SaltLakeJan wrote:HI Mar,
Well, we find ourselves linked by unusual circumstances. Reading your posts is like reading a copy of my symptoms. It apparently is not easy to diagnose apnea patients who have had UPPP surgery. I haven't had success in getting a different machine from my sleep doctor. I did speak with a man who was a R.T. for 8 years. He said when doctors prescribed bi-levels for those who had UP surgery, and monitored them carefully, that a large percentage had successful therapy. He came from an area where sleep doctors see their patients on a monthly basis for the first year.
I'm sending positive thoughts for your appointment with your new sleep dr.
Jan
Hi Jan and and fellow primates ,
I'm glad -SWS pointed us out to each other. And your positive thoughts must have helped me even though I didn't read them until after my doctor's appointment. Things went great! My husband went with me. I "trained" him to be my patient's advocate about three weeks ago, after my second frustrating visit with the sleep doctor. I had already amassed data and medical records and notes from this forum into a notebook that I would take with me on doctor's visits. I used this notebook, information on this forum and my machine and mask as visual aids to bring my husband up to speed on knowledge that would be helpful when we spoke with the doctor on my third visit. I wanted him to have an understanding of the terms and treatments concerning both sleep apnea and the equipment used to treat it.
His presence helped a lot at that third visit. And being there gave my husband a very good understanding of what I was dealing with and why I had a feeling at times, that I was dealing with a brick wall. He also attempted to speak with a tech in the doctor's DME portion of the business and that did not go well either...I finished up speaking with the tech and the experience, along with our three meetings with the sleep doctor, made us want to speak with someone else for a second opinion. So I made an appointment with a clinic that had been recommended to me by the gastro doctor and that was the appointment I went to today.
I had everything prepared to provide the doctor with information pertinent to the situation. I typed up my complete health history and my list of medications and allergies. I had copies of the results of my various recent tests (the 3 page summaries of the diagnostic and titration sleep studies, the upper endoscopy results, the full pulmonary function results, the chest xray results, and copies of my detailed data from each nights sleep on the APAP). Actually I had this available for any doctor I had seen who wanted to see it. This new doctor was the first doctor who wanted to see everything.
We explained the situation and that we would be interested in her opinion of where I was headed. We had a very intense 90 minute discussion covering all my health issues...she kept a copy of my sleep data from April 29 (the first set of data that I posted in this thread)...she noticed my lack of leaks, lots of apneas and hypopneas, with the almost constant pressure even though the machine was on APAP setting. We discussed the lasting damage my body has probably already incurred from suffering from oxygen deprivation for so many years.
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). As both my referring doctor, the resp tech who conducted both of my sleep tests, and I thought...the data from my titration study seems very incomplete...esp when I seem to have a variety of events that couldn't have shown up with the light and fractured sleep I got during the titration study.
So I am going to do a new sleep study with her...she plans to have me hooked up without the machine for a couple of hours and then put me on the machine for the rest of the night. She wants to get positional readings and get recordings of arousals and other things that we have no record of. She is also going to do the day study BUT only if I have had an adequate amount of REM sleep during the night. I had thought that narcolepsy was a person busy doing something and all the sudden they fell asleep but now I know that there are degrees and stages of narcolepsy and I'm certainly showing signs of it in my daily life. The day time test won't be accurate unless I have truly had adequate REM sleep the night before, so if I don't get enough REM sleep she isn't going to have me do that test.
She has two partners in the clinic and she is going to have them work with her on my case. My night/day tests are set for June 2 (earliest it could be scheduled since they had to find a time slot to fit in both tests). She is going to take into account input from her colleagues and will call me if she needs to make changes in the plans. I feel much better moving forward with this doctor being in charge of my tests than the other doctor. I'm afraid I would not know much more than I know now with the other doctor. This doctor is going to be looking for centrals and paying attention to the arousals she knows I am having. There is a whole lot going on with my body and some of it probably can't be 'fixed' esp after all these years...she even mentioned residual sleep apnea, something that a machine won't be able to fix.
Robert and I feel very good about this visit and about going forward with her as my doctor. 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. Although we discussed that the machine I have now might not be right for me, it hasn't been ruled out as my machine in the future, if we find that it can do what I need for it to do...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, until she is able to see how I do during the sleep study and day time study.
My other two sleeps studies were held in a fancy hotel room with free full meals...this sleep study will be in a small plain room with a simple comfortable bed with no frills at all...and I'm so looking forward to it. And the 4 week wait for the next tests will be much easier now that I have a doctor that I feel comfortable with. As far as my machine settings...I plan to keep them on what I had them on last night for now...we'll get to see how I do on them with a longer nights sleep and over a longer period of time.
I have had to cultivate a positive attitude all my life, even though it was very hard with the extreme fatigue that I have lived with...and with decades of doctors telling me everything was in my head, get a life, get over yourself, etc etc etc...I'm known as being positive usually (when I am really down I hide...not that it is a good thing). I was feeling very down the last few days because I was feeling so tired and didn't have high hopes of my first sleep doctor really looking at what was going on with me. Now I am feeling very hopeful. I realize that with my long term sleep deprivation that the best that I get out of this may never compare to how a 'normal' not sleep deprived person feels but still, I would at least like to get to the best point that my body is capable of reaching. I really couldn't have gotten to this point without the help of the folks on this forum.
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