ANA Discussion Forum

General Category => AN Issues => Topic started by: kat on October 21, 2006, 08:15:27 am

Title: Hereditary AN ?
Post by: kat on October 21, 2006, 08:15:27 am

Hi everyone

I have just got news from my parents about my father having to have a cat scan to examine his brain . He is 80 ish and has been experiencing balance problems as well as poor memory . They are a bit guarded about the symptoms and do not wish to alarm me with any more information . He will be having the scan in the next 10 days or so . I do not wish to be alarmist about this but I thought that it might be worth a mention to their neurologist that I have an AN .  I do not know how likely it is that he would have anything similar and more than anything I do not wish to alarm them with even thinking that he might have a brain tumour . I could really do with some information as to what if any likelihood there is that this might be the case .

Regards to all Katarina

Title: Re: Hereditary AN ?
Post by: kat on October 22, 2006, 05:24:07 am

Hi Bruce

Thanks for your reply . I have had a good look at the website mostly about NF2 and the more I read the more unlikely it seems that this would be the case.  I will ask my brother to mention my AN when he accompanies my father for the scan.
I also assume that hereditary AN must be very rare since there has not been any other replies to my post. In this case
no news must be assumed to be good news .

Best regards Kat 

Title: Re: Hereditary AN ?
Post by: nancyann on October 22, 2006, 05:53:20 am

Hi Kat:   I haven't read anything about AN having a hereditary component but who knows?  I'm the only one in my family who seems to grow tumors (the AN was my third and the worst due to the facial paralysis).      I wish you and your family all the best.   Nancy

Title: Re: Hereditary AN ?
Post by: Cheryl R on October 22, 2006, 06:25:48 am

Hi Kat.   At your father's age it is more likely to be changes in the blood vessels that they are looking for.          Narrowing of the vessels or signs of a stroke.      I can't remember if any sign of Parkinsons would show up in a CT scan.              Single sided AN is not hereditary.     
Let us know how it turns out.                       Cheryl R.

Title: Re: Hereditary AN ?
Post by: ppearl214 on October 22, 2006, 09:41:29 am

Hi Kat... interesting topic and thanks for briniging it up.

Many here know that I lost a sister back in 1969 to a malignant brain tumor (a childhood astrocytoma).  Pre-Cyberknife, I had to meet with the radiation social worker and we discussed this (also discussed with my neuro-oncologist).  Although AN's are not heritary, we did discuss about genetic counseling to see, if for some reason, my family is predisposed to brain tumors.  My maternal grandmother also had issues over the years with balance and exceptionally bad tinnitus, but no MRI or such were ever done with her. She had these symptoms since her 60's and died at the age of 97, so we will never know.

So, maybe genetic counseling is a thought to see if anyone is predisposed for brain tumor. I am going to follow up on it from my standpoint since there were 2 siblings in our family... although 2 different kinds of tumors, but overall... still things growing in our head.

Hope all is well.
Phyl

Title: Re: Hereditary AN ?
Post by: kat on November 20, 2006, 04:19:41 pm

Hi everyone

The results of my fathers  brain scan show nothing irregular ,which is a relief . He will have to have some more tests to
determine what might be causing his symptoms .

Regards Kat 

Title: Re: Hereditary AN ?
Post by: Jim Scott on November 20, 2006, 05:27:52 pm

kat:

According to all the medical research I've read, Acoustic Neuromas are not inherited. 

I'm pleased to learn that it appears your dad doesn't have one.  However, at '80ish', a lot of things could cause his current problems and, were I his physician, I would probably prefer he undergo an MRI scan to get a 'better look' at his brain and to totally rule out - not only an AN - but any other tumors or abnormalities.  You might mention to your father's physician, the possibility of your dad undergoing an MRI  (its painless).  An MRI scan (with contrast) could tell him a lot more than a CAT scan will, in terms of finding brain abnormalties .  I'm not a doctor - but that would my next move.   I wish you and your dad all the best.

Title: Re: Hereditary AN ?
Post by: kat on November 22, 2006, 06:21:19 am

HI Jim

Thanks for your input ,it is much appreciated . I have sent my brother a message about possible MRI with contrast. I live in UK and my father is in Finland hence my brother is the one who is taking care of fathers appointmnets etc. Also he is being a bit protective about fathers symptoms but I gather that extreme tiredness and poor balance are some of them as well as loss of short term
memory and the most worrying aspect is that he has lost intrest in reading which was always really important to him . So far they
have discovered that his bloodsugar levels are extermely high .  He will be examined further in a specialist neurological unit sometime in December  where he will stay  for 2-3 days so hopefully they will get to the bottom of the problem then .

Best regards Kat
 

Title: Re: Hereditary AN ?
Post by: kat on February 25, 2007, 06:33:49 am

Hi everyone

After various tests and scans my father has been diagnosed as having Parkinsons disease . It is a relief for him since he has been given some medication which seems to be working and improving his quality of life a lot.

Regards Katarina

Title: Re: Hereditary AN ?
Post by: Jim Scott on February 25, 2007, 04:12:26 pm

Katarina

Thanks for the update. 

Although Parkinsons disease is nothing anyone wants, at least your father finally has a diagnosis - and a somewhat treatable condition. 

I certainly wish him the best possible health in the years he has remaining.  Stay strong.

Jim

Title: Re: Hereditary AN ?
Post by: Denise on February 26, 2007, 07:56:39 am

Kat,

My dad had the same symptoms your say your dad is having. We were told he has a stroke and that is why he had short term memory loss.  We all thought it was the start of Alzheimer's.  My mom refused to believe it, and kept taking him to different doctors and finally about two years ago, he was diagnosed with NPH (Normal Pressure Hydracepalus (sp?), anyway June of 2006 he had surgery, they inserted a shunt and drain, and the improvement is amazing. He used to repeat himself all the time, he could not follow a conversation, and he told the same story at least 10 times. He couldn't remember he ate, so he ate again.  He also couldn't remember who the new grandchildren and great grandchildren were.  It was crazy, sad. 

Since the operation his memory has returned about 50%.  By June of this year they expect him to have 90% of his memory back.  He can remember everything going on now during the day and what happened yesterday, he knows the new grandchildren by name.  When he gets really tired, he has some trouble remembering, but i can't tell you how GREAT he is doing now. The difference is amazing. Even in the hospital right after surgery, the confused look was gone and he looked clearer and more alert.

I never worried that he might have an AN, because I read they are not heriditary.  I hope your father's cat scan is clear of AN and they can diagnose and provide a treatment alternatives for him.

Good luck to you, your father and your family,
Denise