[tbunny1]

:bigsmile:Hello fellow lupies. I went to see a new specialist onTuesday, a Neuro-Opthamologist. This is a neurologist who specializes in only the optic nerve. I was not even aware such a creature existed until I met with my new neuro last month.

I have had troubles with optic neuritis (inflammation of the optic nerve) in the past, and even went blind in my right eye at one point. It appears I have had several other bouts of it since then that were not symtomatic, as I have damage in both eyes now. I also have optic neuritis again in the right eye. Oh boy.

This is not what has got me in such a tizzie. I saw this doctor at Wills Eye Hospital, the top teaching hospital for eyes in the US I am told . I was seen by three residents, I think six (or more!) interns, and two attending doctors. Each one of these learned folks came equipped with a very bright light that they wished to shine in my eyes, while they were dilated, of course. :lens:

I think the damage they are seeing in my eyes is from all the blasted lights! Argh..... :blink:

hno: The worst part was I was not asked to participate in this "class adventure". A steady stream of doctors was brought in to view my optic nerve. The conversation was never directed at me, just about me. Bodies pressed against mine (I'm a busty girl), and not everyone practiced good oral hygeine.

I felt humiliated, manipulated, used and de-personalized. I felt like a BIG BUG under a microscope. I was treated like a test slide - no courtsey, no may I please, no would you mind if. :ermm:

At what price do I keep going to all these specialists hoping someone will have a clue how to stop the progression of my disease? It seems the higher up the chain I go, the worse these doctors get.

:wacko: This disease make me nuts some days. This event has made me nuts for several days in a row now. I can't seem to shake this resentment I'm harboring over the whole affair.

:hehe: It should be legal for me to take a cattle prod to doctors appointments I think! How fun would that be?!:hehe:

 

[Zoi]

Hey there,

Having lots of docs, residents and medical students come in and examine you can get incredibly annoying yep. I've been there and believe me at the time I felt waves of murderous rage were threatening to overcome me... More than once have I walked away from appointments because of situations like the one you describe and more than once have I cried and shouted and thrown things because I've felt trapped and dehumanized by such experiences... :blush:

Having said all that looking back at it all now I understand that part of, if not all of, my anger at the time was "misplaced". I was angry sure, but I wasn't angry at the poor medical students or the docs who looked at me fascinated by the pathology of my disease; I was angry at the disease that was forcing me to have to go through such appointments and experiences in the first place... :worried:

Now I've discovered, and this may sound simple but it really wasn't so simple for me to learn, that when things like residents and med students being present at appointments annoy me the best solution is to turn to the person one is having the appointment with and firmly, but politely demand the residents and students to vamoose. You're perfectly right, they should have asked if it was ok before they showed up but just because they showed up doesn't mean you can't ask them to leave if you're not 100% ok with them being there.

I'm sorry to hear you're going through another bout of optic neuritis and that you have damage in both eyes from previous bouts....

How is your vision? How is this current bout of optic neuritis being treated? Are your lupus and APS under control (other than the optic neuritis)?

:flowery:

Zoi

 

[KarolH]

Tracy,

Gosh, I am sorry your experience was so bad. I did not deal with this at Wills Eye.............only one doctor and his assistant.

We will chat, I will call.

Keep your chin up my friend.:wink2::wink2::wink2:

 

[keebler]

((Tracy))

I am sorry that your optic neuritis is acting up and you have damage from previous flares.

Going to a teaching hospital has its pros and cons. You are right they need to ask you "if you don't mind" that some students come in. Maybe that should be a class, in manners.

When my dear daughter was in a teaching hospital it got old very fast and we asked the pack that was following the doc around to please leave.

Hang in there,
Lyn

 

[LolaLola]

Hey, sometimes we can cope with it, sometimes we can't. Eye problems are disorientating and unpleasant, and it sounds to me like you were put through way too much. I am usually all for lettings Students etc. have a look. The one time I drew the line was when I was having big neuro problems , hallucianations etc. I just did not want to discuss it in front of an audience. The Consultant just said to them,"you heard the Lady" and they melted away. I am also sensitive if students want to look at my 17 year old. She is more than happy for them to listen to medical history but if she is not happy for them to see her undressed, we draw the line there. The only other thing I have had to make a fuss about in several hospitals, again with my Daughter, is drawing blood. Sometimes they have not been able to find a vein and think hey will turn it into a Party, where they all "have a go" at sticking needles in. I am afraid if it it just for routine bloods, I find that totally unnecessary. You have been very kind letting them all look at you, but I am sorry you have been left feeling like an object. ANother time, have no worries about calmly saying no if you aren't up to it.
x Lola

 

[onetay]

Tracy,
I guess someone failed to tell you that you were going to a teaching hospital :rotfl:. This parade was all for you and no one told you I am so sorry. Your right they should be asking if it is ok to us you as a lab rat, most of the time they think you came to them so you know, but that is not made clear to everyone . You know it is ok to ask to talk with someone to let them know that you are not comfortable with this and would just like to see a doctor and not be part of the teaching. I am sure they found you very interesting and that was why you got all at attention. Try being flattered not sure I have seen so many looking at one person . You may have just helped some future patient or doctor to understand this much better. I hope this experience did not leave you too uncomfortalbe as they were just trying to help you with or without your knowledge.

Try and take it with a gain of salt and know better the next time. Make sure at some point you ask some question and make your feeling understood things will be better for both you and the doctors :wink2:

 

[tbunny1]

Thanks Tammy - you know my husband has had the same conversation with me. I know all of these future doctors will remember what an inflammed optic nerve looks like due to my "contribution".

I don't mind helping out, and I know to expect this at a teaching hospital. I think what I resented the most was being talked about in the third person. I think all doctors, new or old, need to remember that we are all human beings and are due respect and courtsey.

I am not a lab rat!

 

[KarolH]

OK, it really boils down to the whole 3rd person thingy....... I UNDERSTAND NOW!

I have had this happen to me before and I know how annoying it can be. I guess thankfully my personality does NOT allow any MD to treat me like this.

I don't know if this is a good thing or not but I can't sit back and let this happen. Don't we have enough to deal with then to be treated as if we don't exist???

Sorry this happened to you. Feel free to take me with you next time. I will set them straight for ya...:wink2::rotfl:

 

[Zoi]

Ehm....They were talking about you in the third person?!?!?!?!?!?! In front of you...?!?!!?

I didn't get that at all from your first post, sorry.

Oh, I'd be furious too if people started talking about me in the third person while I was standing right there.... I'm sorry you had to go through that... Sounds like a horrible experience indeed....

:foryou:

Zoi

 

[Monica3]

Teaching the doctors...

Dear tbunny1,

So sorry to hear about your frustrating experience...it can really be draining, especially when you are already feeling poorly.

You have received lots of good advice on how to think about this the next time and how to handle it. I have only one other suggestion: write a letter to the head of the program. Explain that you understand how the teaching hospital works, but that you have a few suggestions that might be incorporated into their curriculum and then list those things that irritated you. I think if you state it this way, they will listen and maybe even incorporate what you say into their training! It can't hurt to try, and you might even feel better for doing it. Of course, tone is important so that you continue to receive decent care when you return. Sometimes DOING something feels good.

Just an idea. Hang in there! Hope you are doing better soon.

Monica

 

[Douglas]

Howdy,
Years ago, long before they knew I had Lupus, I was a lab rat for a rheumatology class. I felt sorry for the students! I also did not like it one little bit but had this feeling I was contributing to the next generation of medicos.
Who knows, maybe one of the students who humiliated you will someday find a cure for Lupus. At least one can hope.
Douglas+

 

[Lily]

Hi Tracey :hug:

Never under any circumstances should they talk about you in the third person and that goes double for the fact it was a teaching hospital Just what do they hope to teach these upcoming specialists!! How to alienate patients, how to piss off someone who is already pissed off because they are so unwell and other docs are having trouble figuring it out.

I really agree with Monica's suggestion of writing to them and explaining what it feels like to be treated like that and perhaps in future they might like to consider the patient in all this. After all without us they would be out of a job :hehe:

I go to a teaching hospital for all my treatment with various specialists. ALWAYS and each time they ask if it is ok for students to sit in. To top it off the students are ever so grateful and courteous to me it makes me embarrassed :lol: My Neuro is the only one who has students in, my other docs don't......................but that goes to show you just how bamboozled they are with CNS lupus issues and I'm only too happy to have them sit in and maybe learn something. If they were rude or ever pretended I wasn't there when chatting I think I would hiss at the lot of them

I hope they come up with some answers for you after that debacle (((((((Tracy))))))

love
Lily

love
Lily

 

[onetay]

Tracy,
I did not mean anything about the lab rat thing other than we can be made to feel that way sometimes by doctors and others of the medical community. I am the first to admit that when they start talking medical terms it is hard for me to follow what they are saying. It is even worse when they are talking about me instead of at me. I hope you start feeling better soon.

 

[Pink Pearl]

Hi, and sorry you had this happen to you. I have also seen neuro-opthalmologists. Yup, they are a rare breed. Many of them tend to have become so mired in academia that they forget that the body about which they are so excited is actually connected to a thinking and feeling person.

If this was just myself, I would have asked the doc for a private moment, not in front his students, and told him how I felt about being talked about while I was there, in person! Many faculty forget that while teaching students, they need to connect the teaching about the person, not around the person.

I hate going to teaching hospitals for this reason. There are so many students that it drives me nuts at times. Other times, I don't mind. The attending doc should have asked you first if you minded having the students around, not presuming it. It was a teaching moment he could have used and instead tromped over.
At least if you need to go back, you will have more idea of what to expect and can confront it up front.
Sally

 

[BigSis]

If this had happened to me I would feel equally as pissed as you did.
The medics should always ask permission before getting in the students to peer at you.
While of course it is important for them to see a rare example of disease.......what lesson it taught by the tutors treating you like ,as you say 'a bug under a microscope.'

There is no excuse for this lack of common courtesy.

 

[ALWIN]

Flipping heck Tracy I do not know how you put up with all that bad behaviour.

You have my permission to take a large cattle prod next time and I think you should set your imagination free as to which part of their anatomy to use it on. You mentioned feeling humiliated etc. Quite frankly I would have felt abused. And I would have been as angry as a wasp.

I do understand it si important or peole to learn for treatment to move forwards, but surely basic politeness should not need to be trained into people.

I know absolutely nothing about optic neuritis (so thank you for letting the medics have a good look - the rest of us never know what we are going to need help with in the future). I hope you get the right sort of help towards improvement.

Take care.