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What would you ask when getting a 2nd opinion?
First, I would like to thank everyone here for their help in educating me on my new way of life.
I was diagnosed with Mild/Mod OSA in August, had 2 sleep studies. The second was with a CPAP and nasal mask. According to my report, I did fairly poorly at all pressure settings. "On best CPAP 9.0, RDI 14.1., REM RDI 22.4" Ok, so what does the doctor tell me? Pick one of these 4 surgeries and good luck with that. Am I supposed to just take that and run with it ? Sorry, but after much research here and elsewhere on the web I look back at my visit with this doctor and say "hey, how come you didn't recommend a different machine or a different mask or both ?" Could it be that just the CPAP didn't work for ME ? I actually felt pretty good the next morning and didn't need a nap at all that day. Mind over matter?
I have a second opinion coming up on 9/24 with a different sleep apnea doctor in a different practice. My question for the group is: What questions should I ask this time around ?
I sleep every chance I get, I literally come home from work, eat dinner and go directly to bed. I sleep 8-9 hours every night and take 2-3 naps on my days off. My naps last from 2-4 hours each ! (Also, I have vivid dreams during my naps.) I work full time approx. 42 hours a week, commute time is 10 hours a week.
I am wasting my life away sleeping and I just want to be normal again. Any advice would be greatly appreciated :)
Thanks,
Donna B.
I was diagnosed with Mild/Mod OSA in August, had 2 sleep studies. The second was with a CPAP and nasal mask. According to my report, I did fairly poorly at all pressure settings. "On best CPAP 9.0, RDI 14.1., REM RDI 22.4" Ok, so what does the doctor tell me? Pick one of these 4 surgeries and good luck with that. Am I supposed to just take that and run with it ? Sorry, but after much research here and elsewhere on the web I look back at my visit with this doctor and say "hey, how come you didn't recommend a different machine or a different mask or both ?" Could it be that just the CPAP didn't work for ME ? I actually felt pretty good the next morning and didn't need a nap at all that day. Mind over matter?
I have a second opinion coming up on 9/24 with a different sleep apnea doctor in a different practice. My question for the group is: What questions should I ask this time around ?
I sleep every chance I get, I literally come home from work, eat dinner and go directly to bed. I sleep 8-9 hours every night and take 2-3 naps on my days off. My naps last from 2-4 hours each ! (Also, I have vivid dreams during my naps.) I work full time approx. 42 hours a week, commute time is 10 hours a week.
I am wasting my life away sleeping and I just want to be normal again. Any advice would be greatly appreciated :)
Thanks,
Donna B.
Views: 266
Replies to This Discussion
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Permalink Reply by Mary Z on
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I don't think this necessarily holds true all the time, 99. The pressure needed might be such that a person would be more comfortable with a BiPAP, or APAP after titration.
99 said:the apap is to try before they give you a cpap, note the difference
the apap is for titration for the cpap to be set at
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Permalink Reply by Donna B. on
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The first doctor I went to kept me waiting for 1 1/2 hours !! I was scheduled for 7:30am and he didn't see me until 8:55a ! I was not impressed from the moment I walked in, the receptionist couldn't even give me the common courtesy of a "good morning" nor did she make any eye contact with me. I did inquire as to how long I would have to wait when it got to be 8:00 and the reply was "it will just be a few more minutes". I let them know that I too had patients to see and that this is why I wanted the FIRST appt of the day. ( I am in Veterinary medicine), it is inexcusable to make anyone wait more than 15 minutes for an appointment.
My practice prides itself on being on time, if there is an emergency walk in (like a hit by car) we call our clients to let them know that we will be delayed and give them the option to reschedule. (Common courtesy in my practice, greatly lacking in human medicine ) Those in the waiting room are kept informed and given the option to reschedule.
It just burns me up when they hold you hostage like that. Needless to say, the next 2 visits went a little better but I still waited a 1/2 hour each time.
Mary Z said:Sounds like a good start, except for the wait. I don't know why some docs can't get it together to be on time. An APAP is a good machine, allowing them to find an optimal range of pressures for you. Good news about the mask- that can be the breaking point.
Mary Z.
Donna B. said:2nd Opinion today !
New Doc is giving me an A-PAP machine to try, I get it on Tuesday next week. I had to wait about an hour to see him so what did I do? I napped in the waiting room. At least I didn't drool. He said they would spend as much time with me as necessary to get me fitted properly to the right mask. I guess I am off to a good start, we shall see.
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My guess on the "bums rush" is that you were only given 15 minutes for your appointment. No more no less. Too bad if you have questions, that would take more time. Money is the issue, get 'em in, get 'em out. If they would just schedule appropriately for each patient then they would not run behind and make you wait an hour. But again, it's all about the all mighty dollar. Can't blame the doctors, they don't do the scheduling, how many times a day do they have to apologize for your wait time ?? I hear it far too often and it will never change.
Mary Z said:I can ask this same question. After my latest visit and a bums rush out of the office with a new prescription given to the tech with no time for discussion or questions from me, I am seeing another doc on Oct 12. I don't know what to say, except that 30/25 (reduced to 27/24 when my mask could not take the higher pressure) is ridiculous. I guess I'll tell the new Doc that BIPAP is not working for me and what does he suggest. I don't want to go in as a disgruntled patient- good way to get labeled as hard to please- so I feel I really do need to work the second opinion idea, though, I'm ready to change docs. Even the RT at my DME told the doc we were at the point of diminishing returns, but the doc wouldn't listen.
Thanks,
Mary Z.
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Permalink Reply by Rev Aaron Fielder on
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Donna, have you been evaluated for the possibility of a blood-sugar problem...either hypogycemic or hyperglycemic? Before I was diagnosed as a full-blown diabetic needing insulin, I too was sleeping a lot during the day (or at least having trouble trying to stay awake and be sociable especially after a meal); and not sleeping well (disturbed sleep) at all during the nite. I just thought at the time my "inner clock" was out-of-sync! Turned out my tiredness all the time had more to do with my blood and digestive system than it did with my "inner clock!" Exercise (a little walking), a better diet, and proper monitoring of my blood sugar made a big difference in how I feel now. However, years of neglect mean I still need to use a CPAP with a "evap mister" so I don't quit breathing in the night anymore! (and my sinuses are now really a mess!)
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Permalink Reply by Melinda Hertel on
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Getting a second opinion was an excellent first step. I am so sorry that your first doctor was so unhelpful. Unfortunately, I hear about that kind of thing all the time. The APAP may be the answer for you. It really just depends on what is meant by "you did poorly at all pressure settings". There are many factors involved in the titration process, and knowing how long the sleep tech let you sleep at each pressure tried is important to know. It is also important to know the type of events you were having at each pressure, meaning how many obstructive vs. central apneas were recorded. Sometimes the wrong pressure setting, usually one that is too high, will trigger central apneas. Unfortunately, in the medical practice I work with we see a lot of sleep studies that were not titrated properly and the poor person is failing at CPAP.
Whatever you do, don't give up. Sleeping your life away is correctable--especially if you were diagnosed with sleep apnea. I have mild sleep apnea, but the CPAP has made a huge difference for me. If the APAP does not help, don't give up. There are people that do fabulously on APAP. But there are also people who don't do well because the machine is also sensitive to non-obstructive events and adjusts pressure when it's not always needed. For example, if you swallow in your sleep, the APAP might read that as an obstruction and raise the pressure. But because there was no obstruction and you didn't need the extra pressure, it wakes you to a shallower level of sleep just like an apnea event does.
I am not at all trying to sway you from trying the APAP. I just don't want you to be discouraged if it doesn't work. If you have any questions or need more information, please feel free to email me or call. We have a toll-free #: 877-392-7270.
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My doctor put my on NuVigil yesterday. It's for Narcoleptics, shift workers and people with Apnea/Hypopnea. I have mild Apnea and have been using CPAP for 8 weeks but still felt really sleepy.
I hope your doctor is able to help you.
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Permalink Reply by James Bacher on
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The last comment of your I read said your doc put you on NuVigil yesterday. How is that working for you?
Your symptoms sound familiar to me. I am wondering about your comment that you have vivid dreams in your naps. Do you have dreams even in short naps? For instance, do you get into dreaming right away after going to sleep?
I am not surprised you couldn't take the 27/24 pressure. I couldn't take 17/12 at 13 bpm (breaths per minute), I switched to a BiPAP at 16/10 and 10 bpm with timed backup. Now if I experience an apnea the timed backup initiates the next breath based upon my actual breathing pattern at that time. It is wonderful. I had more central apneas than obstructive apneas and no matter the pressure being used with CPAP central apneas are uneffected.
My advice is stay away from the surgery.
Did you have MSLT's with you polysomanographys? I didn't see an breakdown of the apneas you have. Do you have any central apneas? Do you have more central than obstructive? Do you have any other breathing disorders?
I agree with Melinda's comment too. I have seen many poor titration results but it isn't too difficult to get the right setting if you keep at it. That is, of course, that you are getting the best course of therapy for your particular problems. I feel certain that there is more to what you are dealing with than just OSA.
I'd like to know the answers to the few questions I have listed herein. I'll give you a rundown of my experiences and why your situation sounds familiar if you can let us know.
Good Luck
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I had a 2nd opinion last week and a new sleep study last night. Made a List of questions and symptoms so that when I got to see the Doc both he and I we were on the same page. Had copies of all tests already copied and a galleleos image on disk. He fired up the disk and found A polup and a partially obstructed left sinus.Ordered an ENT consult and new sleep study. Found perliminary result pressure needs to be bomped up from 12 to 14 on cpap.Get full report in 1 month ....guess the data needs to make the rounds.Do not be affraid to ask questions.....if they are written down I can't get side tracked and leave with questions un answered.
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Yes, I have had numerous blood tests to check adrenal, thyroid, hormone levels etc. My blood sugar is normal. That is the first place we started when I sought an answer to this dreaded fatigue. My Vitamin D levels were low but that is due to the fact that all I do is sleep and work, no play time for me.
Rev Aaron Fielder said:Donna, have you been evaluated for the possibility of a blood-sugar problem...either hypogycemic or hyperglycemic? Before I was diagnosed as a full-blown diabetic needing insulin, I too was sleeping a lot during the day (or at least having trouble trying to stay awake and be sociable especially after a meal); and not sleeping well (disturbed sleep) at all during the nite. I just thought at the time my "inner clock" was out-of-sync! Turned out my tiredness all the time had more to do with my blood and digestive system than it did with my "inner clock!" Exercise (a little walking), a better diet, and proper monitoring of my blood sugar made a big difference in how I feel now. However, years of neglect mean I still need to use a CPAP with a "evap mister" so I don't quit breathing in the night anymore! (and my sinuses are now really a mess!)
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@James, are the questions for me or yogariffic ? I haven't been prescribed NuVigil but I do have wicked dreams when I nap and sometimes have the same dream in a weeks time. They are so vivid I can "relive" it when I am awake, it can be disturbing at times.
James Bacher said:The last comment of your I read said your doc put you on NuVigil yesterday. How is that working for you?
Your symptoms sound familiar to me. I am wondering about your comment that you have vivid dreams in your naps. Do you have dreams even in short naps? For instance, do you get into dreaming right away after going to sleep?
I am not surprised you couldn't take the 27/24 pressure. I couldn't take 17/12 at 13 bpm (breaths per minute), I switched to a BiPAP at 16/10 and 10 bpm with timed backup. Now if I experience an apnea the timed backup initiates the next breath based upon my actual breathing pattern at that time. It is wonderful. I had more central apneas than obstructive apneas and no matter the pressure being used with CPAP central apneas are uneffected.
My advice is stay away from the surgery.
Did you have MSLT's with you polysomanographys? I didn't see an breakdown of the apneas you have. Do you have any central apneas? Do you have more central than obstructive? Do you have any other breathing disorders?
I agree with Melinda's comment too. I have seen many poor titration results but it isn't too difficult to get the right setting if you keep at it. That is, of course, that you are getting the best course of therapy for your particular problems. I feel certain that there is more to what you are dealing with than just OSA.
I'd like to know the answers to the few questions I have listed herein. I'll give you a rundown of my experiences and why your situation sounds familiar if you can let us know.
Good Luck
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I got my machine today (Tuesday) an Autoset II w/heated humidifier for a 4 week trial (and it does record the data) and an F.P. Opus nasal mask (same one I had for my sleep study) My technician let me try it out for 15 minutes this morning, it's funny, I sat in the chair and closed my eyes, could feel myself falling asleep. It only took a few minutes after being plugged in to get used to the pressure.I don't find the mask uncomfortable at all and had no trouble sleeping with it at the overnight.
Mary Z said:I don't think this necessarily holds true all the time, 99. The pressure needed might be such that a person would be more comfortable with a BiPAP, or APAP after titration.
99 said:the apap is to try before they give you a cpap, note the difference
the apap is for titration for the cpap to be set at
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@Melinda, can I get a copy of the report that shows all the pressure settings during the study ? I did get an APAP today (Tuesday) with recordable data.
Melinda Hertel said:Getting a second opinion was an excellent first step. I am so sorry that your first doctor was so unhelpful. Unfortunately, I hear about that kind of thing all the time. The APAP may be the answer for you. It really just depends on what is meant by "you did poorly at all pressure settings". There are many factors involved in the titration process, and knowing how long the sleep tech let you sleep at each pressure tried is important to know. It is also important to know the type of events you were having at each pressure, meaning how many obstructive vs. central apneas were recorded. Sometimes the wrong pressure setting, usually one that is too high, will trigger central apneas. Unfortunately, in the medical practice I work with we see a lot of sleep studies that were not titrated properly and the poor person is failing at CPAP.
Whatever you do, don't give up. Sleeping your life away is correctable--especially if you were diagnosed with sleep apnea. I have mild sleep apnea, but the CPAP has made a huge difference for me. If the APAP does not help, don't give up. There are people that do fabulously on APAP. But there are also people who don't do well because the machine is also sensitive to non-obstructive events and adjusts pressure when it's not always needed. For example, if you swallow in your sleep, the APAP might read that as an obstruction and raise the pressure. But because there was no obstruction and you didn't need the extra pressure, it wakes you to a shallower level of sleep just like an apnea event does.
I am not at all trying to sway you from trying the APAP. I just don't want you to be discouraged if it doesn't work. If you have any questions or need more information, please feel free to email me or call. We have a toll-free #: 877-392-7270.
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