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Bone missing
#1
I have had 11 hours of micro sinus surgery, 'Agent Orange' in the military. I have bone missing between the sinus and the brain. They cannot replace the bone.

As I understand this problem: Bone missing exposing the Dura to the sinus. Not good but. Pressurized air flow would just force any germ into the brain causing death.

So using NO cpap is safer ,in the above statement, than the danger posed by using cpap. Even if I have severe sleep apnea, I am still better off not using cpap.

Thanks for any help.
woodturner550
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#2
Bone or cartilage?
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#3
G'day woodturner550, welcome to Apnea Board.

It sounds like you've really been through the mill. Sad I'm not sure how we can help you - your condition sounds like it's well outside the scope of a self-help apnea group. What you're describing is a specialist area and you have no doubt received advice from your surgeons or MDs.

If we can advise in general terms about apnea or CPAP treatment, please let us know.

DeepBreathing
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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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#4
Quote:Pressurized air flow would just force any germ into the brain causing death.

Is this what your doctor has advised your or is this what you are assuming?

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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
Yea its bone. They removed THREE pounds of bad material.



Thanks
woodturner550
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#6
woodturner,

You still did not answer PaulaO2's question:
(11-13-2016, 11:10 AM)PaulaO2 Wrote:
Quote:Pressurized air flow would just force any germ into the brain causing death.

Is this what your doctor has advised your or is this what you are assuming?

If your doc has told you that you are better off without CPAP because of this issue, then it is reasonable to follow your doctor's advice.

If you are just assuming that this is true, then the best thing for you to do is to bring this issue up with your doctor and find out what he says.

And if CPAP really is out of the question because your doctor says it is out of the question, then it is reasonable to ask your doc about alternative treatments for your severe OSA. Perhaps an oral appliance would do some good. Perhaps additional surgery would do some good. Perhaps doing nothing is the best thing. Or perhaps your severe OSA is serious enough to do a trach. We can't possibly tell you what the best thing to do is: Only your doctor can advise you of what your options are and what s/he thinks your best bet at dealing with the problem is.
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#7
This is bad enough that I had to move from Texas to Oregon Coast (on the coast) for the cool salt air. In Texas I was always on the verg of an infection, many many bleeding problems.

Yes this advise in by my doctors. One thing I have learned is to become informed. I'm in a position that either way can be harmful. I don't get any rem sleep, always tired vs get sleep but risk death caused by infection.

I have been on the coast two years and I have not had a noose bleed or infection in two years. This may be the very best I can achieve

Thanks for your thoughts and advise.
woodturner550
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#8
(11-13-2016, 05:29 PM)woodturner550 Wrote: Yes this advise in by my doctors. One thing I have learned is to become informed. I'm in a position that either way can be harmful. I don't get any rem sleep, always tired vs get sleep but risk death caused by infection.
Have any of your doctors suggested an oral appliance? That would most likely not pose the same kind of risk and it might provide you with some partial relief from the OSA.

If the OSA is severe enough where sleep tests show that you cannot get into REM sleep, then you may need to talk to the docs about whether the problem is severe enough to warrant considering a trach if an oral appliance does nothing to help.

Here's the thing: If your sleep is as bad as you say it is, then the lack of sleep may in the long run compromise your immune system and that will put you at risk for infections.

Quote:I have been on the coast two years and I have not had a noose bleed or infection in two years. This may be the very best I can achieve

Thanks for your thoughts and advise.
A question for you: What do you want from this forum? This forum is primarily a self-help forum for CPAP users, but as you say, CPAP is contraindicated in your particular case.

There are a few other treatments for OSA, but they are usually not as successful at treating the condition as CPAP. However, some of those other treatments may not be contraindicated in your case, and some treatment may be better than no treatment.

My advice is to ask your medical team whether using an oral appliance designed for the treatment of OSA is worth looking into. It probably won't eliminate your OSA, but even if it cut your untreated AHI by 25-50%, that may be enough to let your body get into REM sleep at least occasionally and it may be enough where some of your daytime fatigue is lessened.

If your diagnostic sleep test showed that your OSA is worse on your back, then doing what you can to avoid back sleeping may make at least a marginal difference. Likewise if you are overweight, losing the excess weight may help. If you are NOT overweight, work hard to make sure that you do NOT gain weight since extra weight will make your OSA worse. (For what it's worth, I'm a 5'1" woman who weighs 110 lbs and I've never been overweight in my life, but I have moderate OSA.)

It may also be worth asking your medical team whether surgery might help in your case. And if they think that surgery is a possibility, then start asking a lot of questions about exactly what kind of surgery they would recommend and what a desirable outcome for the surgery would be.
Questions about SleepyHead?
See my Guide to SleepyHead
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#9
I have gained, knowledge, source of information etc. Sometimes it is good to talk to people that don't put you in as much time pressure with tech. There time is money. Also getting other ideas about what to talk to the doctors about. I like to be informed so I can help with my care in a positive way.

About the trac. As I still have some mobility and I have dealt with this for at least three years, looking at quality of life, I know it may have to go that way at some point.

I sleep on my side......trained not to be on back.......hard to do, now workable.

Thanks again for your help and thoughts.
woodturner550
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#10
Some ideas to discuss with expert reconstructive surgeons:
Could the use sterile bone to graft into that area? Or take some from the pelvis to graft in? (Some bone from my pelvis was used to stabilize spinal surgery.)
Could they use a tissue stretching procedure to create some tissue which could be grafted into the area? Maybe use a segment of oral mucosa, tissue expansion, and then graft?
                                                                                                                                                                                  
Please organize your SleeyHead screenshots like this.
I'm an epidemiologist, not a medical provider. 
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