Author Topic: Possible links to Virus  (Read 23149 times)

Cindyswart

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Possible links to Virus
« on: May 27, 2011, 07:32:52 am »
I was just wondering if anyone was told that they also have either Herpes Simplex I or Epstein Barr Virus along with AN. I had Bell's Palsey Jan 10 and 6 weeks later this trek began. It took until April 11 to actually get my diagnoses of AN, I was misdiagnosed with Trigeminal Neuralgia, correctly diagnosed with herpes Simplex I, although I have never has a fever blister, and Epstein Barr. I just wonder if there is a link to the triggering of the growth of my AN to these Viruses.
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!

nftwoed

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Re: Possible links to Virus
« Reply #1 on: May 27, 2011, 08:09:49 am »
Cindy;

  Some researchers have hypothesized a relationship between AN an the herpes simplex virus.
  Some studies seem to indicate the relationship.

Kaybo

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Re: Possible links to Virus
« Reply #2 on: May 27, 2011, 10:03:43 am »
My mom had a SEVERE case of BP/shingles in 2002.  She did have shingles "blisters" on her chin and in her ear...they were more like spots/scratches though.  She had crashed in a skiing accident (& broke her wrist - she was 63 - still skiing today at 72!) and I thought at first that it was a scratch on her chin from the ice.  It affected her balance also and to this day she still has facial weakness and balance issues (I told her that she just wanted to be like me!!).  She had an MRI last year to rule out an AN, but it came out clear.

K   ;D
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!

Doc

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Re: Possible links to Virus
« Reply #3 on: May 27, 2011, 04:28:33 pm »
...so I'm thinking its just an odd coincidence your AN was diagnosed six weeks later. Our AN's are slow growers...mine actually presented unnoticed to Military Doctors back in the early 80's via sudden and significant hearing loss...no MRI technology back in the day and they didn't perform a CT (available than?). It wasn't until June 09 it was found and addressed. Others have commented on "studies" re your question. I haven't done any research on the subject...item next on my list of things to not do in a timely manner.

Take Care!
  ;)
Doc
« Last Edit: May 27, 2011, 07:33:22 pm by DoctorB »
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.

Cindyswart

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Re: Possible links to Virus
« Reply #4 on: May 27, 2011, 07:13:56 pm »
Doc, let me clarify. The start Of this was Jan 2010. Bells palsy. Suffered through till Oct 2010 when hearing deficits were noticed.
Neurologist discovered HS 1 and Herpes 5-Epstein Barr. In April 2011
Sent me for first MRI. AN discovered.
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!

Denise S

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Re: Possible links to Virus
« Reply #5 on: May 27, 2011, 07:27:51 pm »
I don't know if or how they may be linked, BUT I do know that supposedly the virus (which can be more known as shingles or varicella/chicken pox) does lay somewhere within the nerves area that are affected by ANs.   I remember hearing more about right after I had my surgery and some people are automatically given the virus medication when having surgery to remove their AN.  That is to help so the virus doesn't 'peak' and cause the paralysis.   I ended up having delayed facial paralysis shortly after my AN surgery.   I was concerned wondering if it was the virus, but my 2 neuro doctors also knew I had had vaccines for the virus a few years back because I was tested and knew I had never had chicken pox as a kid.   One of my doctors explained the stuff to me a bit and the concern of it.    I don't remember a lot because they were sure it wasn't that, but it was the swelling I had post op that caused my paralysis.     

Also I remember searching a LOT about the herpes virus and paraylysis, etc.  seemed to come up with it many times in link with post AN surgery.   Seems like I had also read it in one of the brochures I got from the ANA.

I just had to throw this out there because it all does sound interesting to me.  Sorry I can't remember details better on it, but it can make sense to me.

My wonder would be.....could the AN trigger the virus to flair up??    (FYI... all my comments have to do with the herpes virus, not the epstein barr)

Denise (MI)
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Doc

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Re: Possible links to Virus
« Reply #6 on: May 27, 2011, 07:42:47 pm »
...ok...got it...still seems coincidental to me...my AN, as reported by the experts, must have been growing in my head for a good 30+ years based on its size. Never had any of the viruses you mention. Mine was your "run of the mill" Vestibular Neuroma (Schwannoma); an outgrowth from the Vestibulocochlear nerve itself - starts out as excess tissue on the nerve and mutates  >:D , or so I've been told.

I'm also thinking, after some consideration, AN's are probably far more common than we think. So many of them are likely misdiagnosed like mine originally was and they go untreated. Slow Growers for the most part, the majority of people are able to live largely unaffected by them and never seek understanding of what "might" be the reason why for example, they walk with a wider gait than they used to.

I've read some recent posts by young people who's AN was discovered at 21 and younger which in a way, kind of debunks the idea AN's are slow growers. I'd imagine they were born with, or developed their AN shortly after birth. Although AN's are very rare in the Pediatric population - http://www.aans.org/Media/Article.aspx?ArticleId=47079 Anyway... :P !

Thanks the clarification!

Take Care!
  ;)
Doc
« Last Edit: May 27, 2011, 08:24:24 pm by DoctorB »
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.

Mei Mei

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Re: Possible links to Virus
« Reply #7 on: May 28, 2011, 08:43:23 am »
I don't know what this has to do with AN development except maybe there is an immune problem with us, but I've been suffering from Herpes on my lips and area below my nose since I was in my teens and now I am 62.   I just had surgery on Thursday and woke up with another one on my upper lip.   I had one two weeks ago on my lower lip.   I've been under alot of stress recovering from the AN surgery last year so there might be a correlation.

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 #8 on: May 28, 2011, 09:32:46 am »
Mei Mei - You have a point there...take stress and hives, known correlation. Now take me for example, stomach aches and my wife...she gets a stomach ache and I fart...correlation!  ;D I knew it, somebody in the world just laughed and I feel better for it!

Take Care!
  ;)
Doc
« Last Edit: May 28, 2011, 09:34:18 am by DoctorB »
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.

Cindyswart

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Re: Possible links to Virus
« Reply #9 on: May 28, 2011, 10:40:24 am »
Just seems a bit ironic to me that according to my
Neurologist of the 9 patients that he has with an AN, all
I'd us have also been diagnosed with Herpes 1.
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!

Mei Mei

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Herpes
« Reply #10 on: May 28, 2011, 10:52:30 am »
Doc  You're right buddy.   I'm sitting here laughing.   BUT I was told that farting has to do with menopausal changes.   I used to be annoyed with my poor mother for doing that and now it's happening to me.  What goes around comes around.   I hope you're not going through menopause... ???

Cindy -  It must have something to do with our immune system.    My friend's 37 year old daughter has MS and her 29 year old daughter has to take a light chemotherapy for her gastric problem which is related to immune problems.   She says the chemo gave her Lupus.   The 26 year old son is now developing an immune problem.   They should be going to a genetic person.   I went to one and she confirmed my having Ehlers Danlos Syndrome.   My daughters also have it.   It helps us to know what's going on in the family so you can know what to expect.   My older daughter and grandson also get cold sores.
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

leapyrtwins

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Re: Possible links to Virus
« Reply #11 on: May 28, 2011, 12:52:34 pm »
Have had none of these viruses, so if there's a link it wasn't the cause of my AN.

I still subscribe to the theory that ANs are just something that "happen". 

Some of us are gifted with them; some aren't.

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

Kaybo

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Re: Possible links to Virus
« Reply #12 on: May 28, 2011, 03:29:47 pm »
I agree Jan - I never had any of that either...not even chicken pox!!

;D
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!

MJCKY

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Re: Possible links to Virus
« Reply #13 on: May 31, 2011, 09:15:27 pm »
I had shingles when I was 19; I am 34 now. I had my 1.6 CM AN removed 28 days ago. I was put on a antiviral drug called Famvir prior and after surgery. I was told that all patients are given the drug to theoretically help protect the facial nerve. The fact that I had shingles was never commented on by the doctors although it was in my record. I had no facial issues prior to surgery and so far none after.

Mike

Cindyswart

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Re: Possible links to Virus
« Reply #14 on: June 01, 2011, 09:27:32 am »
I myself have never had shingles. I did not even know that the Simplex I was there. I have never even had a fever blister! I had Bells Palsy Jan 10 and then was diagnosed w/ Epstein Barr in Jan 11. My Neuro wonders if the strength of the two virus' in the bloodstream may have progressed the growth of my AN.
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!