TRACHEOTOMY

[klv329]

That's awful. Hopefly you can find a solution. So you have severe obstructive apnea (as opposed to severe central apnea) and the cpap option is impossible. I don't know of any websites discussing that option but I recall years ago a fellow's website about it and it finally worked for his obstructive apnea and if I recall correctly he seemed pretty happy about it. Hopefully you can find a solution too. Good luck!

[Mabutu]

Not unusual for some people to be disappointed with MMA, after all the airway is a fixed circumference and Mma changes the shape from epileptical to cylindrical

It tents the airway in an more open position but over time the tissues behind the pharyngeal mucosa start to sag and you're back to square one

Contrast that with the bladder which is composed of redundant mucosal folds and can be dramatically distended

A skin lined tracheostomy, performed by an experienced ENT is a relatively safe procedure , almost always reversible , and bypasses any cause of obstructive sleep apnea . Different kettle of fish to older style tracheostomies

What have you got to lose , you've suffered so much , have it , and if you don't like , you can have it reversed . Worst case scenario , you may sleep better . God bless

[Sir NoddinOff]

As I recall member Sickwithapnea17 had one a few years ago for sleep apnea and it didn't work. You could try PMing Sickwithapnea17. Also: Type both spellings, one at a time, into the search box under the CPAPtalk logo and you'll get a couple of dozen hits on Tracheostomy.
Example;
viewtopic.php?f=1&t=98499&p=975471#p975474

[chunkyfrog]

It is tragic that there is so little help for those whose main problem with using cpap is psychological.

[Goofproof]

It is tragic that there is so little help for those whose main problem with using cpap is psychological.

Ditto, Too bad there's not a Tissue Bank, that can use the unnecessary removal of body tissue, to help others in need. Jim

[JohnnyBravo]

49er and Julie, i didn't think you would recognize me, thanks. The website doesn't ask me to sign in to post. I didn't mean to cause a discussion or a fight here. Thanks to the person who posted the link to trachs dot com.

I've taken several sleep studies and titrations that each show a different thing. Some don't even show sleep apnea or they show that it's not that bad, cause i have a lot of hypopneas and awakenings related to breathing efforts that aren't apneas (UARS?). Nevertheless, they have shown severe sleep apnea, over 60 AHI the last one, though i'm sure i wake up more than this. I've done the math with the graphs/curves.

Anyway i can't fall asleep without my sleeping aides, can't fall asleep with cpap, wake up too easily, and had all the troubleshooting possible with cpap. From leaks to not being able to fall asleep with it, to using it and not sleeping better. When i told doctors all this they just don't listen and send me back home to keep using cpap. So i haven't taken more sleep studies and i don't have a sleep doctor.

I have chronic insomnia, stay up all night and sleep in the morning, have chronic reflux, anxiety, depression, sleep myoclonus that doesn't let me fall asleep (without my sleep aides), shortness of breath, and a lot of other health issues caused by apnea. I'm only 41, not obese. Been disabled for years. All this makes it difficult to find a doctor who will want to treat me and to take sleep studies. I think I'm a difficult patient.

I just had an MMA, which has made my symptoms worse cause of palate swelling and congested nose. I hope these symptoms are temporary. Otherwise surgery didn't work and made me worse. I just got a second hand bipap online, and just started to use it to self titrate, but it's not working. I'm using IPAP10, EPAP 4 to start. I'm waiting for an appt with a sleep doctor to get a post op sleep study and titration in a month.

I hope i explained enough, I'm not thinking well. That's why i'm looking for a tracheotomy now. They won't do it here. I feel like i'm dying. Thanks for those who replied.

John.

[Julie]

Hi - have you addressed the reflux? What about the anxiety/depression? Sorry I can't remember far back... Have you had pulmonary testing re the dyspnea?

Because while you probably have - I wonder how recently a regular work-up was done, with lots of labs, etc. Not everything's about OSA or Cpap. I also wonder if you're using a high humidity setting when you might not need one, whether you're adding to congestion without realizing it.

You said the titration's 'not working', but can you be more specific about what's not working, and please post the whole name/model # of the bipap you're using now.

Have you tried to download Sleepyhead - it would make it a lot easier for us to get an idea of what's going on. Maybe put the trach to the side just for a moment and let's see if maybe a new start could be made if some of this is addressed.

[JohnSerrano]

This is JohnnyBravo. I just posted without signing in. I updated my equipment info. Yes i have bad acid reflux and have tried PPIs with no success. I feel that's what's ruining my life. That and my overactive, oversensitive nervous system that awakes me with the smallest breathing effort. Also rinitis, a very congested, blocked nose. I did have pulmonary tests and they were all negative. I'm just starting to use my new equipment and i am able to use it all night, but it's not helping. This is self titrating. I'm waiting for my post op sleep study next month. Thanks.

[Julie]

Have you considered bariatric surg. for the reflux? I know a few people found it made a lot of difference and the incidental weight loss also helped with OSA, even 'curing' it in a few cases.

[sickwithapnea]

how is the skin lined better than a regular trach?

I'm on another 8mm shiley and disappointed that it hasn't cured my OSA+CSA. I'm even on oxygen from a trach mask and I don't have clarity. I'm worried I'm not on bipap and that's damaging my brain due to centrals

2 months post op I feel like the asv is better than a trach alone. My asv was stolen and my oxygen

[Julie]

Newbies - it may not be evident that this poster (long time one) has problems that go way beyond physical, but I suggest you don't reply as it will only set off a long pointless session of messages, then he goes away only to come back after long periods with more unanswerable or meaningless questions. Can't be fixed or respond to logic.

[kteague]

I'm just starting to use my new equipment and i am able to use it all night, but it's not helping.

Please explain exactly what "it's not helping" means. You mentioned myoclonus. What exactly did your sleep studies say about this?

[Julie]

Kathy - you're responding to a post from June... not SWA's (if that's who you meant to reply to).

[chunkyfrog]

SWA's situation is an example of why there needs to be a CURE for OSA, because
there will always be a few people who cannot tolerate cpap, for one reason or another.
Most of us have no frame of reference to understand how mental illness can make sleeping with a mask
so terrifying that they will allow themselves to be virtually butchered for relief.
Unfortunately, these people are considered low-hanging fruit by charlatans who only see dollar signs--not human beings.

[D.H.]

Before CPAP, tracheotomy (I spell checked it) was the only treatment available for Sleep Apnea. CPAP was invented in Australia in 1979, out of desperation to save a patient who refused a tracheotomy! The experiment was so successful that CPAP has become the gold standard of treatment for Sleep Apnea. However, if you can't tolerate CPAP (or it doesn't help), or any of the other treatments, or any combinations thereof, then all you're left with is tracheotomy.

A good sleep center in the U.S. (or any other developed country), should be able to understand this. They may try to make sure that everything else was tried and failed, but once that's out of the way, there should not be an issue doing this.

The one other caveat I want to bring up is that if you have severe uncontrolled Sleep Apnea, it might not be safe to fly to the U.S. (or anywhere else).