Author Topic: a question for all AN patients no matter what stage  (Read 4965 times)

ewhitese

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a question for all AN patients no matter what stage
« on: January 28, 2014, 05:50:37 pm »
I am curious to know how many of my fellow AN patience have prior to or after discovery and or post treatment had a swollen lymph node.  Is this a common occurrence or is my situation unique?

I have had a swollen lymph node below my ear on the tumor side on my neck for several years.  I found it about three years prior to AN discovery around the same time I began to lose my hearing.  A biopsy showed no problems and just fluid.  I have had it through chronic sinusitis, and Gk surgery and still have it 6 months post toastie.

The lymph gland swells and shrinks, it is in tune to my issues, when I increase in balance, hearing, tinnitus etc,  the node swells.  I am not sure what to think of it and all the physicians who have felt it don't seem to be worried about it.  I have been told that it is not an issue until the swelling becomes hard to the touch.

So just curious, I find myself analyzing my aches and pains and wondering what to blame on the tumor and what not.  Funny how you become hyper-vigilant after awhile.

I would like to thank all of you who have contributed to this website for newbies as myself have gained knowledge, peace of mind and emotional support that only you guys would understand.  I am so glad I found you, thanks for taking the time to post your stories, I have found great comfort in knowing I am not alone and an understanding of the things that are happening as a result of the tumor and GK surgery.  Thanks for giving me a description of what is happening to me.

volleymom

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Re: a question for all AN patients no matter what stage
« Reply #1 on: January 29, 2014, 01:14:08 pm »
I had a few big episodes of vertigo and fainting in Jr High and high school. My Jr year in high school, I got very sick for about a week. After that, I had a hard and enlarged lymph node below my ear on my tumor side.  At age 43, I got diagnosed with AN and had surgery. Now I am 4 year post op, I still have the hard lymph node, but I think it is smaller than a few years ago.
9mm X 16mm diagonsed in August 2009.  Retrosigmoid Nov, 2009 at OHSU in Portland, OR.
post-op had some facial nerve weakness, nearly resolved. Mild tinnitus. Left sided deafness.

kcarloy

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Re: a question for all AN patients no matter what stage
« Reply #2 on: February 01, 2014, 11:03:00 pm »
No swollen lymph nodes myself.

cassie

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Re: a question for all AN patients no matter what stage
« Reply #3 on: February 12, 2014, 07:43:02 pm »
Mine is swollen on the tumor side as well. Sometimes more than others and I never thought to ask, since I am always asking so many other questions that seems more important. I will be checking back to see if anyone chimes in.

leapyrtwins

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Re: a question for all AN patients no matter what stage
« Reply #4 on: February 16, 2014, 01:21:10 pm »
Have never had a swollen lymph node.

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

arizonajack

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Re: a question for all AN patients no matter what stage
« Reply #5 on: February 16, 2014, 04:18:21 pm »
Nope. Not me.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

ewhitese

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Re: a question for all AN patients no matter what stage
« Reply #6 on: February 17, 2014, 09:52:29 am »
Thanks all for chiming in,

I see a randomness in the posts on the website that explains why no one has defined a cause for AN so far.  I see some research leans towards genetics.  Hey...next years conference could be billed as a family reunion. 

I do realize that fixating on my tumor is a waist of time and getting on with living is a better investment.  Still, I am one of those people with the need to know, useless trivial information, that's what my wife calls it and I am full of it, useless trivial information that is.

I was just in the Dr office (family practitioner) Thurs. to get an antibiotic for bronchitis, the Dr does keep an eye on my lymph node and considered it to be the same as last exam.  We decided that the good news is it shrinks and swells which means it is doing its job, growing when infection present and shrinking when things clean out.  I don't know if there is a connection to the tumor but it is doing what  it was designed to do.

Ed


Jim Scott

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Re: a question for all AN patients no matter what stage
« Reply #7 on: February 17, 2014, 02:49:03 pm »
Ed ~

As I understand it, ANs are believed to be caused by a genetic mutation that then fails to inhibit the growth of Schwann cells forming the myelin sheath around the 8th cranial nerve.  Researchers do not yet know what 'triggers' the excessive growth of the sheathing, known as an acoustic neuroma.

There are many theories (unproved) ranging from exposure to loud music to excessive cell phone usage.  However, for every theory there are AN patients who , for instance, were never exposed to loud music or never used a cell phone.  In addition, acoustic neuromas were first discovered over a century ago, precluding many of the theories that depend on a modern-day environment  e.g. cell phone usage.

We're all seeking to learn the reason we developed this condition but the fact remains that the medical community simply cannot tell us - yet.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

sandyinwisconsin

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Re: a question for all AN patients no matter what stage
« Reply #8 on: March 12, 2014, 04:55:11 pm »
Ed,

I can relate to you.  I am constantly wondering what caused this tumor.  Is it an allergy to something?  I have some ideas where it came from, but I don't think the cause will ever be proven.

I'll never quit wondering.

Sandy
1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.