Author Topic: AN hereditary component?  (Read 3218 times)

Pembo

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AN hereditary component?
« on: January 17, 2009, 09:41:59 pm »
I had my AN surgery in 2004, I was 35. I started with dizziness in Feb that year that didn't end until surgery. Prior to that I had a bout with dizziness about 3 years earlier that lasted for 5 weeks or so, the doc told me it was labyrinthitis.

My dad who is 72 and in good health woke up a week ago with vertigo so bad he couldn't get out of bed. He is doing better but still dizzy in the morning and not feeling right. He also commented that his ear has popped a few times. Then he tells me that he had some dizziness about a month ago that lasted for a day or so. And I know that he has some hearing loss....the TV is always turned up when he's around.

He went to the general doc and of course he said it's labyrinthitis. I'm concerned that it could be something more. I urged my mom to just call the ENT that diagnosed me. However she thought it was best to just see their doc first. Their doc said if the dizziness didn't go away, he'd send them to the ENT.

My question is this....is there any evidence that AN's can be genetic? I remember reading about NF2 being genetic but what about regular AN? I am a bit more concerned than my parents. My mom is of the school that we believe and trust the doctor and never question. augh My dad's dizziness is improving and the extreme vertigo went away with antivert. 

Any advice or opinions?  I'm the youngest child and I know my mom thinks I'm the drama queen...but hey I did have a brain tumor, I'm entitled. :)
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

Sue

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Re: AN hereditary component?
« Reply #1 on: January 18, 2009, 12:40:56 am »
Hi,

Chances are your dad has something else.  It would indeed be a rare event for two close families members to have an AN, but, then, stranger things have happened.   I guess you could find out how long he would have to be dizzy before they would do an MRI on him.  Hopefully not too long.  I sure hope your dad gets better.  Keep us posted.

Sue in Vancouver USA

PS
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Sue in Vancouver, USA
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Brendalu

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Re: AN hereditary component?
« Reply #2 on: January 18, 2009, 07:46:32 am »
Pembo,

I'm with you on this one.  I think your Dad should see an ENT.  Most AN's are not found by the PCP, although mine was.  Get a second or third opinion.  Dizziness is almost always the sign of something.  The other symptoms he has point to "ear" problems.  Has his diet changed?  Is he getting enough of the right kinds of foods?  All things his doctor should be checking.  It also could be a diabetes thing.  I would insist he see someone else or give more information to the doctor he sees.  Good luck and you are entitled!

Brenda
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jazzfunkanne

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Re: AN hereditary component?
« Reply #3 on: January 18, 2009, 07:52:28 am »
Hi, there is a lady in the uk who had a AN removed a few years ago, then last year  her daughter had one removed, it is very very rare, but i think your dad should get a hearing test and mri to put his mind at rest and yours.
over 4.5cm AN removed dec 06

leapyrtwins

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Re: AN hereditary component?
« Reply #4 on: January 18, 2009, 10:51:42 am »
Pembo -

I'm sure there are instances of more than one family member having an AN - I want to say both Lori (lori67) and her dad had one - but I don't think it's that common.

As others suggested, best to have your dad scheduled for an MRI with contrast to find out what's going on with him.

Let us know what the outcome is,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
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Jim Scott

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Re: AN hereditary component?
« Reply #5 on: January 18, 2009, 11:22:54 am »
Pembo:

Being concerned about your 72-year-old father's health is hardly indicative of Drama Queen propensities.  :)

I won't speculate on what may be causing your father's dizziness/vertigo and other symptoms, but I concur with the other posters who've suggested he be examined by an ENT. 

As to whether your father may have an acoustic neuroma: I believe that is possible - but not probable.  To the best of my knowledge, (I'm not a doctor) heredity does not play a part in the development of acoustic neuromas.  Of course, only an MRI or possibly a CT scan can tell if an acoustic neuroma is the source of your father's problems.  I hope that isn't the case. 

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.

lori67

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Re: AN hereditary component?
« Reply #6 on: January 18, 2009, 04:28:59 pm »
Pembo,

Although the docs keep saying NF2 is hereditary and one sided AN's are not, I find it hard to believe that both my dad and I would have AN's and there's no genetic involvement. I think they just haven't found the link yet.   His was diagnosed by accident when he had an MRI for something else.  He had lost his hearing in that ear years before, but it was chalked up to aging.  When I talked to my doctor about it, he said it's just an unlucky coincidence and since his wasn't discovered until he was in his 70's, there was no reason to think he had NF2.

Well, in a recent coversation with my mom, she happened to mention dad's 2 ANs!  WHAT???  She thought she had told me, but perhaps she forgot.  Ugh!!  Apparently, when he moved into the Veterans Home, they did an MRI just to get his baseline and found another AN.  I don't know any of the details, but I'm in the process of trying to get his medical records so I can see if this is still an unlucky coincidence or if this is something I need to be a bit more vigilant about if I'd like to save my one good ear.

I would say go ahead with the visit to the ENT.  I don't think it's being overly dramatic at all.  Maybe it isn't an AN, but if it is, the earlier you determine that, the more options he'll have for treatment.  If it makes you feel any better, my family thought I was being overly dramatic too when I nearly freaked out that no one had told me about my dad's "other" AN.  Turns out they decided not to tell me because they didn't want me to worry!    Yeah, much better to be blindsided by these things!!    So, you and I can be Drama Queens together!

Bottom line - I'm not buying the idea that these things are not hereditary.   I'm hoping someday soon, some researcher will find that it is hereditary and I'm going to run around to all the doctors saying "I told you so!".

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Pembo

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Re: AN hereditary component?
« Reply #7 on: January 18, 2009, 05:47:44 pm »
Thanks for all your support...now will you convince my mom that dizziness is a real problem?!  >:( I talked to my dad today, he was particularly dizzy this morning but by the time I talked to him he was feeling much better. I asked if he was going to call the dr and he reluctantly said yes. I wish he'd skip the call to the reg doc and just call the ENT...hopefully the reg office will just say to call the ENT direct.

He is a very active 72 yo and this has stopped him in his tracks. He doesn't feel confident enough to drive or go out much. He did go to his Senior fellowship meeting on Wed and my mom took him with her to the store but other than that, he is just staying home. We've had a lot of snow here and he is usually the neighbor snowblowing for all. He hasn't been out once. He really feels unsteady on his feet. 

My frustration comes from my mom. She was not very patient with me when I was sick and recovering. My dh said she drove him bonkers in those early weeks after surgery. She is convinced my dad is better than he is. I find myself sticking up for him. ie...her comment - He just sits at the computer. I did alot of that...anything to occupy me and I didn't have to move my head.

I will keep pushing the call to the ENT. Hopefully they will go to the ENT that dx me and they will mention me and my history.

Lori-I hope the docs are right and your dad's AN and yours are just a twist of fate. I'd hate to think my kids could go through all this...
Thanks everyone.......and I'll keep you updated.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

lori67

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Re: AN hereditary component?
« Reply #8 on: January 18, 2009, 10:34:36 pm »
I'm going to rephrase my earlier comment - I certainly hope that there is no genetic component.  I think that was worded poorly on my part.  Sorry about that - that came out all wrong. What I hope is that they find what causes these things in the first place so they can find a way to prevent them once and for all.

I think my frustration with my family "protecting" me by not telling me about my dad comes from the fact that I have 4 kids of my own and if there is a hereditary component, I need to know.  My gut instinct is that in my case, there is something hereditary going on.  I could accept the fact that 2 AN's in one family was just a coincidence, but 3 of them sounds like something more is going on here.

Pembo, good luck with your dad.  I hope he agrees to see the doctor.  And if he turns out to be just fine  - then he and your mom can be the ones to say "I told you so!".

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

suboo73

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Re: AN hereditary component?
« Reply #9 on: January 19, 2009, 06:23:34 am »
Dear Pembo, 

I saw your posting when you first wrote it, and now i see you have some great responses!  In my own AN journey, [and with the collective support of this wonderful group], I have been able to see more than one doctor for a 'second opinion' on my situation, and i do not think i am done. 
And i agree with all those here who say your dad needs to see a doctor, just to rule out any condition, no matter what it is.

But - in case you haven't already read my postings, i am only here now because my sister [aka Bigsister] was diagnosed 6 months prior, after having hearing problems for about a year.  This motivated me to seek medical advice at a major medical facility, after the local docs said i was losing my hearing because i was 'older' (40 years old at the time!) - and here i am with an AN too.  Each time we have gone to the doctors, my husband asks about the hereditary factor (being a trained scientist.)  Although the answer they give is always 'technically' 'no,' i believe the real answer is they don't know (IMO).   - Both my children and some of my sister's children (all adults) have asked if they should have an MRI....  What i have told my children is i believe the information regarding the AN is important to know now for their own medical history.

Lori - I, too hope they never prove it is hereditary...but if that ever happens, i will run around with you and say 'i told you so!'

Pembo - i have aging parents - and i think it is so wonderful that you are concerned about their health and well-being.  You are not a drama queen!
Please let us know how your dad is doing, ok?

Sue


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Pembo

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Re: AN hereditary component?
« Reply #10 on: January 19, 2009, 07:54:38 am »
Sue, thanks for your story about you and your sister. I'm thinking if the docs don't know what causes AN's then they can't really know if there is a genetic component. Maybe, maybe not.

I sincerely want my dad's dizziness to disappear and never come back however I am remembering a time many years ago when he was dizzy as well. I will continue my quest to get them to the ENT...
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

Jim Scott

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Re: AN hereditary component?
« Reply #11 on: January 19, 2009, 10:31:33 am »
As an 'aging parent' myself, I would be grateful for an adult child of mine that was looking out for my health.  Fortunately, my wife does that.  My adult son, who is single and lives nearby, thinks I'm going to live to be 100 and isn't overly concerned about my health.  I assume that's because, while growing up, I was almost never sick, except the occasional cold or flu. He was a bit worried about my AN, until he found out it was a benign tumor and saw me in the hospital, complaining about the food and wanting to get out and have a decent meal.  He laughed and remarked: "You're fine.  Perfectly normal".   I did recover quickly and my son pushing me to do things with him that we both enjoyed, such as mini-golf, probably helped.  However, I assume that if I suffered from persistent dizziness, I would see a doctor.  My wife would certainly urge me to do. 

I know that 'dizziness' can be brought on by high blood pressure.  My mother (divorced from my father) suffered from dizziness for some time but kept it a secret (I lived 100 miles away and only saw her every few months).  When she finally told me, I immediately got her an appointment with a doctor.  He diagnosed her as having extremely high blood pressure and ordered medication and bed rest.  I couldn't stay with her (she lived alone) and I suspect she didn't get the bed rest and may have stopped taking the medication.  Unfortunately, my mom suffered a stroke a few months later and died in the hospital.  She was 66.  That was 31 years ago.  I'm now approaching the age she was when she died.  Fortunately, I'm in good general health.  My blood pressure is normal and I do see a doctor occasionally.  Ironically, my pre-op testing actually showed that, technically, I'm in better shape than I realized.  This was encouraging because I generally eat what I like (in moderation, of course) and have never been a big fan of exercise.  My son often reminds me that my father lived to age 92.  He died from what I consider neglect, in a nursing home, from prostate cancer.  My son has decided that I'm good for at least another 20 years, so he isn't too concerned about my health.  I'm no health 'fanatic' and don't obsess over every little twinge or minor pain but since my AN experience, in which I feel I 'ducked a bullet' I'm a bit more cognizant of my health.  I keep my weight where it should be (21.6 BMI), sleep at least 7 hours a night and get as much 'natural' exercise as I can.  I try not to be sedentary for more than a day. I stopped smoking 20 years ago and, although I'm not a total abstainer, I drink very little alcohol.  So far, so good.   

Of course I have no idea what is the cause of Pembo's fathers dizziness and I don't mean to frighten her - or anyone else.  I'm just noting that 'dizziness' can be the manifestation of a variety of possible causes and even though she had an acoustic neuroma, anyone in her family that complains of a possible AN-related symptom doesn't necessarily have an AN.  Fortunately, high BP, should that be the cause of her father's dizziness, can be controlled with medication and, with some effort (diet, exercise) brought down to safe levels.  Whether AN's are hereditary is an open question at this point.  I know of no one in my family that had one and I think this is fairly common for AN patients.  That's probably why the medical community doesn't see a genetic component with AN's.  Of course, they could be wrong.  I hope we'll find out one day soon so these maddeningly located little benign tumors can possibly be stopped before they begin, with medication or other means.  Meanwhile, Pembo's dad is in my prayers and I'm looking forward, with her, to learning about the results of his examination.

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.

Mickey

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Re: AN hereditary component?
« Reply #12 on: January 19, 2009, 11:33:58 am »
I personally think everthing has to do with genetics. As we have found out over the years about whenever you go for a mediical the questions always come up "who in yor family has what" Why not AN`s? Relitively new as far as investigating. I know both my grandfathers and mother were hard of heaing, with tinnitus. They may have took  there AN`s with them and my mom at her age I wouldn`t even bother to worry her.  Very possible!, Mickey