New York City Surgeon Ties Tongues, Transforms Lives

roster · Post by **roster** » Thu Oct 04, 2007 6:29 pm

http://www.emediawire.com/releases/2007 ... 558190.htm

Anybody read this whole article (from Streaming CPAP and ....News)?

Guest · Post by **Guest** » Thu Oct 04, 2007 7:00 pm

Yeah, this is kinda the second time around for this surgery. I think the "cure" rates are comparable to the up3 surgery ('bout 45-50% last I read). It's not really a new technique.

Sleepdeprived · Post by **Sleepdeprived** » Fri Oct 05, 2007 2:57 pm

[quote="rooster"]http://www.emediawire.com/releases/2007 ... 558190.htm

Anybody read this whole article (from Streaming CPAP and ....News)?

j.a.taylor · Post by **j.a.taylor** » Fri Oct 05, 2007 3:18 pm

I've had enough trouble with my tongue over the years,

Did it all on my own, with the help of my apnea.

CPAPs helping.

I think I'll let the Doc tie someone else's.

mckooi · Post by **mckooi** » Fri Oct 05, 2007 3:41 pm

Ye Another invasive surgery?

Moby · Post by **Moby** » Fri Oct 05, 2007 4:05 pm

Tongue tied New Yorkers? Impossible

lilsheba · Post by **lilsheba** » Fri Oct 05, 2007 11:40 pm

Ok call me ignorant but how the hell does that work? Being tounge-tied? I don't get it.

socknitster · Post by **socknitster** » Sat Oct 06, 2007 9:30 am

http://clinicaltrials.gov/ct/show/NCT00 ... E?order=10

This is a similar study ongoing in Indianapolis.

Since I'm pretty sure that my small mouth/large tongue are to blame for my apnea, now that my tonsils are out of the way, this is something I might look into in the future. Currenlty, my ent says these surgeries are not very successful. It is an old idea, he says, and has a high rate of failure due to the stuff breaking loose. That said, he seems to want to do UPPP still, so he is a bit old-fashioned and conservative.

It would be interesting to get a consultation with one of the doctors that routinely performs these types of operations. It seems to me like they are trying to improve upon the older technique and make it a viable alternative. Sounds minimally invasive and reversible which are among MY criteria for any further surgery in this realm.

I think these surgeries are ones to watch.

Jen

roster · Post by **roster** » Sat Oct 06, 2007 7:35 pm

Thanks socknitser. Sounds like it could be wonderful for some patients.

StillAnotherGuest · Post by **StillAnotherGuest** » Sat Oct 06, 2007 7:55 pm

The Aspire Medical version is adjustable:

Snoredog · Post by **Snoredog** » Sat Oct 06, 2007 11:50 pm

lilsheba wrote:Ok call me ignorant but how the hell does that work? Being tounge-tied? I don't get it.

I'll take a stab at it, if you observe where the genioglossal muscle (tongue) is attached, you'll see it is attached to the bone on the back side of the chin (inside of the mouth).

When you fall asleep and relax into REM sleep for example, you lose all muscle control even a partial loss to the tongue. When that happens and you are sleeping on your back the tongue muscle relaxes into the big hole at the back of the throat, when it does it blocks off your airway and you have an apnea. But usually before that happens you may have snoring and other weird noises. If the tongue is NOT completely blocking your airway only partially, you may have a flow limitation or hypopnea depending on how long it lasts and the degree of occlusion.

Now to keep your tongue from falling into the back of the throat, you can use:

-CPAP pressure and physically push it up and out of the way, or
-Use a Dental Device like a TAP which physically moves your lower jawbone forward thereby increasing the distance at the back of the throat, or
-Have a surgery procedure called a Genioglossal Advancement (GA) where they cut the bone on your chin around where the tongue muscle is attached and pull it forward, rotate it 90 degrees and put a few screws to hold it back in place while the bone heals itself. When healed, it pulls your tongue forward.

Here is an example of the GA:
http://sleepsurgery.ucsf.edu/body.asp?b ... nioglossus

This new procedure does things a bit differently, instead of going through a GA procedure taking weeks/months to heal and get feeling back to the tongue this procedure is supposedly less invasive and it is reversable. It works by preventing the tongue from fully extending when it is in that relaxed state like in REM (remember you cannot consciously control that during sleep).

The tongue tether works by attaching the tether at the bottom of the chin bone with a screw, on the other end it resembles a barbed fishing hook. They can adjust the length of the tether with a special tool, the shorter the tether the farther your airway is opened at the back. Since the tongue cannot fall into the back of the throat your apnea is eliminated or greatly reduced.

Right now they are doing trials and first study, only place I'm aware they are doing that is in Chicago area. The company that makes the device is out of the SF bay area in Calif, I applied for the study and was initially selected but traveling to Chicago every few weeks was a bit prohibitive. I have a friend who is a Maxillofacial Surgeon, I'll probably have him perform it once it is proven and approved by FDA.

I think it is the most promising procedure to come along in years.

Of course the medical establishment doesn't want you to know exactly what the root cause of the OSA blockage is, they prefer to use broad terms like the airway collapses (and we don't know why) to make you think it is some mystery disease as there is way too much money to be made from it to come up with a simple solution like a tongue tether.

You remember that carburetor years ago that supposedly got your car up to 100 miles per gallon, the patent and rights to produce it got bought up by the oil companies and it faded from public. Same thing can happen to this tongue tether if it is found effective, Respironics or Resmed may buy Aspire out and we may see it fade from the public and be stuck with these machines for the rest of our days.

If you look at UPPP surgery, it so often fails because they only make a bigger hole for your tongue to land into, it does nothing to pull your tongue forward. Look at Socknitster, she recently had her tonsils removed and it lowered her AHI about half (at last report I seen), it didn't cure her but it helped, why did that lower her AHI?

Most likely it takes a lot more tongue falling into the back of her throat to completely occlude her airway. If she can have that done and lower her pressure and/or drop her AHI by half, I would say that surgery was successful and most ENT's would consider it that also. It didn't cure her OSA but she knew that going in, but it did improve the situation where she can possibly use a lower pressure which should improve her tolerance and compliance.
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split_city · Post by **split_city** » Sun Oct 07, 2007 6:19 am

So what should we do to the tongue in patients where they have sleep apnea events when sleeping in the lateral or even the prone position?

lilsheba · Post by **lilsheba** » Sun Oct 07, 2007 8:04 am

(shudder)....thanks for the explanation Snoredog you've just convinced me I never want anything like that done to me ever.

The only surgery I've had is the sinus one and I'm not repeating that experience again either. I'd rather stick with the CPAP thanks!

socknitster · Post by **socknitster** » Sun Oct 07, 2007 10:08 am

Yes, my situation is interesting. I've been told by an oral surgeon that I have a receded lower jaw (lower only, upper is normal) resulting in a small mouth. Coupled with a very large tongue, this makes for a problematic situation. The tonsils were so big they touched during allergy season giving me a gagging sensation. I am guessing (but will never have any way of knowing) that when my tongue put pressure on them during sleep they themselves were fully capable of sealing up my airway.

I seem to have a lot of choices in the future, but won't do anything until a year has passes from the tonsilectomy so that the surrounding tissue will be completely normal.

MMA/GA Combine the complicated tongue surgery Snoredog described with them BREAKING YOUR JAW and moving the lower jaw forward. This would be at least a two year process. First a year of braces to get my teeth in a normal position (they look straight enough but they are apparently at odd angles) then the surgery which takes MONTHS to recover from. Then another year of braces. They seem convinced this would be a cure for me. I'm 35. From that perspective it sounds appealing, but I am not willing to do something this invasive. I can't take such risks with small children and I can't burden my family with my care for such a long post-op period. I also won't consider GA on its own.

TAP. I now have one but my initial reaction is: I'm not impressed. Maybe with time I will grow to love it. I haven't even tried sleeping with it yet. Right now I am just practicing wearing it and taking it out a few minutes a day. It gives me a bit of a "trapped" feeling when it is in place. I am not sure I will ever have success with it. However, when you are willing to try everything available, you can't expect everything to work for you. Other individuals may be far better candidates for this oral appliance than I am. This is just my initial reaction. I've had it less than a week. In 3 months I might discover it cures me, who knows?

Tongue Tether. THis is what I may ultimately do. I saw a guy interviewed on local tv who had it done here in Indiana. His recovery time was almost zero and he has no trouble talking or chewing right off the bat. That, and the possiblitly of reversal in case of failure, sound VERY APPEALLING to me. I will probably have it done in Indianapolis where the Aspire trial is taking place. Right now it is in trials and the only criteria that I don't fit for the trial is failure at cpap. I may have to wait a few years for FDA approval to get that done. It would be nice to get the surgery done by the experts for free, though.

My son Harry goes in to have his tonsils out tomorrow. He is 4. His tonsils are even bigger than mine were. I'm anxious about it, but also very hopeful. I am hopeful that if he starts sleeping better (apnea has been the confirmed diagnosis) that his ADDHD like symptoms will evaporate. I have heard that a lot of ADD is caused by sleep disorders in kids and adults.

So, tongue tether, I get why you are grossed out by it Lilsheba, but what is it you object to, exactly? It sounds like the most minimally invasive, quickest recovery time surgery that can be done for apnea. Assuming that it is the tongue causing the problem. I suspect the causes are more complicated than that for some, but for those where the tongue is suspect, I think it is a no-brainer. I hope the trials bear that out.

jen

lilsheba · Post by **lilsheba** » Sun Oct 07, 2007 10:18 am

I don't know exactly it's mainly the thought of my tongue being moved around and tied down just wigs me out. It doesn't help that I have had jaw surgery in the past, back in the mid 1980's. I had both upper and lower jaw moved around and literally wired shut in place for weeks at a time.

I think the main thing is I'm tired of having surgery on my face or in my face. Plus some things just weird me out for no good reason at all

New York City Surgeon Ties Tongues, Transforms Lives

New York City Surgeon Ties Tongues, Transforms Lives

Re: New York City Surgeon Ties Tongues, Transforms Lives

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