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It's good to hear from you James.

Thanks for the update.

O.

I think:

1. you should have the nasal surgery but NOT have it done by the ENT that is reluctant to do it. You want a ENT surgeon with confidence that can help you, I would not use Ruddy that is for sure.

2. IF the MMA surgeon says he can only gain 5mm advancement and it doesn't sound like he is too confident he can obtain that. Seems like a lot of pain for not much expected gain. In the mean time, I would continue down the path using the dental device even working with Dentist to modify the MAD with a tube so you can breathe, it is my understanding that the Tap II device is capable of 4-5mm advancement. However, keep in mind that mouth breathing leads to a swollen tongue and that can make the situation even worse.

If nasal congestion is a contributing factor, I would have that taken care of FIRST, I would have it done before your health deteriorates any further or insurance runs out. Note: if your health continues to deteriorate no surgeon will want to proceed with any procedure.

I do not know what type of MAD dental device you are using, but positive things have been said about the SomnoMed MAS device:

http://www.somnomed.com.au/about-us.html

http://www.ihatecpap.com/oral_appliance.html

This site has about all of them listed, be careful in your selection you want a device that won't break and you want it easily adjustable. And I wouldn't rely so much on the Dentist experience with a particular device (unless you see them laying all over the place in their office) because the difficulty with the dental device is finding a qualified dentist with experience.

If it were me, I would seek out a Dentist specializing in Pros (Prosodontist). These Dentists specialize in making dental prosthesis and/or dentures, bridges and implants and the treatment of TMJ related disorders. They pay special attention the prosthesis doesn't cause alignment problems with the TMJ joint. In other words they would be the most qualified to advance your mandible without causing harm to the TMJ joint. As many Prosodontist are also trained in surgery for implantation of dental implants they would also have great contacts for MMA surgery and recommendations. Most do their own lab work so they could make any modifications to the MAD device without having to farm it out to some dental lab. You can have a great Dentist but if they use a lousy dental lab that can be a problem.

James, my heart goes out to you.

There's light at the end of any tunnel---some just require digging. Hang in there and please keep digging. Your experience is bound to help others as well as yourself.

Take good care now! And remember that you're digging for more than one.

Hi James,

Ask the doc what is the mm can be increased is the surgery is done. Then, check back to with me the mm figure.

Mckooi

Good to hear from you, James.

I hope they figure out what to do with you, pretty soon.

I also agree with Rooster about doctors only diagnosing what they know.

Hang in there, my friend.

Den

Babette wrote:

JeffH wrote:For those using James's software, there is a Paypal button on his site. If you are using it and haven't made a contribution, he could probably use it about now.

http://james.istop.com/EncoreProAnalyzer/

Good man, Jeff!!!
Babs

Good Idea ! ....i will make a deposit right now & thank you soo much James, you da man !

Snoredog wrote:1. you should have the nasal surgery but NOT have it done by the ENT that is reluctant to do it. You want a ENT surgeon with confidence that can help you, I would not use Ruddy that is for sure.

I agree Snoredog. I am thankful for Ruddy since he hasn't given up on me (like some doctors) and keeps referring me to other specialists. I wish he had done more sooner but I am thankful for him keep trying. I've been referred to a 'more agressive' ENT in Dartmouth. The appointment is in Sept 2 so that's really what I am holding on to for some hope at this point.

Snoredog wrote: 2. IF the MMA surgeon says he can only gain 5mm advancement and it doesn't sound like he is too confident he can obtain that. Seems like a lot of pain for not much expected gain.

Yes its hard to know what to do. Because of that, I contacted Dr Kasey K. Li, one of the co-creators of the MMA procedure. He said about the same thing as my MMA surgon but also felt it was a worth while effort to try the procedure. He said the results might not be 100% in my case but there should be improvement.

Snoredog wrote: In the mean time, I would continue down the path using the dental device even working with Dentist to modify the MAD with a tube so you can breathe, it is my understanding that the Tap II device is capable of 4-5mm advancement.

Yes I took this approach for quite a few months. http://james.istop.com/apnea/reports/Device.jpg However not being able to swallow normally with the MAD in place and the CPAP air really did a number on my throat. (not to mention the dreweling you get) Also having that much contraption on made it hard to sleep. I still add the MAD now again to CPAP but can't use it for more than a couple of nights with my throat getting too irritated.

Snoredog wrote:However, keep in mind that mouth breathing leads to a swollen tongue and that can make the situation even worse.

Yep discovered that problem.

Snoredog wrote: If nasal congestion is a contributing factor, I would have that taken care of FIRST, I would have it done before your health deteriorates any further or insurance runs out.

I completely agree, I plan to do that if I can get someone to do something to the nose. However if the MMA surgery date comes available I will likely proceed as I have been waiting since Nov 2007 for that so far. I looked into getting MMA done in the US and its $75,000.

I have no insurance so I'm lucky that health care if free (but slow) in Canada.

Snoredog wrote: I do not know what type of MAD dental device you are using, but positive things have been said about the SomnoMed MAS device:

I use the Klearway. http://www.klearway.com/ I been pretty happy with it. It certainly helps but is not nearly as good as CPAP. I think dental devices should be tried more. They are very conformable compared to CPAP. For certain individuals they should work quite well.

Claire wrote:Question: Did you ever try an environmental doc? There's one in Ottawa called Mickelson

If I was still in Ottawa I would check him out. I have lived in 4 different places since this problem started so I don't think it can be environmental. There certainly is an allergic factor since things get worse if I get my allergies acting up to but its never really seemed like an allergic reaction.

Claire wrote:He used an unorthodox (according to regular allergists) way of testing for food sensitivities and hit them all on the nose.

And what is that method?

Babette wrote: Can't be any worse than me living alone and moping about. At least we could console each other.

I'm pretty sure you would get tired of my complaining about the medial system and my grumpiness

xyz wrote:Personally, I would try really hard to get APAP to work as well as possible before trying surgery. And especially so with a prognosis like that.

Believe me I have tried. APAP used to work pretty good for me before the nasal issues. Trust me I have been trying to get to the bottom of it.

xyz wrote: After too long I learned that I am sensitive to what I was cleaning mask/hose/humidifier with. In addition, I was found allergic to miildew and mold. I thought of this when reading your post.

Been tested for mold several times since this problems started. Also stoped using CPAP for 6 months so its not the tubing or anything that I am allergic to.

Now I have a backup/spare for all items. I rinse them with vinegar to kill the germs. I wash them with Seventh Generation Free and Clear and then rinse really well. I rinse again with distilled water. And I let them set for a couple days before swapping back into the rotation.

xyz wrote: Try the Quattro full face mask. The F&Ps have kind of a peculiar fit. A FF mask that fits well gives you a better chance of getting some air in you.

I'm pretty happy with the Liberty (I use the Hybrid as a backup)

I am defiantly better all around than I was 12 or even 6 months ago. There where times where I didn't think I was going to make it sine I couldn't breath. Apnea is pretty under control (AHI about 5-7) but my nose breathing is still not normal and CPAP use irritates it every night. By morning things are swollen up again in there. At least now things open up during the day so I can live a pretty normal life most days (with the help of sudafed twice a day)

DreamStalker wrote:Sounds like a multi-malpractice suite in the making

My focus right now is to just get better... down the road its certainly something I am going to consider.

rested gal wrote:James, I've followed your posts ever since you came to the cpaptalk message board. I admire you for so many things, including the gift you gave so many here with your wonderful Encore Pro Analyzer.

I remember when I first joined the board. I was so relieved to finally know what was wrong with me. I felt so much better after starting CPAP (although did struggle getting AHI down). Little did I know that the worst was yet to come. I had a great time writing that software. Really glad people find it useful. I had so much more that I was going to add, hopefully I can get back to it sometime.

rested gal wrote:But most of all I've admired your determination to keep going in the face of so many deadends in your search to get healthy again.

Trust me at times I didn't have much determination left...

rested gal wrote:Thank you so much for the update. You have many friends here -- and we're all pulling for you!!

And thank you for all the things you do for this board! Your kindness to the group and personally has been much appreciated.

-James

Anonymous wrote:Ask the doc what is the mm can be increased is the surgery is done. Then, check back to with me the mm figure.

5mm.

Details are at http://james.istop.com/apnea/reports/GooddayReport.pdf

James: what about head and neck position to influence airflow dynamics?

What I mean by this is exploring ways to change the position of the head and neck while you sleep to open up the airway. This is similar to what is done to open the airway when performing CPR breathing.

In this case that position is "found" and then held in place with a special neck brace that is worn during sleep. Now I realize if you slept horizontal in a conventional bed this could be quite uncomfortable. But if the bed was elevated to compensate for the new position, it could be just enough to get you by until a surgery solution is obtainable.

I would touch base with a Chiropractor about it, take your MMA xray with you, they work with neck braces all the time, they may be able to offer you some relief. Too bad you were not close to the SF bay area, my chiropractor is semi-retired and only charges $35 a visit (probably $50 now).

If you want to do your own research, search for Oral airflow dynamics, maybe split-city has some additional info/links on it, but below is one and I'll add others. The ones citing UCLA School of Dentistry I may be able to get more info on, I sorta have a contact there.

http://www.pubmedcentral.nih.gov/articl ... id=2269117

http://www.springerlink.com/content/t18pe116ygg7fvu7/

jskinner wrote:

Babette wrote: Can't be any worse than me living alone and moping about. At least we could console each other.

I'm pretty sure you would get tired of my complaining about the medial system and my grumpiness

Just show up pizza delivery!! LOL

https://www.youtube.com/watch?v=jNW4Rnx0kxk