and mask measurements). The REMstar Pro 2 was brand new at that time and was replacing the older (plain) Pro model......the Pro 2 was fully data-capable and the older Pro was not (even though it had a data card and only collected hours of use).

I bought the software and card reader with the initial equipment so I could read and monitor my data from the very beginning.

For all intents and purposes, I took to this like a duck to water and have never had a question to ask about MY therapy on the forum.

My daytime sleepiness had only started to manifest itself a couple of years earlier, but had I been diagnosed much earlier, I wouldn't have had the benefits of data-capable machines or this great forum to help me. I may have been one of those who would have given up. Who knows?

So, thank-you again, Johnny, for everything you and your folks have offered and provided for the CPAP users. I'm eternally grateful.

Happy Easter!

Den

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Wulfman... wrote:

Todzo wrote:If you could go back to a more perfect world, what would your xPAP experience have been?

What would you have changed?

How would you have been treated?

How would you have gotten to where you need to be (healthy) in a better way?

I've thought about this from time to time and I can't come up with anything substantive.

I discovered this great forum (which was only about 6 months or so old at that point) shortly after my family doctor suggested he wanted me to have a sleep study because he suspected I had Sleep Apnea. This was also before I had my sleep study and allowed me some time to do some reading and research.

The data-capabilities of the machines and the software for reading the data had reached a pretty good level at the time I started therapy.
Along with that, one of the forum members (Derek Rowell) developed the MyEncore software which has been great for charting the data from the stored database of the Encore Pro software.

If my sleep doctor had been a "nice" person (or nicer and more competent), I may have been more inclined to listen to him and not have felt the need to take charge of my therapy as much as I did. I "fired" him shortly after the first meeting with him after starting therapy.

I bypassed the brick & mortar DMEs and purchased all of my equipment from CPAP(dot)COM and got my insurance provider to reimburse me for 80% of the initial equipment purchase.
I owe a great deal to Becky Polk of CPAP(dot)COM for helping me sort out the features of the machines (and mask measurements). The REMstar Pro 2 was brand new at that time and was replacing the older (plain) Pro model......the Pro 2 was fully data-capable and the older Pro was not (even though it had a data card and only collected hours of use).

I bought the software and card reader with the initial equipment so I could read and monitor my data from the very beginning.

For all intents and purposes, I took to this like a duck to water and have never had a question to ask about MY therapy on the forum.

My daytime sleepiness had only started to manifest itself a couple of years earlier, but had I been diagnosed much earlier, I wouldn't have had the benefits of data-capable machines or this great forum to help me. I may have been one of those who would have given up. Who knows?

So, thank-you again, Johnny, for everything you and your folks have offered and provided for the CPAP users. I'm eternally grateful.

Happy Easter!

Den

.

I am glad to hear that one has found good care for OSA in America!

sawinglogz wrote:

jencat824 wrote:knowledge of the fact that the damage to my teeth could have been prevented by the use of a retainer.

This may be a dumb (newbie) question, but how did the CPAP push your teeth out of alignment? My teeth are kinda crooked already. What should I watch out for?

The air was going in thru my nose (nasal mask) and my tongue pushed forward, I guess in reaction to the continuous pressure. Over time, it pushed my teeth forward. First it pushed my upper teeth outwards, then my lower teeth began to push forward & kind of to the right side, I sleep on the left side, so I guess it was pushing in the direction away from the air flow. My current dentist said he has seen several cases & if you catch it in the beginning, a retainer is all that is necessary. I found my current dentist after learning that a retainer was probably needed from a thread on this site. The info I learned here led me to find a new dentist, I was in search of a solution for this, as recommended by a fellow forum member, I was looking for a retainer. I found out I was wayyyy past the retainer stage & needed braces. The dentist gave me the names of several orthodontist who deal with adult patients (I had braces as a kid so I knew most orthodontist deal with kids).

Bottom line, if you feel your teeth beginning to move, or seem they are getting more crooked, find a good dentist who can assess you & make a retainer to stop the movement & stabilize the teeth & prevent further damage.

I knew mine were moving but dentist said it wad due to CPAP & just something I would have to live with. Obviously, I had a dentist who was uninformed that a retainer could have prevented this level of damage. Since changing dentist, new guy told me not all dentists know what to do with CPAP patients to stabilize with a retainer device & prevent damage.

Good luck & I'm glad you are now more informed than I was.
Jen

If I may turn on sarcasm for a moment...

At first I thought I was "special."

My titration involved being handed a machine with the pressure set to the 6 - 18 range. That was all that was needed.

In addition, no follow up is needed because the auto machine will take care of everything...

OK, sarcasm off.

My cardiologist and GP have offered me more guidance on sleep disordered breathing problems than my sleep doctor did. My sleep doctor spent a few minutes going over my sleep study and that is it. Fortunately this forum exists and I have been able to monitor myself and get to a place of optimum therapy.

The DME that my sleep doctor sent me to did have an excellent RT that helped me get the machine set up and found a mask that has worked very well for me. I will give him some credit for that. But the machine that I initially ended up with only gave summary data. I ended up buying a second machine that gave a lot more data and have been using that.

Overall my experience has been good, but a lot of the credit for this experience goes to me for searching out a forum like this and asking questions and my insistance on taking an active part in my treatment. Come to find out I am not "special," just neglected...

If i had to do it over again I wouldn't pay attention to ahi or how i was physically feeling from the treatment. I would exclusively work at finding a mask that works for me and doing everything i can just to be able to sleep through the night on the machine. Only after feeling comfortable on the machine would i start to try to fine tune it to bring down my ahi number.