Still struggling; ENT visit suggested

Fatigue Fighter · Post by **Fatigue Fighter** » Sat Oct 22, 2005 6:42 pm

Hi all,

It has been a long time since I last visited. I have been having a very hard time with this obstructive sleep apnea treatment not working (regardless of how compliant I am - I average >8 hours/night). I visited with my sleep doc last week and he suggested a couple of things.

1) Make an appt with an ENT to discuss zapping my turbinates. Sounds like science fiction to me so I am hesitant. Then there is the insurance thing....they don't cover this treatment! Anybody have success with this treatment and with getting their insurance to cover it? The doctor said my turbinates were unusually large. I figured they would be since I've had 17cm H20 blown into them via nasal pillows since September 2. And before that....14 cm and 12cm. It's been 18 weeks of this so I am really frustrated by the whole thing.

2) Try an APAP set for 12-18 with c-flex at "2" since I have such a hard time exhaling. Im currently on a BiPAP. The sleep tech doc had such a hard time interpreting my last titration because my apnea/hypopnea events occurred at any odd time without any rhyme or reason...basically, I was all over the map so they couldn't figure out what to titrate me at. So...they increased it to 17!

I did order a Respironics APAP with C-Flex as I am about fed up with 17cm constantly blowing in my nose. I hope the APAP works for me. My brain feels like I left half of it somewhere else and I have been getting a lot of dizzy spells the last few days.

Thanks for letting me vent. I do want to know if anyone knows anything or has experience with having their turbinates zapped. I haven't a clue as to what is involved and not sure I want to even go there if insurance won't pay for it.

snork1 · Post by **snork1** » Sat Oct 22, 2005 6:54 pm

I am definitely a success story for getting tubinates surgically reduced and a bunch of other work done to open my sinuses.

After surgery, not only did CPAP FINALLY work (after a year of totally compliant frustration) by I was retitrated and my pressure went from 10-14cm (and more time at 14 than ten) to 6-10cm and most of my time is now spent at the lower end of THAT range, especially since I got PB GN 420E.

But make sure the ENT does a thorough check BEFORE hacking away or even doing RF ablation, with at least an endoscopy and CT scan. In my case the ENT discovered I also had EXTREMELY impacted and infected sinuses, which resulted in the whole thing being covered by insurance.

i.e. find a good HEALTH angle, which should be easy, for getting your turbinates reduced.

For ME, it was the best move I have made for my health since getting CPAP.

Sleepless on LI · Post by **Sleepless on LI** » Sat Oct 22, 2005 7:07 pm

FF,

I give you a lot of credit for your compliance when you're having other physical problems that are making it not work. Sounds like the thing to do. If the air can't get past, it can't help you.

I have the machine you're about to get. It's a great machine. But sounds like you have to "zap" those tubinates so that the therapy can work. Let us know how you make out with the ENT. We all wish you some good times ahead. And congratulations for sticking with it. I'm sure it hasn't been easy.

Fatigue Fighter · Post by **Fatigue Fighter** » Sat Oct 22, 2005 8:28 pm

[quote="snork1"]I am definitely a success story for getting tubinates surgically reduced and a bunch of other work done to open my sinuses.

After surgery, not only did CPAP FINALLY work (after a year of totally compliant frustration)

Wow. A whole year of compliance and CPAP didn't work for you until you had this surgery done? Is it done as an out patient? How long did it take you to recover? Did they grow back (the turbinates)? Are there any websites you can recommend for me to look into this further?

I know everyone is different but maybe based on your success I should at least have it checked out. I am such a nervous nelly when it comes to surgery (and endoscopy too). But, I have to do something to get this treatment to work.

Thanks for responding, Snork1

Fatigue Fighter · Post by **Fatigue Fighter** » Sat Oct 22, 2005 8:34 pm

[

quote="Sleepless on LI"]FF,

I have the machine you're about to get. It's a great machine.

Hi Lori,

Congratulations on your 25 wedding anniversary! Mine's coming up in 3 years.

As for the Respironics machine...I figured since I own the heated humidifier I might as well get the APAP system too. Besides, I need the C-Flex feature. I decided to pay out of pocket. I just can't justify the amounts the DME's charge the insurance and then charge me!
If it doesn't work as well as the BiPAP, then I can always use it as a backup system.

Thanks for the encouragement.

FF

neversleeps · Post by **neversleeps** » Sat Oct 22, 2005 8:49 pm

Here is a link you'll be interested in. Scroll down to the section dealing with
Nasal turbinate and Sinus surgery experiences.

LINKS to surgery, turbinates, Pillar, TAP experiences

Jere · Post by **Jere** » Sat Oct 22, 2005 9:27 pm

I had turbinate reduction done (surgically and then touched up with some zapping). It definitely helped. You have to hang in there for a few unpleasant days. I don't think I would have been able to adjust to CPAP without having the nasal work done.

Good luck!

Swordz · Post by **Swordz** » Sat Oct 22, 2005 10:24 pm

FF: I am so in your spot too! (Well, without the insurance prob, as I don't have insurance.)

Get it done. Everyone is telling me its worth it, and def lets you breathe better. My ENT said my right nostil was 100% blocked, and left 70%. I think there are more than 1 thing they can do to the turbinates (coderize[sp?]). Let me know what you get done and how it goes.

I'm pretty much a wuss 4 anything, and surgery doens't help. Mine is scheduled for Nov 18th, so keep up w/ me.

Fatigue Fighter · Post by **Fatigue Fighter** » Sat Oct 22, 2005 10:54 pm

Swordz wrote:FF: I am so in your spot too!

Hey Swordz....if I had just looked beyond my nose I would have read your recent post and thread on this very subject

My problem was that I was not even sure I wanted to see an ENT. Now that I have read the links on this subject....I definitely will make an appointment. Thanks.

FF

Fatigue Fighter · Post by **Fatigue Fighter** » Sat Oct 22, 2005 10:57 pm

neversleeps wrote:Here is a link you'll be interested in. Scroll down to the section dealing with
Nasal turbinate and Sinus surgery experiences.

Whoa! That's a lot of info. Thanks much! It's just what my curious mind needs.....(somehow more info helps me stay calm and rationale). This is great.

FF

rested gal · Post by **rested gal** » Sat Oct 22, 2005 11:17 pm

Here is a link you'll be interested in. Scroll down to the section dealing with
Nasal turbinate and Sinus surgery experiences.

You took the link right outta my mouth, so to speak, neversleeps. Good girl!

Sleepless on LI · Post by **Sleepless on LI** » Sun Oct 23, 2005 8:15 am

rested gal wrote:
Here is a link you'll be interested in. Scroll down to the section dealing with
Nasal turbinate and Sinus surgery experiences.
You took the link right outta my mouth, so to speak, neversleeps. Good girl!

Thanks to you both, RG and Neversleeps, always there with links that are right on topic. Don't know how you do it, but you always do. Must be the sign of an organized mind, something that after 48 years I'm still working on perfecting.