Author Topic: Awful Neurotologist appointment today!  (Read 6593 times)

Nannybee

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Awful Neurotologist appointment today!
« on: June 14, 2013, 08:55:20 pm »
My ENT who diagnosed my AN (and on the same scan, the meningiomas) has been very supportive but was honest in his limited experiences in dealing with AN patients. He referred me to Dr. Michael Ruckenstein, a neurotologist at Penn Medicine and my long anticipated appointment was today. It was the worst specialist visit I have had throughout this process. He came in the room, said "why are you here". I told him I have an AN. He said "but I understand you already had some sort of treatment". Yes, but I'm here hoping you have some answers for me about my unbearable tinnitus that keeps me from sleeping and is preventing me from being able to do my job, the constant off balance feeling and my concentration problems. His answers: go to the Mayo Clinic if you want multidisciplinary treatment, start balance therapy and go for neuromonics. He actually took the quality of life questionnaire I was given by the staff to fill out and threw it in the trash! I cried all the way home. I was so hoping that he would have something important to add, but I felt belittled and trivialized.
This has been one of the top emotionally upsetting days since diagnosis!
Just needed to vent...thanks to the many ears who live with our unwelcome little visitors.
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear

jsanders1379

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Re: Awful Neurotologist appointment today!
« Reply #1 on: June 14, 2013, 11:18:33 pm »
That is inexcusable...what a jerk! sorry you had to go through that... ???
Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver

Kathleen_Mc

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Re: Awful Neurotologist appointment today!
« Reply #2 on: June 15, 2013, 12:23:59 am »
I agree, jerk!
Maybe ask to be sent to someone else for a "second opinion"
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

prisca

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Re: Awful Neurotologist appointment today!
« Reply #3 on: June 15, 2013, 05:10:50 am »
I'm a big fan of the TV show Big Bang Theory. In it the guys often try to do a mind trick to make people's heads explode (so far without success :D).  I'm trying it now on your evil doctor.  Probably didn't work, but the image of his head exploding is a happy thought.

Take care.

jsanders1379

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Re: Awful Neurotologist appointment today!
« Reply #4 on: June 15, 2013, 10:13:07 am »
LOVE that show!
Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver

Echo

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Re: Awful Neurotologist appointment today!
« Reply #5 on: June 15, 2013, 11:28:36 am »
I think many of us can relate to having a similar appointment.  I had one Otolaryngologist known for sending out long detailed letters snap at me on one of my follow up appointments.   I asked him a question that had been addressed in the letter I received.  He snapped "didn't you read the letter - that's why I send them out."   Well, given the amount of info I've been processing during the past several months and stress I'm under, I just may have let that one detail slip even though I read the letter several times!!   

The neurosurgeon I have ended up with more than makes up for that experience with his kindness and compassion.  Just chalk this up to one bad appointment and move along to a kinder Dr.

Good luck and don't let this experience bother you another moment.
Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

nftwoed

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Re: Awful Neurotologist appointment today!
« Reply #6 on: June 15, 2013, 12:34:18 pm »
Hi Cathie;

   Are you willing to name the OTO Dr. who snapped at you? I ask because I'm aware my Neurosurgeon and Neurotologist monitor this site on occassion. The Neurosurgeon says group participants do a pretty good job of correctly covering their bases.

Echo

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Re: Awful Neurotologist appointment today!
« Reply #7 on: June 15, 2013, 01:58:31 pm »
I don't think in my case identifying the Dr. is required.  I live in Canada and the majority of these posts appear to be from the US.  The Dr. is excellent at what he does and I appreciated the help and diagnosis he provided.   He is extremely busy, has a very direct approach and I suspect considers answering questions he feels he has already addressed to be a waste of his time.   That particular appointment may have been on a day when things were not going well.  I had 3 other appointments with him where he was very direct in his approach, but he was never rude.  My point is, given the number of consults and specialists we see, I'm quite sure many of us have had appointments where we have been left agitated, in tears, or just plain fed up. This isn't an easy road to travel and sometimes we just need to maneuver around the difficult people, be it the actual specialists or their support staff.

Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

Jim Scott

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Re: Awful Neurotologist appointment today!
« Reply #8 on: June 15, 2013, 02:34:32 pm »
Nannybee ~

I'm sorry to learn of your terrible treatment by an arrogant and insensitive neurotologist (Dr. Michael Ruckenstein at Penn Med). 

He obviously had zero interest in your case and didn't have the grace to tell you so with some measure of respect.  Unfortunately, a minority of doctors are like this, full of themselves and considering their time worth far more than yours with no regard for anyone's feelings but their own.  In this regard, these physicians are not much different from a lot of impatient, self-important people we all have to deal with from time to time. 

Frankly, anytime I've had an appointment with a doctor and he walks into the examination room asking "why are you here?", I instantly lose confidence in him because I realize that either the doctor is too busy to bother reading whatever information he has about my medical condition or just isn't very interested in my medical problem.  In that case, I have little interest in wasting my valuable time with this doctor.  Those visits are one-time-only and if the doctor's office calls to ask me to schedule another appointment, I politely decline-  and let it go at that.   

I suggest you follow Echo's advice and chalk this unpleasant doctor visit up to experience, then move on and seek another physician.  One who actually cares about the new patients that see him and that doesn't consider himself too busy and important to demonstrate some simple courtesy when telling a patient that he cannot help her.   

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

phantagrae

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Re: Awful Neurotologist appointment today!
« Reply #9 on: June 15, 2013, 03:44:08 pm »
I'm a big fan of the TV show Big Bang Theory. In it the guys often try to do a mind trick to make people's heads explode (so far without success :D).  I'm trying it now on your evil doctor.  Probably didn't work, but the image of his head exploding is a happy thought.

Take care.

I love Big Bang--and there's one episode where Sheldon is complaining that he's hearing a high-pitched sound in his ear ("an octave above Middle C") and at the end of the scene he's humming the pitch and says, "Sure sounds like a tumor pressing on the auditory nerve..."

I saw that episode shortly after I was diagnosed and I didn't know whether to laugh or cry... :P
Numbness on right side of face beginning some time in 2012 through early 2013
MRI 4/15/13
20mm x 19mm x 16mm intra and extra canalicular AN on Right Side.  ("Largely extracanalicular")
FSR treatment beginning on July 22, 2013--going for 30 treatments

Nannybee

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Re: Awful Neurotologist appointment today!
« Reply #10 on: June 15, 2013, 05:25:27 pm »
Thanks for the words of encouragement everyone. I agree Jim, even though they had my MRIs I got the sense that he didn't even look at my records. On the other hand, my neurosurgeon sits next to me at my visits and has my MRI up on his laptop screen and goes over it with me, discusses risks/benefits of treatment options (I also have the multiple meningiomas on the opposite side of my AN) and encourages me to ask questions and do research.
This guy yesterday just kicked me when I was already down. When he took the quality of life survey from me and threw it in the trash it was like a punch in the gut.
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear

nftwoed

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Re: Awful Neurotologist appointment today!
« Reply #11 on: June 16, 2013, 09:14:41 am »
Hi;

   Guess I won't take care of a Drs feelings. Did they expect an upper level speciality to leave them w/o challenge and allow them time to lead a normal life?
    Drs. are as human as we and wait until they're on the "receiving end" of ill health! Of course, they have all their "care taker" colleagues to assuage their feelings.


I don't think in my case identifying the Dr. is required.  I live in Canada and the majority of these posts appear to be from the US.  The Dr. is excellent at what he does and I appreciated the help and diagnosis he provided.   He is extremely busy, has a very direct approach and I suspect considers answering questions he feels he has already addressed to be a waste of his time.   That particular appointment may have been on a day when things were not going well.  I had 3 other appointments with him where he was very direct in his approach, but he was never rude.  My point is, given the number of consults and specialists we see, I'm quite sure many of us have had appointments where we have been left agitated, in tears, or just plain fed up. This isn't an easy road to travel and sometimes we just need to maneuver around the difficult people, be it the actual specialists or their support staff.

Cathie.