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Author Topic: More confused after Dr appt  (Read 3740 times)

worrywart

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More confused after Dr appt
« on: August 04, 2011, 04:32:34 pm »
We finally had the appt with the nuerosurgeon, and I'm more confused than before. She said he has a small spot on his 7th nerve, not sure what it is, not causing any of his symptoms other than his face being partly paralyzed, and that they aren't going to do anything about it other than keep an eye on it. We did look at the MRI and it said it was 1cm, which I guess is fairly small. She didn't give us any information at all, and I am uncomfortable with her saying it isn't causing the dizziness, hearing trouble, headaches, problem focusing that eye, and problems talking and remembering. That is why he had the MRI in the first place and if this isn't the issue I think they could have told us that a month ago so we could figure out what was causing it. I don't get it. I'm not even sure if we should be happy or more worried at this point.
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tenai98

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Re: More confused after Dr appt
« Reply #1 on: August 04, 2011, 04:50:57 pm »
Go for a second opinion...and a thrid if necessary
JO
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14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

JAndrews

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Re: More confused after Dr appt
« Reply #2 on: August 04, 2011, 05:18:24 pm »
see another doctor. You can send his MRI to House Ear and they will look at it for free and call you
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2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

worrywart

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Re: More confused after Dr appt
« Reply #3 on: August 05, 2011, 06:25:09 am »
 I think you're right, we do need a second opinion. Where is House Ear? We are in NE PA and it would be great if we could find something sort of close.
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tenai98

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Re: More confused after Dr appt
« Reply #4 on: August 05, 2011, 08:12:39 am »
House Ear is in LA...but you can still get a consult with them and then take it from there...In my experience, one has to be their own advocate....when I noticed my hearing loss, and some balance issues, my doc sent me to an ENT closeby, He told me my hearing loss was due to old age..( 47 at the time). Told me to get hearing aids....I knew something wasnt right, so I went for a second opinion and voila, mr booger was discovered...The second ENT wanted me to W&W, but after some research, I told him I wanted it out and he said no problem.
JO
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14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Dee-dee

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Re: More confused after Dr appt
« Reply #5 on: August 05, 2011, 10:29:30 am »
Go see any of these doctors:  Sisti, Golfinos, Post, or Selesnik  in New York right away.   get checked for Lyme disease also.  Knew someone whose symptoms mimicked all of these who had Lyme disease.

Good luck
« Last Edit: January 10, 2012, 11:51:54 am by Dee-dee »
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2.3 cm AN.   Hearing loss and other symptoms. Gamma knife 2011.

JAndrews

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Re: More confused after Dr appt
« Reply #6 on: August 05, 2011, 05:23:25 pm »
Dr. Thomas Roland at NYU is also highly recommended
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2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

leapyrtwins

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Re: More confused after Dr appt
« Reply #7 on: August 05, 2011, 09:08:41 pm »
As others have mentioned, lots of great docs in/near NYC.

Roland & Golfinos, Sisti, Selesnick, all come highly recommended.

Good luck!

Jan
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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

worrywart

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Re: More confused after Dr appt
« Reply #8 on: August 09, 2011, 06:44:39 am »
 Well, I got copies of the mri and reports and he has an appt with the ENT dr next week. The first MRI says suspicious for vestibular schwannoma, and multiple tiny t2 signal foci which doesn't seem to mean much. The second (with contrast) says suspicious for 7th nerve schwannoma. I sent a copy down to MD and I figure we will wait and see what happens after his ENT appt.
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