Author Topic: Question  (Read 5700 times)

LOIS

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Re: Question
« Reply #15 on: July 01, 2008, 10:17:17 pm »
Sue,

Interesting about the gene and how it can cause other tumors.  I've had a glomus tumor removed from my wrist.  Of course I was told up until I had appeared , the doctor had never heard of it appearing there.  He sent me the pathology report and said to hold on to it, for what I dont know.  Its suppose to be written up in some medical jpurnal since it was unheard of.  I've had other tumors removed and have just been told they were benign.  I guess I'm made up of stones and tumors.  I'm 56 so I really don't plan on going anywhere yet, just need to find a good dr.  I trust the judgement of the girl I worked with so I'm praying this one will work out. 

Mickey,

The girl I worked with felt hers was from dental x-rays too.  In fact her dr. mentioned about all the dental x-rays everybody is bombarded with as children.
Diagnosed 07/08   1.2 x 1.1 cm. left AN Retosigmoid surgery 08/08 with Dr. Bartels  @ Tampa General Hospital

Sue

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Re: Question
« Reply #16 on: July 02, 2008, 01:24:00 pm »
The thing about placing a 'modern' cause on something like this, is that people have been getting AN's long before dental X-rays, before Cell phones and such.  I think it's human nature to figure out "why did I get this stupid thing?"  We want to blame something for causing this to us.  We want to point that finger at something.  It's just not that easy, I don't think. It's more like the "Fickle Finger of Fate".   My father had polio as a child.  My mother had TB when she was a young adult.  We can point to a cause because these are caused by a specific pathogen that a person can "catch".  But, having Schwann cells go berserk is a little different.   I kind of favor the Chromosome 22 thing, but maybe more research will reveal something else. 

These are some of the diseases associated with Chromosome 22.  Yikes!  You can find all sorts of information on this by "googling" Chromosome 22.  I didn't realize there were so many strange and rare genetic conditions.  By the flip of the coin I could have had one of these.  Hmmmm. Food for thought, I think.

Amyotrophic lateral sclerosis
Breast cancer
22q11.2 deletion syndrome
22q13 deletion syndrome or Phelan-McDermid syndrome
Li-Fraumeni syndrome
Neurofibromatosis type 2
Rubinstein-Taybi syndrome
Waardenburg syndrome
Autism may be related to mutations of 22q13
Methemoglobinemia Blue people syndrome

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

Debbi

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Re: Question
« Reply #17 on: July 02, 2008, 05:40:16 pm »
Hi Lois-

Just thought I'd say "welcome" to our little club.  Six months ago, I didn't even know such a thing as an acoustic neuroma existed!  Scary stuff, but take your time, find the right doctors and try learn as much as you can about treatment options.  Ask as many questions of all of us as you'd like and definitely ask your doctors many questions. 

On the subject of dental exrays as a possible cause of AN's - I lived in remote parts of Alaska growing up and had almost zero exposure to exrays of any type until I was an adult.  I then developed a ridiculous fear of dentists which kept me away from the dental chairs for more years than I'd be willing to admit.  So, in my case ... definitely NOT exrays!  I have also used a headset for both cell phones and cordless phones for years, so can't blame those either.  I just think the AN, in my case, was "one of those things..." 

Keep us posted, and try not to stress too much.

Debbi

Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

sgerrard

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Re: Question
« Reply #18 on: July 02, 2008, 08:28:27 pm »
My current favorite cause of acoustic neuromas: working in a fish hatchery.  ;D

http://findarticles.com/p/articles/mi_m0BUM/is_1_79/ai_59519791

Steve
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.

Kaybo

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Re: Question
« Reply #19 on: July 02, 2008, 09:12:51 pm »
Steve~
That is a HOOT!!   ;D  Now I know what I was doing all thru my childhood when I was sleep walking...

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: Question
« Reply #20 on: July 02, 2008, 10:09:18 pm »
Oh my God!  Steve, I don't know where you found this article, but it certainly gave me a huge chuckle tonight!  ;D

Thanks for posting it.

And, K, stay away from the hatchery :D LOL

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

Sue

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Re: Question
« Reply #21 on: July 03, 2008, 12:41:32 pm »
Well, there you go!  That explains it all.   :D :D  I knew that Fish Hatchery work would come back to haunt me!! ;D

Sue in Vancouver
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode