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Author Topic: I have located another hypoglossal schwannoma patient  (Read 2515 times)

jewel01

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I have located another hypoglossal schwannoma patient
« on: October 21, 2005, 03:59:41 pm »
Guess what I have finally located another person who has the same thing that I do.  This was like finding a needle in a haystack.
I was just putting hypoglossal schwannoma in the computer in various ways and this site popped up with a gentlemans story of his schwannoma. WOW !!!I sent an email to the site address hoping that he was still active with this site, as it was also a business site for this guy.  He did email me back. He was diagnosed 6 years ago and is doing the wait and watch.  He said I am the only one who he has ever been able to located with this same tumor since his diagnosis 6 years ago.  HUMMMM Rare indeed.  I makes me feel better to have someone to compare notes with.  Although he is not experiencing alot of the same symptoms that I have, which makes me think that alot of my health problems are more from my ectactic vertebral artery which is also on the left side. We will keep in contact with each other and watch each others progress.  Actually he said to me " Hum some of your symptoms makes me relook at what I have been going through and that I should be retalking to my doctor about these".   I will keep you all updated.
If anyone knows of anyone else with this type of schwannoma please let us know.

Choosing Peace,
Julie W
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asodestrom

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Re: I have located another hypoglossal schwannoma patient
« Reply #1 on: October 23, 2006, 11:13:49 pm »
I see it has been a year since this post, but I just had an MRI done for asymetrical hearing loss on the left side, and the report describes a right hypoglossal schwanoma. ???  Go figure.

Are you still checking in?
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Tumbleweed

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Re: I have located another hypoglossal schwannoma patient
« Reply #2 on: May 23, 2009, 02:04:51 am »
Dunno if you two are still participating in this forum, but I was also diagnosed with a hypoglossal tumor 5 months ago (December, 2008). They are extremely rare -- about 100 times more rare than an AN or vestibular schwannoma. I've already had my AN treated with CK, but I'm in watch-and-wait mode with the hypoglossal tumor.

What symptoms did you both have? I'm currently not having any symptoms related to my hypoglossal tumor.

Best wishes,
Tumbleweed
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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

leapyrtwins

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Re: I have located another hypoglossal schwannoma patient
« Reply #3 on: May 23, 2009, 08:16:26 am »
Tumbleweed -

neither of these users have posted since 2006, so your best bet may be to PM them.

Just a suggestion  :)

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

Tumbleweed

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Re: I have located another hypoglossal schwannoma patient
« Reply #4 on: May 26, 2009, 11:26:14 pm »
Thanks for the suggestion, Jan.  :)

Best wishes,
TW
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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

sgerrard

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Re: I have located another hypoglossal schwannoma patient
« Reply #5 on: May 27, 2009, 12:27:24 am »
These HS patients are a lively bunch, don't you think?  ;D

Hi Tumbleweed. Hope you can stay calm while you wait for your next MRI result.

Steve
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8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.
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