ANA Discussion Forum
General Category => AN Issues => Topic started by: lholl36233 on August 18, 2009, 03:28:05 pm
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I believe my father had this. My symptons first appeared just before he died of congestive heart failure (which I believe is unrelated to our problem). I said to him once, "I have ringing in my ear." He had a surprised look on his face and said, "so do I." He then tried to explain it to me like it was nothing Looking back, he was speaking with the voice of experience. My mother spoke to his 80 year old sister who said she completely lost her hearing in one ear a long time ago (maybe she was in her 30s like me) and has ear ringing. She never questioned it.
I can't believe I am related to people who would ignore this? I am not going to follow their path...
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My personal belief is that AN`s are more common than we all think. I was reading that in some places where they do autopsy on everyone who dies 1 percent have some kind of AN in their head. Just a little tidbit of info while resarching over the years. Mickey
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Tinnitus, or ringing in the ears, is a common ailment, esp. for those over 50. I have friends w/the same complaint and they seem to be tumor free. While tinnitus is very much associated w/ANs, it is not necessarily a harbinger of a tumor as far as I can tell.
Priscilla
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I'm a little lost here - although I'm familiar with BAHA, SSD, AN, etc. - what is a CPA tumor??
If we're talking ANs, they aren't supposed to be hereditary, but we've had cases on the Forum. Lori67's dad had one and then there's Big Sister and Little Sister.
Jan
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Hi all
CPA tumors means cerebellopontine angle tumors, of which AN's fall into the category, as well as other tumors in the CP angle region.
My sister died of a malignant childhood astrocytoma... have spoken with my docs to see about genetic testing... for me, at this point.. and where there are no plans for children, it's a moot point for me, thus, I will not pursue.
Phyl
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Thanks for the clarification, Phyl.
To me, CPA always means Certified Public Accountant - but then again, I'm a beancounter :)
Jan
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Thanks for the clarification, Phyl.
To me, CPA always means Certified Public Accountant - but then again, I'm a beancounter :)
Jan
figures! ;)
xoxoxoxo
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Does it make sense to completely lose hearing in one ear and ignore it feeling, "I can hear great in one ear, I don't have a problem"? Apparently, it does on my father's side of the family. I agree, tinnitus doesn't automatically mean a tumor but also losing hearing makes me wonder...
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Does it make sense to completely lose hearing in one ear and ignore it feeling, "I can hear great in one ear, I don't have a problem"? Apparently, it does on my father's side of the family. I agree, tinnitus doesn't automatically mean a tumor but also losing hearing makes me wonder...
I had hearing loss, facial numbness, and occasional vertigo and managed to ignore it about 3 years. When my balance went to hell and my vision went crazy after having my 2nd baby and I couldn't ride my horse very well, I finally went to the dr. I hate going to the dr. I did go to the chiro before that, because I thought I had a pinched nerve in my neck (I also had neck problems that were tumor related). Did I mention that I don't like going to the dr?
Vonda
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Laura ~
To date, the medical literature regarding acoustic neuromas does not indicate a credible case for heredity exists, except with Neurofibromatosis, type 2 (NF2), which is generally accepted by the medical profession to be a genetic disease.
Unfortunately, there are myriad causes for unilateral deafness and, even more so, tinnitus. Close to 20% of the U.S. population suffers with tinnitus - which translates to about 60 million people. I endured slowly diminishing hearing in one ear for quite a few years and simply accepted it, because, like 'Arkansas Farm Girl,' I hated going to the doctor and I just assumed the hearing loss was 'natural' due to aging and my 25-year career as a radio disc jockey, wearing tight-fitting headsets while playing rock music - for hours at a time. On hindsight, it seems rather foolish, but I thought it was quite reasonable at the time because I had almost no medical issues prior to this and made fallacious assumptions to justify avoiding a doctor visit. So, I managed to adjust to my SSD and 'moved on'. Right up until dizziness and losing my sense of taste (and 30+ pounds) along with all my energy (to the point of severe lethargy) drove my wife to become alarmed and make a doctor's appointment for me. The rest, as they say, is history (and noted in my signature).
My completely unprofessional conclusion is that acoustic neuromas are not hereditary and that the correlation between ANs and tinnitus is far more apparent than real. Of course, I could be wrong. :)
Jim
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Hi,
I have a CPA tumour. I was told by all the medical professionals that reviewed my MRI that this is the same as an AN causes same symptoms and long term effects, but because it is originating from CPA to ICA they call it a meningioma. None of them mentioned anything about this being heriditary or asked if me anyone in my family has one. Interesting enough, my mother seems to have always had trouble with one ear, ringing, vertigo, headaches, but no hear loss that she can determine. However, she was never tested. I also heard the same thing that Mickey referred to. A lot of times, these tumours go undiagnosed, and although the doctors say they are rare, they do find a lot on autopsy.
Vivian
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My mum has hearing loss, ringing, severe vertigo and headaches and was tested for an AN long before I knew I had one... she has Meniere's disease though. No tumour. I am the lucky one though - my tumour is gone and I'm fixed. Her symptoms are still there. Poor mum. xx
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I'm a little lost here - although I'm familiar with BAHA, SSD, AN, etc. - what is a CPA tumor??
If we're talking ANs, they aren't supposed to be hereditary, but we've had cases on the Forum. Lori67's dad had one and then there's Big Sister and Little Sister. Jan
Hi holl36233!
I am "little sister" [thanks for remembering, Jan!] but so far, there doesn't seem to be a proven hereditary connection. My husband asked one doc and they said no. Then asked the 2nd and they said well, maybe. We just figure it hasn't been 'mapped' yet in that great Human Genome project!
Anyway, my paternal grandmother had severe hearing loss in one ear, but to the best of my knowledge, no other symptoms- she was a school teacher in one room schoolhouse (!) and took daily walks into her 90s. Her daughter had hearing loss. My dad (her brother) has some hearing loss. And now my sister and me. So go figure! ???
The only advantage is we have the technology not available before, to rule out or see various things inside the body. On the flip side of that, i have had false readings on my mammograms - technology AHEAD of the docs ? I was called back several times and various test later, no problem. Boy, did they have me going!
I am an information person, so i try to keep that in mind and gather what i can. What was frustrating for me is misdiagnosed for over 12 years, and my sister found out in one month! G-d bless my SISTER's ENT or i wouldn't be here today.
All my best and keep those great questions coming!
Sincerely,
Sue
PS - Hijack - glad to hear from you, Joebloggs! I will say a prayer for your mum.
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Up until the past 25 years I`m sure that many AN`s went unnoticed. They probably went on with symptoms and took them as getting older and ended up taking them to their rest. My mother well into hers eighties has ringing for as long as I can remember and hearing is very bad, 2 hearing aids. I never put anything into motion with her all these years and she has no idea of what my condition is. (don`t want to alarm her). For her age shes doing pretty well otherwise. Very interesting, Who knows? Mickey
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If we could all analyze this in our family trees, my guess is that we would potentially have 3795 different results. It would be oh so nice and neat if we could say, this is what causes ANs or "it was in my family." However, I think researchers are making giant strides on cause/effect of ANs but they still have no definite results.
In my case, my father had tremendous tinnitus and hearing loss, but he died at age 70 of heart disease with no one investigating any source of his tinnitus so I will never know. At least my children can be watchful now for any appearance of symptoms and be tested early.
Clarice
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Thank you Clarice. My father did say he had tinnitus. If he completely lost hearing in one ear, I wish he had said something. I could have been tested for a problem before I had any symptoms.
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Jan is right (again!) - both my dad and I were "blessed" with AN's. I recently found out he may have actually had them bilaterally, but still trying to get the medical records to find out if this is the case or not. He had advanced Alzheimer's Disease when the possible second one was found, purely by accident, so there would have been no treatment done for it anyway.
I asked my doctors if I should be concerned and they all stated that while it is not considered to be hereditary (except for NF2), there do seem to be some families that just have a predisposition to developing an AN. In my case, I had Radioactive Iodine treatment for an overactive thryoid about a year before my AN most likely started to appear, and studies have shown that certain things, like radiation around your head/neck area can trigger an AN to grow. My guess is that I already had a higher liklihood than others of developing an AN and the radiation just jump started it. Maybe without the radiation, it never would have been there.
When I asked about the possibility of NF2 in my family, my doctors were pretty sure that if it was, my dad's first AN would have appeared sooner - he was nearly 70 at the time, and it was very small and only discovered by accident. They also told me that he would have had other symptoms, which he didn't have. So I guess we can just chalk it up to bad luck, radiation and probably growing up in NJ for my family.
I do watch my kids for anything out of the ordinary, but I'm not going to stress out too much about it. If I see something not right, I know to get it checked out.
Hopefully someday someone will figure out what causes these things so maybe we can do something to prevent them.
Lori