Author Topic: Friend needs help!!!!!  (Read 2685 times)

lp4392

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Friend needs help!!!!!
« on: April 12, 2010, 04:53:41 pm »
      Hello everyone!  I am on here hoping to get some help for a friend! I have been doing research for her since she started having issues with her health! We are coworkers who are very close she is a Paramedic and I am an EMT.  On a daily basis we pick up patients on the amblulance which at times these patients are obese and could weigh up to over 300ilbs.! We are both very strong women and we love our job!  But about a month ago my friend started having which at the time we thought was vertigo. She had vertigo about 4 yrs. ago so she knew what it was and we figured she would be back to work in a week! Well this is not the case!  She went to the hospital due to tinnitus in her left ear and  numbness, tingling, in her left cheek, chin, and half of her tongue all on left side of face (no facial drooping). The vertigo at this time was not as bad but she has disequilibrium.  She also has a metal taste in her mouth which she says tastes like she has a penny in her mouth. She has stated that she feels like her hearing in the left ear has a fullness to it and is sensitive to sound and when using the phone she cannot hear well in that ear.  She has not been weak or fatigued but of course wants to feel better! Her limbs are not tingling or have any numbeness!  Due to all these symptoms well of course you can see how I came to the ANA website!  Here is the kicker ready......... She is being diagnosed with MS!!!!!!!!!!!!  She had a CAT scan and MRI done and they are saying that it MAYBE MS!!!!!!  Please i feel she is being misdiagnosed and I need to know if anyone out there has had a MRI that did not at first show an AN!!!!!!!  We strongly feel this is what it is but due to the MRI not showing an AN no one wants to listen including her ENT!!!!  He gave her a hearing test and said she had some sensitivity in the left ear but no hearing loss! We live in a rural area in NC and lets just say the hospital is not exactly on the forefront of technology!!  Her MRI was done with and without contrast!!  The docotors are ignoring her symptoms and just going off this MRI!! Please has anyone had this ever happened to them????????  Thank you for your time!!! 
                                                                              HELP PLEASE!!  Lisa

Kaybo

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Re: Friend needs help!!!!!
« Reply #1 on: April 12, 2010, 05:00:36 pm »
Hi Lisa and WELCOME!  So sorry this is happening to your friend but what a good one you are to try to help her like this!  I was going to make sure that they did the test WITH contrast but sounds like they did that.  USUALLY AN's glow with the MRI is enhanced!  I know I am not much help, but I know that someone else will come along with some ideas for you!
Hang in there!

K   ;D
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Desilu

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Re: Friend needs help!!!!!
« Reply #2 on: April 12, 2010, 07:14:25 pm »
Hi Lisa and Friend,

When I had my MRI with contrast the results showed small white spots on my brain, in addition to my Acoustic Neuroma. They stated in the report that the spots might be MS, maybe your friend has these white spots and they are just going with that diagnosis. It doesn't hurt to get a second or third opinion. Don't know if I was of any help? But I'm sure someone on this website will give you some helpful advice, just hang in there and keep us posted. I wish you and your friend the best! You must be a super friend and I think that is awesome. Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

leapyrtwins

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Re: Friend needs help!!!!!
« Reply #3 on: April 12, 2010, 08:38:54 pm »
It's very common for acoustic neuromas to be misdiagnosed, but if your friend's MRI was done with gadolinium contrast, chances are good an acoustic neuroma would show up.

As Kaybo said, it would "glow".

That said, it wouldn't hurt to get a second opinion.  She should have her films looked at by a doctor who treats ANs, like a neurotologist.

Just my two cents,

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: Friend needs help!!!!!
« Reply #4 on: April 12, 2010, 08:45:44 pm »
Hi Lisa and friend,

I'm just wondering how the quality of the MRI was since you state that your hospital is not at the forefront of technology.  Although my AN did show up in my first MRI, my doc said the quality of the MRI was very poor and ordered a high resolution  MRI, with and without contrast.   Perhaps your friend should get someone to prescribe another MRI for her.  As others have said, when in doubt, get other opinions.

Good luck,
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
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Doing great!

Brendalu

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Re: Friend needs help!!!!!
« Reply #5 on: April 13, 2010, 09:42:03 am »
Hi Lisa,

I had my AN removed almost five years ago.  Shortly afterward I was diagnosed with MS.  The only symptom I had for the AN was fullness in my ear (I had perfect hearing in both ears) and really terrible balance.  The MS was diagnosed through a PET scan.  Does the MRI show lesions?  I would send the MRI's to House or at least get a second or third opinion.  Good luck to both of you.
Brenda
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AN surgery 7/28/05
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Lizard

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Re: Friend needs help!!!!!
« Reply #6 on: April 19, 2010, 08:23:09 am »
Lisa and Friend,
I know NC has many great facilities, perhaps she should seek a second opinion at Duke or UNC.  They have great reputations and a day's drive is worth sorting all this out for your friend.  I also had "could be MS" in my MRI results, but before I started to get upset my Dr assured me that this can be from any sort of infection or inflammation.  A second opinion is where I would go from here.


Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

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HeadCase2

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Re: Friend needs help!!!!!
« Reply #7 on: April 19, 2010, 08:42:42 am »
Hello Lisa,
  I agree with the other folks that the MRI (with and without contrast) should be looked at by another doctor familiar with AN.    I live in NC too.  And I would suggest Dr. Debara Tucci (neurotologist, http://www.dukehealth.org/physicians/debara_l_tucci ), or Dr. John Sampson (neurosurgeon).  Both of these surgeons commonly operate as part of a Skull Base Team treating AN, at Duke University Medical Center.  As others have said, it is fairly common to have AN misdiagnosed over a period of years. 

  This link will help get you started, http://www.cancer.duke.edu/btc/modules/patientinfo13/index.php?id=14

Regards,
  Rob
« Last Edit: April 19, 2010, 08:44:13 am by HeadCase2 »
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

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