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Re: Tonsillectomy and UP3 surgery
Posted: Mon Aug 04, 2014 8:53 am
by Nozzelnut
apw5746 wrote:Nozzelnut wrote:I've had it too. It was the most painful surgery I've had.
Bottom line. If you've been diagnosed with OSA, you'll be on a CPAP the rest of your life.
I disagree. If weight was a factor in developing OSA, losing weight should help. If the inflammation in my throat caused by inflamed tonsils added to it; getting them removed will help. If some more of the irritation was caused by snoring and the uvula was the culprit; having that removed will help. If my thyroid problems also helped constrict my airway, getting those under control will also help getting off xPAP. For me, it was a combination of several things that added up to OSA.
Re: Tonsillectomy and UP3 surgery
Posted: Mon Aug 04, 2014 10:40 am
by ChicagoGranny
Nozzelnut wrote: If weight was a factor in developing OSA, losing weight should help. If the inflammation in my throat caused by inflamed tonsils added to it; getting them removed will help. If some more of the irritation was caused by snoring and the uvula was the culprit; having that removed will help. If my thyroid problems also helped constrict my airway, getting those under control will also help getting off xPAP. For me, it was a combination of several things that added up to OSA.
So many factors. Another one that comes to mind is swelling of the airway caused by inflammation from reflux.
You made a good reminder that the human is a very complex organism and maybe, like they say, that is why doctors "practice" medicine.
Re: Tonsillectomy and UP3 surgery
Posted: Thu Aug 07, 2014 9:26 am
by Coolsideofthepillow
I have always had issues with the size of my tonsils. The main purpose for the surgery is I think I get Strep often but do not show symptoms other than a sore throat. With a 3 year old and 6 week old it's also so I can open my airway up and breath a bit better when chasing them around. I also occasionally get an inflamed Uvula which often doubles in length and hangs down into my throat gagging me. The first ENT I saw was chop happy. The second one (highly thought of). Laid everything out there. She told me there were no guarantees, that it would be very very painful but it was my call. She said she sees many adults every year and only does about 5 surgeries because she said it doesn't feel right putting someone through that "torture" if there was zero benefit.
I am scared but very hopeful it will increase my energy levels somewhat. I know it will not get me off of the Auto SV but my hope is to reduce the pressure some more.
Re: Tonsillectomy and UP3 surgery
Posted: Thu Aug 07, 2014 9:27 am
by Coolsideofthepillow
If I could get to a dental appliance I would be over the moon.
Re: Tonsillectomy and UP3 surgery
Posted: Thu Aug 07, 2014 9:46 am
by ChicagoGranny
I am all for the tonsillectomy.
But,
I know it will not get me off of the Auto SV but my hope is to reduce the pressure some more.
UP3 for some people has resulted in increased difficulty using CPAP.
I tell you what scares the hell out of me in your case with the UP3. I see no indication that you understand exactly what machine you have, what the settings are and there is no indication you have educated yourself fully on the CPAP process and optimized your CPAP therapy.
I would strongly recommend against all UP3s where the patient has not done all of the above. After a thorough CPAP optimization process, you might find you have great energy and don't need the UP3.
You claim your doctor said,
She told me there were no guarantees, that it would be very very painful but it was my call. She said she sees many adults every year and only does about 5 surgeries because she said it doesn't feel right putting someone through that "torture" if there was zero benefit.
Your doctor is telling you not to have the UP3!!!!
Listen to her!
Do a CPAP optimization process. There are good members here who will help you.
ChicagoGramps
Re: Tonsillectomy and UP3 surgery
Posted: Thu Aug 07, 2014 9:51 am
by Sir NoddinOff
Coolsideofthepillow wrote:If I could get to a dental appliance I would be over the moon.
Dental appliances have their own issues, such as general discomfort, mouth sores, forcing teeth out of position, dry mouth and so forth. By the sound of the testimony above this type of surgery seems like a not much bang for the buck if it's solely meant to reduce OSA (plus it can be very painful). You're lucky you checked in and asked the questions you did... you got a decent response from many members.
Re: Tonsillectomy and UP3 surgery
Posted: Thu Aug 07, 2014 9:52 am
by ChicagoGranny
If you are going to use swear words, you will have to get your own ID.
I thought you were driving to Rockford this morning?
Re: Tonsillectomy and UP3 surgery
Posted: Thu Aug 07, 2014 10:05 am
by Coolsideofthepillow
Chicago I appreciate all of your input.
My initial study had 319 respiratory events with OAI of 91.4, CAI of 2.6, and HI of 38.1 for a total of 132.1. This was in 209 minutes of sleep.
I was prescribed a Resmed AutoSv. The pressure was set to 30/10. I wore it off and on for 3 years or so. I have tried 5-10 different masks, different pillows, etc.
When I went. To see the ENT I had to go back for an updated sleep study for insurance approval. When I went in for the results I brought my machine. The doctor and Nurse said my machine was set way to high, so they lowered it to 12/7 I believe. I need to check tonight. The thing is it's the same office that prescribed the 30/10 the first time. My feeling is that during the initial sleep study the tech ran out of time so he cranked it to max pressure. The 12/7 is better. I am not looking for an Apnea cure. I am looking for different benefits such as a larger airway so I can inhale better when awake, not being a strep carrier, reduced sore throats. While she was in there since the uvula gets so enlarged she was going to do the UPPP also.
Re: Tonsillectomy and UP3 surgery
Posted: Thu Aug 07, 2014 10:08 am
by Coolsideofthepillow
After the second study the nurse even mentioned I did not need the autosv and could have used a bipap instead. So I was able to spend 3-4k out of pocket instead of 1k.
I was really happy when I heard that.
Re: Tonsillectomy and UP3 surgery
Posted: Thu Aug 07, 2014 10:31 am
by ChicagoGranny
so they lowered it to 12/7 I believe. I need to check tonight.
Another indication that you are not fully educated and definitely not personally in control of your CPAP therapy.
You really need to get a support group (
viewtopic.php?f=1&t=48844&start=0), get educated and take
full control of your CPAP therapy before taking a huge gamble on UP3.
Get on the SmartSideofthePillow.
It's now up to you. Bye.
Re: Tonsillectomy and UP3 surgery
Posted: Thu Aug 07, 2014 10:51 am
by Julie
If you're not breathing well, see a pulmonologist, regardless of your belief that your uvula is causing all the trouble.
And two little kids will pass around tonsillitis to anyone within shouting distance... but that will pass, but if you have the surgery, and find it doesn't help and does cause you lots of grief, you won't be able to Undo it!
Re: Tonsillectomy and UP3 surgery
Posted: Thu Aug 07, 2014 11:10 am
by Coolsideofthepillow
Explain what you mean by grief? I read where some people have issues with food and drink coming out of their noses.
Re: Tonsillectomy and UP3 surgery
Posted: Thu Aug 07, 2014 11:58 am
by palerider
Coolsideofthepillow wrote:Explain what you mean by grief? I read where some people have issues with food and drink coming out of their noses.
that's happened to me, but only when someone cracks a
particularly good joke at just the
right time. (or, wrong, depending on your view...
back in college, we'd congregate at denny's after leaving the bars and practice our comedic timing, to deliver the punchline just as someone took a big swig of drink or a big mouthful of food, extra points for nose expression.
this probably will make some of you go "aha" about my sense of humor
Re: Tonsillectomy and UP3 surgery
Posted: Thu Aug 07, 2014 12:00 pm
by Coolsideofthepillow
As to the failure rates I have not been able to find any recent studies. Has anyone found anything done the past few years?
Re: Tonsillectomy and UP3 surgery
Posted: Thu Aug 07, 2014 12:13 pm
by Julie
"Grief" - 1) the surgery does not do what you expect. 2) the surgery makes it harder in future to use Cpap if needed. 3) Lots of pain for weeks post-surgery.
And you may not find lots of studies (yet) on the subject because surgeons are not going to be in a hurry to say their work didn't work.
I don't understand where you're coming from ... your own doctor has advised against doing this, as have many people on here (do a forum search on UPPP and you may get more answers than you expected!). Surgery should always be the LAST resort when it comes to fixing problems, and I spent my entire working life in teaching hospitals so I'm not just blowing steam.