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Latest Activity

ZolliStar replied to Fred's discussion CPAP - cure worse than the disease
"I'm wondering: what prompted you to consider whether you have sleep apnea in the first place? Also, waking throughout the night isn't uncommon especially as we (*sigh*) age.  I seem to every 90 minutes or so. This pattern probably…"
Jun 27
ZolliStar replied to ZolliStar's discussion New mouth device on the market
"You can try this website:  http://zyppah.com/ I have a MAD (mandibular advancement device). Dr. Steven Park evaluated my mouth and throat (not everyone can use a MAD, it turns out) and pronounced me a candidate for it. The truth?  I…"
Jun 27
Mary Z replied to ZolliStar's discussion New mouth device on the market
"The link didn't work so me so I couldn't see the product.  I do have experience with a supposedly reliable boil and bite device.  I should know by now I have a small mouth and nothing regular size fits.  I don't think…"
Jun 27
richard graham replied to ZolliStar's discussion New mouth device on the market
"If I thought something could work other than this lousy cpap that would be awesome"
May 22
richard graham posted a status
"I moved and have been sick a lot and can't use cpap because of cough and I'm depressed a lot"
Apr 26
Fred posted a discussion

CPAP - cure worse than the disease

It's ironic that before I was diagnosed with sleep apnea in 2000, I had no problem sleeping 8-9 hours a night. If I did wake up during the night, I had no problem falling right back to sleep, and I wasn't tired during the day.From the first night I brought home the CPAP I haven't had one decent night's sleep. Not one. I don't have any problem falling asleep, but I can't stay asleep. At first I was waking up after 4-5 hours and couldn't get back to sleep for a couple of hours. Now it's more like…See More
Apr 13
Fred updated their profile
Apr 13
ZolliStar posted a discussion

New mouth device on the market

I've been hearing advertising for this product over the past few days.  It's sold as something to help snoring, but as I look at the information it seems to me that it would work just as well as my mandibular advancement device (MAD).In other words, this could help some of us with sleep apnea.Read about it here.Anybody have any thoughts about this?  See More
Mar 31
99 replied to Mary Z's discussion AHI finally under five.
"Hi Richard I mainly use an empty humidifier as it reduces noise"
Feb 16
richard graham left a comment for richard graham
"When I can afford it I'd like to get New machine with heated tube"
Feb 10
richard graham replied to Mary Z's discussion AHI finally under five.
"I would like to see this forum active again as well. I will be more aware of what's going on"
Feb 10
ZolliStar posted a discussion

If you have trouble falling asleep....

I thought that when I got my sleep apnea diagnosis, that -- at last! -- all my sleep problems had come to an end.Ha!I have trouble falling asleep. Indeed, I rarely feel sleepy at night although I do feel tired. I even cut back on computer at night, etc., etc. (and installed f.lux on my computer) but I still had trouble. Now I'm doing something different: wearing special glasses (Uvex S1933X Skyper Safety Eyewear glasses). They block out the blue -- and they're making a difference! First I tried…See More
Feb 1
99 replied to 99's discussion colloidal silver
"i have purchased some silver the make my own colloidal silver"
Dec 21, 2014
99 replied to 99's discussion colloidal silver
"just add to the distilled water it is antimicrobial eg cleans your machine and is beneficial for keeping you healthy  from bugs germs viruses you get the picture and when you need to clean the humidifier out, put water on your plants the silver…"
Dec 21, 2014
Mary Z left a comment for richard graham
"If the heated tube works with your machine I would try that.  They also make covers for your tubing which may help some.  I think the heated tube may be your answer.  Keep us posted."
Dec 21, 2014
Mary Z left a comment for richard graham
"Richard, some folks just use the humidifier in a Passover mode.  They just don't turn it on, but let the air pick up moisture without heat."
Dec 21, 2014
Mary Z replied to 99's discussion colloidal silver
"99, where have you been?  Do you add the colloidal silver to your humidifier?"
Dec 21, 2014
Mary Z replied to Andy's discussion Resmed S8 AutoSet II - No Longer Collecting Data??
"I Andy, I realize I'm months behind your post.  I have no idea why your S8 would stoop collecting data.  I'm glad to hear  you're having such improvement with your apnea.  I have made great strides since I changed…"
Dec 21, 2014
Mary Z replied to Andy's discussion Resmed S10 AirSense - Anyone have one? Any feedback?
"Andy, just found your post.  I don't know anything about this new machine.  How are you liking your new ResMed?"
Dec 21, 2014
Mary Z left a comment for Kay Day
"Kay, I haven't been around myself and miss the old, active forum."
Dec 21, 2014

Tracheostomy for Severe Sleep Apnea

A doctor I spoke to last night argued that severe sleep apnea should be treated more often with a tracheostomy. A tracheostomy is a surgical procedure to create an opening through the neck into the trachea (windpipe). A tube is usually placed through this opening to provide an airway into the upper trachea. This tube is called a tracheostomy tube or trach tube. This airway bypasses the entire upper airway and therefore is 100% successful in curing sleep apnea.

For those who get a tracheostomy for sleep apnea, the tube is capped during the day and breathing and speaking continues as normal. Before going to sleep, one removes the plug, and air is inhaled through the tube in the neck, not through the mouth or nose.

Obviously, this is a drastic procedure that would give anyone pause. That said, so are surgical procedures like maxillomandibular advancement. Furthermore, a tracheostomy is 100% effective in treating sleep apnea -- the AHI will zero out. It is a sleep apnea cure. Maxillomandibular advancement has a significantly lower success rate, and is often considered a success even if it does not "cure" sleep apnea (i.e., if it just reduces the AHI substantially).

Again, I'll stick to CPAP because I'm finding it effective and because turtle necks aren't a good look for me. But for those who have tried and failed with CPAP and everything else, and who have severe sleep apnea, you might want to consider a tracheostomy. Right now, it's not even presented to patients as an option. It should be.

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Comment by BARRETT CRAIG on September 12, 2011 at 7:25am
I've had my trach for nearly 2 years now and have not realized any efficacious results.  I can still feel the back of my tongue drop down and close off my airway, right as I fall asleep.  This of course wakes me out of the sleep.  As a trach patient, I do not understand how the trach is a 100% cure, because the physical act of my tongue closing off my airway is such a shock to my system, that even though there is an alternate source of air through the trach, it is the shock and gag caused by my tongue that interrupts normal sleep.  If there were a seamless transition between nose breathing and the trach, then it would be 100% effective, but I have not experienced this at all. (I even tried wearing nose plugs to force all breathing through the trach).  For this reason, I have decided to try the tongue resectioning, as a last resort.  I had UVPPP surgery nearly 15 years ago, but it made me worse, which seems to be a common thread.  This is my first chance to publicly thank Dr Jones for coming to visit my in the hospital after my trach surgery.  it made the ordeal a lot easier for me.
Comment by Judy on May 22, 2009 at 11:38pm
Welcome to the forum, James Skinner. Good to see your smiling face again! How are YOU doing now after your surgery??
Comment by James Skinner on May 22, 2009 at 11:14pm
You can read more about Dr Jones story at http://stopsanow.com. It should also be noted that its also fairly common to experience central apneas after a tracheostomy. Its my understanding that they typically resolve over time however.
Comment by Judy on April 23, 2009 at 6:16pm
Did you have all of the surgeries at once (with the exception of the trach, of course)?? Or in what sequence did you have them? And over what period of time from OSA Dx to having to resort to the trach?
Comment by Judy on April 23, 2009 at 6:15pm
I assume as a doctor you insisted on a fully data capable xPAP each time you tried PAP therapy so that you could monitor your results yourself?
Comment by Judy on April 23, 2009 at 6:14pm
Thanks for the report on your experience w/the tracheostomy, Dr Jones. May I ask did you try CPAP before the various surgeries and then the surgeries and finally the trach? Or the various surgeries first, then CPAP, then the trach? What type of problems did you run into w/the CPAP therapy?
Comment by Mack D Jones, MD, SAAN on March 25, 2009 at 1:46pm
I chose a so called "permanent skin-lined tracheostomy" after four years of failed PAP machines, and unsuccessful surgeries including a UPPP, hyoid myotomy, and two rhinoplasaties. I was given the option of trying a maxillomandibular advancement or "bimax" procedure and actually signed up for it until I read the fine print in some of the published studies. The bottom line is that the bimax surgery can reduce the number of apneas, but cannot eliminate them. An AHI of 1 is "deadly" according to Dr. Barbara Phillips past president of the NSF. I welcomed the tracheostomy as my last chance to put a stop to repeated apneas. It was performed by a surgeon who had done an average of two per month over the previous 16 years.

The surgery went without a hitch and I was completely healed in six weeks. Much to my surprise, my symptoms did not immediately go away (I discuss this in more detail in my book www.stopsanow.com). Three months post-op I felt 80% better from that "run over" feeling. For me the trach is not that big a deal. There are several reasons for this, I think. One is that I'm not overweight and my neck relatively thin. My trachea is not buried in a lot of muscle or fat. Another is that my medical background helps me to deal with any gliches that might occur with just plain everyday care which is really pretty simple. That's easy for me to say because I know the anatomy, function, etc. which gives me some advantages.

Oh, before I forget. The tracheostomy is completely reversable. If for some reason you don't like it, the stoma, can be closed. That's in contradistinction to almost all the other surgeries for OSA; they are irreversible. (A couple of suspensions could potentially be reversed). At first I had a stent with a plug. It's made of polyurethane; a soft rubbery tube the diameter of your little finger. Now I use an open stent at night when asleep and a shorter one inch stent with a permanent plug during the day. It has a very low profile protruding about a quarter of an inch. It was custom made to my specs. I clean them with hydrogen peroxide and tap water which only takes a minute or two in the morning and again at night before bed. A plastic film canister stores the one I'm not using.

Most of the time I'm not aware of the stent. Sometimes it leaks air when talking. A slight adjustment corrects it. There is an accumulation of mucous around the stent (this is a good thing...it means you are not drying out) which I wipe away with a tissue a couple of times a day. You can buy little squares of absorbent cloth made to fit around the stent interface, but I do ok without them. When taking a shower I pucker up my lips to close my nostrils and blow gently when directly facing the flow of water. That prevents water from entering around the stent (it's not water tight).

The only regrets I have with the trach is I can't go swimming, scuba diving, sailing or fishing out on the water. To me it's not so much a risk of drowning because I'm an excellent swimmer, but it's the risk of getting dirty water down into my lungs which can be result in a very nasty, difficult to treat, mixed bacterial pneumonia. I have had no problem with drying or need for humidification. I live in a humid environment here in Fort Walton Beach, FL and that may a factor. I stay well hydrated, carrying a bottle of water with me where ever I go. There are humidification devices that can be placed over a trach if needed. A trach is a life saving last resort for the treatment of OSA. If I had to do it over again, I would have had the trach much sooner because I had way too many apneas while undergoing those surgeries, none of which could give me an AHI of 0. In my admittedly biased opinion, PAP resistant OSA is an indication for a tracheostomy, your last and final resort.
Comment by Mike on March 23, 2009 at 2:40am
I know that Dr. Mack Jones, a neurologist who suffered from severe sleep apnea had the procedure done. I'm not 100% sure this is his contact info, but by doing a quick Google search I came up with this:

329 Eldredge Rd
Fort Walton Beach, FL
32547

Phone: (850) 862-3040

You can reach out to him and tell him you heard about him from a participant in the sleep apnea discussion he took part in last week. please let us know what happens.
Comment by bonesigh on March 21, 2009 at 11:31am
Actually back in 2007 I was told about this procedure by my doctor but it is not highly recommended because when you have a tracheostomy it is much easier for bacteria, germs etc. to enter the lungs and make you sick. I was told it was best to avoid this procedure and only have it done as a last resort.

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