"please keep me updated about oximeters "
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Question for Dr. Mack Jones
I am hoping Dr. Jones sees this.
Hi Dr. Jones,
I had a permanent tracheostomy performed this past November at UCLA for difficult to treat OSA. I'm just now starting to feel better and also experienced this hungover feeling for 3-4 months post surgery. I think central sleep apnea may have developed as I've read it is common post sleep apnea surgery which is why they don't recommend a sleep study until 6 months post surgery. My trach isn't the tube free (skin-lined) kind but is considered permanent and will not close. I believe they sewed my skin to my trachea. I keep it stented with the Hood Stoma Stent. If I don't use a stent the hole starts to shrink but will not close permanently. To stretch it back out I stick a Shiley trach tube in it til it reopens fully then I reinsert the Hood Stoma Stent. It isn't much of a bother except that if I forgo wearing the stent at night (or if it falls out) the hole starts to shrink and I wake up with a hungover feeling since I'm getting less airflow. Overall, this trach is the best thing that has ever happened to me but there are some details to work out.
My questions are:
With the tube-free (skin-lined) tracheostomy can you forgo wearing a stent all the time? Does the skin start to contract and shrink the stoma opening as in my case?
Where was your trach performed? From what I've read on sleepnet.com most people got theirs done at the Cleveland Clinic.
Please let me know Dr. Jones and thank you for all the advice you have posted on this forum.
Views: 639
Replies to This Discussion
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Permalink Reply by Mack D Jones, MD, SAAN on
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Marie,
Yes, the skin will tend to grow inward to some degree. This is not a bad thing because the stoma opening will be less likely to leak air if the skin tightens against the stent. You should wear a stent all the time, especially at night, because head and neck movement will cause the opening to close down, preventing free flow of air when needed (I learned this lesson the hard way). I use a short closed stent during the day and a longer open one at night or whenever I take a nap.
My tracheostomy was performed by Dr Sam Mickelson in Atlanta at the Northside Hosp. He has a slight variation to his trachs in that it's skin lined with a 27 degree downward slant to accommodate a Montgomery Long Term Cannula. I don't know his experience with others, but my own experience with him was positive and I wouldn't hesitate recommending him.
BTW, I had the same experience for a couple of months after my trach and guessed it was centrals since they are known to occur post-op. A sleep study was negative, so I guessed I likely had a few white matter lesions (I mentioned in the book) which accounted for my symptoms. This all disappeared when I finally returned to a more "normal" status in about eight months. I attribute that to the natural healing process (brain plasticity) now that my brain was no longer hypoxemic at night.
I'm doing so well with my trach that you couldn't pay me to have it closed and go to back PAP machines, (even though I never had any real problems with them). Frankly, I think a lot more victims would do better with trachs (but don't tell anybody, because they will think you are crazy).
Mack
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Mike,
It's surprising how few docs have an in-depth understanding of OSA and it's treatment. Some of the most informed are those who have OSA themselves and have had to struggle with it like everyone else. The last sleep doc you want to see is one who is obese, has diabetes and/or high blood pressure and has never had a sleep study. He/she hasn't a clue.
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Permalink Reply by MARIE G. on
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Thank you for your responses. I'm planning to keep this trach forever and I'm only 32. I've tried cpap, bipap, auto-bipap, dental devices and mma surgery and nothing beats the trach. I too had a hard time convincing my sleep docs at Stanford for a trach, they all thought it was way too drastic. Even fellow c- pappers thought I was crazy. My surgeon who did my mma surgery referred me to a ENT at UCLA who performs trachs regularly. Otherwise, I would have had a difficult time convincing someone to do it because they are uncommon. The trach's effect on my life thus far has been truly life-changing.
To Dr. Jones:
It seems as if you and I have the same type of trach. Have you ever heard of the long-term tube-free tracheostomy performed at the Cleveland Clinic? Here is a link to their website explaning the procedure:
http://my.clevelandclinic.org/head_neck/patients/laryngology_trache...
Supposedly, you don't have to wear a stent all the time to keep the stoma open and you use your neck muscles to close the stoma so you can speak. I've read people's experience with it on www.sleepnet.com under "non-cpap options". The Cleveland Clinic is the only place they do it. I may try to get my trach converted to this one just in case they stop making the Hood Stoma Stent (only one that fits me) or maybe I'm just paranoid.
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Yes, I read about it in one of the ENT Clinics publications some years ago. (BTW it was edited by my ENT trach surgeon). I was skeptical then and remain skeptical as to it's effectiveness and the potential downsides. It would be interesting to read the comments of those who have had it done though. Thanks for the references. I'll check them out.
Also, let me correct a previous statement. You don't have to use your stent all the time. You can go without it during the day if you choose, but make sure you have some kind of protective cover so you don't inhale something you'd rather not have down in your lungs. Your stent will likely fit a little more snugly.
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