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Old 11-09-2007, 04:51 PM
Matt4Ana Matt4Ana is offline
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In this post, GMW makes some comments accusing a patient of giving dangerous medical advice. I copy that thread here for further discussion, and out of the patients storyline.
================================================== =========================

I'm not going to make any friends here right now, but I am going to say this entire thread is out of line, and here is why:

1) when we voluntarily choose surgery, we do so with knowledge of possible risk, including death, when we agree to a procedure. This is why 4 percent of patients have failed ADR procedures: it happens;

2) When I read Job13's very first post, I thought to myself, based on my own experience, that she is not a candidate, as she didn't present with pain;

3) The thread then continues with a pseudo patient advocate rendering medical opinion. Is this person a medical doctor at the very least, and a neurosurgeon at best? I considered myself to be a well informed patient, and did ample research, but never lost sight of the fact I am not a medical doctor, and I have certainly heard plenty, of what I consider to be, armchair medical opinion and advice from laymen, especially here;

4) How many medical opinions did Job13 obtain from qualified ADR surgeons before surgery?

5) The post on page 5 outlining the economics of ADR surgery, as a probable cause and motive for other physicians "protecting one another" was completely out of line and inappropriate. This is a personal opinion and conclusion, and one that borders on slander. Innuendo like this will cause doctors to not be responsive to this website and Harrison's activities;

6) The post on page 6 lists medical "conclusions" rendered by a layman. I would like to know who came to the conclusions stated in bullet points 2, 3, 4 and 7. As for bullet point 5, how do you know what was going on with this surgeon? As a sideline comment regarding surgeon contact, what doctor communicates with patients by email? I would think most doctors would view this practice as reckless. I do think it is noble of Matt to help her, but to draw the conclusions he did, as an "amateur surgeon", is not helpful, and frankly, quite dangerous. In addition, I have always felt that the frequent "advice" relative to pain medication (not this thread) is not appropriate;

7) The comment about "not appreciating the diminishing of stated events", all users of this website agreed to the terms of use when they signed up;

8) Harrison has developed many relationships with medical professionals in order to supply the content he does. We all know that Job13 is not happy with her surgeon, nor her surgery. We all feel very badly for her, including me. However, to render medical opinions, and draw medical conclusions which may or may not be accurate are not appropriate.

Finally, I want to reiterate how badly I feel for Job13. I've been through this, although not to the extent she has, but I am reaching my 2 year anniversary for my Charite implant, and I still have daily pain, and probably will for the rest of my life. However, my daily 8 level of pain has gone to 2 to 5, which I consider, based on the pre-operative expectations established by my surgeon, well prior to surgery, to be a success.

If anything, this thread also reiterates the importance of seeking multiple opinions before surgery, learning as much possible FROM QUALIFIED MEDICAL DOCTORS, as well as garnering OPINIONS from surgical patients and other lay sources, before subjecting one's self to life threatening surgery. No surgery has a 100 percent guarantee. Job13 knew this and said so in her first post. We should learn from her situation, as it reiterates the potential risk of any operation. We should also ask ourselves what we could do in the future to avoid what happened to her.

If this website turns into a witch hunt for certain doctors, guess what?, those medical professionals who supply information to Harrison for the benefit of others, will no longer do that, and this site becomes worthless to any prospective ADR patients. Harrison has the right to decide what is appropriate for HIS website. Everyone knew that when they signed on. Let's remember that.

(edited for typos)


Years of sports and poor treatment;<BR>DDD plus herniation L5-S1;<BR>Provocative discography, myleogram;<BR>IDET December, 2004 (failure);<BR>More tests; Charite ADR 11/15/05;<BR>Male, 46, 6'0", 150 lbs.

================================================== =============================

GMW: Thank you for your inputs and concerns. Hopefully I can clarify - without blowing my top.

Speaking on 'slander', do you remember who accused me of "fronting for some slip and fall law firm, on a commission basis?" ... and then someone congratulating you and shutting down the thread? ... and the one of with someone stating "Unlike Matt, I do not get a paycheck for any of this work!" and then shutting down the thread. Looks like a trend.

Regarding your comments

"1) when we voluntarily choose surgery, we do so with knowledge of possible risk, including death, when we agree to a procedure. This is why 4 percent of patients have failed ADR procedures: it happens;"

Agreed. That is why people should hear of the bad outcomes too. Four Percent? You have proven your bias. Technically, YOU have just given medical opinion, telling people they have a 96% chance of success - without reference. Why 96%? Because some 4th class Euro reports say so? I'm sorry, I only believe 1st class data, like the FDA trials - which state 53%. Even Synthes' own financial report says 64%. I wont throw innuendo at you. Here's proof . YOU, IN FACT, HAVE GIVEN PEOPLE MISLEADING AND DANGEROUS GUIDANCE. Now your post will go on to slam a patient for giving medical advice, when she only told her story. Very impressive.

"2) When I read Job13's very first post, I thought to myself, based on my own experience, that she is not a candidate, as she didn't present with pain;"

Yes, she did not present with pain. She was off meds. She could walk several kilometers to see the Pope go by (only possible on foot). We several other forms of electronic proof. Dont ask me for it. This is for doctors only.

3. If your going to make accusations, be clear. Who gave what medical advice? Dont just 'spin' it. Dont think that discussing our situation is giving medical advice. Dont think that stating our opinion "I would not recommend ADR at X clinic" ... is giving medical advice.

4. Anastasia WAS a perfect candidate for ADR - in her original consultation (May 2005). Except, her conditions had changed drastically from the year before, Sep 2005 imagery. Naturally, because she had had a disectomy with abrasion at the Alphaklinik. In that span of time, one year, her disc had collapsed completely, and her facets gone bad. This is not my opinion. It is the statement of a very high level ADR surgeon.

5. Your quotation says that I said "protecting one another". That is a complete lie. That statement doesnt exist. People see that you are spinning things and trying to slime me. You are obviously TROLLING and attacking me specifically ... since you have never said anything on this thread before. According to site policy, you should be banned. I invite you to a private PM to discuss this further. If you disagree with any of the FACTS that I posted, please let me know. I will fix it if its not true.

6. Please tell us 'WHO' renders 'WHAT' medical conclusions by a layman? WHO ARE YOU TO CALL OUR DOCTORS LAYMEN! Guess what, we do not, by MEDICAL LAW, have to disclose our medical background, doctors, etc. We can, if we like, give our medical info - you take it as truth/lie or whatever. You are obviously attacking us, since you are not asking all the other people on this forum to cough up their doctors names, medical history etc.
Yet again, you have slandered me with "I do think it is noble of Matt to help her, but to draw the conclusions he did, as an "amateur surgeon", is not helpful, and frankly, quite dangerous." I never said anything on page 6. Please be more specific, in exactly what I said - before you slander me on these pages with such accusations. I will gladly forward your objections to our surgeons.

"In addition, I have always felt that the frequent "advice" relative to pain medication (not this thread) is not appropriate;" Again - if I made any 'advice' - please help me find it and delete it. If Anastasia states her reactions to stuff, well, that's her prerogative.

7. Thank you for your comments that relate to the actual recent turn of events on this thread - regarding the changing of peoples writings. Even though all users agreed to the 'terms', the 'terms' do not include unannounced editing of peoples words. It does state that threads or comments may be removed if inappropriate. I do not think her title was inappropriate - although not conforming to some obscure policy.

8. "However, to render medical opinions, and draw medical conclusions which may or may not be accurate are not appropriate."

Anastasia has never rendered medical opinions/conclusion of her own. You have yet again defamed her. Every bit of medical opinion we state comes straight from the mouth/email of a high level surgeon. For example, one VERY HIGH LEVEL surgeon from Munich stated "I would never put an ADR into such a degenerative level". No we arent going to tell you who said this. Its a private email. Clue: He works for a klinik which refuses to treat Americans - because Americans are so damned litigious. Funny, Anastasia is Russian. They still refused to treat her.

As you stated very well (really, I mean it), going from an 8 level of pain to a [2-5] is considered a success. In fact, if you look at the VAS/ODI charts, the typical patient goes from a 7.5 to a 4.5 ... which is considered a success. Funny thing is, those same charts show the Fusion Patients actually having LESS pain than the ADR patients at 6 months.

Your last two paragraphs are so leading it makes me sick.

Anastasia had multiple medical opinions FROM QUALIFIED MEDICAL DOCTORS months before her surgery ... and has many more medical opinions FROM QAULIFIED MEDICAL DOCTORS (thanks for the insinuation that she doesnt) stating that her PRE-OPERATIVE CONDITIONS CONTRAINDICATED ADR.

You insinuate that Anastasia is making a 'witch hunt' for certain doctors. I'm sorry, but you have not made the same comments against others who reported on their bad outcomes. You are obviously making a witch hunt against a patient who just had a disc ripped out her spine and barely survived - and had to tell her story. Good job.

Harrison, please delete GMW's comments on Anastasia's thread. I dont have time for a personal injury lawsuit.

Cheers,
Matt
  #2  
Old 11-09-2007, 05:30 PM
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Harrison Harrison is offline
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Matt, I don't know what this legal stuff is all about; but if you are suggesting that your involvement with this forum has somehow brought liability to a peaceful community, I am very upset. How terrible, odd and tangled this mess really is.

Perhaps a good solution would be for you to leave voluntarily? A nice clean break-up, rather than all the ill-will that accompanies a "banning?"

If we can figure this out, I am glad to make this happen. During this chat, we can discuss whatever information concerns and edits you mention.

I am a very honest, open and ethical person. I believe you will feel this after we talk.

Let me know here, or by phone or email.
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Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
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  #3  
Old 11-09-2007, 06:16 PM
Matt4Ana Matt4Ana is offline
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If you read GMW's post, he makes many wild, totally unfounded, accusations of that I am acting unlawfully.

He has seriously insulted us ... again. What's more disturbing, is the generality of it. I wouldnt be so upset if he had just quoted something I could understand ... and possibly fix.

I am very surprised that you are suggesting that I leave ... when in fact ... I have never gone to someone else's thread and accused or attacked them.

GMW stated:

"patient advocate rendering medical opinion" - False, there is no patient rendering medical opinion. Where?

"This is a personal opinion and conclusion, and one that borders on slander." - False, there was no opinion stated. Where? I posted facts. You draw your own conclusions. Its called FREEDOM OF SPEECH.

"medical "conclusions" rendered by a layman" - False. Those are Doctor's statements.

"to draw the conclusions he did, as an "amateur surgeon", is not helpful, and frankly, quite dangerous." - False again. I never even said anything there. This guy is truly attacking. Unbelievable. If ANYONE posts diagnostics, then according to GMW, they are pretending to be a surgeon.

"However, to render medical opinions, and draw medical conclusions which may or may not be accurate are not appropriate." - False. Again, just because he says so, DOES NOT MAKE OUR DOCTOR'S OPINIONS WRONG.

If ANYONE had said that to ANYONE besides me, I'm sure you would delete it. Prove me wrong.

I leave open the opportunity for you or GMW to delete (or seriously modify) the insults and slander on my wife in the prior thread.

Best Regards,
Matt
  #4  
Old 11-09-2007, 06:20 PM
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Lyndsay Lyndsay is offline
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Going out on a limb here but why should Matt leave? As I see it he's defending himself which surely he is allowed to do considering what GMW posted? After that he has invited GMW to a private chat so as to keep anything further off the forum.

As for the editing of Anastasia's post, particularly the title, I agree that the "One Year Of Hell" should remain as it is relevant not only to Anastasia & her story but a heads up to anyone coming in to research ADR. Maybe I should also add "One Year of Hell & Ongoing" to the title of my story when I give my one year update later on in the week?

Harrison, everyone here is grateful for this forum & the work you have put in but without the patients & their honest stories there is no forum. Anastasia never mentioned her surgeon even if most of us do know who carried out her botched surgery & even if she had, if there were any legal ramifications then they would fall to her not you.

I think it's extremely sad that some have felt the need to hijack Anastasia's post & attack Matt in the process. Harrison if you must do any editing then maybe there is your chance?

Please, let this forum return to the friendly, free speech forum I thought it was supposed to be.
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Lyndsay x

37 years old
DDD
L4/L5 - L5/S1 DDD
L5/S1 Annular Tear
End Stage Facet Joint Arthritis
Chronic Pain
Fibromyalgia & Chronic Fatigue Syndrome
15 Nov 06 ~ Prodisc ADR at L5/S1
Need a revision but not a surgeon in the UK will (or can?) remove a Prodisc!!
Prodisc has ruined my life
  #5  
Old 11-09-2007, 06:24 PM
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We all want "friendly and free," but I don't want to lose my house, legal expenses and forfeit time I should be spending with patients -- let alone my family. By far, these topics have required the most time of ANY topics in the history of the forum.

As an editor, patient, patient advocate, community member, liaison, teacher (you get the point), I love the idea of ALL sides of any story being told. But I'll be damned if ANY patient brings legal challenges on this community -- and threatens my way of life -- and the good I thought I was trying to instill.

Lynday, out of all people, you see the work I've done behind the curtains...which I never brag about! Should I deal with this nonsense -- or help 2 or 3 other people? Please answer my question -- it is that simple.
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
  #6  
Old 11-09-2007, 06:34 PM
Matt4Ana Matt4Ana is offline
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Clarification: I have no time to DEFEND myself in a lawsuit - which GMW was implying with all that legal mumbo jumbo. Sorry if that sounded like I meant against you (Harrison).

Hey, were both techies. GMW probably rolls in the dough with his finance job. Besides - I've been wiped out to get my wife out of Germany for help that we could trust. At least I can claim that much at the pearly gates.
  #7  
Old 11-09-2007, 06:54 PM
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Lyndsay Lyndsay is offline
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Harrison, excuse my ignorance (maybe?) but other than the time you're spending on the forum, why on earth should you lose your house etc? Sorry but that makes no sense?!?

Anastasia's post maybe long but then there are a lot of people on here that care deeply about her & all that she has gone through. The only exceptions are of the recent, completely uncalled for, troll posts (sorry but no other word for it really). My story is several pages long & that is without any updates in months (it will be updated though this week) but then Anastasia's story & mine share many similarities, though many of mine have deliberately been kept off the forum (for now).

People coming to this forum, or any forum, need to see the bad as well as the good & censoring is going to make that difficult for them without reading through every post.

Back to this thread, why should Matt have to leave? He's done nothing other than defend himself!
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Lyndsay x

37 years old
DDD
L4/L5 - L5/S1 DDD
L5/S1 Annular Tear
End Stage Facet Joint Arthritis
Chronic Pain
Fibromyalgia & Chronic Fatigue Syndrome
15 Nov 06 ~ Prodisc ADR at L5/S1
Need a revision but not a surgeon in the UK will (or can?) remove a Prodisc!!
Prodisc has ruined my life
  #8  
Old 11-09-2007, 07:20 PM
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Quote:
Should I deal with this nonsense -- or help 2 or 3 other people? Please answer my question -- it is that simple.
Lyndsay, I know it's not that easy to answer! But I made my point.

Matt, thx for adressing my concern about liabilities.

Please, no more posts on this subject. I am not closing this, but asking your respect.
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
  #9  
Old 11-10-2007, 01:22 AM
tmont tmont is offline
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I originally posted this on Ana's thread, but am moving it here (sorry, no one wants this to drag on, but 'respect'and 'peace' won't hold if the problem isn't resolved, and saying 'no more on this subject' is not a resolution!):

'Helping people' sometimes involves dealing with this stuff. It stinks, but it's far from 'nonsense'. People have trusted this space, and Harrison, and their peers, to be able to express themselves freely as long as they respect others. That trust is taking a serious hit with this, and brushing it under the mat (Matt? ...sorry, too punny to resist)ain't gonna help.

How about working together to resolve this situation in a way where everyone's feelings are at least respected? It's Harrison's Board, ok, but there are patients who do not feel supported in the way it's been organized lately, and I'm sorry to have to say that I can understand this given these latest exchanges.

Harrison, I believe you do care about people's feelings. What about that idea of letting people flag their own stories with mood icons? It's a compromise at least. That way everything, good or bad, is no longer under a blanket coat of 'generic calm'. If we're going to leave negative headings elsewhere, like the Stenum posts and even Insurance Hell, then there is no logical way to justify wiping over negative surgical experiences so they melt into the background, don't you think?

Also: I'd like to remind everyone that a lot of work and support have been generated here BY and FOR MANY people over the years and NO ONE gets paid. It would be a shame to lose good people over this but it's about to happen. A Forum is people. Without posters to contribute, it's empty space.

It's really necessary to quickly work this out in a way where the majority feels satisfied, and move on. Spineys, Rich, are you inclined to agree or disagree? Thanks for your time; I have a 4-hour exam on Monday and not much to spare here but I hope ALL realize the importance of protecting what has been built with so much care and honest feeling.

Trace
  #10  
Old 11-10-2007, 02:39 AM
rosedee rosedee is offline
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I’m glad this new thread has been started, as I wanted to respond to a few comments, but did not want to continue on Anastasia’s thread.

First A BIG APOLOGY to Harrison for accusing him of removing earlier postings of his about Anastasia’s identity – I was wrong. These were on another thread and, as he points out, are still there. (I got confused)

I am very sorry, too, that all the positives I wrote about this forum seem to have been disregarded. I put them in to demonstrate that the criticisms I wrote needed to be seen in that context – they were written precisely because I value this forum so much (I really haven’t got either the energy or inclination to get into silly games or trolling).

The other point I want to make is that I neither said, nor implied that I was talking for the whole community. I specifically referred to what I saw was clearly inferred by the previous posters and felt by myself.

Any large group of people – on-line or off-line – can only gain in strength by allowing dissent and engaging in open dialogue with it. Personal attacks are not the same thing – hence my wish to clarify my posting and apologise for the one error in it.
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2000 Spinal fusion – L4/5 L5/S1 – left wi
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