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Have "mild" getting worse in REM apnea diagnosis

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Have "mild" getting worse in REM apnea diagnosis

Postby gypsysavage » Sun Sep 02, 2007 5:54 pm

First of all I didn't even get to have an interview with a sleep specialist, my neuro referred me for a study after I told him I have been awakening a lot short of breath and after read an article on sleep apnea, told him the symptoms sounded exactly like me. Only thing he seemed interested in was whether I snored. I snore... some... but that isn't my big complaint.

I had the study and the contradictions on the report were alarming !!! The report has me falling asleep while driving, eating, and talking to people. I can understand falling alseep while watching TV, reading and I gave a rating as such. But NEVER have I fallen asleep while driving...

Anyhow, aside from all the obvious mistakes the doctor made in his written report, the test results themselves cannot be disputed (I don't think...) Maybe some of you can give me a clue as to whether a mild diagnosis such as this on a night when I didn't have any of the shortness of breath episodes I do on most nights could be justified for further testing or treatment of some kind. These test results warranted a "mild Obstructive Sleep Apnea which is worse in REM diagnosis. This doc was so off on other things, it has me worried... I really do feel like !@#! most nights and how can doctors judge a mild night against someone possibly having worse nights?

Anyhow, here are some of my test results. They are pretty mild it seems, but they also point in the direction of "it could be worse"... what can I do to help myself if my doctor's wont?

I am 56 female, go to a pain clinic for chronic pain, see neuro for migraine treatment, am post menopausal and recently diagnosed with atrial fib at the beginning of the year. These symptoms started some time after diagnosis of AF and goes through periods of being worse some nights more than others. My complaints were awakening with hot sweats, shortness of breath, frequent urination, headaches, clenching, and extreme fatigue in the morning. I also snore, but my husband says I sometimes snore, but not loudly, and it does not awaken me. I thought it was AF, but since getting a HR monitor, I note my HR is sometimes under 50 bpm and not AF.

Here are some of the test results - I did get an appointment to speak with the specialist who go so many things wrong. I can't have a study floating around in my medical file saying I fall asleep while driving when its so not true... Can a study sometimes not show how badly it can get for the patient? And, if not, how do we cope?

I was noted with 43 hypopneas lasting 10-30 seconds over a 4 and half hour period. I had Alpha intrusions during Stages 3, 4 and REM sleep.

He said my Oximety was well maintained - but I'm not sure whether to believe it when he has me falling asleep while driving... It's as follows:

Baseline: 95.7%
Minimum Saturation in NREM 90%
Minimum Saturation in REM - 89%

I was in bed 6 hours - slept 4.5 hours.
Sleep efficiency index was 74.6%

My arousal index was 16.6 - what does that mean?


I am considering getting a second opinion based on just the findings since this doctor was so off base it scares me.... I am so tired of being tired and yes, I'm depressed because I feel like !@#! - not the other way around as doctors so often want us to believe. When I feel good, I'm happy and want to do things. It's silly to think someone who feels like !@#! most days wouldn't be depressed...

Any feedback would be appreciated. I'm just beginning to learn about sleep disorders. I'm trying different sleep positions now. Thinking of sleeping in a recliner to see if that changes anything... any thoughts on that?

Barb
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Postby pseudonym » Sun Sep 02, 2007 6:04 pm

Hello Barb, see my answer to you in the main help forum.

Someone correct me if I'm wrong, I believe the 16.6 arousal index means you wake up an average of 16.6 times per hour. This is due to whatever -- apneas, hypopneas, alpha wave intrusions, even unknown arousals. My sleep study reports gave a breakdown on the arousal events, sometimes there are unknown events, did your report indicate you had any? If so a repeat study with PES (esophageal pressure monitoring) *might* be indicated, a sleep doc would know for sure if you are a UARS candidate (upper airway resistance syndrome) which PES will monitor. I was not diagnosed until my second study because I didn't have PES until then (I have severe hypopnea/UARS we found out through PES).

Hope that helps, Blessings,
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Postby Linda » Mon Sep 03, 2007 12:59 am

Hi Gypsysavage,

The number I don't see is AHI or RDI. AHI is the apnea/hypopnea index, how many you had per hour. RDI is similar. Arousal index may or may not be the same as AHI, for arousals can occur for more than one reason.

Severity is defined by AHI or RDI (how many you averaged per hour). Mild is 5-15 per hour; moderate is 15-30; severe is 30 or more per hour. If your AHI was the same as the 16.6 arousal index, that would put you in the low moderate range. I can approximate from the 43 apneas over a 4 and a half hour period as about 10 or so (my math isn't so good), and if that's your AHI, that is in the mild range.

But mild doesn't mean you don't have sleep apnea. An AHI of over 5 is considered to be sleep apnea. And I've seen plenty of people who have mild apnea and real bad symptoms. It can be a function of how long the apneas were (imagine holding your breath for 10 to 30 seconds many times an hour) as well as oxygen desaturations and how long you might have been suffering from the condition. Bottomline is you have sleep apnea and that is likely the reason you feel so bad. Plus you have atrial fib and that can make you feel bad. But atrial fib can be caused by untreated sleep apnea. You definitely have many of the classic symptoms. Untreated sleep apnea puts your body and life at risk, so I wouldn't be too focused on the severity.

Is the sleep study report a copy of the one generated by the sleep study center? (I'm assuming you had a study at a sleep study center) Usually those reports are from the sleep study center and the doctor receives a copy. Are you going back for the second sleep study where they test you using cpap and mask? In effect, that is like a second opinion. They test you almost the same as the first study, but they give you the cpap and mask and gradually increase the cpap pressures to see what pressure best controls your apneas.

Sleeping in a recliner? Yes, some people will do that as they wait for their cpap sleep study or to get their equipment, and that can ease some of the symptoms and lessen the apneas. But don't be fooled by that, for it does not eliminate the sleep apnea. And besides, who sleeps that way?

Sounds like you have sleep apnea. That may seem like bad news, but it can be very good news. If your symptoms and even your atrial fib and other health issues are caused by the sleep apnea, then cpap treatment can make a world of difference. Take a look at the topic Success Stories posted at the top of this section, you can see how cpap has helped people.


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Postby Guest MJ » Tue Sep 04, 2007 1:22 am

Hello Barb,

Unfortunately, I am really struggling with symptoms of brain-fog and fatigue, and cannot respond well to your post. I just wanted to say that I have some of the same characteristics as your case: my condition is worse during REM than non-REM, I have alpha intrusions, and I have mostly hypopneas.

Sorry to hear about your experience with doc & the report. I would be interested in hearing what your docs say about your case. I see my doc again this week.
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Postby CrohnieToo » Tue Sep 04, 2007 8:07 am

It sounds like all you have in hand is the dictated results report from a doctor who has a "generic" form to which he adds what he considers the pertinent info from the summary report and data generated during your sleep evaluation. I encountered the same "risk of falling asleep while driving", etc. and I hit the roof because the ONLY incidence I reported on the form they have you fill out was falling asleep whilst watching TV. Like you I hit the roof! I raised holy h*ll about that "driving" comment!!! I don't even know who the doctor was who dictated the report, I've never seen him. My appointments are all w/one of the main sleep doctors at this sleep lab - most likely because I did raise such a stink.

To ease your mind I would insist on a copy of the full sleep evaluation data, including graphs; the summary report is usually about 5-6 pages whilst that dictated report is just 1-2 pages.

By all means, make it clear to this doctor that you view the entire sleep evaluation w/GREAT SKEPTICISM BASED ON HIS DICTATED REPORT! Point out his comments you found especially disturbing and inaccurate. You just might save the next patient similar worries!

Actually, tho, the data itself, i.e. desaturations number and duration, etc. will be accurate in the summary data as they are recorded and reported by a pulse oximeter and software. Most of us experience more "events" during REM sleep and also when sleeping on our backs.

Keep in mind that pain and medications can also affect your sleep so you may well have more going on than "just" sleep apnea AND that sleep apnea can contribute to the pain you are experiencing.
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Postby CrohnieToo » Tue Sep 04, 2007 8:09 am

It sounds like all you have in hand is the dictated results report from a doctor who has a "generic" form to which he adds what he considers the pertinent info from the summary report and data generated during your sleep evaluation. I encountered the same "risk of falling asleep while driving", etc. and I hit the roof because the ONLY incidence I reported on the form they have you fill out was falling asleep whilst watching TV. Like you I hit the roof! I raised holy h*ll about that "driving" comment!!! I don't even know who the doctor was who dictated the report, I've never seen him. My appointments are all w/one of the main sleep doctors at this sleep lab - most likely because I did raise such a stink.

To ease your mind I would insist on a copy of the full sleep evaluation data, including graphs; the summary report is usually about 5-6 pages whilst that dictated report is just 1-2 pages.

By all means, make it clear to this doctor that you view the entire sleep evaluation w/GREAT SKEPTICISM BASED ON HIS DICTATED REPORT! Point out his comments you found especially disturbing and inaccurate. Make it clear you are or have considered getting a second opnion given the erroneous info in his dictated report. You just might save the next patient similar worries!

Actually, tho, the data itself, i.e. desaturations number and duration, etc. will be accurate in the summary data as they are recorded and reported by a pulse oximeter and software and by the EEG, etc., all those wires were attached to some recording machine. Most of us experience more "events" during REM sleep and also when sleeping on our backs.

Keep in mind that pain and medications can also affect your sleep so you may well have more going on than "just" sleep apnea AND that sleep apnea can contribute to the pain you are experiencing.
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Postby gypsysavage » Tue Sep 04, 2007 4:15 pm

pseudonym wrote:Hello Barb, see my answer to you in the main help forum.

Someone correct me if I'm wrong, I believe the 16.6 arousal index means you wake up an average of 16.6 times per hour. This is due to whatever -- apneas, hypopneas, alpha wave intrusions, even unknown arousals. My sleep study reports gave a breakdown on the arousal events, sometimes there are unknown events, did your report indicate you had any? If so a repeat study with PES (esophageal pressure monitoring) *might* be indicated, a sleep doc would know for sure if you are a UARS candidate (upper airway resistance syndrome) which PES will monitor. I was not diagnosed until my second study because I didn't have PES until then (I have severe hypopnea/UARS we found out through PES).

Hope that helps, Blessings,
--pseudonym


Wow... if I am wakening that many times, no wonder I am tired.. lol. I have no idea what a PES is, but as I said, I haven't consulted with a specialist yet. This is a start and it's not that I stormed in there to diagnos myself. I just am so dang tired all the time and it's obvious to be that awakening short of breath is not normal...

I am hoping by the time I talking with a specialist, he will really work with me so I can start getting some quality rest.

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Postby gypsysavage » Tue Sep 04, 2007 4:36 pm

Linda wrote:Hi Gypsysavage,

The number I don't see is AHI or RDI. AHI is the apnea/hypopnea index, how many you had per hour. RDI is similar. Arousal index may or may not be the same as AHI, for arousals can occur for more than one reason.

Severity is defined by AHI or RDI (how many you averaged per hour). Mild is 5-15 per hour; moderate is 15-30; severe is 30 or more per hour. If your AHI was the same as the 16.6 arousal index, that would put you in the low moderate range. I can approximate from the 43 apneas over a 4 and a half hour period as about 10 or so (my math isn't so good), and if that's your AHI, that is in the mild range.

But mild doesn't mean you don't have sleep apnea. An AHI of over 5 is considered to be sleep apnea. And I've seen plenty of people who have mild apnea and real bad symptoms. It can be a function of how long the apneas were (imagine holding your breath for 10 to 30 seconds many times an hour) as well as oxygen desaturations and how long you might have been suffering from the condition. Bottomline is you have sleep apnea and that is likely the reason you feel so bad. Plus you have atrial fib and that can make you feel bad. But atrial fib can be caused by untreated sleep apnea. You definitely have many of the classic symptoms. Untreated sleep apnea puts your body and life at risk, so I wouldn't be too focused on the severity.

Is the sleep study report a copy of the one generated by the sleep study center? (I'm assuming you had a study at a sleep study center) Usually those reports are from the sleep study center and the doctor receives a copy. Are you going back for the second sleep study where they test you using cpap and mask? In effect, that is like a second opinion. They test you almost the same as the first study, but they give you the cpap and mask and gradually increase the cpap pressures to see what pressure best controls your apneas.

Sleeping in a recliner? Yes, some people will do that as they wait for their cpap sleep study or to get their equipment, and that can ease some of the symptoms and lessen the apneas. But don't be fooled by that, for it does not eliminate the sleep apnea. And besides, who sleeps that way?

Sounds like you have sleep apnea. That may seem like bad news, but it can be very good news. If your symptoms and even your atrial fib and other health issues are caused by the sleep apnea, then cpap treatment can make a world of difference. Take a look at the topic Success Stories posted at the top of this section, you can see how cpap has helped people.


Linda


Linda,

Too bad you're not my doctor... lol. My treatment has been so lame. The report was generated by a machine I would believe because of the way it looks. Then the doctor has written a letter based on the questionnaires I filled out and this study.

All I got was a comment from the nurse that "I probably wouldn't qualify for a CPAP". Sounds like a good diagnosis doesn't it? The night I did the study I slept reasonable well. A lot of nights I don't. My atrial fib flared up about the same time this started, so I know for certain they are connected. In fact, when my AF started, it occurred mostly at night and has not started overlapping into the day.

I did my math like you because there wasn't a stated ratio. It also reported I had

0 obstructive Apneas
0 Mixed Apneas
0 Central Apneas
43 Hypopneas

It also noted 0 leg jerks but then the doctor stated I had leg jerks thoughout the study. So, who am I supposed to believe? And, if the doctor is right, then how am I supposed to believe the other results on the test. Seems to me the whole study has been lacking.

They didn't even make me a follow up appointment and expected me to wait 3 MONTHS until my regular appointment with my migraine neuro who I see every 3-4 months for botox injections for migraines. Three months... guess they really care.

You said sleeping in a recliner might help. That is interesting AND very coincidental. For the past few years I have had shoulder problems. I had my first surgery in 2005 and another one in May 2006. Just until the first of the year, I have been sitting in a semi-propped position because laying flat put too much pain and pressure on my shoulders. WOW - do you think I might have had this for longer than I imagine and that just recently beginning to sleep in a flatter positon since the first of the year has triggered this condition that's been waiting to pounce? That is something I will definitely play around with. Recliner here I come... lol Some nights it's really bad, especially if I have a day of AF.

Geesh Linda, I tell all my doctors all of these things, why must I go to forums and research online to diagnose what the heck is wrong with me. I'm getting very distrustful of doctors...

Thanks for your reply. I learn a little more from each of you!!

Barb
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Postby gypsysavage » Tue Sep 04, 2007 4:49 pm

CrohnieToo wrote:It sounds like all you have in hand is the dictated results report from a doctor who has a "generic" form to which he adds what he considers the pertinent info from the summary report and data generated during your sleep evaluation. I encountered the same "risk of falling asleep while driving", etc. and I hit the roof because the ONLY incidence I reported on the form they have you fill out was falling asleep whilst watching TV. Like you I hit the roof! I raised holy h*ll about that "driving" comment!!! I don't even know who the doctor was who dictated the report, I've never seen him. My appointments are all w/one of the main sleep doctors at this sleep lab - most likely because I did raise such a stink.

To ease your mind I would insist on a copy of the full sleep evaluation data, including graphs; the summary report is usually about 5-6 pages whilst that dictated report is just 1-2 pages.

By all means, make it clear to this doctor that you view the entire sleep evaluation w/GREAT SKEPTICISM BASED ON HIS DICTATED REPORT! Point out his comments you found especially disturbing and inaccurate. You just might save the next patient similar worries!

Actually, tho, the data itself, i.e. desaturations number and duration, etc. will be accurate in the summary data as they are recorded and reported by a pulse oximeter and software. Most of us experience more "events" during REM sleep and also when sleeping on our backs.

Keep in mind that pain and medications can also affect your sleep so you may well have more going on than "just" sleep apnea AND that sleep apnea can contribute to the pain you are experiencing.


Chrohnie,

OMG - So it happens to other people tooooo? It kinda makes me feel better... lol... sorry. However, this doctor didn't say I had the risk of falling asleep. He said "She OFTEN FINDS HERSELF FALLING ASLEEP when she does not intend to such as while driving, eating, watching televion, watching movies (which I can accept), conversing or doing her job... I have NEVER fallen alseep while driving, eating, conversing, or doing my job, let alone often for geesh sake. That really bothers me.

I called today to ask for copies of the questionnaires I filled out to see how much information I did give them. I was really given a hard time for asking for this. I asked for it once and was only given part of the information. They told me unless I asked for it specifically they probably didn't copy it. I just told them I thought all information related to the study would be given to me. The staff at this office are very rude - I wish I had gone somewhere else for this study... Perhaps I can have one of my other doctors refer me to a different specialst for another interpretation of the results because they are, as you say, generated by leads on your body.

He seemed to think pain was a larger part of my problem than apnea. The thing is - and what doctors need to realize - I have several things going on. I have chronic pain from a shoulder condition, suffer from chronic migraines, and have atrial fib. ALL of those things can be interrupting my sleep. How can I find ONE doctor to help me with all of them??? It often seems a specialist isn't itnerested in anything but one area of your body and that disturbs me.

I am consulting with a new primary next week and she is a DO. I find they are more holistic in their approach so maybe she will be the fresh start I need...

Thanks for your feedback

Barb
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Apnea & fibs

Postby LaPopessa » Tue Sep 04, 2007 6:26 pm

I can't talk too much about the technical stuff & test results, fortunately there are folks here who are very good at that. But I can tell you that I have had afibs off/on for about five years now. Never more than a day at a time, usually a few hours at a time. But it was getting worse & more often. Then I got the apnea diagnosis and have been on CPAP for 2 1/2 months. I am hoping that the apnea was the cause behind my fibs and that this will help those go away. Going good so far.
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Postby CrohnieToo » Tue Sep 04, 2007 6:36 pm

I've always been a firm believer in DOs - until the last 15 years or so. They are becoming more and more "medical" and less and less osteopaths. There are a few good ones still around so I wish you great luck with this new Primary you are scheduled with!

I rely heavily on my family doctor and I insist that EVERY test, EVERY procedure, EVERY lab drawn, etc. all go to my family doctor, regardless who orders them. I refuse to use Quest Labs because they will ONLY send results to the ordering physician!! When I run into a specialist who DOESN'T keep my family doctor up to date on what the specialist is up to I make it known that I WANT my family doctor KEPT INFORMED or I will find another specialist!

My family doctor sees me as a complete, live, human being; NOT a GI tract, set of lungs, reproductive tract or whatever. I really feel a GOOD family doctor is the key to maintaining our good health and solving any health problems we do run into. Mine has made some good referrals and the one referral that didn't work out the specialist was great but her office staff was impossible and horribly disorganized!!!

That questionaire you filled out, the data from your sleep evaluation, etc. are all part of your medical records and in the USA patients have a LEGAL RIGHT to COPIES of ALL of their medical records. Put your request in writing, send it Certified Mail, Return Receipt Requested. If they fail to comply you have them by the short hairs. They do have the right to charge you a "reasonable fee" so you might want to request that they be sent to your family doctor - just be sure to specify your "entire medical file". Then go thru it and if they left anything out let them know you are aware they failed to send the entire file. I had ONE doctor try to pull that stunt. I called and asked if they would be more responsive if my attorney contacted them for my file. Two days later my doctor had the full file - and so did I! Fortunately, I have a close friend who is an attorney so it wasn't an idle threat. I talked it over w/her first.

Good luck! Hopefully, this sleep doctor will get his act together and clarify things for you by going over your data w/you and explaining things in detail.
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Postby gypsysavage » Wed Sep 05, 2007 1:16 pm

CrohnieToo wrote:That questionaire you filled out, the data from your sleep evaluation, etc. are all part of your medical records and in the USA patients have a LEGAL RIGHT to COPIES of ALL of their medical records. Put your request in writing, send it Certified Mail, Return Receipt Requested. If they fail to comply you have them by the short hairs. They do have the right to charge you a "reasonable fee" so you might want to request that they be sent to your family doctor - just be sure to specify your "entire medical file". Then go thru it and if they left anything out let them know you are aware they failed to send the entire file. I had ONE doctor try to pull that stunt. I called and asked if they would be more responsive if my attorney contacted them for my file. Two days later my doctor had the full file - and so did I! Fortunately, I have a close friend who is an attorney so it wasn't an idle threat. I talked it over w/her first.


Chronie,

Well, you said that right - I should have said "entire medical file related to sleep study". Since I paid $15 I requested the doctor's notes from 2006 to current from my migraine neuro. I am going to give them a week to mail the forms I filled out to me, then I will call and tell them I will pick them up when they are ready and have them give me a date. They made the first set of copies within a week, so there is no reason the second set of copies should take longer than 1-2 weeks. If it does, I will then know for a fact they are putting me off. I want to know exactly how I answered these things if I am going to discuss the results with the doctor - the one who got the overview so wrong. I mean, how can I dispute what he said if I can't remember what I said? lol

I have already made the decision to move on and no longer receive treatment from this group. I am certain other neurologist in my area give botox injections for migraines. In fact, my pain doctor told me, after reading a letter from my neuro, that my doctor wasn't giving me the full vial of botox!! My pain doc said he would give me the whole vial at the same charge. Since I pay $600 for these injections, I would like to go 4 months between them. The fact he is withholding 10cc's from me has irritated me. My pain doc told me (and I don't think he would have said this had it not been true) that sometimes small amounts are kept and given to other patients. Since my neuro schedules all his botox patients on same day, makes me wonder if that is true. Especially since I told my neuro that my neck was feeling tightness and pain even after 3 months. You would think he would certainly give me the 100 cc's. After reading a year or so back in his notes, he used to give me as much as 97.5 ccs....

Oh well, this post has gone on more about the quality of doctors than sleep disorders, it just unfortunately so happened that it was this doctor that referred me to the sleep specialist within the same office...

And, they are DO's, so it's more disappointing that this one didn't pick up on the correlation that my AF, shortness of breath at night started around same time... because in my mind, it seems relative, especially after researching and reading other posts.

It seems the cpap has helped many not only with sleeping, but with their AF. It would be wonderful if getting some oxygen at night would enable me to get off some of these nasty meds.

Thanks again for replying. It helps so much to hear from others in similar situations.

Barb
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Postby HouseDO » Thu Sep 06, 2007 2:27 pm

CrohnieToo wrote:I've always been a firm believer in DOs - until the last 15 years or so. They are becoming more and more "medical" and less and less osteopaths. There are a few good ones still around so I wish you great luck with this new Primary you are scheduled with!



This has been noticed in the profession, believe me. There's a degree to which DOs have to adopt a lot of what MDs are doing simply because medicine is medicine. The approach is what differs, and unfortunately a lot of today's DO students are people who tried to get into MD schools and didn't, so it ends up being a backup plan. DOs who started out wanting to be DOs are getting fewer and fewer. Schools attempt to weed these people out during the admissions process but it doesn't always work.
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Postby gypsysavage » Fri Sep 07, 2007 9:18 pm

HouseDO wrote:unfortunately a lot of today's DO students are people who tried to get into MD schools and didn't, so it ends up being a backup plan.


House,

Just had to reply to your comment because SO many people think DO's are less of a doctor than MD's and have less training. Actually, they have as much training, if not more than regular MD's, especially for a family practice. Here are their requirements:

DO vs. MD

DOs and MDs are alike in many ways:

Applicants to both DO and MD colleges typically have a four-year undergraduate degree with an emphasis on science courses.


Both DOs and MDs complete four years of basic medical education.


After medical school, both DOs and MDs can choose to practice in a specialty area of medicine—such as psychiatry, surgery, obstetrics, or sports medicine—after completing a residency program (typically two to six years of additional training).


Both DOs and MDs must pass comparable state licensing examinations.


DOs and MDs both practice in fully accredited and licensed hospitals and medical centers.


Both are medical doctors; MD is specifically Doctor of Medicine and DO is Doctor of Osteopathic Medicine.

What Makes DOs Different?

DOs can perform surgery, child delivery, treat patients, and prescribe medications in hospitals and clinic settings.


DOs look at the "total person." Osteopathic physicians focus on preventive care. Instead of just treating specific symptoms or illnesses, they look at the whole body.


DOs receive extra training in the musculoskeletal system, which is comprised of the nerves, muscles, and bones. This training gives DOs a better understanding of how an injury or illness in one part of the body can affect another part of the body; therefore, DOs have a therapeutic and diagnostic advantage.


DOs use what is called osteopathic manipulative treatment (OMT). OMT is a technique in which the DOs use their hands to diagnose injury and illness, giving special attention to the joints, bones, muscles, and nerves. Manipulations improve circulation, which in turn, creates a normal nerve and blood supply, enabling the body to heal itself.


So many people think DO's are quacks and this is an old wives tale. I think as people get more involved with holistic health care, DO's will become more popular.

Barb
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