Comment

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.