Surgery?

[Juliebove]

My sleep Dr. is driving me nuts! At first he would not come out and say that I had sleep apnea. Kept telling me I *might* have it and if I did have it, it was mild. This in reference to my comments that I didn't think the CPAP was helping me and if anything, it seemed to be making me more sleepy.

So now on my last followup, he started out saying what he had been saying and then said in what seemed like a rather angry tone to me, "Well you DO have sleep apnea!" He then suggested seeing an ENT and muttered something about surgery but that it didn't really work very well and he guessed I might as well stop using the CPAP if it wasn't working.

He did also mention the dental device, adding that he didn't think my insurance would cover it. I won't even consider that because I've tried the things for teeth grinding. They only cause me severe pain and I can't sleep with them in.

I am on the fence. I can't really say for sure one way or the other if the machine is working. If it is, I haven't noticed anything dramatic. And shouldn't the Dr. be the one to judge if it is working or not? I'm confused.

I already have an ENT. Saw her all last winter/spring for a chronic ear infection and then pneumonia and bronchitis. She is the one who found my husband's kidney cancer. I will trust what she says, but I have no clue about surgery.

I have read things here about surgery but didn't really look into it very much because it didn't seem to apply to me and it didn't seem to be effective.

So now I am not using the machine. Am not sleeping well. Keep having horrid nightmares that wake me. Not sure if I should go back to using it or not. Grrr...

[BlackSpinner]

So now I am not using the machine. Am not sleeping well. Keep having horrid nightmares that wake me. Not sure if I should go back to using it or not. Grrr...

Get back on it - those nightmares are probably due to apneas. Even if you don't feel it helps it is at least giving you the oxygen you need to keep your organs going.

See if you can borrow a machine with data capabilities and see what is really happening - fire the doctor and make an appointment with the ENT.

[Juliebove]

So now I am not using the machine. Am not sleeping well. Keep having horrid nightmares that wake me. Not sure if I should go back to using it or not. Grrr...

Get back on it - those nightmares are probably due to apneas. Even if you don't feel it helps it is at least giving you the oxygen you need to keep your organs going.

See if you can borrow a machine with data capabilities and see what is really happening - fire the doctor and make an appointment with the ENT.

My machine has data. I was also having horrid nightmares while *on* the machine. My oxygen was at 97%. Is that bad?

[drubin007]

time to interject my 2 cents here....

I was told I had OSA (following 2 sleep studies). I was not given the results, just told I had a problem. I thought the doctor (ENT) was on crack because I felt fine, did not and still 3 months later do not have the classic symptoms that many osa patients experience...

I faithfully and religiously used my cpap for 2 months and questioned why every night... Finally, when I went to my doc for the follow up, I demanded copies of my studies. There is was in black and white, why I need to be on cpap. my blood oxygen went down to 62% I think without cpap? I had some insane amoint of apenas and hyponeas... on cpap everything was peachy keen. While I am not suffering any ill side effects now, left untreated I would be likely to get type 2 diabetes, stroke, heart attack, etc. Mind you, I am not overweight, stopped smoking just before all this came to light, and it all came out because I had an ear infection and wound up at an ENT office. Casually told him I snore.

The doc told me my choices were cpap or UPPP surgery. I spent a week researching the surgery. Bottom line: < 50% success rate, over time it becomes progressively worse (problems come back), then it becomes harder to use cpap, suppost to be one of the most painful surgeries, liquid and foods come from your nose for months of recovery. It became a no brainer to me. I decided to use cpap and love it.

I was put on the resmed machine, pressure of 9cm. I did not invest in a card reader or software, but faithfully logged my stats from the machine into an excel spreadsheet for 2 months. After 2 months of 100% compliance, all I was able to do was bring the leak rate to 0. With the help of many great people on here I learned all about my machine, and how to tweak it. I increased the pressure a few times, dropped the EPR settings, tried to get the best therapy I could, all the while still feeling exactly the same. When I went to my doctor, I floored him with what I have learned, and told him I think I need an auto machine. With my knowlede and arguement, he agreed without questiona nd I was upgraded.

Sorry if I am a little long winded here, but it is for a good cause. If you have your sleep studies or can get copies of them that will tell you if you need it or not. With the exception of not snoring any longer, I feel the same, but the results from the machine as well as a pulse ox speak volumes.

[jules]

I can't really say for sure one way or the other if the machine is working. If it is, I haven't noticed anything dramatic. And shouldn't the Dr. be the one to judge if it is working or not? I'm confused.

Well its time to start reading all the cases on the forum, learn from their experiences and start working for yourself not trying to defeat yourself isn't it?

I think that there was a great post yesterday you should read.

viewtopic.php?p=392679#p392679

[BlackSpinner]

My oxygen was at 97%

That is an average which is less the it should be and average means that is drops a lot lower then that at times.

You may need to tweak your pressure a bit to get better results.

It is more to prevent future things like strokes and heart conditions that you are doing it. By the time you feel really wrecked by OSA the damage to your organs has been done. Also it creeps up on you - each week you feel just a bit worse but you don't really notice it until you hit the wall.

You have been given the opportunity to not hit that wall - don't waste it.

[Juliebove]

time to interject my 2 cents here....

I was told I had OSA (following 2 sleep studies). I was not given the results, just told I had a problem. I thought the doctor (ENT) was on crack because I felt fine, did not and still 3 months later do not have the classic symptoms that many osa patients experience...

I faithfully and religiously used my cpap for 2 months and questioned why every night... Finally, when I went to my doc for the follow up, I demanded copies of my studies. There is was in black and white, why I need to be on cpap. my blood oxygen went down to 62% I think without cpap? I had some insane amoint of apenas and hyponeas... on cpap everything was peachy keen. While I am not suffering any ill side effects now, left untreated I would be likely to get type 2 diabetes, stroke, heart attack, etc. Mind you, I am not overweight, stopped smoking just before all this came to light, and it all came out because I had an ear infection and wound up at an ENT office. Casually told him I snore.

The doc told me my choices were cpap or UPPP surgery. I spent a week researching the surgery. Bottom line: < 50% success rate, over time it becomes progressively worse (problems come back), then it becomes harder to use cpap, suppost to be one of the most painful surgeries, liquid and foods come from your nose for months of recovery. It became a no brainer to me. I decided to use cpap and love it.

I was put on the resmed machine, pressure of 9cm. I did not invest in a card reader or software, but faithfully logged my stats from the machine into an excel spreadsheet for 2 months. After 2 months of 100% compliance, all I was able to do was bring the leak rate to 0. With the help of many great people on here I learned all about my machine, and how to tweak it. I increased the pressure a few times, dropped the EPR settings, tried to get the best therapy I could, all the while still feeling exactly the same. When I went to my doctor, I floored him with what I have learned, and told him I think I need an auto machine. With my knowlede and arguement, he agreed without questiona nd I was upgraded.

Sorry if I am a little long winded here, but it is for a good cause. If you have your sleep studies or can get copies of them that will tell you if you need it or not. With the exception of not snoring any longer, I feel the same, but the results from the machine as well as a pulse ox speak volumes.

I have a copy of my sleep study, but that doesn't mean much to me.

[Juliebove]

My oxygen was at 97%

That is an average which is less the it should be and average means that is drops a lot lower then that at times.

You may need to tweak your pressure a bit to get better results.

It is more to prevent future things like strokes and heart conditions that you are doing it. By the time you feel really wrecked by OSA the damage to your organs has been done. Also it creeps up on you - each week you feel just a bit worse but you don't really notice it until you hit the wall.

You have been given the opportunity to not hit that wall - don't waste it.

But if it isn't helping, then what's the point? And how would I know if it were helping? I was put on the machine because my memory was shot. Since going on the machine, my memory is worse than ever!

[moonriver0202]

I think you better seek a second opinion because it doesn't help that your having trouble with your doctor. There are indeed treatments for sleep apnea but that's just to prevent it but not totally cure it.
Cosmetic Dentist Fremont Dentist Berkeley

[BlackSpinner]

But if it isn't helping, then what's the point?

Prove it - post your sleep study and the current printouts of your data capable machine.

Why haven't you read up to under stand your sleep study? Why haven't you followed up on the issues?

Just why do you think surgery to open your nose to more air is going to help when the cpap machine which shoves air down your throat doesn't help you?

[Pugsy]

Prove it - post your sleep study and the current printouts of your data capable machine.

Why haven't you read up to under stand your sleep study? Why haven't you followed up on the issues?

I have been wondering the same thing. How many days and hours of use were really accomplished?
This is one time I would like to see some compliance data also.

In the short time I have been here I haven't seen anything but excuses for not using the machine. I haven't seen anything that shows any trying. There is no way anyone can really help if we can't see what is or has been going on.
Geez..... Might be leaking like a sieve. Might be using only 2 hours when used. There is no way to tell.
I really sense that Julie just wants validation for not using the machine. I could be wrong, wouldn't be the first time.
Unfortunately we haven't seen any proof of anything. All we have seen is one excuse after another why "can't" is a major word in her vocabulary.

[Froro]

Julie. I don't want to come across as harsh here but...

You have several threads started over time asking for advice and people have offered many to you, to which you usually reply....I can't, or I won't.

From what I have gleaned through your threads is you don't use your cpap on a regular basis so how can you use intermittant treatment to judge whether it is working or not.

Every one of the suggestions to you for making your home more comfortable (or at least your bedroom) temperature wise were shot down without consideration, the concerns about the phone ringing were shot down.

There comes a time when you need to accept responsibility for your treatment and finding excuses NOT to use it regularly is not the way to do it. Blaming your sleep doctor, and DME for issues out of their control are not the way to do it.

You need to pick the bull up by the horns are accept the situation you find yourself in. If you are honest with yourself, you haven't given cpap a real go yet.

Again, my apologies for sounding harsh but that's just the way I see it.

[SleepNazzi]

Each individual is different and you will mostly find the "DID NOT WORKS" on the internet. People don't really like to give praise, but man do they love to throw stones!

Speaking as a very new member, I was so misinformed when I started out and wish that sites like these existed back then. Surgery is a very radical and invasive solution that is not even guaranteed to work for everyone. I have, what I think, is a high pain tolerance so take what I say with a grain of salt depending on your own. The surgery and hospital stay (2 days 1 night) was among the most painful experiences of my life. However, I not only had a UPPP but also a SP (Septoplasty). So my nose was plugged with gauze, my throat was on fire, I couldn't swallow, and sleep was out of the question. I was praying for a morphine drip, but only got pills... How the hell was I suppose to swallow pills when I couldn't even swallow my own saliva. At one point I was spitting on the hospital floor because it was too painful to swallow. After my two days in hell, I was released and came home. Once at home, I was on ice water, jello, pudding, and baby foods. The pain was much more manageable and swallowing was less of a chore. I did have to convince my brain that swallowing was ok again as it almost refused to let me swallow because of the pain it endured just a day before. After two weeks, I was back to normal (well as normal as I can be).

Fast forward 5 years.... The surgery bought me at most 2 years of non-snoring relief (not sure about apneas, but I'm sure I still had them). I am now a miserable wreck because I refused to use my unit. I am just getting back to using the therapy (3 days actually) and I can tell I am already benefiting from the system.

Should you get surgery? That is a question only you can answer after reading all the facts out there. Regardless of pain, it only bought me 2 more years of snore-less sleep. Would I do it again knowing the outcome? Absolutely not. Just know it is a roll of the dice to whether or not it will be a success. Also, success has many many definitions. What does success mean to you? Will you need 100% eradication of apneas/events in order to consider it a success or will cutting them in 1/2 be good enough?

Take your time, keep using your machine, and make a rational decision for yourself and your current state of health. I hope something I said helps you out, but at least you know one more story of someone that has undergone the knife.

NO SLEEP FOR YOU!

[Pstars]

Julie:

Realize one thing, those that have benefited from surgical intervention don't post here, they move on. If CPAP works for you, great, use it. If not, surgery IS a viable option. If you haven't seen it yet, check out a a new study which fully supports this very issue. Google "Surgery suitable alternative to CPAP for sleep apnea" for the actual study. If CPAP doesn't work for you it's useless. Research Stanford's Sleep Center and their protocol for addressing OSA surgically at the three typical obstruction areas and two stages of surgical intervention they utlilize. Then go see an accredited sleep surgeon/center for their review and suggested plan of action for YOUR particular case. Your particular problem is individualistic to YOU and the course of treatment suitable for YOU is the same.

Reported August 10, 2009
Upper Airway Surgery Effective for Sleep Apnea
(Ivanhoe Newswire) – Anyone who suffers from moderate to severe obstructive sleep apnea (OSA) is probably acquainted with the machinery, the mask and the hoses of continuous positive airway pressure (CPAP) therapy. CPAP can be frustrating and uncomfortable, not just for the patient, but also for anyone attempting to sleep with the patient. One predictable result is short-lived compliance with the treatment.

New research into this debilitating condition offers hope in the form of reconstructive surgery on the upper airway. Researchers report that this surgery holds the same quality-of-life benefits as CPAP, but with more permanence.

The upper airway includes nose and throat (pharyngeal) areas, particularly behind the soft palate and tongue. Reconstructive surgery to treat sleep apnea involves clearing any blockages in those areas that might be hindering breathing.

The Australian authors of the study discovered that among moderate-to-severe OSA sufferers, those treated through upper airway surgery experienced the same level of long-term quality-of-life improvement as their peers who were treated with CPAP therapy. Among the benefits were improvements in snoring, sleepiness, and neurocognitive impairment.

SOURCE: Otolaryngology-Head and Neck Surgery, August 2009

[midnightdweary]

Thanks, that report is posted at the top of the forum in blue.
There is not much to go on. All they said were that they were Austrailian doctors.
Where could I, for example, get that surgery? How much is the cost? etc. etc.....

I can't afford to go to 'roo land.