"My Beth Israel Experience" was deleted

[ellenvig]

In the Information on Physicians section, I wrote about my experience with Beth Israel Hospital, and how the scheduling person messed up, costing me time, money, my husband and best friend time off work, and a 5 week delay in my treatment.

Some people complained enough that a post like that trashed the reputation of a world class hospital, and that it can cause emotional distress to those treated there from hearing anything negative about anyone.  Thus, the post and entire thread was deleted.

I am very disappointed in the forum administrators.  I find it irresponsible to others to not let my experience be shared.  If there is a problem there, how will we know if it is not allowed to be discussed?

This was valid information, and my experience.  Is it not reasonable to expect professionalism from the front desk as well as the medical staff.  This is not like a receptionist messing up your hair cutting appointment.

I was also hoping that someone reading about my fiasco there would learn from it so it wouldn't happen to them anywhere, not just at BI.

To those who complained to the forum administrators, just so you know - any time anyone asks about Beth Israel, I will be emailing them the story of my experience there. 

Ellen

[tony]

I understand your views - its not you - its the past
About 2yrs ago the group was nearly blown apart when a radio-surgeon
(whom we shall not name) attracted a certain attention - due to
exaggerated claims, and some nasty outcomes
The group divided into two camps - the accusers and the defenders
Some of it was true - some wasnt
Apart from any legal implications etc etc - a help group became
a source of anger and worry - not the intention at all.
The only way to deal with this is to restrict specfic references,
so while I dont doubt  your experiances  happened
(and your are rightly still mad etc) - I understand
why its no longer there.
To put it in context - before I wrote "my story"
I cleared it with the admin - you have to consider the effect
on folks that are pretreatment etc
Actually on balance this site is alot better than the old one
- the flame wars, blood insults and death threats
tended to get in the way of the healing process
Maybe it is censorship - but its for the right reasons...
Best Regards
Tony

[Crazycat]

I hear you Ellen. I had a scathing message written about that and decided not to post it because I really didn't want to cause any trouble. I've now reconsidered. There was some good information pertaining to physicians as well as the medical establishment in general in that thread and to have it deleted because of histrionics and over-wrought emotions is ridiculous, especially considering that the information being presented was pertinent and TRUE. I had contributed a few good blurbs in that thread as well and I resent having it deleted. I think that the censorship is becoming a little too senseless and touch-sensitive here. I'm a level headed person and if I was wrong I'd be the first to admit it. I sincerely believe that there was nothing amiss with what was being discussed under your post.

  Some of the things I see happening in this forum are doing nothing more than gradually alienating me from desiring to participate at all. Like many other people here, I've been through the mill with a gigantic tumor and hydrocephalus, yet I'm being made to feel guilty and even silly that things worked out well for me. Maybe it's wrong of me to linger here because I thankfully don't have any real problems aside from the customary single-sided deafness.

  As far as the medical establishment is concerned, there's both good and bad; brillant and incompetant; caring and cruel, just like in any other profession or walk of life. In my A.N. journey, I've experienced both sides. The reason my tumor grew to the proportions it did was because I was shunned from one hospital because I didn't have insurance at the time - I had an MRI scheduled that was actually cancelled at Lahey Clinic. I'll never forgive them for that. I was brought to death's door I went so long with it. Most people would have been checked and scanned at the first sign of hearing loss. I went six years beyond that relying on physical fitness to carry me through - which is probably what saved me. It got so bad that I was beginning to believe I had Lou Gehrig's disease. 

   Sure I have an axe to grind, but for good reason. So when I hear complaints like Ellen was making in her post, I know what she's talking about and my blood begins to boil because of what I had experienced. The medical world is an imperfect world. Why? Because it is run by humans.

   I remember back when I was in college, I had an Anatomy and Physiology course. All of my classmates were in either the Ultrasound or Radiology programs. Our instructor, who was actually a theolgical seminarian in his younger days, prefaced the semester with a short lecture on the evils of the profit-driven medical establishment, knowing that all his students were bound for a career in it. Although I understood what he told us, it wasn't until I went though my A.N. experience that I really knew what he was talking about. Yet, I miraculously got through it all: I received care from some of the most talented doctors on the planet and for this I will be eternally grateful!

 Sorry for venting but it had to be done!   My god.......It's 5:38am!!!


  Paul

[Joef]

Paul  ..  I could NOT have said it better myself ..!!!!

[Captain Deb]

According to reliable sources, the problem "down there" at BI has been fixed and the higher ups at BI are aware of the paperwork snafu Ellen experienced. It  is doubtful that this will ever happen again.  Threatening to email people, who are frightened and confused about being newly diagnosed with an AN and seeking treatment there,  with an anecdotal negative experience, is counter-productive to the purpose of this forum. I would also be interested to know how Ellen's treatment was delayed by 5 weeks if  Gamma knife was scheduled in Mid August. The dates of the BI appointment were not posted. The upside of this whole thing is it is an important lesson that it is imperative to get all films and paperwork submitted well in advance of the "deadlines."

Capt Deb

PS Wishing Ellen the best possible outcome with her GK today!

[Captain Deb]

I think the forum admin felt that Ellen's post, being under "Usefull information on physicians" may have been an inappropriate place to post it since it contained no information on physicians, but was rather a rant (her word, not mine) against front desk personell. Had it been posted here in General Discussion, it probably wouldn't have been a problem.  Of course she has a right to share her experience here! And we all have the right to agree or disagree.
Capt Deb

[ppearl214]

Hi all:

My Yahoo horiscope for today reads as follows:

Quickie: Put thought into how to maintain good energy in your life -- and get rid of the bad.

As Ellen is entitled to her opinion and to share her experiences at BI, and so am I.. and so is anyone else that participates on this forum.  I am going to attempt to put an end to this and not in a negative way because I do believe in what my horiscope notes above.

BI is aware of Ellen's situation and what she ran into. I will share that the radio oncologist, himself, is handling the situation with the front desk.  He did not pawn it off on someone else and say "I'm too busy, you handle it".. but he is handling himself.  So, that says a great deal about Dr. Mehatevan and his character.  He is a very busy man and is leading the charge on correcting what happened at the front desk.  So, now that this positive action that he is doing will help to put an end to what happened to Ellen by knowing corrective actions are being put into place, by the lead dr of the CK unit.  He was upset to learn of this and now is taking control of the situation.  Thus, issue is being handled.

As for me... I am happy to report that my tumor has shrunk (based on initial written MRI pre-treat report and 5 month post-treat report). So, BI did well.. and my AN is proof. So, yes, my experience with the treatment team has been positive and I continue to maintain faith in my decision... just as anyone else should in their treatment choices.  My decision for BI to treat me has worked well for me.... so, Ellen has shared her negative issue with them, I share my positive outcome and as becknell notes, we can make our own decisions... and hopefully pre-treatment AN'er will weigh out for themselves.

I have my pirate socks on today for Ellen. I want her to be well and hope that the GK works for her... I wish nothing but wellness and my pirate socks being worn today is a show of solidarity of AN patients.. and my support of her and her choice.

So, know that we are all entitiled to our opinions, our differences, thought processes, etc. Please, let's all not forget the reason we love the ANA board and the support of the ANA... we are here to support each other.. we can agree to disagree... but, we are in the same boat, in many ways, when it comes to our AN's.  Let's show decorum, let show continued support... let's show what it really means to be an AN'er.... we are all here for each other and support is what we need.... please keep that in mind.

Ellen, best wishes, Shana Tova to you and hoping your new year starts off on a terrific note by today's treatment.

Phyl

(Addendum:  BTW, I would like to clarify that it was not me that contacted forum admin about the original post to complain or ask to have it removed.  Just to clear that up. Thanks)

[Crazycat]

Thanks Joe!!!

     Paul

[HeadCase2]

 Ã‚ I found nothing inappropriate, from an ANA forum perspective, about that thread.  I'm disapointed first, that someone felt they needed to complain about it, and second, that a forum administrator would actually delete it.
 Ã‚ All [non-spam] AN related posts have merit.   As others have mentioned, we all have the ability to skip threads we find no value in reading.   Posts reflect as much about the poster, as about the subject of the post.  As a forum reader, we all form opinions about which posters and threads that we find informative.   I would be surprised if every forum partipant has not found at least one thread that they really didn't agree with.
 Ã‚ I find it a little insulting that an administrator would think that they needed to censor this post.  Did they think that we were not adult enough to interpret the thread?
 Ã‚ If someone was unconfortable with the criticism in this thread, what should we do with some of the overly positive Doctor recomendations?
 Ã‚ Forum participants should be able to share both positive and negative experiences in dealing with AN.  That is the basis of having the forum.
Regards,
 Rob

[Gennysmom]

Just thought I'd throw my two cents in even though it's worth much less...I missed out on reading Ellen's experience, so I obviously know squat, but my feeling is that unless it was exceedingly vile for no reason (and I'm guessing it wasn't)  an opinion and experience by one person is just that...and the lively discussion from it could be worth something to someone, at the very least put on someone's doublecheck the clinic checklist.  I found, from my hospital stay, that you cannot assume that people in a profession know what they are doing....my visit was rife with mistakes, but I didn't always know it on the first mistake (and with the CSF leak, some of the mistakes were life threatening).  As a patient, and a patient's caretaker, you have to be educated and vigilant in follow through.  We can all learn from mistakes, especially when it shows others enough to ask the question "is this right?".  Hopefully, I'm not too off base from the original intent so that I just sound like a blathering idiot.

I hope your treatment went well today, and you are at home resting peacefully!

Yea Phyl, you incredible shrinking woman!!!!!

[krbonner]

It seems to me that, given the complicated nature of our medical conditions and the relative rarity of ANs, most of us have been run through a gamut of medical professionals and institutions by this point.  And as we slog though the medical malestrom to try to make the best decisions we can, we will undoubtedly come across people and institutions that don't "meet out needs", so to speak.  I certainly have!  It may be just the result of a single person's bad day, or maybe representative of something more systemic. 

I would hope that if I had a bad experience I could post about - not as a way of saying "Stay Away!" from a particular doctor of hospital (that may be perfect for someone else in a different situation), but as a way of saying "Here's what happened to me - I hope others can learn so they can avoid it in their situation."  The latter is, as I remember it, the tone of Ellen's original post. 

We should be able to talk about the good and the bad like civilized adults.  We are here doing research and use what we find to the degree we think it's important.  Or maybe I just live in a fantasy world...   

Ellen - I didn't make out of bed until 4:30pm today, so my socks weren't actually on my feet.  But I've been thinking of you all day and hope to hear good words from you soon!

Katie

[ellenvig]

Hi,

I'm home from my GK treatment.  Yesterday was not so great, but I'm feeling better today!  I'm very encouraged that most of you support my opinion that we can only make informed decisions with the free exchange of information!

Paul, I was wondering what you had to say about your posts being deleted.    I'm in the same boat as you as far as most of the threads go.  How are you being made to feel guilty?

Phyl, what is being changed there?  Congratulations on your latest MRI results!!!

becknell, I am a breastfeeding counselor and we have a saying, "Take what you need and leave the rest."  We give out so many recommendations to women, and only some of them are going to be applicable to her, her baby, her lifestyle, etc.

Rob, thank you for mentioning the overly positive!!

Gennysmom, you're pretty much spot on. 

Katie, can't wait to see you at the brunch!

Ok, back to bed....

Ellen