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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Rainmom17
 
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Re: New to the forum. Looking for answers.

Postby Rainmom17 on Sat Aug 12, 2017 10:45 am

Rob K, I read this whole thread with great interest. It sounds like the advice you got on this forum set you completely in the right direction! I found it very encouraging. I am wondering how you are doing now?

Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Sat Aug 12, 2017 8:46 pm

Yeah, the awesome people on this forum helped me get my AHI down to around 1 most nights and I feel many times better. AHI in the 3-5 range was real bad for me. No different than going without the cpap.

Thanks for taking the time to read everything. Nearly all my problems came from sleep deprivation and not enough oxygen at night. I now only have to deal with normal middle aged aches and pains. Many thousands spent and several diagnoses and all I needed was the proper settings on my machine. I plan to contact all those doctors at some point to update them.

I just found out yesterday that I have a significantly sized tumor where my trachea and esophagus meet, in the larynx/voice box area. Apparently it is pretty rare for a tumor in this area. The doc says this is likely what is causing my apnea. It seems pretty obvious since he showed me some of the images on the computer from a cat scan and in some of them it looked like it was blocking 1/2 to 3/4 of my airway. Biopsy and pathology said it is not cancer, but it needs to come out or it could cause even worse problems than what I'm having. Doc said it is going to be more complicated than if it was cancer. With cancer they just remove the voice box, no other option. Since it's not cancer they will try to preserve normal breathing, eating, and voice functions the best they can. This is why things will be more complicated. Next step is MRI and getting a plan together for surgery.

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Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software
Last edited by Rob K on Sat Aug 12, 2017 9:24 pm, edited 1 time in total.

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Pugsy
 
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Re: New to the forum. Looking for answers.

Postby Pugsy on Sat Aug 12, 2017 8:56 pm

Good luck Rob.
Good thoughts and prayers heading your way.

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WearyOne
 
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Re: New to the forum. Looking for answers.

Postby WearyOne on Sat Aug 12, 2017 9:01 pm

Rob K wrote:Yeah, the awesome people on this forum helped me get my AHI down to around 1 most nights and I feel many times better. AHI in the 3-5 range was real bad for me. No different than going without the cpap.

Thanks for taking the time to read everything. Nearly all my problems came from sleep deprivation and not enough oxygen at night. I now only have to deal with normal middle aged aches and pains. Many thousands spent and several diagnoses and all I needed was the proper settings on my machine. I plan to contact all those doctors at some point to update them.

I just found out yesterday that I have a significantly sized tumor where my trachea and esophagus meet, in the larynx/voice box area. Apparently it is pretty rare for a tumor in this area. The doc says this is likely what is causing my apnea. It seems pretty obvious since he showed me some of the images on the computer from a cat scan and in some of them it looked like it was blocking 1/2 to 3/4 of my airway. Biopsy and pathology said it is not cancer, but it needs to come out or it could cause even worse problems. Doc said it is going to be more complicated than if it was cancer. With cancer they just remove the voice box, no other option. Since it's not cancer they will try to preserve normal breathing, eating, and voice functions the best they can. This is why things will be more complicated. Next step is MRI and getting a plan together for surgery.


My prayers are with you, Bob. Please keep us updated!

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Mask: Hybrid Full Face CPAP Mask with Nasal Pillows and Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: PR1 REMstar 60 Series Auto CPAP | SleepyHead Software | APAP: 9-10.5 [ CMS-50F Pulse/Ox

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Rainmom17
 
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Re: New to the forum. Looking for answers.

Postby Rainmom17 on Sat Aug 12, 2017 10:36 pm

So glad you found the info you needed here to greatly improve your sleep and health. And best wishes to you!

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Re: New to the forum. Looking for answers.

Postby Rob K on Sun Aug 13, 2017 9:39 pm

Thanks everyone for kinds words and compassion. Best case it all goes well and I'm off the cpap. That would be glorious.

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Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Fri Aug 25, 2017 6:59 pm

Doc figured out what is causing my apnea which produced all those health problems. Wow, that's quite the obstruction when you look at the images. MRI showed the tumor is blocking probably 3/4 of my airway in the voice box where the vocal cords are and the trachea and esophagus start. It's growing in the surrounding muscle and pushing the airway closed from outside. It will get removed from the outside, better to cut into skin and muscle in the neck on the outside than to make a hole in the breathing and eating pathway from inside also damaging the vocal cords. The tumor also made it look like I had a diverticula in my esophagus during early tests, but I don't so that's good news. Doc says 1-2 hours for surgery and home the same day if all goes well. Apparently he has done a lot of surgeries of this type and he made it sound like it was not a big deal.


Click to enlarge
Image

Image

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DavidCarolina
 
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Re: New to the forum. Looking for answers.

Postby DavidCarolina on Fri Aug 25, 2017 7:49 pm

You might actually need bipap

I would recommend trying one for a week

In my case I switched myself

I didn't get well until on b

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Rainmom17
 
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Re: New to the forum. Looking for answers.

Postby Rainmom17 on Sat Aug 26, 2017 10:47 am

Wow, good luck with your surgery. Amazing to find that. Hopefully you'll have no more apnea when you've recovered and you'll be feeling better than ever!

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Re: New to the forum. Looking for answers.

Postby Rob K on Mon Oct 09, 2017 6:42 pm

Tumor was removed over 3 weeks ago by cutting through the muscle and cartilage from the outside. Tumor was about 1" x 2" in size. Bigger than anyone had expected. Surgery was more complicated and sketchy than they were expecting. They cut about a 3" hole in my neck and wired the cartilage back together. Ended up in intensive care after surgery with respiratory failure. Also Pretty weird coming out of sedation nearly 24 hours later.

My first night on cpap registerd 0 AHI. I was pretty excited, but shortly after that it started to increase as the swelling increased. Most nights were around .5AHI give or take with a setting of 10-14cm. 90% pressure of around 11cm. Previous to surgery AHI was around 1-1.5 most nights with the same settings.

The swelling peaked about a week or so after surgery and has been on the decline the last week or two. I just changed the pressure settings to 9-14cm and will see how things go. Hopefully as my body returns to normal I can keep reducing the pressure and maybe get off the machine. I would love that since wearing this thing has been a test of my patients over the years. Would be pretty disappointing if I have to keep using it for the rest of my life.

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Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software

Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Tue Dec 05, 2017 7:51 pm

Surgery was a few months ago. Recovery took about a month. My voice was pretty bad for a while and is mostly back to normal. Still can't talk loud, but it's getting better slowly as the vocal cords get stronger. Now that the tumor is removed I want to see how bad my apnea is and whether or not I need the machine. I had been working days, nights and weekends for the last month and needed all the rest I could get so I didn't want to experiment with the machine until my schedule was suitable for some possible poor nights of sleep.

Short of getting another sleep study, what would be the best way to figure out how bad my apnea is after having the tumor removed? I seen my Remstar 560p has a setting for split night. Would that be the way to go or is there a better option? I think I read the machine will do minimum pressure in cpap mode for either 2 or 4 hours then switch to auto mode the rest of the night. I could set the pressure range from 4-14. Rarely do I need a pressure of 13.

I know it's not easy to breath with the mask on at a pressure of 4; easier to breath without it with at that low of pressure. If a person without apnea strapped on the mask and used a setting of 4 would it possibly show apnea events? Or would someone with mild apnea possibly see more events recorded? Would that low of pressure make breathing and events worse? Trying to avoid false results.

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Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
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Pugsy
 
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Re: New to the forum. Looking for answers.

Postby Pugsy on Tue Dec 05, 2017 8:30 pm

The only false events you might see would be awake/semi awake breathing irregularities getting flagged by mistake.
If you are sound asleep any flagged events would be real.

I would start by doing apap mode with a pressure minimum as low as you were comfortable with and see what happens.

_________________
Machine: AirSense™ 10 AutoSet™ For Her CPAP Machine with HumidAir™ Heated Humidifier
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Additional Comments: Backups..AirCurve 10 ST, S9 Adapt, PR S1 Bipap #760

Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Wed Dec 06, 2017 4:43 pm

Did you mean to say cpap mode set at a minimum pressure that I can handle? If set to apap then the machine would adjust pressure to eliminate apnea events which is what we don't want if we are trying to see how bad things are. From what I understand everyone has a certain number of events, but we're not diagnosed with sleep apnea until we get above an AHI of 5. Sound right?

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Pugsy
 
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Re: New to the forum. Looking for answers.

Postby Pugsy on Wed Dec 06, 2017 5:07 pm

Rob K wrote:Did you mean to say cpap mode set at a minimum pressure that I can handle? If set to apap then the machine would adjust pressure to eliminate apnea events which is what we don't want if we are trying to see how bad things are. From what I understand everyone has a certain number of events, but we're not diagnosed with sleep apnea until we get above an AHI of 5. Sound right?


No, I meant apap mode because in apap mode you still get FL flagging and in cpap mode it's turned off.

You can set it apap mode with minimum to equal maximum so that you still get FL flagging but the pressure is fixed like cpap mode.
FLs aren't part of the AHI but they could be a potential sign of a problem if present in large numbers so kinda like to know if they are happening or not.

And yes...you don't get the official diagnosis of OSA until the AHI is 5 or more....but sometimes that AHI can be a bit misleading.
Like if a person has times with a lot of events in a cluster for parts of the night and not much going on other parts of the night...maybe on their back or REM for part of the night. So the overall average might be low but there might be some ugly clustering that could be potentially troublesome.

_________________
Machine: AirSense™ 10 AutoSet™ For Her CPAP Machine with HumidAir™ Heated Humidifier
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Additional Comments: Backups..AirCurve 10 ST, S9 Adapt, PR S1 Bipap #760

Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Thu Dec 07, 2017 8:12 pm

I didn't know the data was lacking in cpap mode. Will try min/max of 4 this weekend in apap mode. Fingers crossed that events are low enough that I can ditch the machine. Thank you.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software

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