A guest recently posted a concern about the risk of people taking things into their own hands, or posters here that are (borderline / almost) giving medical advice without a license. This is a legitimate concern, and I would like to expand upon that thought. It should also be noted however, that a license to practice medicine is no guarantee of competency. There is great risk in NOT questioning authority.
As someone who spent almost 7 years of his life as a semi-vegetable due to a doctor (highly regarded, published, and nationwide lecturer) ignoring a fact brought to his attention very early during the course of ‘treatment’ (Me: “Doc, my girlfriend says that I stop breathing when I’m asleep, could that have anything to do with this?" Doctor: “No, it has absolutely no relevance whatsoever”). This SOB actually had Dr. Dement’s textbook on sleep medicine sitting on his shelf. I guess it looked good as an ornament, but just imagine if he actually read it? Yet I digress…
Every patient is responsible to be his or her own best advocate. Many (most) patients just blindly rely upon an “expert” without question; blind obedience. I for one believe that if someone is present here at this forum, they are being proactive in their approach to treatment. This fact is significant; we are not the 'average patients'; i.e., a lemming headed right off a cliff. (remember, don’t drink the Kool-Aid. ) Everyone here should be recognized & applauded for the fact that they are seeking out information, or providing information to others.
Of course, prior to making any significant change, expert professionals (i.e. doctors) should ALWAYS be consulted; but the “expert” should also be challenged to present a logical explanation to support their diagnoses & conclusions. This of course is dependent upon the patient having enough innate intelligence AND information to draw upon when assessing the “expert’s” conclusion. I won’t attempt to address the intelligence side of the equation, but forums like this help provide the vital information - information that would otherwise be unobtainable to the average patient.
On this forum, there is a tremendous amount of cumulative experience. This wealth of experience cannot be underestimated in its contribution to the knowledgebase. There is a lot of truly excellent factual information here, and there are even some professionals onboard. There are also opinions, hypotheses, logical deductions & assumptions – all to be taken with a grain of salt. Some opinions, hypotheses, & assumptions, although logical, may be incorrect. It is up to each person to assess what is factual versus not.
P.S. My personal “code of ethics”: The worst thing possible is to disseminate inaccurate information as being factual. To this end, I never wish to make a statement of fact, unless I am 100% certain of its veracity. Otherwise, I make a qualifying statement, such as “I’m not sure, but…” “I think that…”, “to the best of my knowledge…”. This is a practice that may be helpful in keeping this (or any other) forum up to its best possible standard of quality.
Best wishes to everyone here, and a huge THANK YOU!
A rant and a rave: About the best way to use this forum
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A rant and a rave: About the best way to use this forum
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“Ignorance” is not pejorative; it is simply a lack of information. “Stupidity” is an inability to utilize available information.
how to use this site?
It says at the bottom of every page on what the rules are. But this site is just a informational site, an exchange of ideas and experiences where one becomes more informed (hopefully) where they can then ask their doctor the right questions and hopefully understand the answer they receive back.
when a newbie comes here many don't know the difference between a Flow Limitation, Hypopnea or an apnea. I know that was the way I was when I first started, but luckily there were guys like SWS, Perry and others on other boards like this who explained things and shared their knowledge where we all learned collectively towards a better understanding of our disorder.
I also believe a doctor will pay more attention to you during a visit if you have all the facts in front of you and ask the right questions. My doctors dread it when I see them, they now just say "what do you think it is?" then they either agree or suggest alternatives. I called my Dermatologist the other day made an appointment that wasn't my regular annual checkup, he is a Professor at UCSF Dermatology, he says what are we in for? I said this lesion about the size of a dime on my forearm wasn't there during my last checkup and now looks like a BCC to me. He looks at it, well it could be benign. They cut it off and sent it to UCSF pathology it came back precancerous. I now have to go back later this month and have the rest burned off with nitrogen and I should be good to go for one more time around.
Years ago I spent a lot of time outdoors water skiing hiking, rafting etc. One day I got back from skiing it was overcast day and very hot. Everyone on the houseboat says what is that black thing on your chest? It seemed to appear that day within hours. I didn't think much of it, went to my doctor for annual physical, he says what is up with that mole? It was about the size of pencil eraser and shaped like a peanut then, so he says let's biopsy it. So he does one of those punch biopsy and sends it off to Quest Diagnostics. It comes back benign, I have a copy of the pathology report in my medical file. So 5yrs later I see a hematologist who is also an oncologist he says man I don't like the looks of that mole on your chest. I show him the pathology report, he says you know I'm going to touch base with your GP on this anyway. I said okay, I didn't get out of his parking lot before my GP was on my cell phone for me to drop by his office on the way home. He cut that sucker out of my chest, put a Bullwinkle band-aid on it and sent the sample off to UCDavis Pathology where it came back Malignant Melanoma with depth. I then had to go back to Dermatologist where he cut another good 3" football shaped piece of skin out of my chest, that skin was 1/2" or more thick. It was like getting a chin lift after he stitched that hole up. Melanoma is one of the worst spreading cancers there is. The point is if I hadn't learned about all the different forms of skin cancer I wouldn't have spotted that BCC and gotten it taken care of before it became a problem. It wasn't but about 2 weeks after I had that melanoma removed from my chest I got a call from Mom, appears my 38yr old nephew had a melanoma on his back they didn't catch, when they did they gave him 2 weeks, he was calling Grandma to say good bye. He died 2 weeks later on the day as it had spread to his lungs and elsewhere.
So there is nothing wrong with a little bit of knowledge in my opinion.
It says at the bottom of every page on what the rules are. But this site is just a informational site, an exchange of ideas and experiences where one becomes more informed (hopefully) where they can then ask their doctor the right questions and hopefully understand the answer they receive back.
when a newbie comes here many don't know the difference between a Flow Limitation, Hypopnea or an apnea. I know that was the way I was when I first started, but luckily there were guys like SWS, Perry and others on other boards like this who explained things and shared their knowledge where we all learned collectively towards a better understanding of our disorder.
I also believe a doctor will pay more attention to you during a visit if you have all the facts in front of you and ask the right questions. My doctors dread it when I see them, they now just say "what do you think it is?" then they either agree or suggest alternatives. I called my Dermatologist the other day made an appointment that wasn't my regular annual checkup, he is a Professor at UCSF Dermatology, he says what are we in for? I said this lesion about the size of a dime on my forearm wasn't there during my last checkup and now looks like a BCC to me. He looks at it, well it could be benign. They cut it off and sent it to UCSF pathology it came back precancerous. I now have to go back later this month and have the rest burned off with nitrogen and I should be good to go for one more time around.
Years ago I spent a lot of time outdoors water skiing hiking, rafting etc. One day I got back from skiing it was overcast day and very hot. Everyone on the houseboat says what is that black thing on your chest? It seemed to appear that day within hours. I didn't think much of it, went to my doctor for annual physical, he says what is up with that mole? It was about the size of pencil eraser and shaped like a peanut then, so he says let's biopsy it. So he does one of those punch biopsy and sends it off to Quest Diagnostics. It comes back benign, I have a copy of the pathology report in my medical file. So 5yrs later I see a hematologist who is also an oncologist he says man I don't like the looks of that mole on your chest. I show him the pathology report, he says you know I'm going to touch base with your GP on this anyway. I said okay, I didn't get out of his parking lot before my GP was on my cell phone for me to drop by his office on the way home. He cut that sucker out of my chest, put a Bullwinkle band-aid on it and sent the sample off to UCDavis Pathology where it came back Malignant Melanoma with depth. I then had to go back to Dermatologist where he cut another good 3" football shaped piece of skin out of my chest, that skin was 1/2" or more thick. It was like getting a chin lift after he stitched that hole up. Melanoma is one of the worst spreading cancers there is. The point is if I hadn't learned about all the different forms of skin cancer I wouldn't have spotted that BCC and gotten it taken care of before it became a problem. It wasn't but about 2 weeks after I had that melanoma removed from my chest I got a call from Mom, appears my 38yr old nephew had a melanoma on his back they didn't catch, when they did they gave him 2 weeks, he was calling Grandma to say good bye. He died 2 weeks later on the day as it had spread to his lungs and elsewhere.
So there is nothing wrong with a little bit of knowledge in my opinion.
I agree that being equipped with knowledge about your medical condition is paramount and that this site - due to personal experiences, outcomes of different treatment are invaluable on this site. If not for this site and people feeling ok to recommend things they have done or tried, I would have given up on cpap treatment probably the first week.
And snoredog, am glad you caught the skin cancer and hope thingsa re going well
I hear you on the dr thing, too - mine also is somewhat leery of meeting with me as I come with quite a few questions - and question treatment as well. I am getting nasal surgery soon and the ENT doc just about fell off his chair when I started talking knowledgably about turbinates, nasal moisture etc. It was pretty funny actually - he was telling me about it and was describing it in very simple terms and I wanted more detailed info
he said - one way is to reduce the size of turbinates and blah blah blah
so I said, well I thought that reducing the size of a turbinate can result in a lack of moisture being produced in the nasal passage and then would have a larger airway but would have a new problem of being dry due to cutting the turbinate - he was pretty shocked and then said, I worked at John Hopkins (trying to convice me or impress me - haha) for 5 years and previously dr's would cut the outside of a turbinate and severe dryness and other complications would occur, but now we go into the turbinate and take out the mass in teh middle instead, leaving the outside of it that assists with moisture alone and those complications are not a problem anymore
I also know my dr. appointments tend to take a little longer because I don't let them leave until I have all the answers I wanted - even when they squirm to get away
And snoredog, am glad you caught the skin cancer and hope thingsa re going well
I hear you on the dr thing, too - mine also is somewhat leery of meeting with me as I come with quite a few questions - and question treatment as well. I am getting nasal surgery soon and the ENT doc just about fell off his chair when I started talking knowledgably about turbinates, nasal moisture etc. It was pretty funny actually - he was telling me about it and was describing it in very simple terms and I wanted more detailed info
he said - one way is to reduce the size of turbinates and blah blah blah
so I said, well I thought that reducing the size of a turbinate can result in a lack of moisture being produced in the nasal passage and then would have a larger airway but would have a new problem of being dry due to cutting the turbinate - he was pretty shocked and then said, I worked at John Hopkins (trying to convice me or impress me - haha) for 5 years and previously dr's would cut the outside of a turbinate and severe dryness and other complications would occur, but now we go into the turbinate and take out the mass in teh middle instead, leaving the outside of it that assists with moisture alone and those complications are not a problem anymore
I also know my dr. appointments tend to take a little longer because I don't let them leave until I have all the answers I wanted - even when they squirm to get away
I can relate to the melanoma thing.
I have had WAY too much sun in my life. A dental hygenists actually got me worried about an odd shaped mole. Note my GP had never mentioned ANY concerns at my regular checkups. I investigated, got into a skin speciaist, got a biopsy and it was precancerous and good I caught it early.
I have been on regular visits since AND I have "taken over" responsibility for my skin care and further exposure. This is no small thing since I spend a LOT of time outdoors.
Fast forward a bit....I worked for a bully for awhile. He used to make fun of how I was so careful about the sun. I TRIED to warn him, albeit I am NOT a doctor, that he might be concerned with his love of waterskiiing and obvious constant sun exposure. He would just laugh at me and make fun of me.
He was dead from melanoma within a year.
Other people can wait for the "Trained Professionals" to take care of them. I would prefer to educate myself, take responsibility, and use the Doctors and other professionals AS A RESOURCE for the application of their skills.
Of course this means I might have to put up with some flak for pushing into the fringes of healthcare, like using 45 SPF for my skin and dental appliances for my apnea.
But I sleep sounder at night.....literally.
I have had WAY too much sun in my life. A dental hygenists actually got me worried about an odd shaped mole. Note my GP had never mentioned ANY concerns at my regular checkups. I investigated, got into a skin speciaist, got a biopsy and it was precancerous and good I caught it early.
I have been on regular visits since AND I have "taken over" responsibility for my skin care and further exposure. This is no small thing since I spend a LOT of time outdoors.
Fast forward a bit....I worked for a bully for awhile. He used to make fun of how I was so careful about the sun. I TRIED to warn him, albeit I am NOT a doctor, that he might be concerned with his love of waterskiiing and obvious constant sun exposure. He would just laugh at me and make fun of me.
He was dead from melanoma within a year.
Other people can wait for the "Trained Professionals" to take care of them. I would prefer to educate myself, take responsibility, and use the Doctors and other professionals AS A RESOURCE for the application of their skills.
Of course this means I might have to put up with some flak for pushing into the fringes of healthcare, like using 45 SPF for my skin and dental appliances for my apnea.
But I sleep sounder at night.....literally.
Remember:
What you read above is only one data point based on one person's opinion.
I am not a doctor, nor do I even play one on TV.
Your mileage may vary.
Follow ANY advice or opinions at your own risk.
Not everything you read is true.
What you read above is only one data point based on one person's opinion.
I am not a doctor, nor do I even play one on TV.
Your mileage may vary.
Follow ANY advice or opinions at your own risk.
Not everything you read is true.
woozle wrote:
the best way I found to keep them there for the alloted time is to stand with your back to the door while asking the questions. They cannot get out unless they either move you or answer your questions.I also know my dr. appointments tend to take a little longer because I don't let them leave until I have all the answers I wanted - even when they squirm to get away
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ignorant1:
* * * * APPLAUSE * * *
Snork1 wrote:
I've also found that doctors are not likely to volunteer much information UNLESS questions are asked, then they will get into a discussion.
* * * * APPLAUSE * * *
Snork1 wrote:
I agree, and will comment further that the Better doctors WILL APPRECIATE an educated patient instead of being on the 'defensive'.Other people can wait for the "Trained Professionals" to take care of them. I would prefer to educate myself, take responsibility, and use the Doctors and other professionals AS A RESOURCE for the application of their skills.
I've also found that doctors are not likely to volunteer much information UNLESS questions are asked, then they will get into a discussion.
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As someone who worked in teaching hospitals all my life, I'd like to just put a little perspective on things. As far as the first of Snoredog's lesions go, in the end the MD DID do a biopsy and send it off for histology. And as far as the second (chest) one, there were years between the first 'sighting' (which may honestly have been truly benign looking) and the second exam - at which time the MD again did do his job and take the biopsy. If doctors biopsied every single spot that anyone ever developed the first time they noticed them, hospitals would be overflowing with derm. patients all day long, and nothing else would ever get looked at. Doctors have to be their own 'triage' nurses in a sense, and if you feel that something dismissed early on as being benign is continuing to gtow over time, then don't wait years for a second exam, go back again in 6 mos, or sooner, or a bit later, but don't blame the MD's for not crying 'emergency' over every little lesion that pops up. Rant over!
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