Over 80 sleep disorders, when I got back to Stanford you would think they would find mine or a new one
Question:
I would think it would be a challenge to find out what my problem is as I have had 7 sleep studies, 2 at Stanford and 5 at Sequoia. My doctor at Stanford does not know what to do as he has only seen a few cases like mine. This time I go to Stanford I will have to be vey pushy. Since it is a training facility most of the time I have seen doctors in training in sleep disorders and the senior doctors came in, I have seen 3 or 4 of them and they have never looked at all of my sleep studies and tried to be helpful. They more or less said I was fatigued. Dr. Dement who founded the clinic says if a person says they are tired they usually have a sleep problem. Since I have had this problem for over 4 years and not focused on solely the fragmentation since I have had other sleep disorders go and come, alveolar hypoventilation, alpha intrusion, sleep apnea but the fragmentation is the single item in the last 6 studies and has gotten worse. These are called unknown arousals as they are not respiratory but changes in stages of sleep. I had the UAR test and it was negative and the unknown arousals were there. I might have to beg Dr. Dement to see if he will help me if Stanford fails me this time.
Response:
Posted and emailed. Patrick – Didn’t you say you were going to see a neurologist? Did you? Was he a certified sleep doc? No help? – Hide quoted text — Show quoted text -Patrick Richards wrote: > I would think it would be a challenge to find out what my problem is as I > have had 7 sleep studies, 2 at Stanford and 5 at Sequoia. My doctor at > Stanford does not know what to do as he has only seen a few cases like mine. > This time I go to Stanford I will have to be vey pushy. Since it is a > training facility most of the time I have seen doctors in training in sleep > disorders and the senior doctors came in, I have seen 3 or 4 of them and > they have never looked at all of my sleep studies and tried to be helpful. > They more or less said I was fatigued. Dr. Dement who founded the clinic > says if a person says they are tired they usually have a sleep problem. > Since I have had this problem for over 4 years and not focused on solely the > fragmentation since I have had other sleep disorders go and come, alveolar > hypoventilation, alpha intrusion, sleep apnea but the fragmentation is the > single item in the last 6 studies and has gotten worse. These are called > unknown arousals as they are not respiratory but changes in stages of sleep. > I had the UAR test and it was negative and the unknown arousals were there. > I might have to beg Dr. Dement to see if he will help me if Stanford fails > me this time.
Response:
I saw a neuroligist and he was not sleep certified. He did a head scan but I am not sure how much that rules out. Being pushy at Stanford and maybe tried and beg Dr. Dement to help me. "NormC" <no…@socal.rr.com> wrote in message
news:3DEA4DA5.9902F234@socal.rr.com… – Hide quoted text — Show quoted text -> Posted and emailed. > Patrick – Didn’t you say you were going to see a neurologist? Did you? Was > he a certified sleep doc? No help? > Patrick Richards wrote: > > I would think it would be a challenge to find out what my problem is as I > > have had 7 sleep studies, 2 at Stanford and 5 at Sequoia. My doctor at > > Stanford does not know what to do as he has only seen a few cases like mine. > > This time I go to Stanford I will have to be vey pushy. Since it is a > > training facility most of the time I have seen doctors in training in sleep > > disorders and the senior doctors came in, I have seen 3 or 4 of them and > > they have never looked at all of my sleep studies and tried to be helpful. > > They more or less said I was fatigued. Dr. Dement who founded the clinic > > says if a person says they are tired they usually have a sleep problem. > > Since I have had this problem for over 4 years and not focused on solely the > > fragmentation since I have had other sleep disorders go and come, alveolar > > hypoventilation, alpha intrusion, sleep apnea but the fragmentation is the > > single item in the last 6 studies and has gotten worse. These are called > > unknown arousals as they are not respiratory but changes in stages of sleep. > > I had the UAR test and it was negative and the unknown arousals were there. > > I might have to beg Dr. Dement to see if he will help me if Stanford fails > > me this time.
Response:
Patrick, I had two studies done at Stanford last Oct. my diagnostic and my titration. The cpap treatment wasn’t helping me and the the student doctor I was seeing was not helpful and condescending to boot. He was very opposed to my trying an autopap and he said that no one at Stanford uses them. I kept taking my mask off in the middle of the night while I was asleep. In Sept. I found a board certified sleep doctor (Neurologist). Her name is Joanna Cooper and she is at the Sleep Disorders Center in Pinole. She often uses the Autopap machine and finds that many patients sleep better with them. She let me do a two week trial with an Autoset T and a month long trial with the Goodnight 418P. I found that my pressure needs varied a lot during the night. I also did another sleep study at the Pinole center. At Stanford they set my pressure at 9 on a cpap. I found through the autopap trials and the recent sleep study that while I need a 9 pressure 75% of the night, my pressure needs go all the way up to 14. Dr. Cooper prescribed the autopap for me and I got the 418P last week and I am sleeping through the night now and feel like I’ve finally have the right treatment. It sounds like what you are dealing with may be very different from what I’m dealing with. I did want to let you know that there is a board certified Neurologist in the area. I am very pleased with the treatment that I’ve received from her. The number of the Sleep Disorders Center in Pinole is 510-741-2525. – Hide quoted text — Show quoted text -"Patrick Richards" <patrickricha…@nospamattbi.com> wrote in message <news:FVqG9.195114$WL3.68150@rwcrnsc54>… > I would think it would be a challenge to find out what my problem is as I > have had 7 sleep studies, 2 at Stanford and 5 at Sequoia. My doctor at > Stanford does not know what to do as he has only seen a few cases like mine. > This time I go to Stanford I will have to be vey pushy. Since it is a > training facility most of the time I have seen doctors in training in sleep > disorders and the senior doctors came in, I have seen 3 or 4 of them and > they have never looked at all of my sleep studies and tried to be helpful. > They more or less said I was fatigued. Dr. Dement who founded the clinic > says if a person says they are tired they usually have a sleep problem. > Since I have had this problem for over 4 years and not focused on solely the > fragmentation since I have had other sleep disorders go and come, alveolar > hypoventilation, alpha intrusion, sleep apnea but the fragmentation is the > single item in the last 6 studies and has gotten worse. These are called > unknown arousals as they are not respiratory but changes in stages of sleep. > I had the UAR test and it was negative and the unknown arousals were there. > I might have to beg Dr. Dement to see if he will help me if Stanford fails > me this time.
Response:
I agree that they are very condeescending there and if this does not turn out I probably will sue for malpractice. Since I have been there so many times and they have not tried to really treat my problem which is a rare unknown arousals. If they want to get paid then they must do the work and they have not. This is ruining my life and if I have to sue, if I can, I will. They don’t want to spent much times with patients and probably only really work with the rich or famous. Personally I like my old sleep lab but they do not know the solution to my problem. Apnea is not my problem but the unknown arousals. Since there are over 80 sleep disorders I have something that is disturbing my sleep and it would seem to me if a doctor does not wish to do his duty as a doctor he must pay for that. Any way thanks for the information. I have another doctor in mind (who is qualified but I don’t know if he see patients any more) after I see Stanford. "Pamela" <pmne…@yahoo.com> wrote in message
news:dbfc84b.0212012329.35985b55@posting.google.com… – Hide quoted text — Show quoted text -> Patrick, > I had two studies done at Stanford last Oct. my diagnostic and my > titration. The cpap treatment wasn’t helping me and the the student > doctor I was seeing was not helpful and condescending to boot. He was > very opposed to my trying an autopap and he said that no one at > Stanford uses them. I kept taking my mask off in the middle of the > night while I was asleep. > In Sept. I found a board certified sleep doctor (Neurologist). Her > name is Joanna Cooper and she is at the Sleep Disorders Center in > Pinole. She often uses the Autopap machine and finds that many > patients sleep better with them. She let me do a two week trial with > an Autoset T and a month long trial with the Goodnight 418P. I found > that my pressure needs varied a lot during the night. I also did > another sleep study at the Pinole center. At Stanford they set my > pressure at 9 on a cpap. I found through the autopap trials and the > recent sleep study that while I need a 9 pressure 75% of the night, my > pressure needs go all the way up to 14. Dr. Cooper prescribed the > autopap for me and I got the 418P last week and I am sleeping through > the night now and feel like I’ve finally have the right treatment. > It sounds like what you are dealing with may be very different from > what I’m dealing with. I did want to let you know that there is a > board certified Neurologist in the area. I am very pleased with the > treatment that I’ve received from her. The number of the Sleep > Disorders Center in Pinole is 510-741-2525. > "Patrick Richards" <patrickricha…@nospamattbi.com> wrote in message
<news:FVqG9.195114$WL3.68150@rwcrnsc54>… – Hide quoted text — Show quoted text -> > I would think it would be a challenge to find out what my problem is as I > > have had 7 sleep studies, 2 at Stanford and 5 at Sequoia. My doctor at > > Stanford does not know what to do as he has only seen a few cases like mine. > > This time I go to Stanford I will have to be vey pushy. Since it is a > > training facility most of the time I have seen doctors in training in sleep > > disorders and the senior doctors came in, I have seen 3 or 4 of them and > > they have never looked at all of my sleep studies and tried to be helpful. > > They more or less said I was fatigued. Dr. Dement who founded the clinic > > says if a person says they are tired they usually have a sleep problem. > > Since I have had this problem for over 4 years and not focused on solely the > > fragmentation since I have had other sleep disorders go and come, alveolar > > hypoventilation, alpha intrusion, sleep apnea but the fragmentation is the > > single item in the last 6 studies and has gotten worse. These are called > > unknown arousals as they are not respiratory but changes in stages of sleep. > > I had the UAR test and it was negative and the unknown arousals were there. > > I might have to beg Dr. Dement to see if he will help me if Stanford fails > > me this time.
Response:
Probably what I will do depending on what they do and I have to be careful that they don’t screw up my disability which is another concern of mine. My pulomonary doctor who found my emphysema has a office next to Dr. Dement so I might ask her to ask him to help me as I know my problem is solveable or at least we can find out what it is but it will take work and I need a doctor who can do that. "NormC" <no…@socal.rr.com> wrote in message
news:3DEC0B3F.C0202276@socal.rr.com… – Hide quoted text — Show quoted text -> From my expieriences at UCLA, for many different medical problems, I have > become cautious about what I expect from a ‘teaching hospital’. > It’s one thing to have a ‘common problem’ and go to a teaching hospital, but > quite another to have something unusual and do so. > I even have some reservations about seeing an M.D., in private practice, who > is a medical school professor, for anything unusual. My reason for this is > that I would rather see a doctor who sees patients all day every day, not just > in-between classes. > Patrick Richards wrote: > > I agree that they are very condeescending there and if this does not turn > > out I probably will sue for malpractice. Since I have been there so many > > times and they have not tried to really treat my problem which is a rare > > unknown arousals. > > If they want to get paid then they must do the work and they have not. This > > is ruining my life and if I have to sue, if I can, I will. > > They don’t want to spent much times with patients and probably only really > > work with the rich or famous. Personally I like my old sleep lab but they > > do not know the solution to my problem. > > Apnea is not my problem but the unknown arousals. Since there are over 80 > > sleep disorders I have something that is disturbing my sleep and it would > > seem to me if a doctor does not wish to do his duty as a doctor he must pay > > for that. > > Any way thanks for the information. I have another doctor in mind (who is > > qualified but I don’t know if he see patients any more) after I see > > Stanford. > > "Pamela" <pmne…@yahoo.com> wrote in message > > news:dbfc84b.0212012329.35985b55@posting.google.com… > > > Patrick, > > > I had two studies done at Stanford last Oct. my diagnostic and my > > > titration. The cpap treatment wasn’t helping me and the the student > > > doctor I was seeing was not helpful and condescending to boot. He was > > > very opposed to my trying an autopap and he said that no one at > > > Stanford uses them. I kept taking my mask off in the middle of the > > > night while I was asleep. > > > In Sept. I found a board certified sleep doctor (Neurologist). Her > > > name is Joanna Cooper and she is at the Sleep Disorders Center in > > > Pinole. She often uses the Autopap machine and finds that many > > > patients sleep better with them. She let me do a two week trial with > > > an Autoset T and a month long trial with the Goodnight 418P. I found > > > that my pressure needs varied a lot during the night. I also did > > > another sleep study at the Pinole center. At Stanford they set my > > > pressure at 9 on a cpap. I found through the autopap trials and the > > > recent sleep study that while I need a 9 pressure 75% of the night, my > > > pressure needs go all the way up to 14. Dr. Cooper prescribed the > > > autopap for me and I got the 418P last week and I am sleeping through > > > the night now and feel like I’ve finally have the right treatment. > > > It sounds like what you are dealing with may be very different from > > > what I’m dealing with. I did want to let you know that there is a > > > board certified Neurologist in the area. I am very pleased with the > > > treatment that I’ve received from her. The number of the Sleep > > > Disorders Center in Pinole is 510-741-2525. > > > "Patrick Richards" <patrickricha…@nospamattbi.com> wrote in message > > <news:FVqG9.195114$WL3.68150@rwcrnsc54>… > > > > I would think it would be a challenge to find out what my problem is as > > I > > > > have had 7 sleep studies, 2 at Stanford and 5 at Sequoia. My doctor at > > > > Stanford does not know what to do as he has only seen a few cases like > > mine. > > > > This time I go to Stanford I will have to be vey pushy. Since it is a > > > > training facility most of the time I have seen doctors in training in > > sleep > > > > disorders and the senior doctors came in, I have seen 3 or 4 of them and > > > > they have never looked at all of my sleep studies and tried to be > > helpful. > > > > They more or less said I was fatigued. Dr. Dement who founded the > > clinic > > > > says if a person says they are tired they usually have a sleep problem. > > > > Since I have had this problem for over 4 years and not focused on solely > > the > > > > fragmentation since I have had other sleep disorders go and come, > > alveolar > > > > hypoventilation, alpha intrusion, sleep apnea but the fragmentation is > > the > > > > single item in the last 6 studies and has gotten worse. These are > > called > > > > unknown arousals as they are not respiratory but changes in stages of > > sleep. > > > > I had the UAR test and it was negative and the unknown arousals were > > there. > > > > I might have to beg Dr. Dement to see if he will help me if Stanford > > fails > > > > me this time.
Response:
From my expieriences at UCLA, for many different medical problems, I have become cautious about what I expect from a ‘teaching hospital’. It’s one thing to have a ‘common problem’ and go to a teaching hospital, but quite another to have something unusual and do so. I even have some reservations about seeing an M.D., in private practice, who is a medical school professor, for anything unusual. My reason for this is that I would rather see a doctor who sees patients all day every day, not just in-between classes. – Hide quoted text — Show quoted text -Patrick Richards wrote: > I agree that they are very condeescending there and if this does not turn > out I probably will sue for malpractice. Since I have been there so many > times and they have not tried to really treat my problem which is a rare > unknown arousals. > If they want to get paid then they must do the work and they have not. This > is ruining my life and if I have to sue, if I can, I will. > They don’t want to spent much times with patients and probably only really > work with the rich or famous. Personally I like my old sleep lab but they > do not know the solution to my problem. > Apnea is not my problem but the unknown arousals. Since there are over 80 > sleep disorders I have something that is disturbing my sleep and it would > seem to me if a doctor does not wish to do his duty as a doctor he must pay > for that. > Any way thanks for the information. I have another doctor in mind (who is > qualified but I don’t know if he see patients any more) after I see > Stanford. > "Pamela" <pmne…@yahoo.com> wrote in message > news:dbfc84b.0212012329.35985b55@posting.google.com… > > Patrick, > > I had two studies done at Stanford last Oct. my diagnostic and my > > titration. The cpap treatment wasn’t helping me and the the student > > doctor I was seeing was not helpful and condescending to boot. He was > > very opposed to my trying an autopap and he said that no one at > > Stanford uses them. I kept taking my mask off in the middle of the > > night while I was asleep. > > In Sept. I found a board certified sleep doctor (Neurologist). Her > > name is Joanna Cooper and she is at the Sleep Disorders Center in > > Pinole. She often uses the Autopap machine and finds that many > > patients sleep better with them. She let me do a two week trial with > > an Autoset T and a month long trial with the Goodnight 418P. I found > > that my pressure needs varied a lot during the night. I also did > > another sleep study at the Pinole center. At Stanford they set my > > pressure at 9 on a cpap. I found through the autopap trials and the > > recent sleep study that while I need a 9 pressure 75% of the night, my > > pressure needs go all the way up to 14. Dr. Cooper prescribed the > > autopap for me and I got the 418P last week and I am sleeping through > > the night now and feel like I’ve finally have the right treatment. > > It sounds like what you are dealing with may be very different from > > what I’m dealing with. I did want to let you know that there is a > > board certified Neurologist in the area. I am very pleased with the > > treatment that I’ve received from her. The number of the Sleep > > Disorders Center in Pinole is 510-741-2525. > > "Patrick Richards" <patrickricha…@nospamattbi.com> wrote in message > <news:FVqG9.195114$WL3.68150@rwcrnsc54>… > > > I would think it would be a challenge to find out what my problem is as > I > > > have had 7 sleep studies, 2 at Stanford and 5 at Sequoia. My doctor at > > > Stanford does not know what to do as he has only seen a few cases like > mine. > > > This time I go to Stanford I will have to be vey pushy. Since it is a > > > training facility most of the time I have seen doctors in training in > sleep > > > disorders and the senior doctors came in, I have seen 3 or 4 of them and > > > they have never looked at all of my sleep studies and tried to be > helpful. > > > They more or less said I was fatigued. Dr. Dement who founded the > clinic > > > says if a person says they are tired they usually have a sleep problem. > > > Since I have had this problem for over 4 years and not focused on solely > the > > > fragmentation since I have had other sleep disorders go and come, > alveolar > > > hypoventilation, alpha intrusion, sleep apnea but the fragmentation is > the > > > single item in the last 6 studies and has gotten worse. These are > called > > > unknown arousals as they are not respiratory but changes in stages of > sleep. > > > I had the UAR test and it was negative and the unknown arousals were > there. > > > I might have to beg Dr. Dement to see if he will help me if Stanford > fails > > > me this time.
