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Newbie. Surgery/CPAP questions
#1
Newbie. Surgery/CPAP questions
Is there anyone who has done the TORS surgery here? My doctor was pushing for it. It's relatively new and I can barely find any info on it(recovery stories, testimonials etc) online.

I’m new to all this and I’m currently waiting my sleep test results. 

However in my country. Malaysia, insurance doesn’t cover sleep apnea disorders. Which is part of the reason my doctor said it’s better to do the TORS surgery as it can fall under tonsil surgery which is covered. So I’m not sure if it’s just a sales pitch because he wants to do surgeries or whether i fork out my own money to go The CPAP route is a better idea
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#2
RE: Newbie. Surgery/CPAP questions
Welcome to the forum,

I'm in a vacuum from a data point of view. I know nothing about your apnea so all I can really say is that CPAP is the gold standard for Sleep Apnea treatment.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Newbie. Surgery/CPAP questions
Thank you for your reply. 
Can I just give you my observations. 

Awaiting sleep test results for proper data. 


[font=.SF UI Text][font=.SFUIText]While drifting off to sleep, I’ll suddenly become aware that I’m not breathing. It doesn’t feel like I’m obstructed but it feels like my body/brain didn’t put in any effort. This issue has kept me up until dawn twice in the last 5 days as it keeps happening over and over again while drifting off. Anxiety levels are rising.  Brain doesn’t trust body to sleep or vice versa [/font][/font]

[font=.SF UI Text][font=.SFUIText]Also leg twitching and cramps a lot more now. Jittery from the anxiety maybe.[/font][/font]
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#4
RE: Newbie. Surgery/CPAP questions
TransOral Robotic Surgery (TORS) is mostly used here in the U.S. for cancer treatments. I could not find studies or articles related to its use in treating obstructive sleep apnea. I have been on this site for a long time and have the highest post count of any member and have never heard of TORS being used for this purpose. That would give me pause to consider someone is more anxious to use an unproven method ahead of an inexpensive and proven effective approach to resolve obstructive apnea involving CPAP. I would guess you are involved with a specialist that likes to use his cutting edge knowledge and techniques to solve problems that have a simpler solution. Ear-Nose-Throat (ENT) otherwise known as Otolayangologists often see sleep apnea as being a condition that falls within their surgical expertise, even though simpler, less invasive treatments exist. Please consider this recommendation with as much skepticism as you can summon, and consider getting a second opinion as well as proof that the proposed procedure is applicable to the problem at hand. Most likely, you will respond positively to simple CPAP, assuming you would prefer to avoid an experimental extension of a cancer surgery. The use of TORS for obstructive Sleep Apnea is being researched and used by Penn Medicine. I don't see any commercial content in this article so I'll risk a link: https://www.pennmedicine.org/for-health-...l-briefing
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: Newbie. Surgery/CPAP questions
WMuch appreciated reply. 

From what I can gather online. TORS for OSA has been around since 2013. Gradually moving around the world. Seen articles in from institutes in Texas, Italy, India

To be frank. It’s quite a lousy situation to be in. 
Malaysia insurance doesn’t cover sleep apnea disorders so everything from sleep testing to CPAP will be out of pocket. 

The fear is I won’t have full medical support for the machine and whether it’ll work for me in the first place. Changing mask, CPAP, BiPAP etc 
The TORS surgery is covered under tonsils surgery. So in light of this. I’ve been trying to verify if TORS is a safe option or just an ENT’s agenda. 

Searching the forums. There’s two post before me that has brought up the surgery as an option but no actual participants within the forum.
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#6
RE: Newbie. Surgery/CPAP questions
Try this, Find someone with a ResMed AutoSet or a Phillips Respironics auto CPAP and borrow it for a night, run it wide open, pressure 4-20 and post the results for that night. We will be able to tell if you have serious sleep apnea. What we cannot tell is if you do not have sleep apnea. The best we can do there is say that you are well treated at minimum pressures.

The weak spot for finding Apnea is very mild apnea, otherwise we often say it is similar to a sleep test every night.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

Download OSCAR
New to Apnea? Helpful tips to ensure success
Mask Primer
Dealing with a DME
Organize Charts
Attaching Charts

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: Newbie. Surgery/CPAP questions
We have had many members that have done conventional UPPP surgery. For a few it eliminate the need for CPAP and for others, it complicated the use of CPAP which was still needed. In no case should surgery be the first option. We can point you to U.S. vendors that will ship overseas for about $100 USD, and the cost of the equipment ends up being pretty reasonable. For example take a look at Supplier #33 and Supplier #2. Both work internationally and offer fair priced new and used equipment with warranties. I'd much rather coach you through the use of something like the Resmed Airsense 10 Autoset and a mask interface. While the surgery may be covered, you won't be able to judge its effectiveness without another sleep study, which will cost as much or more than a machine that will give you data on your therapy every night, and not have the potential complications of surgery.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Optimizing Therapy
Organize your OSCAR Charts
How To Attach Images And Files to your posts
How To Deal With Equipment Supplier
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
RE: Newbie. Surgery/CPAP questions
So they pay for an expensive robotic surgery but not for a regular cheap surgeon. Well it comes down to whether the clinic you're going to have it used TORS for OSA before. If they have a portfolio then I'd say go for it. If I had a choice presented to me when i did my UPPP, regular surgeon vs da vinci robot id take the robot. I'm assuming here that to even operate the bot you need above average qualifications.

So I say GO FOR IT!

but you'll likely still need cpap. My advice get a cpap, get some charts and then do the sugery.
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#9
RE: Newbie. Surgery/CPAP questions
Don't know anything about TORS. But if it's similar to UPPP, you are going to want to ask what a "successful" outcome is and what to expect after a year.

I looked into UPPP about 5-10 years ago and saw that "successful" meant a 50% reduction in AHI numbers. It's possible you would still have OSA afterward, at a lower level, and then still need a CPAP anyway. Also, the chances of regressing to your pre-surgery levels of AHI after 1 yr were nearly 50%.

It's not uncommon to pay for a CPAP out of pocket. I do it, and a lot of other folks do, too. Since you may have to pay for it yourself, get one recommended by one of our resident experts and someone here can help you self-titrate to find your best settings. Supplies, like tubes and masks, can be mail-ordered as needed. I'd figure to budget around $700 USD or more for a good machine, another $150 USD for initial mask, hose, and other supplies, then add shipping. After that, replacement masks are around $50-$100 USD as often as you need it, maybe annually.
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#10
RE: Newbie. Surgery/CPAP questions
(05-14-2019, 05:31 PM)Velacooks Wrote: WMuch appreciated reply. 

From what I can gather online. TORS for OSA has been around since 2013. Gradually moving around the world. Seen articles in from institutes in Texas, Italy, India

To be frank. It’s quite a lousy situation to be in. 
Malaysia insurance doesn’t cover sleep apnea disorders so everything from sleep testing to CPAP will be out of pocket. 

The fear is I won’t have full medical support for the machine and whether it’ll work for me in the first place. Changing mask, CPAP, BiPAP etc 
The TORS surgery is covered under tonsils surgery. So in light of this. I’ve been trying to verify if TORS is a safe option or just an ENT’s agenda. 

Searching the forums. There’s two post before me that has brought up the surgery as an option but no actual participants within the forum.

JUst as a reference point in this dialog about surgery vs xPAP:  Diagnosed with severe OSA in 2012. Couldn't handle cpap. ENT reformed the 'pillars' in the back of the throat and cut the uvula. Then used radio frequency probe to reduce the size of the turbinates in my nostrils and to 'stiffen' the part of the tongue closest to the back of the throat. After recovery, this provided significant reduction in noticeable apnea events (per reports from my wife, a 20 yr Nurse). It worked well until last year when I noticed some awakening events again. Now starting up with APAP, which is a huge (to me) improvement over cpap or bipap.
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