Hereditary and one sided Acoustic Neuroma

Posted by kathp @kathp, Jan 5 3:37pm

My husband had an acoustic neuroma removed 21 or 22 years ago. I understand that acoustic neuromas are rather rare and I think only the bilateral ones run in families. But today I just found out his first cousin had surgery to remove one also this past year. (Both his and my husband’s were one-sided). We were told we needn’t worry about our children inheriting this -but now I have to wonder.
Do I need to have my children contact their doctors?

Interested in more discussions like this? Go to the Brain Tumor group.

@kathp
Good morning,
Based on my family’s history I believe there is at least a strong predisposition for unilateral acoustic neuromas to be hereditary. My families Acoustic Neuronal story starts 96 years ago in 1926 when my grandfather died from one. Almost 67 years ago his son (my dad) had one removed in 1955 and in 1960 his Mom had one removed. My parents had two children and neither of us had one but when I was 42 (the age my grandfather and father were when they had theirs) I went lickety-split to the doctor and demanded a brain scan. My brother's grandson had one at 15 and also my great aunt had one as well.
So I don't buy into the bilateral only hereditary theory.
Fingers crossed for your children,
Jake

REPLY
@jakedduck1

@kathp
Good morning,
Based on my family’s history I believe there is at least a strong predisposition for unilateral acoustic neuromas to be hereditary. My families Acoustic Neuronal story starts 96 years ago in 1926 when my grandfather died from one. Almost 67 years ago his son (my dad) had one removed in 1955 and in 1960 his Mom had one removed. My parents had two children and neither of us had one but when I was 42 (the age my grandfather and father were when they had theirs) I went lickety-split to the doctor and demanded a brain scan. My brother's grandson had one at 15 and also my great aunt had one as well.
So I don't buy into the bilateral only hereditary theory.
Fingers crossed for your children,
Jake

Jump to this post

Thank you @jakedduck1

REPLY

"The cause of acoustic neuromas can be linked to a problem with a gene on chromosome 22. Normally, this gene produces a tumor suppressor protein that helps control the growth of Schwann cells covering the nerves.

Experts don't know what causes this problem with the gene. In most cases of acoustic neuroma, there is no known cause. This faulty gene is also inherited in neurofibromatosis type 2, a rare disorder that usually involves the growth of tumors on the hearing and balance nerves on both sides of your head (bilateral vestibular schwannomas).

Neurofibromatosis type 2 only accounts for about 5% of acoustic neuroma cases." Read more here:
– Acoustic neuroma https://www.mayoclinic.org/diseases-conditions/acoustic-neuroma/symptoms-causes/syc-20356127

@kathp, do you know if your family members had NF2?

REPLY
@colleenyoung

"The cause of acoustic neuromas can be linked to a problem with a gene on chromosome 22. Normally, this gene produces a tumor suppressor protein that helps control the growth of Schwann cells covering the nerves.

Experts don't know what causes this problem with the gene. In most cases of acoustic neuroma, there is no known cause. This faulty gene is also inherited in neurofibromatosis type 2, a rare disorder that usually involves the growth of tumors on the hearing and balance nerves on both sides of your head (bilateral vestibular schwannomas).

Neurofibromatosis type 2 only accounts for about 5% of acoustic neuroma cases." Read more here:
– Acoustic neuroma https://www.mayoclinic.org/diseases-conditions/acoustic-neuroma/symptoms-causes/syc-20356127

@kathp, do you know if your family members had NF2?

Jump to this post

I believe they tested my husband for NF2 at the time of his surgery and he was negative. But now that his cousin has had one also, I was just wondering if there was something else that could be causing a hereditary link.

REPLY
@kathp

I believe they tested my husband for NF2 at the time of his surgery and he was negative. But now that his cousin has had one also, I was just wondering if there was something else that could be causing a hereditary link.

Jump to this post

Kath, there may a hereditary link that science has not yet discovered. It may also be coicidence or perhaps an external factor, i.e., environmental. Did your husband and cousin grow up or live in the same area or work in the same industry for example?

But back to your original question about your children. At the moment, I don't think there is a genetic factor other than NF2 that they could test for, which is not applicable since your husband tested negative. Such would be my understanding, but you may wish to talk to your husband's doctor to confirm. Genetics is an ever-evolving field of study.

REPLY
@colleenyoung

Kath, there may a hereditary link that science has not yet discovered. It may also be coicidence or perhaps an external factor, i.e., environmental. Did your husband and cousin grow up or live in the same area or work in the same industry for example?

But back to your original question about your children. At the moment, I don't think there is a genetic factor other than NF2 that they could test for, which is not applicable since your husband tested negative. Such would be my understanding, but you may wish to talk to your husband's doctor to confirm. Genetics is an ever-evolving field of study.

Jump to this post

Thanks Colleen for your response.
I wouldn’t think there would be an environmental factor. My husband grew up on the farm (farmer) and his cousin grew up in a town 20 miles away (retail).
I think I’ll just instruct my grown children to be vigilant in watching for symptoms and not to procrastinate in following up on anything they suspect.

REPLY
Please sign in or register to post a reply.
  Request Appointment