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robertmarilyn wrote:This new doctor was the first doctor who wanted to see everything...

We had a very intense 90 minute discussion covering all my health issues...she kept a copy of my sleep data from April 29...

She went over the 3 page sleep studies and interpreted them as best she could giving the limited information...she would have liked information concerning my body readings in regards to my position of sleeping and because of my situation she wanted to see data relating to arousals but there was none to see. She discussed data with us, she explained things to us, she carried on a conversation with us. This is the first time a doctor has gone over the sleep study results with us (limited as they were)...

She is also going to do the day study BUT only if I have had an adequate amount of REM sleep during the night...

She has two partners in the clinic and she is going to have them work with her on my case...

She already knows how involved I am in my therapy and trying to understand it and she is taking me on as a patient knowing that I want to continue to be involved and learn what I can about my treatment and options...

she did mention machines that deal with central and complex sleep apnea since there is a chance I might need a more elaborate type of machine. But no doors are closed, everything is open...

Sometimes when things are too good to be true, Mar, they happily end up being true anyway. So far I'm loving everything about this new doctor of yours. As Rested Gal might say in her characteristic wise, enchanting Southern way: "She sounds like a good 'un!"

Very nice turn of events!

-SWS wrote:
Sometimes when things are too good to be true, Mar, they happily end up being true anyway. So far I'm loving everything about this new doctor of yours. As Rested Gal might say in her characteristic wise, enchanting Southern way: "She sounds like a good 'un!"
Very nice turn of events!

Yes I want to encourage everyone on this forum to learn as much as you can about sleep apnea and the machines esp if you are experiencing problems once you are on therapy. Rarely will anyone's therapy start out completely trouble free esp because it takes us a while to deal with the new experience of "rainout", "burping masks", waking up to a plastic hose wrapped around one's neck", and lots of other fun things that one would never have imagined being a part of sleeping before trying XPAP. But someone and usually a lot of someones will have experienced these things and you will find a wide variety of fixes and answers for obstacles you can encounter, right here on this forum.

And, if it turns out you have much more complicated problems, you want to be informed enough to know when you need a doctors help and when you need to change doctors and/or DMEs to get the help you need. My story is far from over and in fact this is close to the beginning of finding out more about the many things I have going on with my body. I'm not going to dwell on it too much right now because I want to focus on FEELING BETTER, but in my case, (this is where I cover my eyes and ears and pretend I didn't say this), I might not ever feel better because of the damage I've already incurred from day one and from my various body abnormalities. But I've found some doctors that are going to continue to help me understand what is going on and what I can do about it.

I would like to urge those who get fed up with XPAP therapy to keep trying to make it work and to not accept suboptimal treatment. Getting the therapy you need now rather than later, can effect your future life for the better...getting the oxygen your body needs is worth the hassle of XPAP even if you have to wade through some medical professionals who aren't helpful. Don't let that stop you.

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Marilyn,

I am so happy to hear the good report! It is certainly something to celebrate when a physician of ANY kind spends 90 minutes with you - and then LOOKS & LISTENS with interest to what YOU have to say and report Surely this is just the beginning of moving upward and onward, at long last, to improved health and well-being!

Hugs,
Joy

Hi Mar,
I answered your post, earlier this morning, but I had a little accident yesterday, and my body & head is all shook-up.
When I replied I wasn't thinking straight, and the post addressed to you is in my file. My post concerned SWS comments, & your opinion about the right machine for each of us. If you have a chance give it a glance,
then post your opinion.

I hope other forum members will share their views about the correct machine tor you and I.

Jan

Hi Mar,

In reply to your post this evening. We have similarities and differences, but since SWS linked our posts, I don't feel like I am all alone in this struggle. Knowing that you have become so knowledgable about your condition and how to help it, has encouraged me not to "just want to give up." It appears, you have pursued answers more than I have. I have had my appointment with the new sleep doctor for about 6 weeks, your posts and the post from DreamDiver awaken me to to prepare for the appointment, and I thank you. (Just writing this, it become clear, I thought my situation was hopeless)

I have read your post carefully, looking for similarities that may help me. I learned that you have small features and body. That may explain the difference in our throats. I am 5 foot 8 inch slender woman. I do not have large features or mouth, but my ENT trimmed my throat, scraped all loose tissue to the bone, and cut the uvula as high as he could. I had what my internist called a reasonable size throat. Now, it is considerably larger than it used to be.

I hope you have another satisfactory night, no, I hope it is a teriffic night.

Jan

Hi Jan,

For so many years I kept hearing that I "didn't fit the profile" for sleep apnea. I bet there are a lot of tall slender women that have sleep apnea...oh, and since I am tall and slender, I don't have a thick neck...I read that often folks with sleep apnea have thick necks. When I started thinking I might have sleep apnea about 20 years ago, the only thing I could find in medical books was that the type who usually had sleep apnea were overweight old 'Santa Claus' types and dogs with smushed snouts, such as bulldogs...in fact, I learned more about obstructive breathing disorder reading about dogs having breathing problems than I could find on humans back then.

Mar, I am so touched by your story, even just by reading this thread. I have had many of the same issues (except for UPPP)... currently I am so deprived of quality sleep that I can't even cope with writing a long post covering the many things I want to share with you.

I too worry about the damage done - but I have heard from so many credible sources that the brain is capable of improvement in function after damage has been done. For example, some of the damage will manifest in decreased levels of certain chemicals and decreased size of certain areas in the brain. Ways to correct these imbalances are being developed all the time. So I just wanted you to know that it's not necessarily permanent. The public needs to know that untreated OSA can lead to permanent damage, that is true... and the therapies are not quick, easy or available for everything, but I do not believe that permanency is not the overwhelming feature of the damage.

The other thing I want to say is that your awake oxygen level of 88-90% is not 'normal'. I appreciate that your pulmonary tests did not show anything abnormal, but that does not mean your levels are ok, it means that the doctors need to look harder. It sounds like your new doctor (bless her) is going to ensure each and every issue is investigated.

I have had a terrible experience with one of the only two sleep doctors in my location. Word on the street is that the other one is no better. So I will be boarding a plane to see my new one, whoever that may be.

If I were you, I wouldn't give a trach one more moment's thought. There are so many machine and pressure options available before that - there is sure to be an xPAP solution that will make you feel the best you can. You are on the right road now.

All the very best
Bluesky

BlueSky72 wrote:- there is sure to be an xPAP solution that will make you feel the best you can. You are on the right road now.

Welcome aboard, BlueSky72! I actually love your inspiring sentiment...

But, the statement itself is not always true. All xPAP options strive to either: 1) inflate or stent soft-tissue portions of the upper airway and/or 2) directly assist with pulmonary ventilation itself---with some xPAP implementations additionally striving to minimize discomfort and/or side effects along the way.

But there are multiple scenarios in physiology or etiology that can render xPAP unfeasible. One of those etiologic scenarios is virtually immovable (narrow diameter based) constant upper airway resistive loading and/or immovable dynamic occlusion (or blockage). Unfortunately, attempts at upper-airway soft-tissue inflation via xPAP cannot always be expected to move various extremely difficult-to-move clearance problems in airway physiology. It sounds as if that was Dr. Mack Jones' case. Very fortunately, that's not the usual case. Whew!!

The good news is that Mar seems to have had great success with her first night using CPAP of 12 cm, while also setting EPR at a pressure drop of 2 cm (that's essentially a BiLevel setting). So Mar, how have the follow-up nights at 12/10 cm worked out? Just as well, I hope.

Thank you for your encouraging words...I'll be carrying your good words and vibes with me throughout all of this. I plan to exhaust my machine options before considering the trach option. The new doctor is concerned about my daytime oxygen levels, has the result of all my tests, and plans to be studying my oxygen levels during both my night and day test. In fact, both my husband and I got the impression that either she or one of the other doctors may actually be present during my night test...there are a lot of things that the doctor wants to study concerning how I do and I think she wants to be able to make changes in the plan, if necessary, during the night. As far as I know, a doctor being present during the sleep study, isn't standard procedure but at this point, because there are so many serious and confusing physical issues to wade through, I think the doctor wants to be very hands on with my sleep and day studies.

When I had my UPPP, there was a neurologist, a cardiologist, pulmonary doctor, an ENT, and sleep specialist (don't remember what other doctors I saw back then...off the top of my head) involved in the days before my operation. I had all kinds of tests including an MRI of my torso up to and including my head. According to the doctors, I should have been a SIDs baby...my mom must have done all the right things to get me through infancy...I discussed this with my mom and she said she always had me sleep on my stomach and when I wasn't sleeping she usually was holding me over her shoulder (I was her first born and she got to be a stay at home mom then so I got a lot of attention)

When the doctors started all the tests on me, the first time a UPPP was mentioned, I was told it was considered a voluntary surgery and that it would be about a three month wait before the surgery, if I needed it. But once the test results were seen, the operation was no longer considered voluntary (of course I could say no though) but necessary. I was told that CPAP wasn't even an option for me. It was in-patient and it was laser surgery. The doctor who did the surgery was very involved in my recovery and I handled the surgery really well. It was an extremely painful and long recovery but within 10 days I could tell that I felt like a new person after sleeping each night. I think because I felt so much better after the surgery, I handled the whole thing better emotionally than most folks.

I wish my body would be a little or a lot more "normal"...I'm no longer surprised when surprising things are found out about my body. But if my body can be so 'special' about having weird things, maybe it can also surprise us by regeneration brain cells faster than most bodies or something neat like that. I figure I must have been born a super duper genius baby and that's how I'm still running with a pretty smart brain now.

-SWS wrote:But there are multiple scenarios in physiology or etiology that can render xPAP unfeasible. One of those etiologic scenarios is virtually immovable (narrow diameter based) constant upper airway resistive loading and/or immovable dynamic occlusion (or blockage).

SWS, I'm impressed by your level of knowledge and I know you mean well, but the fact is Mar has only touched the surface of xPAP options available to her. It's not surprising that she has had so little success to date, with pretty low pressure and using APAP when she can't produce snore or flow limitation to trigger its response. The kind of anatomy that you mention is extremely rare. Not just very rare, extremely rare. In my opinion, one of the many doctors she has seen would have said if she had that level of immovable obstruction. She may have been a very strong candidate for UPPP, but that does not automatically make her any kind of candidate for a trach.

As someone who lives with multiple conditions and the risk of worse later in life, I know the importance of banishing the fear of the future. Even in the extremely unlikely event that Mar might need a trach, I don't see any value in dwelling on it right now. If it was to happen, a competent doctor would first insist on a lengthy process of trialling all the xPAP options at their optimal settings for the patient. Mar is only beginning that journey, having had what was clearly a substandard set of lab studies and service from a demonstrably incompetent doctor. (So many of the things Mar has said about him show the glaring gaps in his knowledge). I feel very confident that the right pressure setting, probably at CPAP or BiLevel but not APAP, will do the trick. And I'm not just saying that to raise false hope - I really believe it.

SWS, let's focus on supporting Mar on her current journey - in the extremely unlikely event that she might need a trach, we all would be as supportive as we can in that - for now, Mar's challenge is to see if xPAP will work for her.

BlueSky72 wrote:The kind of anatomy that you mention is extremely rare. Not just very rare, extremely rare.

So do you have an epidemiological percentage to go with that assessment?

BlueSky72 wrote: She may have been a very strong candidate for UPPP, but that does not automatically make her any kind of candidate for a trach.

I don't think anybody in this thread---and certainly not me---implied a default or automatic treatment decision of any kind. Let's not pretend trach was either forced into this discussion as a prime treatment method---or somehow doesn't belong on this message board for yet other hard-pressed readers searching for treatment answers. But I agree there's absolutely no need to belabor the trach treatment option in this thread.

BlueSky72 wrote: SWS, let's focus on supporting Mar on her current journey - in the extremely unlikely event that she might need a trach, we all would be as supportive as we can in that - for now, Mar's challenge is to see if xPAP will work for her.

Better idea yet, let's continue to expect and allow people on this message board to voice their own opinions rather than having their thoughts and words shepherded by well-meaning newcomers.

Hi Bluesky,

Funny thing is, before I read this, I just wrote a private PM to -SWS thanking him for making me aware of that rare possibility (the trach thing...not that I would consider one unless everything else had been totally ruled out and even then, I reserve the option to opt out). I really do have that pushed way back on the shelf esp after I did some mental and emotional processing of the thought. But actually thinking about the situation really helped me to be prepared for the things I discussed with the new doctor. I was able to go to the appointment with a mental and emotional mind set that allowed us to comfortably talk about some not easy to hear things. But that wasn't the focus of our discussions and because I was able to not be shocked by anything she said, I know she was able to feel comfortable talking very openly with me.

I am really excited about working with this new doctor and I am feeling very positive. -SWS is part of that positive feeling...I could not have made it this far and done so well with the physical problems I have, if I wasn't an ace at pulling the positive from whatever comes my way. My way of feeling positive about things does include a big dose of realism though...it has had to with all the roadblocks I have encountered...otherwise I would have gotten too beat down when reality was way too far from 'rosy thinking'.

I have run marathons, done long distance triathlons, ridden my horses in 100 mile competitions, and three days of 55 miles in a row...for years my self esteem was at rock bottom because I had doctor after doctor telling me nothing was wrong with me and running down my work ethic and thinking my problem would have to be dwelt with my a psychiatrist (which did no good by the way)...now I realize what amazing things I have accomplished with a body that should not have been able to do so much. I didn't give up and I'm not going to give up...I might cry along the way sometimes though

All my running and triathlon accomplishments involved my trying way too hard because I thought I must be a pretty lazy person...after the UPPP, I decided if I got horse I was not going to compete in endurance rides with the 'must win' frame of mind...instead I have a longevity frame of mind for me and my horses...I went from a AAAAAA personality type to a much more laid back way of thinking and this has been very good for me. I really appreciate your help and positive thoughts...I can use all I can get and I do feed off of the good thoughts of others. And even though each of us may not have the same problem, I know I am not alone when so many of you are willing to help and support me. (Oh, and -SWS makes my brain develop new brain cells as I learn the big words he writes)
mar