Author Topic: Reviewing results of annual MRI ?  (Read 7939 times)

Debbi

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Re: Reviewing results of annual MRI ?
« Reply #15 on: June 05, 2008, 06:47:48 pm »
Hi Jan-

So glad you are feeling better about this - and your approach sounds perfect.  And, for what it is worth, I don't think you are/were being at all needy!  I would want the same level of information. 

How's Day Two of the BAHA?  (I'll check the other posts on this, too...)

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

leapyrtwins

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Re: Reviewing results of annual MRI ?
« Reply #16 on: June 05, 2008, 11:11:10 pm »
Hi, Debbi -

I am feeling better about this.  Doc says he'd be "glad" to go over the results with me "personally" -  just make an appointment.  And I'm sure he is totally sincere about this; from past experience I know he's not the kind to just tell me what I want to hear  8)

BAHA Day Two has gone well - I'm learning to attach the processor much better now, did a little show & tell at work, and managed to pick up a new nickname "BAHA Benjamin"  :D 

All the sordid details are on this forum in various posts.

Thanks for asking - and for saying I'm not "at all needy".  I've been feeling a little vulnerable lately - circumstances in my personal life - and it's been making me feel like I'm needy.  This too shall pass - soon, I hope  ::)

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

wendysig

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Re: Reviewing results of annual MRI ?
« Reply #17 on: June 06, 2008, 06:16:30 am »
Jan -
Glad to hear you spoke to your doctor and will be seeing him about your MRI.  I was sure if he knew you really needed this his response would be positive.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

leapyrtwins

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Re: Reviewing results of annual MRI ?
« Reply #18 on: June 06, 2008, 08:43:28 am »
Actually we emailed, but it's kind of the same as speaking - unless someone is answering his email for him  :D

Seriously, I just didn't think this was something to initiate through his office staff plus I wanted to give him some time to think about my request in case this was something he doesn't normally do.  I didn't want to "put him on the spot" so to speak.

I'm not surprised his response was positive either - he's a good doctor.



Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Nancy Drew

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Re: Reviewing results of annual MRI ?
« Reply #19 on: June 06, 2008, 07:07:16 pm »
Hi Jan,

Sometimes I think we all forget that we are consumers.  You are not needy.  You just want more information, and you have a right to get that information.  I think it is normal what you are feeling, and I think a lot of people get overwhelmed when they go see their doctor.  I was certainly overwhelmed at my last visit, and I only remembered at the last minute to ask about the comparrison of last years MRI as compared to this years MRI especially since it grew in the past year.  The doctor just popped that CD in and showed me the difference in the shape and where it grew.  I remembered to ask for the written report but now I am wishing I had gotten a copy of my hearing test.  I am always so good about taking a "list" when I go see my primary care doctor, but I never think to do that when I go to my AN doctor.  Maybe is has something to do with really high anxiety or something.  I'm going to call and request my hearing test results.  I want to study them since he went over them so fast during our visit.  I am a control freak myself, but I also find the MRIs to be so interesting to look at.  Amazing to look at all of that brain matter.

I also don't understand why most doctors offices schedule six or more patients for every hour.  Ten minutes doesn't seem like enough.  I love my PCP.  She spends 30 to 45 minutes with each patient.  I think she just loves being a doctor and doesn't really care about how much money she makes.  What a special doctor.  When I had my first MRI the place only made films, not the CDs like they do now.  I kept my films and showed them to my PCP.  She actually explained all of the different parts of the brain to me.  I felt like I was in a classroom learning about brain anatomy!  Best wishes with your BAHA, and I appreciate all of the support and info you give on this site.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Kaybo

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Re: Reviewing results of annual MRI ?
« Reply #20 on: June 06, 2008, 07:30:51 pm »
Jan!
I didn't see this thread until today and even though you have already contacted him, here is my input!
1) You are CERTAINLY NOT needy
2) You have to take care of YOU 1st & foremost and get YOUR needs met!

I am obviously more laid back & don't HAVE to know quite as much as you - we are 2 different people and I think that is OK.  I probably would not do anything - I know I will be seeing him again and having another scan.  Would you like to worry for a whole year or have something done right now anyway?  They'd probably tell you to watch and wait & then you would worry...I think I know you well enough to have figured that one out!  ;D  I guess the big thing is - I don't understand what you want him to show you.  Do you have specific questions?  He has already looked at it twice...that is more than usual...

I am certainly not trying to upset you...just throwing out the other side of the coin!!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: Reviewing results of annual MRI ?
« Reply #21 on: June 07, 2008, 01:30:13 am »
I guess the big thing is - I don't understand what you want him to show you.   He has already looked at it twice...that is more than usual...


K -

excellent points!  I think this is where I get the feeling that I'm appearing "needy".  He has looked at the films twice and there is really nothing to show me - except the place where my AN used to be.  I have read the radiologist's report and get the gist of it, although a lot of medical terms puzzle me; yet I feel like I need a personal explanation/translation from someone. 

So the question becomes, why am I letting the lack of a formal review bother me?  Why do I need my "hand held" so to speak?  I'm normally not an unreasonable person, but I'm thinking this could be considered unreasonable but lots of people.  I'm not sure I know the answer to these questions 100% and I think that's one of the things that is bugging me.  It's almost a psychological thing, and as someone who almost flunked Psychology 101, I'm doing a lousy job of psycho-analyzing myself  ::)

I saw the AN on my first MRI, but only after the neurosurgeon pointed it out to me - even though when he did it was right there in front of my nose.  The disk of my second MRI has a million pictures of my head - obviously an exaggeration on my part, but there are numerous ones - and I have been unable to locate where the AN was and see with my own eyes that it is now gone.  At the risk of sounding "off my rocker", I really just want someone who has a medical degree to show me the relevant picture and say "See; there's nothing there".
 
It may have something to do with the fact that most things in my life - especially lately - are about someone else and what they need.  Subconsciously I'm probably feeling like it's time to take a stand and ask for what I need for a change and this just happens to be the event that I've decided to take a stand with.   

It's difficult to explain.  I totally trust this doctor and I have absolute confidence that he is telling me the truth, yet I still feel I need the peace of mind of reviewing the results with him which makes it appear that I don't trust him at all.  Maybe I'm just having a long overdue "it's all about Jan day".  Maybe it's because this is my first post op MRI.  Maybe I won't feel this way every year.  I honestly have no clue.

Jan, totally confused in IL (not the first time, probably not the last)  ;)



Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

wendysig

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Re: Reviewing results of annual MRI ?
« Reply #22 on: June 07, 2008, 07:20:42 am »
Hi Jan,
I don't think you're being at all unreasonable or needy.  You have gone through a major event in your life by having an AN and surgery.  You've reached a major milestone with your first anniversary.  I don't find it unreasonable to want to understand everything in the report and see for yourself the exact place your AN used to occupy and that there is nothing there now.  If this is what you need for your peace of mind there is absolutely nothing wrong with that.  I'm sure your doctor would agree and not be at all offended by your request.  Everyone needs their hand held at one time or another.  This is one time you need your hand held and I'm sure your doctor won't mind holding it.  As I said before this is about YOU not him.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Kaybo

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Re: Reviewing results of annual MRI ?
« Reply #23 on: June 07, 2008, 08:14:08 am »
Jan~
 
I think you deserve an "All About Jan Day" -- maybe you should go see your Dr. & then go to the spa or something -- do something for YOU!!   :-*
I think you may have hit the nail on the head in what you are trying to discover about why you feel this way.  You are not doing enough to refill YOUR buckets so that you can keep giving to everyone else all the time (your kids, your house situation).  Again, you need to do what YOU feel you need!  Sounds like you have a GREAT Dr. who totally understands this!!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Debbi

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Re: Reviewing results of annual MRI ?
« Reply #24 on: June 07, 2008, 08:31:32 am »
Me again - with my two cents worth.  Jan, I totally understand your need for information and maybe that is why I don't view it as needy at all.  Now, my perspective may be skewed - I am the one who never goes to the any doctor without my list of questions.  I have always been the most nervous and afraid of things I don't understand - so, for me, needing tons of info is my way of keeping the fear away.  I am the offical medical "researcher" in my family - whenever anyone gets anything, I'm the one online reading and making lists of questions for their doctors.  Yep, crazy, but it works for me.

So, that's just a long way of saying - if you need more information in order to feel calm, go for it!  I am going to want a blow by blow when my firs tMRI comes around, you can be sure of that! 

As Kay so correctly pointed out, we're all different and all have different needs and capacity for information.  Don't feel bad or "needy" about asking for what you need!

Debbi - information junkie...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

leapyrtwins

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Re: Reviewing results of annual MRI ?
« Reply #25 on: June 07, 2008, 11:07:08 pm »

I think you deserve an "All About Jan Day" -- maybe you should go see your Dr. & then go to the spa or something -- do something for YOU!!   :-*


Instead of the spa, maybe I should just ask my doctor if he has a private island that he'd be willing to let me use LOL

Seriously, thanks guys.  I'm feeling more comfortable with my quest for personal peace of mind and since the doc is willing to sit down and review things, I'll most likely schedule an appt. very soon.
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

leapyrtwins

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Re: Reviewing results of annual MRI ?
« Reply #26 on: June 18, 2008, 09:42:47 pm »
Just wanted to follow up on this thread and tell everyone how things worked out.

I had an appt. this morning to go over my MRI results with my doc.  I almost cancelled before the appointment, because I woke up with K's comment in my mind "I don't understand what you want him to show you" and it made me feel kind of silly because K had a great point.  But I decided that if my doc was willing to honor my request to go over my results personally, it was my job to not cancel on him.  In the end, I was very glad I kept the appointment.

Despite the fact that I started the conversation asking him if he thought I was "crazy" for wanting to go over the very positive results, to give the man credit he said he understood my need for peace of mind and I don't think he was just pacifying me.  He asked specifically what I wanted to see and didn't laugh or roll his eyes when I said I wanted to see where my tumor "wasn't"  8)

He spent a good amount of time going over the new films with me and showed me the difference between them and the old films.  He also pointed out things in my head that I had no clue about - "this is your hearing nerve", "this is scar tissue", etc. and explained some very fascinating stuff.  I found out that the MRI machine at the hospital were I had my MRI is a great place to go because it doesn't "pick up" the belly fat in my head, which might be misconstrued as something else by a radiologist who didn't realize I had AN surgery.  He also told me that you can't see the titanium screws or mesh in my head because MRI machines don't "pick up" titanium.  He gave me a scientific explanation for that one, but I have to admit, it was over my head - so I kind of nodded and pretended to know exactly what he was talking about ;)

We also went over the radiologist's report and he translated the medical terms into English for me.  Among other things, I found out that the "defect" in my head that was referred to was not really a defect afterall - it referred to a bone in my head that was missing due to the surgery. 

I also asked my doc if it was normal for him to review MRI results with patients when there are no problems present and he assured me that it all depends on the patient.  Some of his patients want a "formal" consultation, some are okay without one.  I, in turn, told him pretty much what I've said here - I trust him completely and didn't doubt what he had told me about my "perfect" results but I had a need to go over them and see things for myself.  I also mentioned that although I'm usually a "tough guy" I found that I needed my "hand held" a little, so to speak. 

It was a very productive conversation and it topped off a very educational morning.  I came away with a greater sense of peace.  I also reaffirmed to myself that my doc was the best choice for me - which was a wonderful reaffirmation.

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

claire1

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Re: Reviewing results of annual MRI ?
« Reply #27 on: June 18, 2008, 10:16:44 pm »
Jan

You are absolutly not childish or needy.  You are a patient that has had major surgery and one that is continuing.  Your dr seems to be very up-right with you in the past and you seem to have great respect for his opinion. I believe that he will honor your request for him to go over the MRI with you without any imbarressing reprocushions. (pardon the spelling, fingers working overtime *)) You chose him to do the surgery and you have done your homework well. I think being honest and up-front with him concerning your need to "Make Sure It's Dead" is not an unreasonable request. I think he will welcome it as an oportunity to educate and dismiss your worries.

Sometimes we forget surgeons are human and won't be understanding about the patients concern.  Let me digress;

My surgeon call me last week to ask me about a letter he got from another surgeon I had seen.  I told him I was seeking out all my options to make sure I was doing what was best for me. After talking for about a 1 &1/2 hours he said that he  had learned so much about patient concerns that the day I had surgery he was still impressed of how much clearer his thinking was in terms of what a patient goes through,not only dealing with the surgery but the emotional and psychological aspect of it as well.  This made an impact on me as well that I had "Done well" in choosing a surgeon that is open to talking with and listening to his patient.  BTW, He call at 6:45 at night.  He said that many times dr's get wrapped up in their day to day bussiness (US) that they forget that the human factor is there and it's patients like me that are there to remind them.

So, Jan, YOU GO GIRL
Claire

Kaybo

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Re: Reviewing results of annual MRI ?
« Reply #28 on: June 19, 2008, 11:41:14 am »
Jan~
I feel so bad - I shouldn't have said anything - I was just stating what a dumb blonde thinks!!  I'm so glad that you did what you needed to feel at peace.  Sounds like your Dr. is awesome and that you really get even more than you bargained for!!

Sorry!!   ::)
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

lori67

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Re: Reviewing results of annual MRI ?
« Reply #29 on: June 19, 2008, 12:28:25 pm »
Jan,

Glad you got to sit down with your doctor to see where your tumor "wasn't".  I don't know how he didn't chuckle a little when you said that!

There's nothing wrong or abnormal about wanting to go over your test results in detail, and you went about it the right way by making an appointment to do it.  Some people want to just try to catch the doctor between patients or squeeze in their million questions at an office visit for another reason.

And we know you accountant-types like to have your ducks in a row and your head "defects" explained.   Not everyone wants that much information, but to each his own!  Besides, you would have driven yourself crazy for the next year until your next MRI wondering if you should have insisted on having the results explained to you.  (and we all know, you're crazy enough as it is!   :D)

I was given a copy of my CD the day of my MRI and my appointment with my doctor wasn't until a few weeks later - that gave me ample time to play with the CD on my own and take a look at the comparisons between last year and this year.  I'm definitely not a radiologist, but I have some idea of what should and shouldn't be there, so when my doctor popped in the CD at my office visit and went over it very briefly, I was content with his "Looks great!".  But you have to do what's going to make you feel content.

Now you don't have to worry about it for another year!   ;D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.