ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Cindyswart on May 27, 2011, 07:32:52 am
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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.
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Cindy;
Some researchers have hypothesized a relationship between AN an the herpes simplex virus.
Some studies seem to indicate the relationship.
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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
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...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
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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.
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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)
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...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 (http://www.aans.org/Media/Article.aspx?ArticleId=47079) Anyway... :P !
Thanks the clarification!
Take Care!
;)
Doc
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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
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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
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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.
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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
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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
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I agree Jan - I never had any of that either...not even chicken pox!!
K ;D
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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
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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.
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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 ...
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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
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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
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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).
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Thanks for posting these abstracts Phyl. I just knew there was more to hormones and ANs! Hormones and Herpes... wonder what it all means???
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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.
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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
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And strangely for me, my blood tests show elevated levels for Simplex I and I have never had a fever blister in my life....
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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.
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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
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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 (http://en.wikipedia.org/wiki/Herpes_simplex)
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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.
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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
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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
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Are warts considered Herpes? I had an outbreak of warts on my face, hands, and feet 20 years ago.
Sandy
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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.
Millions and millions of people have herpes simplex 1 it is extremely highly unlikely that there is any correlation between herpes and acoustic neuroma, millions of people with herpes don't even have herpes symptoms, sometimes extreme stress can trigger herpes simplex 1 symptoms such as a blister on the lip, Acoustic neuroma surgery is extremely stressful and people that have the virus in there system may activate the virus from the extreme stress caused by this very difficult surgery. From all of my years of research on Acoustic neuromas and even talking with the famous neuro surgeon from Mass General Dr. Robert Ojemann I was told by him that the most they know is Acoustic neuromas are caused most likely by a genetic defect where the brain sends to much insulation or tissue around the nerve cable coming off of the brainstem and it builds and builds until it forms a mass. The tissue is not needed on the sheath but it grows there anyway. I would think that most of our post surgery symptoms are a result of unintentional damage due to the removal of the tumor, remember there is little room in your skull for anything other than the brain itself and csf poking and cutting for 12-18 hours in your head is bound to leave us eternally different than before the surgery, the only good thing about it is it is better than the result of leaving a growing tumor pushing against your brainstem that would ultimately result in death. We have to be mindful of how serious this surgery is, especially those of us that had radical surgery with holes core drilled through our skull and belly fat stuffed in there with no other protection for our brain. If you think back the weeks following your surgery it was pretty serious. There needs to be more admittance by surgeons regarding what we are left with, while many neurosurgeons have come forth and tried to help, most ent and neurosurgeons deny many of the post op symptoms being related to the surgery, especially fatigue and cognitive issues.