UPPP surgery

termides · Post by **termides** » Thu Dec 24, 2009 2:54 pm

I originally went to my doctor because I was having trouble walking my dog because of balance problems experienced because my ears seemed to be plugged. After every conceivable test he could devise he said I had sleep apnea. OK, then to the sleep study, then cpap, then mask change, then headstrap, then another then another mask then back to the doc, then UPPP surgery. That was the most miserable experience of my life and I am a Viet Nam Vet. I really have never hated anyone as much as I hate him. Now I can't use a cpap because he also did an operation for a deviated septum. Now the mucus floods like crazy. The cpap forces it down my throat and chokes the crap out of my. I just thought I had problems until I met this doctor. Sleep is now impossible and I am certain death will be soon. This has gone on for a couple of years so I am not in panic mode. I asked the doctor "what is next" and he said transciotomy. I said I wouldn't want that and he replied "who the hell would". I pray every day that God will keep me from doing the same serious harm he has done to me. I am desparate and also know it is too late for me.

Wulfman · Post by **Wulfman** » Thu Dec 24, 2009 3:08 pm

Welcome to the forum.

Sorry to hear you had the UPPP surgery. Doctors who push that procedure should be hung by their.....um......"ornaments" on a tall Christmas tree.

I haven't had it, but my sleep doctor made some remarks that made me to think that that's what he was referring to.
On the other hand, there are several forum members who HAVE had it and are using their machines.
They may be able to give you some advice, so that's one reason I'm bumping up your post.......but welcoming you to the forum, in any case.

If you go up to the Search function and put in "UPPP" or any of the other procedures you've had, you'll find lots of posts.

Den

roster · Post by **roster** » Thu Dec 24, 2009 4:17 pm

termides wrote: I am desparate and also know it is too late for me.

Dr. Mack Jones went through much of what you have gone through. According to his own words, “ …. four years of failed PAP machines, and unsuccessful surgeries including a UPPP, hyoid myotomy, and two rhinoplasties.”

Then he underwent a permanent skin-lined tracheostomy and today is living a good and healthy life.

You can read more about Dr. Jones at:
http://www.sleepguide.com/profiles/blog ... vere-sleep

There is additional information about trachs for obstructive sleep apnea at:
http://www.sleepnet.com/noncpap/messages/885.html
http://www.trachs.com/cart/xcart/customer/home.php

Be careful about some of the information on the web. Much of it is outdated and some of the photos are repulsive. Surgical procedures and trach tubes and accessories have improved greatly in recent years.

I suggest you look into a permanent skin-lined tracheostomy and consult with a doctor who does at least two or three per month for apnea patients.

My prayers for you.

bearded_two · Post by **bearded_two** » Thu Dec 24, 2009 4:55 pm

I have an excuse for not knowing better than to get a UPPP: The internet didn't really exist at the time I got mine and I was going strictly by what my sleep doctor was telling me. Now-a-days, there is no excuse for not knowing that UPPP is useless at best, and that there are many things that do go wrong. Even when things don't go wrong, any improvement goes away within five years. I have had what is now called an MMA and a UPPP -- and I am still on CPAP. I have problems with choking on food, especially when eating small things like peas, corn, or rice.

jnkphone · Post by **jnkphone** » Thu Dec 24, 2009 7:25 pm

Please let this forum help you find a way to make CPAP work for you.

UP3 can make using an auto difficult, but I have yet to hear of UP3 stopping someone from making a success of CPAP if they are determined. And you sound determined to get better; after all you posted here.

I suggest not dwelling on the past surgery. I know, yep, easy for ME to say. But resentment against the doc can eat you up inside--it just isn't productive. Channel that energy into letting the people of this forum help you find a way to make CPAP work, despite, and in conjunction with, the UP3.

I use a dental device to keep my jaw closed when using nasal pillows and a sports-style headband to keep my lips shut. Not a standard setup, but it works for me.

Make a list of the problems that the people here can help you solve.

jeff (jnk)

bearded_two · Post by **bearded_two** » Thu Dec 24, 2009 7:49 pm

I have heard of cases where failed UPPP has increased the required pressure to above 20 cmh2o, which makes things much more difficult because standard CPAPs won't provide enough pressure.

I feel that it is irresponsible for surgeons to even suggest UPPP for people with an AHI over about 10. There are close to even odds that UPPP for a patient with an AHI of 10 will allow the patient to get off of CPAP, at least for a few years.

termides · Post by **termides** » Fri Dec 25, 2009 6:49 am

Reply with quoteRe: UPPP surgery
by jnkphone on Thu Dec 24, 2009 8:25 pm

I use a dental device to keep my jaw closed when using nasal pillows and a sports-style headband to keep my lips shut. Not a standard setup, but it works for me.

I also have a dental device. I have also had a previous jaw fracture. Every headstrap I have used and especially the dental device cause TMJ. I have been unable to get more then a straw in my mouth for two days. I currently have 3 mask. Pillow which is comfortable, nasal which is worse and the new Quattro full face that is truly miserable to wear. It also scares my dog to death if he comes in the room and I have it on. He thinks I am Hannibal Lector. I have the best success with the pillow mask no headstrap and sports tape over my mouth. Regardless the mucous flows down my throat choking me constantly. As soon as I put the mask on my ears plug and I can barely walk when I get up. I must hold on to something for balance until it clears up. That is why I went to the doctor originally because I thought I had and infection in my eustacion tube. I appreciate the advice to bear no animosity toward my surgeon. I am not a hater I was not informed of the lack of success and consequences. Like other postings I can't eat cereal, toast, crackers or anything small. It goes right up my nose and chokes me. Any advice is appreciated.

jnk · Post by **jnk** » Fri Dec 25, 2009 7:06 am

termides wrote:Reply with quoteRe: UPPP surgery
by jnkphone on Thu Dec 24, 2009 8:25 pm

I use a dental device to keep my jaw closed when using nasal pillows and a sports-style headband to keep my lips shut. Not a standard setup, but it works for me.

I also have a dental device. I have also had a previous jaw fracture. Every headstrap I have used and especially the dental device cause TMJ. I have been unable to get more then a straw in my mouth for two days. I currently have 3 mask. Pillow which is comfortable, nasal which is worse and the new Quattro full face that is truly miserable to wear. It also scares my dog to death if he comes in the room and I have it on. He thinks I am Hannibal Lector. I have the best success with the pillow mask no headstrap and sports tape over my mouth. Regardless the mucous flows down my throat choking me constantly. As soon as I put the mask on my ears plug and I can barely walk when I get up. I must hold on to something for balance until it clears up. That is why I went to the doctor originally because I thought I had and infection in my eustacion tube. I appreciate the advice to bear no animosity toward my surgeon. I am not a hater I was not informed of the lack of success and consequences. Like other postings I can't eat cereal, toast, crackers or anything small. It goes right up my nose and chokes me. Any advice is appreciated.

Do you do nasal irrigation every night about an hour before bed?

http://www.neilmed.com/usa/sinusrinse_video.php

It may be that more of the salt solution would need to come out of the mouth in your case, but is that something you have tried?

termides · Post by **termides** » Fri Dec 25, 2009 8:34 am

I do that with what the sleep doctor recommended that is a saline solution.

Gerryk · Post by **Gerryk** » Fri Dec 25, 2009 8:38 am

Hello, I would like to point out that it is not the surgery that failed, it was the doctor that did it if you want to call him a doctor. I had a UPPP and tonsilectomy last spring and my life is better than it has been since I was a child. Get away from that quack, don't walk run as fast as you can!
Then find an ENT that specialized in OSA and pray they can help you.

I had what I and many would consider one of the best ENT's in the country that specializes in osa. Dr. Park is up there above my Dr. in ranking. They are out there just find one.

I have heard so many nightmares about people having this surgery and it making things worst. Well, I know two other people who went to the same doc and were basically cured of OSA.

Where are you from?

Good luck

Gerry

termides · Post by **termides** » Fri Dec 25, 2009 9:05 am

I live in Charlotte, NC. I went to the Charlotte ENT. I checked my doctors credentials and he appeared to be sound. He trained at the Mayo Clinic. I read his reviews and they sounded good. As someone here posted I should have done more research on the internet. I assumed he was doing what was best for me and maybe he thought so too. I would like to know where to go from here. I there some corrective operation?

jnk · Post by **jnk** » Fri Dec 25, 2009 9:48 am

termides wrote: I do that with what the sleep doctor recommended that is a saline solution.

If you do that in the evening, does that help the mucus thing at all, or no?

termides wrote:I also have a dental device. I have also had a previous jaw fracture. Every headstrap I have used and especially the dental device cause TMJ.

Is there any chance the dental device can be adjusted for less forward thrust of the jaw to find a position that does not create TMJ issues for you?

termides wrote: I assumed he was doing what was best for me and maybe he thought so too.

Well said. That sounds like a good way to look at it. It solved some problems and caused others. Knowing what you know now, you wouldn't do it. But it is not your fault that you had to make a decision based on partial knowledge. Most decisions are like that. You didn't know what you needed to know and that happens. You are where you are, and the point is to work from here forward. My primary doc pushed me to get the same thing done because of HIS partial knowledge. If it hadn't been for my sleep doc's discouraging the procedure, I would very likely have had the same procedure done. And you have done a great service for many others by posting your experience. I thank you sincerely for that.

Was anything done with the tongue when the UPPP was done? As Gerry said, getting up with a particularly experienced ENT with a particularly good reputation who doesn't mind getting involved with another doc's surgical procedure and who has experience helping surgical patients make CPAP work may be an option to consider, even if it meant some travel.

jeff

termides · Post by **termides** » Sat Dec 26, 2009 9:05 am

I still have the ongoing problem with the eustacion tube being plugged. The doctor told me to periodically pinch my nose and blow gently to clear it. When I do and I do it often, it as if air is escaping from my ear and there is a kind of hissing noise. I had a shotgun go off so close to my face it blew the bill off of my cap. I was deaf for a couple of hours. I had him check to see if there was a hole in my eardurm, but he said there was not. I just came back from walking my dog where I stumbled around the neighborhood clutching everything in sight for balance. That was the original reason for going to the ENT. I knew I had sleep apnea, but it did not bother me that much. After this surgery all problems have increased. When I use the saline I tilt my head back and lean to one side and then the other. As instructed I pinch my nose and blow. The saline feels as if it goes into my eardrum and it burns. The dental device I have is fixed and molded to my lower teeth. I appreciate all you people taking the time to assist me. And in answer to question during surgery he said he shortened my tongue.

Gerryk · Post by **Gerryk** » Sat Dec 26, 2009 9:26 am

Termides, You really do need to find a different ENT. There are many out there so why keep going to the one that has made things worst for you? Their is not guarantee, but the right doc could make things better for you, but only if you go see them.

Gerry