[CPAP] Jo1cpap - Therapy Thread

[Geer1]

You must not be interpreting your flow rate chart properly, your exhales are longer than inhales as is normal.

In this image the area between red lines is inhalation, the area between blue lines is exhalation. Flow rate chart is positive (above red dotted line) during inhalation and negative during exhalation.

[Jo1cpap]

Hello Dormeo and Geer1,

I was indeed reading the flow chart wrong. Thinking the total rise was inhale and the fall was exhale. Wow!

Is the curve a reprentation of an analog parameter? Motor resistance?
Has the scale a meaning?

Thanks,

[Jo1cpap]

Hello,

The speech therapist send me again to a ENT.
This time I had the opportunity to explain very detailed what my breating problem is and she used endoscopy in different postions.
(sitting like playing piano, riding bike, driving a car - so all static possitions)
We dit not try laying on the back.

Diagnose:
Airway almost completely closed palatal in antero- posterieure direction.

Possible cure:
uvulopalatoplastie + tonsillectomie

This diagnose is not while sleeping. 

I know most people here do not recommend surgery as treatement for apnea and I would avoid it at al cost myself.
But my breathing problems do also exist during daytime.

What to think about it?

Kind regards, 
Johan

[Gideon]

There is a tie and a place for surgery. y wife had a Teflon augmentation of her vocal cord. I relieved some very serious issues with her breathing decades ago BUT, it turns out that Teflon is not near as inert as they thought and granulomas formed that very seriously impacted her life and breathing. Surgery or a permanent Trach were the only options. We chose surgery. She has had to repeat the surgery approximately every 10 years.
I am not an expert on those surgeries, but it is your choice. Do note that you may require a repeat surgery years down the road if your apnea reappears.

[Jo1cpap]

Hello all,

This time I'm clueless.
I'm not afraid of surgery.
But this time I can't find almost no success stories.

I can live with CPAP as therapy for the night.
But I'm strugling with.
Will the surgery help my breathing during daytime.
And how long will it last.

Who knows success stories.
Any tips to objectivate this matter?

Kind regards, 

Johan

[Geer1]

Interesting diagnosis and looking back it is supported by some of the previous ENT findings you mentioned (long uvula, class IV Mallampati, class IV Friedman). That first ENT also noted a large tongue (macroglossia) and a small oropharynx which would indicate restriction lower in your airway as well. Did that first ENT recommend any surgeries, further testing etc? Do you think your tongue has gotten larger/swollen over time and potentially might be causing your trouble breathing (you commented in the past about feeling like you have to stick it out with mouth open to breath freely)? If so have any of your doctors looked into the potential causes of macroglossia?

Like Gideon said there is a time and a place for surgery and based on the findings of two ENTs your airway shows multiple signs known to make breathing and apnea worse. If I were in your shoes I would have a few questions for yourself/doctors when considering surgery.

1) Does this upper airway/nasal restriction explain the symptoms and issues as you perceive them? These surgeries would primarily address difficulty breathing out of your nose. 

2) Have the doctors fully investigated the macroglossia and other airway findings to make sure there isn't a reversible reason for the issue (say hypothyroidism).

3) Do the two ENTs recommend the same surgeries or do they have different opinions on whether the findings are significant and whether or not surgery is recommended? Two opinions in agreement with each other would make me more willing to undergo surgery although I would trust a single doctors opinion more if I knew they were very good at what they do.

4) If undergoing surgery is there anything else that should be considered at the same time or is this the best starting point and perhaps follow up surgeries may be recommended if indicated? For example if they feel like they have fully investigated macroglossia, it isn't reversible and your tongue size is believed to be a contributing factor does it make sense to also perform surgery to reduce your tongue size to improve oropharynx area?

Regarding apnea these surgeries should not be viewed as a cure for your apnea especially because they do not address the tongue/oropharynx region which sounds like it has a decent chance of being part of your apnea issue. If you decide to go ahead with these surgeries I would do so on the basis of believing they should help treat your awake breathing issues as you perceive them. I would go into these surgeries assuming you would still have apnea and require CPAP to treat it.

The biggest reason surgeries like UPPP or CAUP (I assume one of these is the translation for the surgery you mentioned) are controversial for apnea is because palate restriction is rarely the entire issue when it comes to apnea and therefore the surgery usually fails to cure apnea. Many people that get the surgery come out still requiring CPAP or worse still requiring CPAP and having negative side effects and obviously this surgery would be considered a failure for most of those patients. Your situation is different for the primary reason you stated, you believe you have awake breathing issues as well. Diagnosing and treating these awake breathing issues should be your priority and if something like palate restriction is the issue it would be fairly safe to assume the surgery will also help improve your apnea/sleep breathing as well (just wouldn't expect it to cure it in entirety).

Edit: You posted a response during my essay... We are the wrong resource to ask about success for these surgeries fixing your breathing issues because a) Imo it isn't clear what your breathing issues are and b) We don't have experience with such cases. This is something you need to rely on your doctors for advice on or try to find another resource for. Perhaps you can find a forum, facebook group or something else specific to these surgeries and potentially find people that suffered with similar symptoms and found improvement etc after the surgery to help ease your decision.

[Jo1cpap]

Hello all,

Thanks for helping.

@Geer1
I have seen many doctors last year.
This week was the discovery.
For the first time I was able to clearly explain and put on camera my problem. (endoscopy)
No ENT nore pneumologist nor sleep doctor have taken the time before to really investigate my daytime findings.
They measure only in their setting. (on a machine or in their chair in a certain position)
Laying in a chair with my mouth wide open does not show what is happening sitting straight with chin tuck position.

In that position my soft palata and tongue and ??? close the airway almost completely.
Normal nose breathing with belly is almost impossible in those positons. 
(bike, car, sitting at piano)
  

Now I have an endocopy showing what is happening.
And I try to find people in the same situation.


The best info I found is this link below.
As far as I know I'm a stage III patient.
Success is very low for sleep apnea in that situation.
Why should success be higher for my daytime problem?

https://chicagosleepcenter.com/wp-conten...y-2002.pdf

Thank you,
Johan

[Geer1]

Frankly I think the problem is that you have gotten fixated on apnea (probably because it is the one thing doctors indicated as being an issue so easy to run with) and now you don't know how to figure out the other main issue or communicate it to your doctors effectively. Unfortunately in this day and age you often have to figure things out on your own and steer your doctors in the right direction to at least finally get the right referral etc. The reality is your case sounds fairly unique and most doctors probably haven't dealt with something similar and if they have they may not have diagnoses or successfully treated it.

Imo your fixation on apnea is blinding you of the real problem. Imo the proof is that apnea does not affect awake breathing which appears to be your main complaint. If apnea doesn't explain your problem breathing when awake then there is obviously something else happening. In this case two issues may be related based on findings so far but it is probably hard to prove what is the issue.

Along these same lines the ENT recommended surgery to open up your airway. Wouldn't it make more sense to try and find the success rate for this surgery in opening up your airway and making it easier to breath rather than focusing on its success rate to treat apnea?

As I tried to explain in previous post this surgery does often fails to fully treat apnea because apnea also occurs lower in the airway in most patients. That paper you linked to says the exact same thing and vices more deatils. It outlines how in cases like yours where there is macroglossia, high Friedman, high Mallampati etc the chances of successfully treating apnea with UPPP alone is low because there is usually lower airway (hypopharynx) obstruction as well. One good question is what does this study define as a successful surgery? If you look it up they define success as a reduction of RDI (AHI + RERAs/hour) by half and maximum remaining RDI of 20. They aren't basing success of the ability for the patient to breath easier or even just some level of improvement in apnea. They are only considering the surgery a success if it makes an obvious, substantial improvement to RDI.

In the last paragraph before the conclusion section it goes on to say that in stage 3 cases like yours that adjunctive procedures are usually required to address the hypopharynx restrictions as well in order to be successful. They say these patients usually require at a minimum radiofrequency tongue base reduction (surgery to reduce the size of your tongue) and that tongue advancement or maxillary mandibular advancement may also be required depending on the case. It is a pretty safe bet to say that in case like yours where there is a known palate/nasopharynx restriction performing surgery on the hypopharynx portion of airway alone and not also addressing the palate obstruction would likely also fail to treat your apnea. This is why in my last post I said it is worthwhile checking with your doctors to see if other surgeries should be considered and this study outlining those potential surgeries pretty much confirms these thoughts and provides you with the options that maybe should be considered.

So how do you proceed?

First you figure out which doctor you need to discuss this with. Your general practitioner, recent ENT, try to find someone else even more specialized? You go in and say you know you have sleep apnea issues due to well documented upper airway restrictions that your most recent ENT recommended surgeries for. Say that the sleep apnea is only a portion of your issue and that you are adamant you also have trouble breathing at all times when awake and in almost all positions other than with open mouth, tongue sticking out etc. Say you are wondering if the original ENT findings of macroglossia, Friedman IV, Mallampati IV etc combined with these recent nasopharynx restrictions indicated by previous ENT may explain your trouble to breath while both awake and asleep. Ask if there are any follow up tests, doctor referrals etc to confirm this and further cement if/what treatments or surgeries would be recommended. I would also ask if there are any potential causes of macroglossia that can be tested for in the case it might be reversible (you can give hypthyroidism as an example of a potential cause you read about) since it may potentially be that this condition or at least part of it is reversible without surgery. This is why I asked if you think tongue got larger, I do find it odd that this issue appeared to set in at an older age whereas if it was just a physical attribute you have had your whole life I would have thought it would be more troublesome at a younger age or have a very slow onset whereas your complaint indicated a potentially faster onset which would make one believe something changed.

My guess is that it would end up being an ENT to make these diagnoses and recommend treatments, surgeries etc. The hard part is finding the right ENT that specializes in this type of airway restriction as well as sleep apnea. You are looking for someone that has knowledge and experience in all these types of surgeries or works as part of a team in conjunction with an orthodontist etc (think they usually do MMA). You probably need to find someone that is part of a top end university hospital/program or a specialized practice rather than just your run of the mill ENT. Maybe the recent ENT you saw is adequate and a follow up to bring up these extra concerns with them will suffice (or result in them referring you to see someone else to further investigate this).

In short I think you need to stop focusing on apnea and try investigating this airway restriction and awake breathing issue. Find the right doctor, make the right case with all the data you have collected from other doctors and hopefully they will confirm that it seems plausible and that they think they can do something to help.

[Jo1cpap]

Hello Geer1,

Thank you
I think you are correct.

My apneu has been discovered by change when I went to a doctor for tinnitus.
She told me to do a sleep test on based on my other complaints.
I never had heard about sleep apneu before.


I thought after my diagnose (severe apneu) that all my problems were related to sleeping problems.
I didn't have the feeling that my daytime problems are life threatening so I ignored them probably.
I was thinking I had bad practice habbits (music playing - brass player) and had to try to relax more.

The findings with the last ENT are a mind changer.
Normally I'm not scared for surgery but this time I'm terrified.
Too many uncertain parameters.

Most info about UPPP on the web is apneu or snoring related.
I find almost nothing of UPPP or alternatives related to daytime.
I will not start surgery before I have more info.

I will try to find the best doctor I can with all the info I have.

Kind regards, 
Johan

[Geer1]

I find almost nothing of UPPP or alternatives related to daytime.
I will not start surgery before I have more info.

Your explanation of symptoms is not common, unlike apnea. The trick is trying to figure out what exactly is bother you and how to articulate that to a doctor successfully. You have enough tidbits from previous doctor visits I feel you should be able to compile their reports, highlight specific findings that support your theory and then approach a doctor to try and piece everything together.

I too would not start with surgery and probably would get a 2nd opinion to see if it agrees. The one downside of steering doctors is that sometimes they will believe you and do things even if it isn't clear to them it is an issue. Once you get the right doctor and they look at things and go yup this is probably the problem for these reasons and we should do x, y, z you know you found the right guy.