MRI Inconsistencies

[Vincent87]

It has been a long three years since I last logged in.  To say that Mom had a bad outcome from GK would be an understatement (i.e. four nursing homes, two trips to rehab, emergency VP shunt surgery followed by a shunt revision because the neurosurgeon didn't put the catheter deep enough in her belly).

For the past two years her AN has been stable.  But last year, while in the MRI, the GK MD saw her and decided to slip in his own script for a MRI.  This is a MD who pushed himself away from the table sonic fast; he wasn't aware that over-prescribing Decadron (for brain swelling) can bring on psychosis.  This GK MD saw her, speaking to his secretary and he never acknowledged Mom.  She had a panic attack in the MRI-she was in it for 2 HOURS-and I was outside on my cell dropping F-bombs at the hospital administrator that he wasn't Mom's MD and that the hospital suddenly lost the memo about shunt protocol.  (That's the back story.) 

Needless to say, we have no intention of going back to that hospital for a MRI.  Instead we went off-campus as it were; when I called the neurosurgeon's office to make an appointment for the shunt adjustment, the secretary offered to book Mom's MRI.

In reviewing Mom's MRIs from 2001 there does seem to be huge inconsistencies from one hospital/MRI machine to another.  The neurosurgeon's PA calls it "technical differences."  Mom's MRI from last month shows some growth (from 1.9cm x 1.8cm to 2.1 x 2.0).  She has her usual symptoms:  Increased dizziness as the humidity rises, still stone deaf in her left ear.   The radiologist at this new place also said that Mom has an arachnoid cyst.  Hmmmm.  What has been noted on MRIs for more than 10 years is she actually has encephalomalacia (from a previous surgery).   Scary that this radiologist didn't have his handy-dandy Wikipedias nearby.

Has anyone ever requested a second reading (from a radiologist)?  I did complain to the PA that the last month's MRI report had the least amount of detail I've ever seen.  It has been my experience that neurologists do really good with reading reports but not films.  (I guess they were out sick that day in med school.)

I've not yet told Mom.  (We're between neurologists.  That's a whole other drama; Mom will have a new neuro by January 1st.   I so dread this Christmas; I don't want Mom to be blindsided even though she will be.  I want her to hear the bad news from me.)  I know her response will be to line up hospice.  Mom is 73.  (These doctors pitch GK as this Miracle Machine.  It's not; it's just a matter of time before there is a class-action lawsuit.  YES, I have truckloads of anger!)  I have an appointment with my ENT who is not in that Skull and Bones posse at the hospital. 

As always, I wish this forum didn't exist.  There's so much indifference and ignorance from the medical community.  These are nasty ^%&ing tumors.

Good thoughts to you all.

[Jim Scott]

Vincent ~

Your post is devastating in it's description of what can only be described as medical malfeasance.  I'm deeply sorry to learn about the many complications your mother has endured. 

As you know, many of our members have had good experiences with radiation treatment.  I underwent 26 FSR treatments with no negative effects but a definite necrosis and slight diminution of my previously surgically-reduced AN.   As we always warn the newly diagnosed, although surgery has it's pitfalls, radiation is not a panacea and carries it's own set of risks. 

It's fairly common knowledge that readings will vary from one MRI apparatus to another.  2 mm seems to be the accepted differential.  I would have no qualms about requesting a second evaluation of an MRI scan from a radiologist.  Insurance may balk at paying for it but that's a separate issue.   Finally, I can wholeheartedly agree with you that acoustic neuromas are, indeed, devilish things, despite their small size.  As my radiation oncologist once commented, "it's their location that causes all the problems".  He was absolutely right.  As you are correct in stating that there is indifference and ignorance in the medical community - and that indifference and ignorance can sometimes have damaging effects on patients that put their trust in the hands of physicians.  Fortunately, the ignorant and indifferent medical professionals are a relative minority and most AN patients have a good, if not ideal, experience as they battle their tumors with surgery and/or radiation.  I'm very sorry that your mother has been faced with the negative effects of doctors who were indifferent and/or ignorant.  Your anger is understandable.  Most of us would have the same emotions in your place as you watch your mother deal with these issues and you're forced to argue with hospital staff over things that shouldn't be happening in the first place.

I can only offer my hope that these complications you've outlined can be surmounted and the questions answered in the weeks to come.  Your mother and you will be in the prayers of many, I know, which is no small thing.  These forums exist to offer knowledge and advice to AN patients but also a way for patients and family members to vent emotions that cannot find a satisfactory outlet, elsewhere.   Please feel free to vent here whenever you feel the need, Vincent.  We do understand and you'll always have our support.

Jim

[Vincent87]

As for the differential of 2mm...is that common (medical) knowledge?  I honestly feel that ALL of Mom's MDs can't even spell acoustic neuroma!  It's sad:  What I've learned is from Google, this website and PEOPLE Magazine.  (Michael J Fox also complains of having a bad heavy head as the humidity increases even during the winter months). 

Maybe because it's getting long into the night/morning, but I'm actually thinking it could be greater than 2mm.  Or perhaps it's just wishful thinking-or really stupid radiologists-or Mom's continued bad luck!!

For instance: 

5/2005-Hospital #2=2.5 x 2.2 x 2.3
6/2005-Hospital #1=1.7 x 2.1 x 1.0
7/2005-Hospital #2=2.5 x 2.1 x 2.5
8/2005-Hospital #1=2.2 x 2.1 x 1.8

12/2005-Hospital #1=2.3 x 2.2 x 2.3
1/2006-Hospital #3=2.5cm


As for our mystery GK MD...he's quite A-list.  I do remember our first meeting with him.  We were all (Mom, me, my sisters) impressed by his compassion.  When it hit the fan, we learned quite abruptly that he's a Flight Kinda Guy.  Hindsight is everything:  I use the analogy that when you go to a GM dealership, there's never any mention about the Ford dealership around the corner.  When you go to a GK MD, they don't ever talk about resection.  I am TRULY happy for those who have had good results with GK/surgery.  But from what I'm reading, no one walks away unscathed-yes, it's a combination of the AN's location...and treatment...and luck.  Sorry for being Donny the Downer.  Plus, I believe a lot of THIS has to do with it being an orphan disease.  It's like everyone with an AN (and also their families) are living a 24/7 episode of MYSTERY DIAGNOSIS.

Again, thanks for responding-and letting me vent.

[leapyrtwins]

Vincent -

your post is a great example of why AN patients should talk to doctors who do both radiation and surgery; whether it's a doctor who does both procedures or a doctor who does radiation and a doctor who does surgery.  It's important to cover all your bases when your AN is small enough for either treatment.

I'm very sorry to hear about your mother, she's been through more than her fair share of problems on her AN journey.  It's very unfortunate that GK didn't work for her, but I'm with Jim, it's a great treatment choice for many.

Although it's preferable to have MRIs at the same facility for comparison purposes, I can totally understand why your mother wouldn't do so.  I've never asked for a second opinion on an MRI, but I don't see anything wrong with it.  In fact, it's your mother's right as a patient. 

You need to do what is best for your mom, so switch doctors or whatever you need to do.  I don't know where you are located, but if you give us a general idea perhaps someone on the forum can recommend a doctor for your mom to see.  My doc does GK as well as surgeries and I know for a fact that he sees patients that have had bad results with doctors outside of his practice.  I'm sure there are other docs who do the same. 

Please don't hesitate to let us help you if we can.  Prayers to your mother - and to you.

Best,

Jan

[Vincent87]

Thanks Jan...but here's the rub and it's all old news:  We did ask surgery vs. GK.  We asked Mom's neurologist, her ENT, her PCP.  In our neighborhood they treat the GK as if it's this Ginsu Knife-everyone should have one!  (This GK MD is so big that we had such a small town mentality that we just felt so $%*damn honored to wrangle an appointment with him.)  I asked repeatedly, over a FOUR YEAR period, to all about the good and the bad or in THEIR terms the risks vs. the benefits-even minutes before he screwed the frame into Mom's skull.    I asked about Mom losing her hearing and balance and yes, death.  Mr. GK MD said since her hearing wasn't affected prior, it won't be after the GK...and if she has any issues, he'd prescribe some steriods and she'd be good as new.  It's all blah, blah, blah and those great moments Mom had are in the Archives.  We took notes, we taped every appointment.  We did due diligence.  Decadron should have a Black Box warning.  NOW the bigger issue is because Mr GK MD is such hot stuff, it's tough to find even a neurologist who is willing to see Mom. 

My mother's head has become this political football.  (A bad outcome by the esteemed GK MD-IMPOSSSIBLE!!!)  This isn't paranoia-my sisters and I have been told straight out.  (We never filed a complaint or a malpractice lawsuit.)  Doctors will always back up their cronies (even the bad ones).  Sadly, I can never reveal where we live-I appreciate your kind offer; we're not in your time zone is all I can say-then the $%^& would really hit the fan.  If he bullied my mom in a MRI last year and the hospital administrator didn't intervene, well there you have it.  Mom has just become this footnote.  He completely looked through her in the waiting room; she was devastated-she thought he was an honorable man.  My mother was basically held captive-she had no choice-for more than 1.5 hours.  Her panic attack was brought on by thinking they found something.  No one explained that she was being scanned twice.   This guy is GOD.  In the meantime, I ask RNs and PTs that we've met through the years for local referrals.  (Mom's not in any condition to fly.)

This whole thing is the definition of a Double Whammy-you got your nasty AN, you got your nasty/incompetent/ignorant MDs.  Makes for a real, real, real long day.  I'm hoping that Mom's ENT can fill in the gaps.  What I suspect will happen is that the ENT will have Mom scanned at the facility he prefers and then we'll have another inconsistency.  I'm thinking the Truth is out there-but we won't know for another 6 months (when Mom should be scanned again).

This sucks.  To all...thanks for listening...and I hope today was a better day than yesterday.