Familial AN ?

[kat]

 

Hi Everyone

It is a long time since I last posted . There is nothing to report about my AN since it seems to have stopped growing and I am now having MR Is every 2 years
my next one will be in April . The reason for this post is the fact that I am concerned about the possibility that my sister might have an AN . i know that it it so unlikely
that I have not given it much thought . She suffers from terrible migraines and has done for the last 20 years or so but what I did not know was the fact that she has
lost  much of her hearing in her right ear . She does suffer from high bloodpressure as well which is hard to control even with medication and all this is making her really depressed
I saw a post on the UK An site about persons in the same family having ANs and began to wonder whether this would be possible . I know that she has not had any MRI scans
and really do not wish to alarm her unnecessarily by telling her about my fears . I am actually in the USA in Virginia by the Chesapeake Bay hoping to start heading south on the
ICW on our sailboat aiming to end up in Florida and the Bahamas for the  winter  which I am really looking forward to . 

Regards  Kat

[ppearl214]

Hey Kat! Great to see you!  Glad to hear you are Stateside and doing well.

For my 2 cents... it is my understanding that there is a genetic issue called NF2, which relates to chromosome 22 issues.  In NF2, there are typically bi-lateral AN's (both ears) and possibly tumors elsewhere in the body (ie: spine, etc).

Now, in my case... my sister also had a brain tumor but not an AN... so, I can well understand the concerns of a sibling possibly having a related issue.  As you know, your sister's best bet is to have an MRI with contrast to rule out any "mass"... to help put your mind (and her's!) at ease.   If there is nothing there (my hope, of course!), then there are other avenues to investigate to see what could be causing these issues (ie: migraines, etc).

Try to keep peace of mind and heart and hoping she follows up with her GP to find out what could be going on. I'm certainly not going to speculate as I'm not a doctor (nor play one on tv) and there are soooooo many reasons why these issues could be occurring. I, basically, only wanted to respond to your question for "familial AN's" and yes, they can exist in NF2 patients.....  Although can't be ruled out... there may be close blood relatives that have unilateral (single-sided) AN's but I personally don't know of any.......

Here's hoping your sister gets answers she seeks.. .and I'm jealous about your sailing! I bet Captn Deb would be as well!

Anchor's aweigh!
Phyl

[Cheryl R]

There are 2 sisters on the forum which do.      One is named Sue but not sure if that is her id name and isn't the other big sister.   
They are not NF2.    Plus doesn't Lori have a relative also?   
                                                            Cheryl R

[ppearl214]

There are 2 sisters on the forum which do.      One is named Sue but not sure if that is her id name and isn't the other big sister.   
They are not NF2.    Plus doesn't Lori have a relative also?   
                                                            Cheryl R

Hey Cheryl! 

BigSister and Littlesister?  Please elaborate how they ruled out NF2..... I'd love to know (learning process, ya know?)

Not sure about Lori and a relative (is it a blood relative?)

Definately will follow along!

xox
Phyl

[ppearl214]

Cheryl

follow up to my post above... Big sister and suboo.

http://anausa.org/forum/index.php?topic=10308.msg118946#msg118946


Sue/suboo does note the paternal connection but have they officially ruled out NF2... that is what I haven't found yet.
Phyl

[Cheryl R]

My poor memory did not remember that post but was just thinking that they had said no NF2 so who knows.      You have a better detail of memory.          I have no idea if my father also had NF2 as had some hearing loss and other symptoms whcih was called TIAs and problems due to diabetes.         I am guessing he did not as think his problems were notnot until old.     He was 53 when I was born so hard to know.    My NF2 wasn't found till I was 51 so will never know as he died when I was 21.   
            Thanks for finding the info.                    Cheryl R

[ppearl214]

My poor memory did not remember that post but was just thinking that they had said no NF2 so who knows.      You have a better detail of memory.          I have no idea if my father also had NF2 as had some hearing loss and other symptoms whcih was called TIAs and problems due to diabetes.         I am guessing he did not as think his problems were notnot until old.     He was 53 when I was born so hard to know.    My NF2 wasn't found till I was 51 so will never know as he died when I was 21.   
            Thanks for finding the info.                    Cheryl R

Cheryl, your memory is just fine as I am the one that missed BigSister and suboo (and YOU didn't! ).  I think I found a post for Lori noting her dad had a tumor (not sure if AN or not and will dig further for the info).... unless she runs in, drops her halo and confirms!

I think there are many AN'ers that are NF2 but the prior generations just didn't know or not.  Unfortunately, many will not know (like yourself) but on a positive note, technologies and such are now in place to help with better determinations.   to me, that is great news!

xoxo
Phyl

[Kaybo]

I am not doing anything with Lori's halo, but just stating that was her father that had an AN...

K 

[ppearl214]

I am not doing anything with Lori's halo, but just stating that was her father that had an AN...

K  

thanks for keeping Lori's halo on straight, K!    

Did find this post from lori from Aug 09, elaborating on her situation, as well as her dad's... no confirmation of NF2 to my knowledge but unsure if Lori has pursued genetic research for her family:

http://anausa.org/forum/index.php?topic=10308.msg119867#msg119867

Still waiting to see her run in and halo-drop!

Phyl

[BigSister]

Hi There,
This is Big Sister, April.  I was diagnosed with my AN in May 2008.  After getting the news, I thought immediately about my sister Sue (SueBoo73).
She had complained of hearing loss for over 10 years.  When I told her what was going on with me , she went and confirmed what we both did not
want to hear.  We both have ANs.  I mentioned it to my doctor and he was interested in her reports.  There is no conclusive evidence of genetics,
but this is just a little too strange.  I have been trying to track down any other family history. One of my aunts who passed away years ago had hearing
problems (there is a family thing with early hearing loss in both ears), but this aunt had a more distinct loss in one ear and in her 50's developed
Bell's Palsy (at least that was the diagnosis then, pre MRIs).  So I  wonder about that.  No one else in the family,yet, has any symptoms that would
indicate another AN.
So there you have it, no NF2, just to great people sharing something a little too uncommon.
We are both in watch and wait at the moment.  My tumor is just over 2cm, so sooner or later there will be treatment.  So far no change in the last year.
Contemplating the GK at University of Penn.  Great doctors there.  Waiting for now.

BigSister,
April

[Jim Scott]

Hi, Kat ~

To the best of my knowledge, and I'm not a doctor, the exact cause of acoustic neuroma development is unknown at this time but I have often read that they are not considered to be hereditary.  As the previous posts (and links) demonstrate, that doesn't completely rule out the possibility of your sister having an acoustic neuroma, but it makes the chances almost infinitesimal.  NeurofibromatosisType II (NF2) tumors, while also benign, are a different matter as they are at least 50% genetic and grow more aggressively than 'normal' ANs.  However the incidence of NF2 in the general population is very low.  

While my uneducated guess is that your sister doesn't have an acoustic neuroma, advising her to have an MRI 'just to be safe', might be a prudent suggestion.  Headaches (and even unilateral hearing loss) can be caused by a wide variety of sources.  An MRI could find something that might give her doctor a clue as to the source for her debilitating migraine headaches as well as the hearing loss.  It just seems like the obvious thing to do.  The words 'acoustic neuroma' or 'brain tumor' need never be mentioned - and I wouldn't.  Your sister may be avoiding an MRI out of fear that either of these things could be discovered, but if so, the decision is hers to make and you can only advise, suggest and support her.  

I hope you enjoy your sail and southern destinations .  Any envy you may notice here is purely coincidental.  

Jim

[lori67]

Lori comes WALKING in....carefully....in an attempt to keep halo in its proper place...

Yes, my dad did have an AN also.  His was small and discovered accidently during an MRI when he was at the early stages of Alzheimer's.  He had lost his hearing gradually in one ear, but we always chalked it up to normal aging (and the fact that he had 4 daughters and probably wished for many years to have some peace and quiet).  He never had any treatment for it, due to his age, a lack of troublesome symptoms and the Alzheimer's.  Turns out, he may have actually had 2 AN's - still trying to find that out but trying to get medical records from the Veteran's Administration after someone has passed away is not an easy task.

Anyway, my doctor is not concerned that it is NF2 as neither one of us had any other symptoms of it.  He also feels that if you have NF2, you don't develop your first tumor as late in life as my dad's (probably in his 70's).   He did state that while there is probably no direct genetic link (that has been discovered yet), he does feel that some people are just predisposed to developing AN's.  In my case, I had radioactive iodine treatment for an overactive thyroid shortly before my AN probably began growing.  The theory being that I was predisposed to developing an AN, but may not have if it weren't for the radioactive iodine.

Have a safe trip - and I'm in Virginia Beach - if you see someone swimming out to your boat, it's just me!

Lori

[kat]

 
Hi everyone

Thanks for your the quick response . I knew I could rely on you guys for support  . I think that I will just e mail my sister and ask if her doctor has considerd her having an MRI
without even mentioning my AN which she does also know about but because I have had such an easy time of it she may not think of it as too scary . She lives in Stockholm
Sweden and because they seem to be excellent on all fronts I am surprised that she has not been referred for an MRI with the symptoms that she has . I would not be a good
sister to her if I did not try to persuade her to have one . 

I am really looking forward to our trip south  and I really envy you all for having such a beautifull and varied country to live in  .

Best regards Kat

[suboo73]

Hi Kat!  I am Sue, little sister to Bigsister. 
Yes, when i went to my first few doctor appointments, one ENT said, sure there 'might' be a genetic connection, but nothing 'proven' or official, so that was his answer.  Another doctor said, no genetic connection.
It IS strange that my sister and i both end up with an AN - but more importantly, i would not know my condition had it not been for my sister.

I hope if your sister is having very bad migraines, that she has some further testing (such as an MRI) to rule out any other conditions.
This is what i did, and i am forever grateful.  [THANKS SIS!]

I live in the 'top of Virginia' in the Shenandoah Valley.  You are right - there are many beautiful places in the US - i am so glad you can visit!
Enjoy your sailing to the Bahamas!

Sue

PS  Cheyl, Phyl - your memories are wonderful!  Thank you for thinking of my sister and me!

[kat]

  Hi everyone

I just got a mail back from my sister and she will ask her doctor for an MRI with contrast and all we can do is wait and hope for the best . Again thank you all for your response and I wish good luck to both of you Bigsister and Littlesister . I still have no regrets having chosen GK over 4 years ago . So far so good !

Best regards Kat