Author Topic: Upset need opinions help!!  (Read 5378 times)

Lynnhamlin

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Upset need opinions help!!
« on: January 20, 2012, 08:39:04 pm »
Hi everyone!
Diagnosed with a 7mm schwannoma about 2 weeks ago. Long story how I was diagnosed - but that is for another time. Anyhow, I took my MRI to NYC (I live 30 miles away) and saw Dr Selesnick. He suggested I should be in the watch and wait group after reviewing MRi. Got hearing test and no loss, no symptoms. They made an appt for me to have another MRI last weekend in their place as they look at different views of the tumor. And made an appt for a 6 month follow up MRI. All good so far.
Yesterday I get a call from his nurse saying that the Dr would like to see me BEFORE the 6 months to go over my MRI. And "are you free at 4:00 on Tuesday"!
So my question is - how did I go from having a little ol boring 7mm schwanomma to suddenly being called back to the doctor (rather urgently I think) to discuss the MRI (which was taken 2 weeks after the first MRI? What could be wrong?
Help - I am a bit frantic!

mindyandy

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Re: Upset need opinions help!!
« Reply #1 on: January 20, 2012, 08:53:03 pm »
I'm not understanding why he would call you back and want to discuss it again? Do you have copies of your MRI? You can send it to other trusted neuro drs such as Dr.'s at House in LA for a second opinion. Does not cost you anything.
Keep us posted on what your dr says. Please stay calm....I know that is easier said than done.

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Lynnhamlin

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Re: Upset need opinions help!!
« Reply #2 on: January 20, 2012, 09:11:25 pm »
Mindy - he is callin me back to discuss the results of the second MRI (the MRI done in his hospital and arguably a better MRI). I was just wondering if anyone else has had this happen. No need for a scond opinion yet until I know what the opinion is! Just cannot understand what could have changed.
Are these tumors EVER malignant? ::)

Tumbleweed

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Re: Upset need opinions help!!
« Reply #3 on: January 21, 2012, 01:06:50 am »
Lynn, it's impossible to say why your doctor wants to talk with you so suddenly. But I can tell you that it is almost certainly not because your tumor is malignant. A malignant tumor looks very different from a benign AN, and the first MRI would've alerted him already to the possibility of malignancy if that were the case.

ANs and other benign tumors have relatively well-defined and smoothly contoured borders and look self-contained. Malignant tumors, on the other hand, look kinda like spaghetti, with thin projections radiating outwards into surrounding tissue. So, I don't think you need to worry about malignancy. That's probably already been ruled out.

It's certainly nerve-wracking to get this kind of call and having to wait to find out why they want to talk with you again so soon. Please let us know what you find out. We're hoping the best for you.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

frenchjoey

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Re: Upset need opinions help!!
« Reply #4 on: January 21, 2012, 05:12:37 am »
There's no way you can find out the reason why he's calling you back before Tuesday. I totally understand how you feel and I've often been really furious with some doctors who don't realize how we hang to every single word they say or how we understandably misinterpret the slightest shift in their attitude.
I don't see how a 7mm AN and no symptom could all of a sudden have turned into something totally different. You will most probably be relieved after you've seen him. But I agree that those few days are going to seem very long indeed. The only thing you can do (I know it's much easier said than done) is to fill your time as much as you can in the meantime with things you normally love doing just to stop you thinking. Just keep yourself as busy as possible, frantically busy. And as I once told myself while having to wait for a diagnosis (nothing to do with the AN) and feeling really out of my mind with worry: Until they have actually said something is wrong, NOTHING IS WRONG!!
I'm sorry if this message sounds a bit childish but I just wanted to tell you that a lot of us know exactly what you are going through and we are looking from hearing from you.

Warm_in_MN

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Re: Upset need opinions help!!
« Reply #5 on: January 24, 2012, 04:41:58 pm »
Call back and ask him or his nurse to be a little bit more specific.  Plus, you'd like to be better prepared for your meeting knowing more specifically what he wants to discuss.  A 7mm is not very large at all.  It's hard to imagine that things would be of enormous concern if they didn't have you come in asap.  Plus, these tumors grow very slow.  My ENT told me about my tumor on the phone at 5:00pm on a Friday afternoon.  He was using words I didn't understand.  I was trying to take notes.  Then of course what did I do, go on the internet and scare the he__ out of myself and runimate all weekend.  Dr's demeanors may not always be the best. 

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

AN 2.2cm x 1.6cm right side.  Diagnosed 9/09.  CyberKnife treatment at St. Joseph's Hospital St. Paul MN 11/09.  Single Sided Deaf (SSD) Living with Trigeminal Neuralgia since 06/13

nftwoed

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Re: Upset need opinions help!!
« Reply #6 on: January 25, 2012, 02:13:16 pm »
Lynn;
  No two MRIs are exactlly the same.
  Re, a need to visit with you after the 2nd MRI, you report no hearing impairment.
  Once the auditory nerve fibers have schwann cells, at that point a person could ask, "What is the logical outcome of 'watch and wait'? In most people, it's continued hearing loss.
  Seems maybe Dr. wishes to treat before you suffer hearing loss?

frenchjoey

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Re: Upset need opinions help!!
« Reply #7 on: January 26, 2012, 03:35:52 am »
  Seems maybe Dr. wishes to treat before you suffer hearing loss?

I totally agree. I hadn't thought of that possibility but it's highly likely that's what it's all about.

Lynnhamlin

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Re: Upset need opinions help!!
« Reply #8 on: January 27, 2012, 12:12:56 pm »
THank you all for your good advice.  I saw the Dr and he just wanted to share the new MRI with me.  I wish I had known that!  Anyhow his MRI which apparently was much better than the one at my local hospital showed the tumor to still be small, but now 10mm from 7mm.  He does not think it grew, just that it was hard to measure on the old one.
I do have very slight hearing loss in the upper ranges.  Nothing that I notice in day to day activity.  He still advised me to "watch and wait".  My next appt is in 6 months.

lrobie

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Re: Upset need opinions help!!
« Reply #9 on: January 27, 2012, 01:56:48 pm »
I've been waiting for you to respond and am glad that it was nothing more than that. 

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

chloes mema

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Re: Upset need opinions help!!
« Reply #10 on: January 27, 2012, 02:13:05 pm »
Good to hear that it was a consult.  Sorry you had to go through so much before your found out.  I, too, am in the same boat with was it there in 2008 and tiny or did the MRI (also done at a hospital) not pick it up or is it a fast grower.  On the six month path.  Good luck and keep reading the posts.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

frenchjoey

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Re: Upset need opinions help!!
« Reply #11 on: January 29, 2012, 03:35:26 am »
I knew it! I knew it! Hurray! :D :D