We're Patients Not Doctors

[Doc]

I know what I'm about to write will draw broad criticism from all corners of the forum. As usual, I don't care, it needs to be said.  I've spent the last several days reading in far greater detail than usual, posts from senior members across the site. I have to say I'm very concerned that some of my fellow AN "patients" appear to have taken their personal experience as a literal education that somehow qualifies them to question courses of treatment laid out by Medical Doctors. Some going as far as to suggest alternative treatment regiments as better or somehow more effective. I find that conduct frightening . I can only imagine how a newly diagnosed AN'er might interpret what they read in response to their posts?

I was told the mission of this forum is to offer comfort and reassurance to those new to the AN experience not impart treatment advise to people who, above all, are emotionally vulnerable and likely easily influenced by the handle "Hero Member." If I were on the board at ANA I'd be concerned that well meaning forum members offering treatment advise are "writing checks" the association most certainly can't cash!

I've related my personal experience on these pages as a patient. I've told of hospital stays, my bum left eye and still paralyzed face. Never once have I suggested that CK for example is a better course of treatment than a translab. If I had, I'd expect to be reminded I lack a medical degree to be offering such an opinion. Just saying! I've had the good fortune to meet other AN Patients, nice people all, but not an expert among them!

Fire at will  

Doc

[Jim Scott]

Doc ~

I appreciate your concern but would have preferred you presented it privately to the moderators, whose job it is to 'police' the messages and do whatever is necessary to keep them on track, avoid controversies and offensive comments, etc.  I think we generally succeed.  However, your expressed concern is somewhat puzzling, as in numerous posts, I've seen posters employ the phrase "I'm not a doctor...." when offering advice.  Frankly, we tend to avoid giving specific 'medical' advise on the basis that as non-physicians communicating with someone we don't know much about, much less their entire medical history, we are not qualified to offer specific treatment advice beyond, as you have, offering our personal experience and adding whatever information we may have, as a patient, not a doctor.  However, posters have a right to express an opinion, within the bounds of civility and good taste, but I'm not aware that there are posters offering specific treatment advice to other AN patients.  Often, treatment suggestions are made (which can be ignored) but the choice of treatment always remains with the patient.  I would suggest that the next time you see this issue arise, please PM me or any of the moderators so that it can be addressed, privately.  Thanks, Doc.

Jim

[Kaybo]

I must say that I was VERY shocked to read this post!  I agree with Jim Scott that over and over I have noticed that the words "I am not a Dr." have been used.  I truly cannot remember a case when someone has tried to persuade someone that one way was MEDICALLY better than the other.  I feel that everyone is entitled to their own opinion and sometimes those opinions shine through, but as Jim pointed out, as adults we can take it or leave it.  In my case, medicine has progressed SO MUCH since my treatment, that I could not say CK over surgery or vice versa - I wasn't given that option nor I do think it was readily available then.  The reason why I stick around here (& I believe most other "HEROES") is to purely ENCOURAGE others and relate that there is life after a "not so good" outcome!

K   

[Kaybo]

I must say that I think that it is a bit ironic that the person that pointed this out goes by the screen name "DOC" and we all thought that HE was a Dr. to begin with!!  LOL!!

K   

[msmaggie]

Hm-m-m-m-m.... I guess from time to time some opinions about a particular treatment or dr. may be somewhat forceful, but overall I think those are few and far between.  I agree that we need to make sure that we are just voicing our "opinions" based solely on our own experience, but I think most of us bend over backwards to offer support, encouragement, and a listening ear.  I wish I had a nickel for every time someone said "I am not a dr...." I think we are also good about referring the newbie to someone on the forum who has had a similar experience or symptom.  I certainly hope we have not traumatized anyone!  I think we still are a good source of info for those who come to the forum looking for help.  If they read more than a few posts, then they should get a good overview.

Priscilla

[dalern]

I will jump in here and say that I have often mentioned that I am a nurse, but am speaking as a PATIENT when relating my experience.  I see people sharing their experiences and even acknowledging that different doctors prefer different treatments.  I have seen some posts where a Forumite will suggest someone seek a second opinion.  I see nothing wrong with that, as the choice is still in the hands of the patient.  Sometimes we read things that don't sound right or sound like a doctor does not have a lot of familiarity with a specific treatment or procedure.  It makes perfect sense for a lay person to suggest another opinion be sought.  I can't find where this post was relevant to anything I have read.  I will say that at one point a couple of months ago, I found one very inappropriate post and I reported it to one of the moderators.  They dealt with it.

Just my 2 cents.
~Dale

[nanramone]

There seems to be a little bit of a war going on here, so I hesitate to get involved...but I very recently read a post in which a senior member (Jim) suggested that it might be ok if someone doesn't get an MRI that was prescribed by a physician, since this person was 5 years post surgery, so it would probably be safe. (if memory serves me) I don't remember if the "I'm not a doctor" disclaimer was also added, and I think it doesn't matter  -I was left with the impression that the person giving advice was overriding the recommendation prescribed by a doctor.

I was a bit bothered when I read this.

I don't need to come here, and I do anyway, hoping to help someone by talking about my own experience. Unfortunately, there is uncomfortable adversity here, so I will probably be leaving soon....

[Doc]

Kay - I provided an example of a comment I felt was inappropriate in an earlier PM to Jim Scott. In response he suggested the member was surely well intentioned however, he would still run it past other moderators for their take. He did hint it'd probably be given a pass since it was a week old and I was the only one to take issue with the comment. I'm ok with that. Mission Accomplished - I got the attention of a respected member of the forum...and yours! That was a cheap shot  think about it when you reread your comment about my nick name which I cleared up my very first week on the forum.  While I don't believe I need to explain it, again, for your benefit I will. I've gone by Doc nearly all of my 53 years, thanks to my father deciding he wanted a Doctor in the family, if only in "nick" name. The idea for the name actually comes from Bugs Bunny...what's up Doc? Bugs came along about the same time I did. For what its worth, I've now reread this paragraph 11 times before pressing post...!

Thanks for chiming in Maggie...appreciated!  "nanramone" no war here...just an exchange of ideas...although I'm often inclined to follow your lead and move along. I stick around to share what has worked for me in the year since my Brain Booger was removed (I Love that - Brain Booger) hoping somebody might find some comfort in knowing it's not all bad!

One more thought while I've got this high priced typewriter fired up and at the ready. A few weeks back I attended our Atlanta area group meeting. There was a woman at the meeting, new to the group. As usual we went around the table describing our AN experiences. She was recently diagnosed and I believe had already decided on a course of treatment...and very likely a bit frightened listening to the rest of us. Anyway, she was so upset she couldn't get through introducing herself without breaking out in tears. That troubled me. I felt somewhat  responsible for the outpouring of emotion as I was as blunt at that meeting as I am on these pages. No hidden message here...just stating fact...and the fact is words are very powerful and as much as we like to think that in the end people make their own choices, they're still heavily influenced by what others who've been through the ordeal have to say.

Take Care!
 
Doc

[questions?586]

Hi Folks:

As a newbie here I want to assure you that I have felt comforted by everyones opinions. I think it's clear that these are lay opinions and  I wouldn't fret so much.  About the tears; they just well up when least wanted.  It doesn't mean you are more worried than before.  For me, who is usually controlled, tears are part of the huge unknown. Don't feel bad about being blunt, Doc.

I would let this subject drop unless you feel compelled to continue it privately.

Thanks so much for keeping up the posting and sharing with us!   

Starr

[Kaybo]

Doc~
I had and have no intention of making this a more controversial thread than what was here - I chimed in on my opinion - hoping to reiterate my take on what I have seen here over the years...as a whole.  Again, I hope that this Forum continues to help as many, many people as it has already.  I think, no, I KNOW (from what so many people have told me) that I continue to be a POSITIVE contributor on this site and I will continue to offer my compassionate, listening ear.

And, for what it is worth...I was just making a "funny" point about the name...I had just told my sweet hubby earlier this evening about how I thought the name was IRONIC - and told him the whole story about how your father gave you that nickname as a child.  Yes, I remembered the whole story as you told it the 1st time...

K   

[opp2]

Words are very powerful Doc. I'm reminded of the Desiderata. Perhaps a good read for me before I say what I really am thinking.

-- written by Max Ehrmann in the 1920s --
Not "Found in Old St. Paul's Church"! -- see below

Go placidly amid the noise and the haste,
and remember what peace there may be in silence.

As far as possible, without surrender,
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even to the dull and the ignorant;
they too have their story.
Avoid loud and aggressive persons;
they are vexatious to the spirit.

If you compare yourself with others,
you may become vain or bitter,
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs,
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals,
and everywhere life is full of heroism.
Be yourself. Especially do not feign affection.
Neither be cynical about love,
for in the face of all aridity and disenchantment,
it is as perennial as the grass.

Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline,
be gentle with yourself.
You are a child of the universe
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God,
whatever you conceive Him to be.
And whatever your labors and aspirations,
in the noisy confusion of life,
keep peace in your soul.

With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful. Strive to be happy.

[leapyrtwins]

Truthfully, Doc, if Kaybo hadn't mentioned your ironic user name, I would have.  As you know, I was "concerned" about it from the get go when you first joined the Forum, since I felt it was highly misleading to all of us patients.

But be that as it may, I'm wondering if the post that offended you was something that I wrote.  I recall recently responding to a newbie who mentioned he/she was going to have radiation - I think it was FSR, but I'm not certain.  Anyway, I made the statement that he/she should make sure that the size of his/her AN was accurately reflected on his/her MRI because if it wasn't, radiation might not truly be an option - the AN might be too big. 

If it was my post that set you off, I can see how you might misinterpret it as me second guessing a medical professional, but that was not my intention at all.  I was just trying to say that the AN in question was close to the threshold for radiation - at least GK and CK - and that might be something the newbie might want to consider; since I was originally a candidate for surgery and radiation but during my surgery it was discovered my AN was larger than first thought and I wasn't actually a radiation candidate afterall.

As an "oldie" on the Forum, I have to point out that we always say we are not doctors (as evidenced in my response to Funnydream's urine thread) and we always stress that treatment decisions are personal decisions.  Yes, we cite our treatment decision and usually say that it was a good choice for US, but we always say that it's not necessarily the best decision for everyone.  If I've said it once, I've said it a million times - when making a treatment decision you need to do what is best for YOU.

If the post you are referring to wasn't written by me, then I'll quote the infamous words of Roseanne Roseannadanna "Never Mind" 

Best,

Jan

[Syl]

Doc:
I understand your concern. However, during my search for answers, when I found this websit, I had to go through the home page, which explains that ANA is a patient member organization that provides support. Then I found the support group. I wasn't looking for a doctor. I would hope that such is the case for everyone else who bypasses the Medical Resources section of the website to reach the support group. 

Thanks for clarifying that you're not a doctor. I missed the initial post where you do that.

Regards,

Syl

[sgerrard]

I am going to chime in with a few comments in support of our forum, and all of its members.

Never once have I suggested that CK for example is a better course of treatment than a translab. If I had, I'd expect to be reminded I lack a medical degree to be offering such an opinion.

The issue that many AN patients encounter is that they can easily find two doctors who do have medical degrees, one of which thinks CK is better, one of which thinks translab is better. Having a medical degree doesn't make a doctor automatically right - there is disagreement among doctors on many questions about AN treatment.

... as much as we like to think that in the end people make their own choices, they're still heavily influenced by what others who've been through the ordeal have to say.

I think that is correct, and as it should be. Who better to be influenced by, when confronting medical questions where the doctors don't all agree? It is very much the intent of the ANA to make more information available to both doctors and patients, so that patients can make the most informed decision possible. I know I wanted to hear what other patients really thought, and I think most new patients do too.

Having a benign tumor in your head is not a walk in the park. We can try to make it fun, but we also have to be free to honestly express our views, if we are going to be any help at all to other patients.

Steve

[Jim Scott]

There seems to be a little bit of a war going on here, so I hesitate to get involved...but I very recently read a post in which a senior member (Jim) suggested that it might be ok if someone doesn't get an MRI that was prescribed by a physician, since this person was 5 years post surgery, so it would probably be safe. (if memory serves me) I don't remember if the "I'm not a doctor" disclaimer was also added, and I think it doesn't matter  - I was left with the impression that the person giving advice was overriding the recommendation prescribed by a doctor.

I was a bit bothered when I read this.

I don't need to come here, and I do anyway, hoping to help someone by talking about my own experience. Unfortunately, there is uncomfortable adversity here, so I will probably be leaving soon.

Nancy ~

I'm sorry to learn that you were 'concerned' about my comments to Paul regarding his decision whether or not to undergo his five-year MRI.  I wish you had notified me of this concern by PM so we could have discussed it privately but since you choose to put it in the public forum, I'll respond to you here. 

The post you refer to is this: http://anausa.org/forum/index.php?topic=13490.msg154041#msg154041

Allow me to put this in context.  In the above-referenced post, I suggested three possibilities to Paul, who was considering skipping his five-year MRI scan and wondered if it would be prudent to do so.  One possibility I offered was to skip it, as planned.  My reasoning was that if he harbored concerns about the gadolinium and was symptom-free at five years post-op, he was probably not taking a huge risk by skipping one MRI scan.  I stand by that opinion but I seriously doubt that Paul was going to base his MRI decision solely on that one opinion because we've met and talked (at previous AN brunches) and Paul knows full well that I have no medical expertise and was only offering my personal point of view, including two other options that included having the MRI.  I trust this resolves what I consider your misconception of the intent of my comments to Paul. 

I truly regret that you consider this thread to be adversarial.  Doc offered his opinion and others have responded, civilly, with differing points of view on the issue he raised and that I addressed with him, via PM.  A few salient points have been raised and I believe the 'issue' of AN patients giving 'medical' advice that conflicts with a doctor's opinion has been thoroughly explored with the conclusion being that opinions are simply that and no one here is pretending to have superior knowledge to a trained, licensed Medical Doctor.

I also was sorry to learn that you are considering abandoning the AN website forums.  Of course, we hope you'll reconsider. The 'AN community' is small and we can use all the help and support we can get so I hope you'll stick around and continue your contributions, which are appreciated.  We are just people and no one is without flaws so we just have to cut each other a bit of slack sometimes and not be too quick to criticize or take offense.  This is why I much prefer that anyone with a complaint use the PM system (or e-mail) to alert a moderator to whatever the problem is perceived to be so that it can, usually, be dealt with outside of the public forums and so, avoid these kinds of threads in the first place.  I'm sure we can all understand the benefit of that approach to 'issues'.  Thanks again for your contributions.

Jim