Author Topic: Possible links to Virus  (Read 23146 times)

Soundy

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Re: Possible links to Virus
« Reply #15 on: June 04, 2011, 03:22:21 pm »
Some of us are just over achievers and get a multitude of problems ...  ;D

I have had shingle out breaks since 2000 ... had Bells Palsy August 2004 , which was thought at first when I went in with face drooping to be a light stroke ...no stroke but they found the AN on opposite side of head than was affected by the BP ... the week I got AN diagnosis I got diagnosis of SLE (Lupus) and fibromyalgia  after years of testing for a blue million things including MS ...hormones went haywire in 2006 ...in October 2006 MRI showed little AN growth and told that they were going to put me on yearly MRI monitoring ... had hysterectomy in March 2007 due to losing more blood than I could replace ...

in April I had a sudden drop in hearing and head just felt funny ...called neuro and he said come in for a new MRI ... my tiny 3.something mm AN grew in 6 months to the 3.2cm x 2.75cm x 3.3cm that they removed after watching it do nothing for 2 1/2 years... and he said I had 3 months to make a decision on what to to as far as evicting the little booger

I have decided that my AN just happened ... I think the hormone explosion I had  may have fed it and aided it in the super accelerated growth it had from October 06 -April 07 ...
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

FLsunshine

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Re: Possible links to Virus
« Reply #16 on: June 06, 2011, 07:58:39 pm »
While I do not believe (and I'm not a doctor) that the Herpes virus causes ANs, I find it interesting this thread given the many similarities of ANers having the virus.  Last Fall when I was having a whole host of new neurological and balance problems (this four years into w&w status), I was startled to learn that I tested very high for vestibular neuritis.  Seems that the Herpes virus was 6x the normal range in my Non-AN ear.  Go figure.  Then to make matters worse my evoked potentials test results had significant delayed response in the Non-AN ear as well.  My ENT was flustered and when I asked has he seen this before... he replied "only once in his career <in treating ANs>.  So while the diagnoses helped explain much of my issues, it certainly was peculiar and my Neuro doc is now monitoring me for possible MS based on these tests and the relapses that have happened even while under meds to treat the vestibular neuritis.  Research does shows that Herpes can be a trigger for MS.  Anyway, that's my story and maybe it helps someone else in asking questions of their docs.

Every story is different.  Every AN is different.  But this is what I like about this forum... that we can all share our experiences with each other for support and learning.

Peace,
Suzanne
3mm AN diagnosed in 2006
w&w with escalating symptoms
slow growth - at 4mm in 2010

LisaM

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Re: Possible links to Virus
« Reply #17 on: June 06, 2011, 11:25:49 pm »
Hmmmm.... Interesting thread.  I find it very interesting how many women find out they have an AN, usually a pretty big one, in their third trimester of pregnancy.  Hormones seem to have some role in ANs but my Drs. say there is no conclusive connection between hormones and ANs and that they don't know what causes them.

Did a quick google search on ANs & herpes and found this link:

http://www.medical-hypotheses.com/article/S0306-9877(10)00014-9/abstract

Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

ppearl214

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Re: Possible links to Virus
« Reply #18 on: June 07, 2011, 03:43:26 am »
Hmmmm.... Interesting thread.  I find it very interesting how many women find out they have an AN, usually a pretty big one, in their third trimester of pregnancy.  Hormones seem to have some role in ANs but my Drs. say there is no conclusive connection between hormones and ANs and that they don't know what causes them.

Did a quick google search on ANs & herpes and found this link:

http://www.medical-hypotheses.com/article/S0306-9877(10)00014-9/abstract



Hi Lisa and all,

Although no confirmed connection has been made between AN's and Estrogen/Progesterone, there are 2 interesting abstracts that have been done... NIH and AMA, both noted below.  Some of you may recognize one of the authors of the AMA abstract as our own AN Medical Advisory Board (MAB) member, Dr Wiet:

http://www.ncbi.nlm.nih.gov/pubmed/2122366

Estrogen and progesterone binding by acoustic neuroma tissue.
Monsell EM, Wiet RJ.
Source
Department of Otolaryngology, Henry Ford Hospital, Detroit, MI 48202.
Abstract
Tissue samples from 37 acoustic neuromas were assayed for estrogen and progesterone hormone receptor binding by radioimmunoassay using a dextran-coated charcoal method and Scatchard plot analysis. Twenty-one of the samples were from men, and 16 of the samples were from women. Seven of 37 samples (19%) were positive for estrogen receptor and six of 36 samples (17%) were positive for progesterone receptor. Three of 37 samples (8%) were positive for both receptors. There was no correlation of estrogen receptor positivity with the sex of the patient. These results indicate that estrogen or progesterone receptor binding activity or both are present in a small subset of acoustic tumors. Evidence is lacking, however, that binding of estrogen to the receptor results in growth changes in the tumor. The empirical use of antiestrogen treatment in acoustic neuroma does not appear to be justified at the present time.
PMID:
2122366
[PubMed - indexed for MEDLINE]

http://archotol.ama-assn.org/cgi/content/abstract/116/2/202

Estrogen and Progesterone Receptors in Acoustic Neuromas
Leif Klinken, MD, PhD; Jens Thomsen, MD, PhD; Birgitte Bruun Rasmussen, MD, PhD; Richard J. Wiet, MD; Mirko Tos, MD, PhD
Arch Otolaryngol Head Neck Surg. 1990;116(2):202-204.

Abstract
• Acoustic neuromas are more frequent, larger, and more vascular in women, and their growth rate increases during pregnancy. Estrogen receptors were claimed to be demonstrated in these neoplasms for the first time in 1981. Since then, numerous diverging studies, using various biochemical and histochemical methods, have been published on the contents of estrogen and progesterone receptors in acoustic neuromas. We determined the content of estrogen and progesterone receptors by means of an immunohistochemical method, using monoclonal antibodies, which has proved to be reliable, reasonably sensitive, and clinically relevant in other tissues, especially in breast carcinomas. No estrogen or progesterone receptors could be found in 18 consecutive acoustic neuromas from 7 men and 11 women, ranging in age from 26 to 73 years. The results do not support preoperative hormone treatment of acoustic neuromas.
(Arch Otolaryngol Head Neck Surg. 1990;116:202-204)

Author Affiliations
From the Institute of Neuropathology (Dr Klinken), the Ear, Nose, and Throat Department, Gentofte University Hospital (Drs Thomsen and Tos), and the Institute of Pathology, Rigshospitalet (Dr Rasmussen), University of Copenhagen (Denmark); and the Department of Otolaryngology-Head Neck Surgery (Otology/Neurotology), Northwestern University, Chicago, Ill (Dr Wiet).

"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

LisaM

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Re: Possible links to Virus
« Reply #19 on: June 07, 2011, 10:25:51 pm »
Thanks for posting these abstracts Phyl.  I just knew there was more to hormones and ANs!  Hormones and Herpes... wonder what it all means??? 
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Cindyswart

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Re: Possible links to Virus
« Reply #20 on: June 08, 2011, 01:00:31 pm »
 I know what you mean Lisa, and we are told that there should not be headache pain from AN's, but having and AN means that the nerves are aggravated, and thus they may swell- bam- headache! Not to mention that when the virus is spiking that can cause swelling also and -bam- headache. I still think they have to be related. We are treating the viruses with anti-viral meds and now treating the swelling with steroids, and life is manageable.
Diagnosed 4/19/11 An 1.5x1.9x2.0
Surgery 8/23/11, Dr Fukushima.
Total tumor removed. SSD.
Second surgery 11/11/11 for abscess

I'm gona work like I don't need the money
I'm gona laugh like I'm not afraid to cry
I'm gona dance like nobody's watchin'
I'm gona love while I still have the time!

staypoz

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Re: Possible links to Virus
« Reply #21 on: June 08, 2011, 02:10:40 pm »
This thread is very interesting.  I have had problems with severe outbreaks of herpes simplex since I was in my teens and participated in an NIH clinical drug trial about 20 years ago for the anti-viral that is commonly prescribed for cold sores now.  I have been on the drug since the trial and only get minor breakthroughs now.  At their worst, my blisters covered my face. 

I'm no scientist but I wonder if it's just coincidence.  I was diagnosed with a cancerous tumor 8 months after I had my AN surgery and speculated then if there was a connection between the two tumors, but there wasn't.  Sometimes life just happens. 

staypoz

Cindyswart

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Re: Possible links to Virus
« Reply #22 on: June 09, 2011, 08:53:04 am »
And strangely for me, my blood tests show elevated levels for Simplex I and I have never had a fever blister in my life....
Diagnosed 4/19/11 An 1.5x1.9x2.0
Surgery 8/23/11, Dr Fukushima.
Total tumor removed. SSD.
Second surgery 11/11/11 for abscess

I'm gona work like I don't need the money
I'm gona laugh like I'm not afraid to cry
I'm gona dance like nobody's watchin'
I'm gona love while I still have the time!

Lupy

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Re: Possible links to Virus
« Reply #23 on: June 11, 2011, 04:00:01 am »
Very interesting. I have suffered from severe outbreaks of herpes since my early teens. I get it on my eyes and nose. I was at risk of going blind for a while. I actually had to have my surgery delayed because I got one on my eye the week of the surgery. I get it on the same side as my AN too. And now you mention it, sometimes the nerve pain I get with my migraines is very similar to thaht which I get with my herpes outbreaks... Thanks for all the articles, definitely food for thought.
“Life is a mystery to be lived, not a problem to be solved” S. Kierkegaard

2.5cm Tumour removed 1/7/2009
Retrosigmoid @ The Royal Melbourne
Debilitating headaches/migraines from 2 weeks post surgery till current.

Mei Mei

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Re: Possible links to Virus
« Reply #24 on: June 11, 2011, 07:05:19 am »
I also have been getting them since my teens.   I got two in the month before my surgery and hadn't had any for over a year.   Got two in two weeks during my recent trip to
Istanbul.

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Doc

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Re: Possible links to Virus
« Reply #25 on: June 11, 2011, 08:48:43 am »
All this talk of Herpes gave me the creeps so I did some more reading to be sure I understood the broader topic; didn’t want to rush to judgement  ::) : http://en.wikipedia.org/wiki/Herpes_simplex
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

Melissa778

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Re: Possible links to Virus
« Reply #26 on: October 22, 2012, 02:16:01 pm »
I just stumbled upon this post......I am 34 years young, my children are 7 and 10.....I was diagnosed when my youngest was 2 1/2 and had translab, followed by some GK.  Now 4 years later I have regrowth.....I have always wondered if my AN was hormone related.  I also have a strain of herpes....the cold sore kind ;) and have had shingles several times......however, that's been on my left side and my AN is on the right.....it's all very interesting and I wish I could find a doc interested enough to do some research.
1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

Jill Marie

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Re: Possible links to Virus
« Reply #27 on: October 22, 2012, 08:44:20 pm »
As so many have said, interesting posts!  I haven't had any cold sores but did have chicken pox when I was only 6 months old.  My Facial Nerve Neuroma must of started not long after that as I failed my first hearing test in 1st grade.  Had tumor removed when I was 35.  Have no idea if there's a connection.  Have other immune issues too, Vitaligo and was allergic to the cold until about the age of 7.   Looks like there's a lot of things for the doctors to check into and learn about.  Good luck to them and all of us.  Jill
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

PaulW

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Re: Possible links to Virus
« Reply #28 on: October 23, 2012, 10:16:45 am »
Most people have Epstein Barr virus, you normally get it as a child.
Same with Herpes simplex 1, cold sores and Shingles... which is chicken pox

Interesting link showing AN's probably are not linked to these viruses
http://www.ncbi.nlm.nih.gov/pubmed/16798670
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

sandyinwisconsin

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Re: Possible links to Virus
« Reply #29 on: November 22, 2013, 04:30:18 pm »
Are warts considered Herpes?  I had an outbreak of warts on my face, hands, and feet 20 years ago.

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.