contract with dr to not rate them on line

[grega]

Hi .... noticed your moniker in another thread and wondered if it meant you had any association with Hopkins.  And now, your post today verifies that. 

I also had AN surgery at JHH .... 5 yrs this Monday .... so I was curious as to which docs you refer to on the Balto Mag's Best Docs list.  Sure enuf, Henry Brem headed my team.  I've had no difficulties from the surgery other than SSD.  And I was very pleased with Dr Brem before surgery, and have not been displeased since.

That said, I agree with you that some would benefit greatly from reviews prior to any AN decision-making.  This forum offers that, to some degree, when some posters advice others that ask.  I've suggested that in previous posts.

Sorry that you experienced less than positive results.

Greg

[no2hopkins]

Thanks for the reply. I had Dr. Brem and Dr. Holiday and  was completely dissatisfied with both. I'm glad yours went well though. I had my surgery in 2003 and it resulted in total right side deafness and complete right side facial paralysis. I was unhappy with the information I was given prior to my surgery and the follow up visits with Dr. Brem were, frankly, insulting. I left Hopkins and went to Univ of Md in Balt, Dr. Stephanie Moody, who tried to correct some of the effects left by the Hopkins surgery. She did a great job using a Gortex sling and a hypoglossal nerve jump graft which gave me some symetry in my face. I also have a gold weight in my right eyelid as I was unable to close my eye after surgery.

[leapyrtwins]

No -

I'm sorry you had problems with your surgery but had to chime in and say that doctors can't guarantee anyone anything 100%.  Like the rest of us, they are only human.  Lots of patients have SSD and facial paralysis, they are risks of the surgery.  I'm SSD myself, but don't blame that on my doctors.  Two of my best friends from the Forum, Lori67 and Kaybo have had followup surgeries for facial paralysis (7/12 jump and T3 respectively).  Lots of forumites have had CSF leaks.  I guess my point here is, sh*t happens.  Unfortunately it happened to you.  IMO that was neither your docs' fault nor your fault.

I'm glad that Dr. Moody was able to help you with the sling and nerve graft.  Have you tried a BAHA or a TransEar for your SSD?  I wear a BAHA and it's made all the difference in the world.

Jan

[HeadCase2]

  I can almost understand the Doctor's point of view.  HIPAA regulations, related to patient confidentiality, would prevent a Doctor from being able to respond online to a patient's criticism.  And I've dealt with the public enough to know that not everyone's expectations are in line with reality.  That being said, I can not imagine any reputable Doctor having the time or inclination to look for any potential online criticism, or want to muzzle their patients.
 Regards,
   Rob
 

[no2hopkins]

Thanks for your response.  I believe however, docs should judged based on their successes of lack thereof. I would not recommend an auto mechanic who had a history on being unable to properly fix a car. I don't think it's unreasonable to hold doc to the same standard.  I believe "anything can happen" is a cop out that certainly wouldn't work at my job.

[Jim Scott]

Thanks for your response.  I believe however, docs should judged based on their successes of lack thereof. I would not recommend an auto mechanic who had a history on being unable to properly fix a car. I don't think it's unreasonable to hold doc to the same standard.  I believe "anything can happen" is a cop out that certainly wouldn't work at my job.

I agree that judging a physician - specifically, for AN patients - a neurosurgeon that specializes in acoustic neuroma removal operations, should ultimately be based on his record of success (or lack of, in a negative sense).  As I previously stated, these online evaluations don't interest me much as comments can be anonymous and therefore unverifiable, making them of dubious value.  However, I don't object, out of hand, online physician evaluations from patients. 

I think it should be noted that neurosurgeons performing extremely demanding microsurgery to remove or debulk an acoustic neuroma are operating in a tiny, restricted area and that critical cranial nerves are close to the operating site and quite vulnerable.  Add to that, the reality that every individual will have a slightly different reaction to having their skull opened and the tumor excised, the procedure usually taking an average of 8 hours (often, much longer) to accomplish with many assistants required.  When you add up all these variables, the possibility for negative surgical outcomes (in varying degrees) is simply inescapable.  The fact is that surgical procedures have advanced over the years and today, there are many more excellent outcomes from AN removal than ever before.  That doesn't lessen the tribulation and frustration an AN surgical patient who doesn't experience a good outcome has to endure.  Unfortunately, with this kind of ultra-delicate surgery, there is no guaranteed method and to expect a surgeon to basically offer his patients a warranty that his surgery will not have any negative aspects to the patients quality of life is a bit unrealistic, as much as we might wish that kind of iron-clad guarantee could be offered to us prior to surgery. 

That having been necessarily stated, I'm always dismayed to learn that any AN patient is suffering with post-op complications.  As we know, a lack of research and making the mistake of simply assuming any neurosurgeon is going to have the necessary experience and surgical skills to successfully remove an acoustic neuroma from our skull with almost no adverse complications is naive but, unfortunately, this happens, and sometimes produces unpleasant results.  Of course it's a case of caveat emptor and this website and these forums strive to aid newly diagnosed AN patients, even if we can't reach them all.  Our mantra is one of 'research, research, research'.  While I don't necessarily endorse doctor rating websites, I can understand their reason for existing and why some folks may turn to them in an attempt to bolster their confidence in the capabilities of a doctor they're considering to hire to perform serious surgery in a very vulnerable part of their body - their skull/brain. 

Doctor's reputations count and so does their experience but again, considering the kind of surgery that AN removals involve, demanding a doctor practically guarantee the outcome of their surgery is a tad unreasonable, although it's easy to understand why any AN patient would prefer having this kind of guarantee.  The reality is that, with no fault on the part of a doctor, any surgical patient can have a poor outcome, even when everything was done correctly.  People die on operating tables while having minor surgery.  Acoustic neuroma removal surgery is a medical discipline that cannot realistically be compared to any other type of work.  While AN surgery is clearly more important than fixing your car, it is still performed by human beings putting their hands and instruments where nature never intended for them to be and performing extraordinarily delicate procedures on a living human being.  I compare it to disarming a live bomb.  The fact that, today, the majority of AN patients experience a good surgical outcome is heartening and I look forward to the day when no AN patient - surgical or radiation (or both) will have to endure any kind of complication that impacts his or her quality of life.  I regret that even the best doctors operating in the best facilities cannot guarantee their outcomes and that patients sometimes suffer life-altering effects when the surgery doesn't produce near-perfect results.  I doubt the doctors involved are satisfied with those kinds of outcomes, either. 

Because this is the current state of AN surgery/radiation (no guarantees) the ANA and the good folks that contribute to these forums will continue to  do all they can to educate and support AN patients.  It's the best we can do.  I apologize for the length of this reply (to your post) but I thought it deserved a serious response and not a flip comment. 

Jim

   

[no2hopkins]

Jim,
I appreciate the thoughtfulness of your reply, although I disagree with some of your points.  Auto mechanics and brain surgery are only a poor comparison if I asked my auto mechanic to perform brain surgery. Otherwise, they are both occupations the provider has been trained to do. I agree that brain surgery is more complicated and offers more opportunity for things to go wrong.  My point is that docs should not be given a pass and that all results (good or bad) should not be accepted as though inevitable.  Docs should be questioned and held accountable for poor results.

[leapyrtwins]

Docs should be questioned and held accountable for poor results.

Only if patients are questioned and held accountable for having side-effects and complications.

Bottomline, nothing in life is 100% guaranteed.  No doctor can promise you anything 100%.  If one does, be VERY, VERY, wary.

Jan

[Pooter]

Docs should be questioned and held accountable for poor results.

Only if patients are questioned and held accountable for having side-effects and complications.

Bottomline, nothing in life is 100% guaranteed.  No doctor can promise you anything 100%.  If one does, be VERY, VERY, wary.

Jan

Just thought that I'd point out that there are 2 things in life that can be guaranteed.  Death and taxes. 

Carry on.

Regards,
Brian

[carter]

i started this thread some time ago ...  i did it as i was not satisfied with my doctors.  at that time, i had no real side affects, i had communications issues, etc.  i have read others that have had the same.

now the tome has turned to that of no doctor can guarantee anything.  BS!  a dr can communicate with you, they can talk withe you to get consent vs making the decision of sacrificing your hearing, they can treat you with respect and dignity - not talk down to you.

and i see that much is hung on the concept of success of the procedure.  one has to ask who's definition?   is it strictly the control of the tumor --- mine is good.  i am now SSD and have numbness in the face.  teh dr now says that he knew that i would loose the hearing all the time.  when i had the facial numbness, it took 6 weeks to get the MRI and for me to be told, nerve damage .... it is better than having bigger issues created with surgery.

usually this board is good about standing behind the person making the comments --- or at least reading the words before jumping ...  i am just not seeign it today!


carter

[Jim Scott]

Hi, Carter ~

I'm disappointed that you've perceived the comments on this thread as not supporting you.  I don't think that was anyone's intention and I'm sorry you are displeased with the reactions. 

Yes, a doctor should certainly communicate with the patient.  No one would argue that.  What was basically stated was that no doctor can guarantee the outcome of his surgery, even though we, as patients, very much wish that he could.  Who wouldn't?  Surgeons generally consider that if the tumor is excised the operation was successful.  Technically, it was.  We all understand that the patient's quality of life post-op is a major factor in determining 'success' but many surgeons do not yet share that outlook.  I think they are badly misguided when they take that narrow view but, sadly, many still do.  I regret that you seem to be stuck with a doctor that considers the operation a success just because the tumor is gone.  Your appreciation for the fact that your AN-related problems are relatively minor compared to others is both realistic and appreciated.   

That your doctor didn't tell you ahead of time that you would be likely to lose your hearing in the AN-affected ear is unfortunate and it was wrong of him not to inform you.  However, some cursory research on your part would have forewarned you that complete or partial loss of hearing is a very common complication of AN removal surgery.  The ANA literature states this and so do most other websites devoted to AN issues.  I have to believe that had you asked your doctor about the possibility of hearing loss he would have told you it was likely.  That he apparently never mentioned it is certainly remiss on his part and, frankly, highly unusual.  The length of time it took for you to obtain an MRI scan may not be entirely the doctor's fault but if it was, your displeasure is understandable. 

Carter, this is, as you noted, a support site for AN patients and we are always disappointed to learn that any AN patient has had an unsatisfactory outcome and is upset with his doctor.   The members that populate and basically make these forums the resource and place of support they are don't mean to disparage your dissatisfaction with your outcome or in any way minimize your exasperation.  We consider you a friend and a fellow AN patient that we appreciate and will continue to support.  That hasn't changed.  Please forgive any misunderstanding that may have occurred and accept our collective apology and best hopes for your continued recovery.

Jim      

[CHD63]

Carter .....

I want to echo Jim in saying that I do not think anyone who has responded to this thread intended to minimize your concern or situation in any way.  We try to be honest with our posts (and not sugar-coat things) so that newly diagnosed people have a more accurate reality of what to expect.

I am so sorry you did not have a good experience with your doctor(s).  In my mind there is no excuse for poor communication in a medical office but the reality is that it does happen.  The older I get the more I am coming to realize that I have a responsibility to be involved in my own medical care, by way of doing all of the research I can and asking all of the questions I can.  This in no way excuses a doctor from the responsibility of telling a patient what the possible scenarios can be with any treatment.

Please continue to come back here and see that we really do care what happened to you.  We support you as you continue with this journey.

My hope is that you can move forward from this .....

Clarice

[Doc]

Gosh, if I had six things I could rattle off about how I didn't like the care I received from my Doctor's I'd be speaking with an attorney rather than making a forum post.  I did just that when I thought I was mistreated regarding my eye.  The attorney set me straight, "don't waste my time and your money" he said.  I'm sure most of our *complaints* would probably be met with the same response. You can't fault a guy for trying to protect is reputation from what is usually nothing more than sour grapes. Having said all that, the whole contract thing is a shame.  You guys should probably consider finding new medical professionals to provide all necessary care moving forward. Please don't be offended by my comments, I've been there and continue to be challenged by many of the same frustrations you've experienced and likely continue to face daily.

Take Care!
  
Doc

[4cm in Pacific Northwest]

If a doctor has a history of malpractice suits this is something I want to know BEFORE I agree to have them treat me. If I were required to sign a gag order- I would just walk out and say,

“See ya!  There are others out there, who are reputable, and do not need to gag their patients.”

When this is a problem is when the doctor is a “big fish in a small pond” and the patients do not have insurance coverage to go out-of-state… or out-of-network and THE Doctor-in-question is only who their insurance will cover.

The surgeon must had to have really messed up if a patient was to endure a lawyer, the legal fees, the court proceeding and actually WIN the law suit… as the alias DR.”B” states. (BTW "DR B" are you really a doctor? If not why did you choose this avatar name? I go by Daisy Head Mazy as Dr Seuss very much puts my AN journey in a nutshell with that story)

I had a gut instinct about one particular neurosurgeon who was sending my discernment flags waving all-over-the-place (not to mention my back hairs up)- especially when he was back biting a reputable colleague who I had already met, done research on and had the utmost respect for. When I asked why a translab and baha would be scheduled simultaneously – he said (in front of his intern and my husband) motioning his finger as if he had money in his hand,
“You know what this is don’t you? (Referring to the imaginary dollars in his fingers).  It is because they know they will take your hearing out and they just want you money!”

 His amazing unprofessionalism blew me, and my husband, away …  worse he was in a teaching capacity role-modeling for med students.

…And I knew there must be something on this guy.  (Call it 6th sense or   whatever…)

I went home and logged onto www.healthgrades.com and put in his name.
Sure enough this “Dr Ego” (not his real name of course  ) had malpractice records (plural!). And ironically he has taught a course for other doctors on how to avoid lawsuits….

Funny I have never mentioned his “name” on-line but anyone in my locale, who has met the guy and also interviewed him for AN treatment, knows exactly whom I am talking about. He was so crass and arrogant with them also -that they too had flags. I wondered if he was sued because of incompetence or if he simply has the ability to absolutely infuriate people -with his lack of social graces.

I hope www.heathgrades.com is here to stay. Yes you have to pay for a report but know the report will state the actual malpractice suits registered by the courts. It will also give you a record of the hospital that the surgeon works with.

Know that from Dr Ego's institution I have also met a few exceptionally professional doctors who are just excellent … and sadly this one surgeon (and another he works with) gives the rest a bad name. You would think the medical peers would want a review also done on a colleague -whom does not represent their medical profession well. I know some ANA members in my group who would not go back to one particular institution, for follow up help, as they had been treated so poorly by their surgeon(s)… and I had to really convince them that NOT all doctors in that particular institution where like that. It actually it took 2 different surgeons presenting to my group, from that specific institution, before some (who so needed help -especially with facial nerve damage issues), would go back there.

2001 this surgeon had more than one law suit against him … 2008 he was named one of the “top doctors” by a glossy metropolitan monthly magazine. Know that this magazine nomination is by “peer” review (IE other doctors and nurses NOT patients.) Sounds like a wonderful example of cronyism to me.

Nope- there still needs to be patient feedback.  

 I have seen numerous doctors: some were dreadful, a few excellent and many somewhere in between. Some doctors are excellent but have weak clinic/office staff … or visa versa. I have only met a small few that are excellent in both DR and clinic/office staff. In truth I have NOT done an on-line review of ANY of these DR’s... but ones who have been excellent I have mentioned ,by name, on this forum only. I have one who has been just excellent and have refereed many of my fellow ANA buddies to him…  (Gee maybe I should give him a review so credit is due where it is deserved.) The doctors I know to be terrific I have been sure to let them know that (and fellow patients.) If a doctor or his/her clinic has huge weaknesses - I do actually point this out to them directly. Some are actually committed to growth and improvement- and receptive to change. If they make no effort to improve and grow- I move on and do not waste too much more time. (This is what this Canadian likes about living in the USA- you have the freedom to choose a doctor. You also have here the freedom of speech. Freedoms that are important to use wisely.)

If a doctor were to serve GAG order, as a condition of taking on a patient- that would be my first flag that the doctor has issues pre-existing.  Don’t sign. You are relinquishing a freedom you forefathers fought SO hard for.  Move on to a different doctor.

DHM (Daisy Head Mazy)

[4cm in Pacific Northwest]

My ENT and Neurosurgeon at Hopkins were and still are on Baltimore Magazine's Baltimore's Best Doctors list. My surgical results were extremely disappointing.

Here is a link to the Baltimore Magazine

http://www.baltimoremagazine.net/article.asp?t=1&m=1&c=30&s=652&ai=88477

Quote from that
“Following are our 2009 Top Doctors as selected by their peers”


Know that the reviews from these Metropolitan Glossy magazines, which you and I both mentioned in our above posts, are done by peers (ie Doctors and nurses not patients.)

Lets just decide that the truth is these are cronyism magazines and not necessarily depicting truth and reality- that patients are experiencing.

However I will tell you that I recently saw an allergy specialist who was reviewed by the magazine and on their “top” list.  I thought both he and his clinic staff were just excellent.

So who is to say if these are reliable… or not…

DHM