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jamievetro
Unread post  Post subject: Have Realistic Expectations on Surgery  |  Posted: Sat Jan 28, 2017 3:23 pm

Joined: Sat Jul 02, 2016 5:46 am
Posts: 3
Location: Baltimore
PAP Mask: ResMed Swift LT
PAP Machine: ResMed S9 Auto
Pressure Setting: with CPAP i was 14 cm H2O. Now with Auto, I use a range of 13-18 cm H2O

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Excuse me if this is wordy, but I figured i could use my case as an example.

I'm 46 now and was originally diagnosed with OSA back when I was 30 years old and still in the service. It was actually diagnosed in my exit physical, and I was at 86.2 events per hour. However, I pretty much laughed off the suggestion of the doctor about using a CPAP until I was 36. It changed my life. But it became a love-hate relationship. I tried multiple machines and masks but hated them all. My pressure was 12cm with nasal pillows (maybe because of my septum, but mine changes up to +/- 1cm on the auto pap depending on my type of mask and sleeping position)

At 38 I went to a specialist and was told that surgery for my deviated septum would help me tolerate a mask better (one side is almost always congested). It didn't really help me at all.

In 2012, At 42, I had a friend with sleep apnea (18 events an hour) who was acquainted with the head of otolaryngology of a major mid-atlantic research hospital (via his wife). She suggested surgery and it seemingly worked for him. So, I made an appointment (it took months) and she presented me with options that she said would dramatically improve my apnea. She suggested:

1. Z-palatoplasty (a modified UPPP technique for patients with tonsils)

2. Midline Glossectomy (narrowing of your tongue)

3. Lingual Tonsillectomy

4. Hyoid Suspension

These surgeries were about as painful as anything I've ever experienced. I couldn't eat solids for weeks. I think that it was 3 weeks before I went back to work. It was not a great time. I didn't experience the dribbling issue when you drink that others have.

So, how'd it work? remember, she said that it would dramatically improve my situation. Well it depends on how you define improve.

My post-surgery sleep test (2 months) brought me all the way down to 58.2 events an hour, with a pressure of 14cm, and the fancy new addition of a chin strap. For some reason my mouth now opens when I sleep. it never did before. Maybe it's because she attached my hyoid bone to my jaw? I don't know, I'm a history guy. Another fun post-surgery result is that even now, almost 5 years later, I still have a hard time swallowing small objects. I can take bite of a sandwich no problem, but that same sandwich may leave a small piece caught at the top of my throat and having me coughing for 5 minutes (and gargling water) until it dislodges. Very fun in restaurants...

So, I feel like the end result is that quality of life and sleep are worse off than before my surgery. But yes, the head of otolaryngology did deliver the "dramatic improvement" of 86.2 events an hour to 58.2 events. So I have that going for me. A funny anecdote, after the results of my post-surgery sleep study, I went to see an ENT unaffiliated with that hospital. The doctor chuckled and said that the only way a person with my makeup was going to be cured was a tracheotomy. When i told him who performed the surgeries, he responded that she probably took me to use me as part of a study. Anyway, yes I am fairly salty because i think that she knew that i would still be on a CPAP when all was said and done, so she chose her words wisely.

I write this though, as a warning to really see what the surgeries are treating and to ask detailed questions about the expected results of the surgery. Then, get another opinion or two. I'm sure my friend, with mild apnea, was a good candidate. I am equally sure that I wasn't. Unfortunately, I sought second opinions and researched after the fact.

I hope this rambling helps someone. If you have questions just ask.


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BillyHW
Unread post  Post subject: Re: Have Realistic Expectations on Surgery  |  Posted: Sat Jan 28, 2017 8:07 pm
User avatar

Joined: Mon Jan 23, 2017 10:35 pm
Posts: 71
Location: Alberta, Canada
PAP Mask: F&P Simplus
PAP Machine: Philips Dreamstation Auto
Pressure Setting: 12 to 20 cmH2O

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So you have an AHI of 58.2 even with the CPAP?

Why aren't you on 20 cmH20 then? Or even a machine that does more than 20 (do they even exist)?

Is there such a thing as CPAP-resistant sleep apnea?


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trish6hundred
Unread post  Post subject: Re: Have Realistic Expectations on Surgery  |  Posted: Sat Jan 28, 2017 8:18 pm

Joined: Tue Apr 14, 2015 12:10 pm
Posts: 736
PAP Mask: Fisher & Paykel Simplus
PAP Machine: Resmed S9AutoSet for Her
Humidifier: H5I
Pressure Setting: Titrated Pressure is 10 CM-H2O, I use a range of 7/20 CM-H2O.

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Hi JamieVetro,
WELCOME! to the forum.!
Wow, you have been through the wringer.
Hopefully, you will do better with CPAP therapy.
Hang in there for more responses to your post and good luck to you.


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diamaunt
Unread post  Post subject: Re: Have Realistic Expectations on Surgery  |  Posted: Sat Jan 28, 2017 9:03 pm
User avatar

Joined: Wed Mar 02, 2016 2:26 am
Posts: 1591
Location: Dallas(ish)
PAP Mask: Resmed P10
PAP Machine: Resmed S9 vpap auto
Pressure Setting: 18/13-25/19

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BillyHW wrote:
Or even a machine that does more than 20 (do they even exist)?

oh yes, yes they do.

_________________
https://sleep.tnet.com/resources/sleepyhead
how to post:
https://sleep.tnet.com/resources/sleepyhead/shorganize
https://sleep.tnet.com/reference/tips/imgur


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jamievetro
Unread post  Post subject: Re: Have Realistic Expectations on Surgery  |  Posted: Sat Jan 28, 2017 9:31 pm

Joined: Sat Jul 02, 2016 5:46 am
Posts: 3
Location: Baltimore
PAP Mask: ResMed Swift LT
PAP Machine: ResMed S9 Auto
Pressure Setting: with CPAP i was 14 cm H2O. Now with Auto, I use a range of 13-18 cm H2O

Offline
BillyHW wrote:
So you have an AHI of 58.2 even with the CPAP?

Why aren't you on 20 cmH20 then? Or even a machine that does more than 20 (do they even exist)?

Is there such a thing as CPAP-resistant sleep apnea?


I probably explained it wrong. No... the 58.2 was the sleep study after the surgery, before they started the CPAP therapy. She implied that if i had the surgeries, I would be able to come off the CPAP, but that was not the case. Therefore I am still on a CPAP with a setting of 14 cm (or when i use the auto, 13-18 range).


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jamievetro
Unread post  Post subject: Re: Have Realistic Expectations on Surgery  |  Posted: Sat Jan 28, 2017 9:34 pm

Joined: Sat Jul 02, 2016 5:46 am
Posts: 3
Location: Baltimore
PAP Mask: ResMed Swift LT
PAP Machine: ResMed S9 Auto
Pressure Setting: with CPAP i was 14 cm H2O. Now with Auto, I use a range of 13-18 cm H2O

Offline
trish6hundred wrote:
Hi JamieVetro,
WELCOME! to the forum.!
Wow, you have been through the wringer.
Hopefully, you will do better with CPAP therapy.
Hang in there for more responses to your post and good luck to you.


Thanks tish6hundred! Like I said, love-hate with it. I found this forum because I am always in search of the "next" mask or machine. These boards have been great.


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BillyHW
Unread post  Post subject: Re: Have Realistic Expectations on Surgery  |  Posted: Sun Jan 29, 2017 12:23 am
User avatar

Joined: Mon Jan 23, 2017 10:35 pm
Posts: 71
Location: Alberta, Canada
PAP Mask: F&P Simplus
PAP Machine: Philips Dreamstation Auto
Pressure Setting: 12 to 20 cmH2O

Offline
jamievetro wrote:
BillyHW wrote:
So you have an AHI of 58.2 even with the CPAP?

Why aren't you on 20 cmH20 then? Or even a machine that does more than 20 (do they even exist)?

Is there such a thing as CPAP-resistant sleep apnea?


I probably explained it wrong. No... the 58.2 was the sleep study after the surgery, before they started the CPAP therapy. She implied that if i had the surgeries, I would be able to come off the CPAP, but that was not the case. Therefore I am still on a CPAP with a setting of 14 cm (or when i use the auto, 13-18 range).


I'm sorry to hear that your surgery was not successful. :(


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