Matt, I sent a link for the recording for everyone that registered. Here it is again.

Matt, Hadn't heard from you in a while. Hope you're doing ok.
You're missed on the forum.

Mary Z.

Thanks Matt, I'm glad to be your friend.
Mary

Matt, good luck with the trach if you do decide to go for it. Please keep us posted.
Mary Z.

hi matt i am slipping as i did not send a welcome to you so here it is now welcome matt

Was wondering about you and thought I would drop you a line.

My husband's family has MD (muscular dystrophy) in the family with his 2 brothers and 2 nephews having had it. Along with the MD came some paralysis for them. I realize that this isn't what you are battling, but does give one insight in how difficult it must be for you. I hope that you can get your problems resolved and can continue to live as independently as possible.

Dr. Jones, I understand your reservations and advice.

I'm in a position common for folks with SCI (spinal cord injury). CPAPtalk.com has an article titled Sleep Apnea Syndrome in Spinal Cord Injury that states 25-40% of quadriplegics suffer from sleep apnea. A large majority of SCI also experience high levels of neuropathic pain, myself included. I believe there is a correlation.

Your book touches on the reaction of the sympathetic nervous system to apneic episodes. The hyped sympathetic nervous system is the mechanism that touches off my neuro pain, and the parasympathetic system is unable to counteract it, as it would do in able-bodied folks.

I've lived 20 years believing neuro pain goes with SCI. But if I get a good sleep session on my PAP, the pain is greatly diminished upon awakening (when it's otherwise normally heightened).

So yes, I'll follow through with this and let you know what happens. Won't happen as fast as with Barrett Craig, though. Seattle VA hospital is no place for me in winter.

Matt

Matt, I am glad you deleted my message, because it was incorrect. I would have to ask a pulmonologist sleep doc for the solution because the system almost certainly has to be closed and a Montgomery canula isn't.

I think you may have some options that should work very well, but you need to get with your pulmonologist on this and see what the best set up is for you.

Keep in touch. I'd like to know what works best for you and pass it on to others who may be in a similar situation.

Man I'm not liking the idea of this! How can I be independent and continue to live alone, if I can't take care of the trach on my own?? Gonna have to ponder on this awhile, might just have to let nature take its course... I feel darn near retarded already!

Thanks for listening!

Matt

A bit more reflection on this...

I suppose Montgomery cannula would be out of the question used in conjunction with PAP, as it would likely become dislodged under such pressures...correct me if I'm wrong?

Thanks again,
Matt

Holy crud Dr. Jones, I deleted your message! This site is difficult for me to navigate b/c I use speech recognition software. So, I hope you don't mind I respond here (long as I don't say that word again ["delete"] !).

Nonetheless, I recall the gist of your post. What stands out is that the ASV might or probably will still be needed to overcome my central apneas. I hope not b/c as I recall, the hose attached to the trach caused considerable pain, pulling etc..

Thanks for your response (that I deleted, argh!).

Thanks also for your discussion with Barrett Craig, I hope the VA hospital will use the Montgomery cannula on me also - what are the options regarding different types of trach tubes/cannulas?

Hello Dr. Jones,
Thanks for posting here. I have your book on your blog and posts on this site regarding tracheostomy - thank you very much - and understand why you opted for it.

I would be choosing a trach, because as stated, my lower jaw drops posteriorly so that no mask will seal. Attempts to counteract this have been unsuccessful. The situation is frustrating because I can achieve 0 AI on the ASV machine (using surgical tape to pull my chin and mask together to eliminate leaks, an unacceptable solution).

Yes, I am familiar with a trach, having been on a vent for many months when I broke my neck and was paralyzed in 1990.

I have many questions about my using a trach to treat sleep apnea, most related to my injury and living on my own, but only this for you, at this point:

My apneic episodes are approx 60:40/Central:Obstructive (most recent PSG on BiPAP, with an AI of 13). Do you think a trach will address my central apneas?

I'm not much interested upper airway restriction surgeries, or convinced they are successful.

Thanks again,

Matt

Matt,
I love my trach because, frankly, I love life.

You certainly shouldn't have one if you don't need it (by the way, it is reversible if for some reason you are not happy with it).

A tracheostomy is reserved for those who are PAP failures and your ENT physician cannot surgically convert your problem into PAP success.

Read my comments on this blog re. my experience with a trach. (also, in my book, "Deadly Sleep," I discuss my trach. and why I went for it).

By the way, Barrett Craig Is a guy you might contact for some recent first hand experience.

Thank you, Carol. I will study this, and Dr. Park gave me his e-mail address, so I'm hoping to be able to figure out what to do soon. You all are too kind, thanks!

http://www.sleepguide.com/profiles/blog/show?id=2549090%3ABlogPost%3A12285&commentId=2549090%3AComment%3A12946

The link for Dr. Mack Jones

Judy, I think you are thinking of Dr. Mack Jones. He has written about his trach on here. I will try to locate that thread and post a link.

no matter how good the best doctors are they are still limited in their knowledge, thinking and abilities, but we patiently wait with PMA postive mental attitude in this circus of a world we live in

Matt, click on the Members near the top of the page, an avatar w/Dr Park will be right at the top of that page. Click on him and you've found him.

I suggested that Matt stop in here and contact Dr Park. We met at apneasupport.com I also suggested he find and read the thread from the Dr - Morgan, was it? who has done so well w/a tracheotomy for so many years.

Thanks for your kind welcomes. I've been struggling with xPAP for more than a year. Troubles? Looking at having to have a tracheostomy, because my chin drops posteriorly (rearward) and I don't have enough teeth that an oral appliance can prevent it, even the SomnoDent which is designed to. Hoping to talk with Dr. Steven Park, but my brain is so foggy I'm having trouble putting thoughts into words... argh! Thanks again, I'll be back! Matt

Did I mention having broke my neck in 1990 rendering me a quadriplegic C5/6 injury, rather complicating the sleep apnea issue.