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Author Topic: Hereditary?  (Read 10517 times)

LB

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Hereditary?
« on: June 13, 2011, 08:01:38 pm »
Hi,

I've recently been diagnosed with an AN and have lost 40% of my hearing on the left side.  Interestingly, the only reason my AN was discovered is because I happened to mention that my Mom had a tumor almost 15 years ago.  My doctor said he didn't anticipate that I had anything but we might as well have a MRI just to make sure.  My ENT and the specialist I saw for a 2nd opinion were both surprised that both my Mom and I have an AN on the same side.  Just trying to collect as much information so I can decide how to proceed.  My AN is 1.2 CM and I'm in a watch and wait status for now.

Any feedback or guidance is greatly appreciated.

Thanks!

LB
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CHD63

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Re: Hereditary?
« Reply #1 on: June 13, 2011, 08:13:58 pm »
Hi LB and welcome to this forum!

I hope it is just a weird coincidence that you and your mother have both had acoustic neuromas.

Has anyone suggested that either of you be tested for the possibility of being NF2 (neurofibromatosis-type-2)?  That is the genetically transferred type of acoustic neuroma.  See:  http://ghr.nlm.nih.gov/condition/neurofibromatosis-type-2

If your mother has had no other tumors, it probably is not NF2, but you may want to be checked to make sure.

Let us know how you are doing and ask away with any other questions.

Clarice

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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

LisaP

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Re: Hereditary?
« Reply #2 on: June 18, 2011, 02:31:27 pm »
Hi,

 I have a sad story, my brother was dx with a gleoblastoma on September 8, 2007, CA brain tumor, I was dx with an AN on March 31, 2008.  My brother died at age 49 and I continue to W&W, so hereditary?  I have asked this question and doctors don't know.   They just say that I was the lucky one?  I guess, but boy do I miss my brother.

LisaP :(
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LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

nftwoed

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Re: Hereditary?
« Reply #3 on: June 18, 2011, 02:42:35 pm »
Hello;

  Well, for NF-2, the other tumor doesn't have to be in the other ear. It can be anywhere in the body ( 'any two of' ), but bilateral ANs are much more common.

  It would take a full body MRI to know for sure, as blood tests are only about 60% accurate for NF-2.

  Maybe see a Medical Geneticist.

Quote from: LB on June 13, 2011, 08:01:38 pm
Hi,

I've recently been diagnosed with an AN and have lost 40% of my hearing on the left side.  Interestingly, the only reason my AN was discovered is because I happened to mention that my Mom had a tumor almost 15 years ago.  My doctor said he didn't anticipate that I had anything but we might as well have a MRI just to make sure.  My ENT and the specialist I saw for a 2nd opinion were both surprised that both my Mom and I have an AN on the same side.  Just trying to collect as much information so I can decide how to proceed.  My AN is 1.2 CM and I'm in a watch and wait status for now.

Any feedback or guidance is greatly appreciated.

Thanks!

LB
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LB

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Re: Hereditary?
« Reply #4 on: June 19, 2011, 06:46:38 pm »
Thanks so much for your recommendations. I'm checking everything out and appreciate your support.
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cdove

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Re: Hereditary?
« Reply #5 on: June 21, 2011, 02:34:43 pm »
Hi,
I have a cousin who also had AN. My doctor said it was a coincidence. Even if it is hereditary, I've decided not to worry about it since I can't do anything about it anyway.

Regards,
Chris
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5-7mm Right Side AN diagnosed 5/2001
Stable with little change
Proud member of W&W ever since

CNY

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Re: Hereditary?
« Reply #6 on: June 22, 2011, 10:32:02 am »
There was a session at the Symposium by Drs. Elizabeth B. Claus & Andrew T. Parsa, "Genetics of Acoustic Neuroma"
Here is the program description: "A discussion of what is known of the genetic basis of vestibular schwannomas will be featured"

I didn't attend this Sunday morning workshop however I did hear Dr. Claus give her "Epidemiology-What Causes Nerve Sheath Tumors?" talk to the General session of the symposium on Saturday-- she discussed the possibility of studying AN patients and conducting DNA research.

Audio CDs/MP3s of the conference should be available eventually on the ANA website.

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Translab @House 5/14/09 (2 cm)

Ellen K

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Re: Hereditary?
« Reply #7 on: June 30, 2011, 10:30:15 am »
I've wondered about a hereditary link too.  My first symptom was vertigo attacks for several years.  Both my sister and mother also get vertigo attacks - my mother is old enough (81) that an AN would probably be irrelevant, but my sister is 49 and just started getting the attacks.
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3mm diagnosed December 2010 when I was 45. Very unusual presentation - severe vertigo, then dizziness daily, now just occasional dizziness, but it can be debilitating some days. No hearing loss! But yes to ear fullness and wonky brain. Watch and wait.

Sheryl

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Re: Hereditary?
« Reply #8 on: July 07, 2011, 08:40:04 pm »
My husband has a benign meningioma that has regrown three times through Cyberknife and hopefully his second surgery has stopped it.  It is an "atypical grade 2" which has a higher propensity for return.  I have been a W&W for almost 10 years for a 9th cranial nerve schwannoma - like an AN but on the 9th nerve rather than the 8th.  Obviously there's no hereditary factor between the two of us, but I do worry about our son.  I've been told that they don't know.
Sheryl
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9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Phillip64

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Re: Hereditary?
« Reply #9 on: July 08, 2011, 10:33:20 am »
Wow, I just found out this week that I have AN in right ear (3mm) and only symptom (ringing) was in left ear.  Both my mother and older sister had AN and so the doctor said that was the only reason he was suggesting an MRI.  Sure is strange to have 3 in family.  I am currently just on the watch and wait (another MRI in 6 months.  I was also reading about burning mouth.  I have had burning mouth syndrome for about 10 years but I guess this is not part of the AN thing. My daughter found this site for me.
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leapyrtwins

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Re: Hereditary?
« Reply #10 on: July 09, 2011, 02:18:33 pm »
I'd definitely get tested for NF2.

Just my two cents worth,

Jan
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Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

GaleWynne

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Re: Hereditary?
« Reply #11 on: July 25, 2011, 07:51:12 pm »
Quote from: Phillip64 on July 08, 2011, 10:33:20 am
Wow, I just found out this week that I have AN in right ear (3mm) and only symptom (ringing) was in left ear.  Both my mother and older sister had AN and so the doctor said that was the only reason he was suggesting an MRI.  Sure is strange to have 3 in family.  I am currently just on the watch and wait (another MRI in 6 months.  I was also reading about burning mouth.  I have had burning mouth syndrome for about 10 years but I guess this is not part of the AN thing. My daughter found this site for me.

Phillip -

You and I are similar.  In April 2011, I was diagnosed with AN in left ear (only 2 mm) and my symptom was "whooshing" in right ear, which started in January 2011.  My younger sister also had an AN - hers was only 3MM in right ear, caused major balance issues - basically, she was disabled by it - and she had the middle fossa done - that was 10 years ago.  Since my diagnosis, we have now realized that I have had some minor balance symptoms these past few years, and I then suffered disequilibrium in June 2011 - I now am on a very low dose of non drowsy Dramamine to drive.  My June MRI, done in the 3T MRI machine, showed a 2MM AN...although I have to admit, both the neurosurgeon and the ENT (my sister's doctor) said that maybe, just maybe, I don't have an AN after all )?!)... maybe it's an inflammation of the nerve there causing my problem ... I have two radiologists reports saying AN and two doctors saying treat as watch and wait even though these same doctors say..maybe it's not an AN.  My sister's doctor think it's "statistically unlikely" I will go down the same road  my sister did...a small AN that disables me and results in surgery...but he did not say it was "impossible" either.

I don't think I have run into many other folks with the ring or the whoosh in the opposite ear.  I just had to comment.  (Hi Phylis! This is Gale..from the Gale and Felicia Sisters with AN at the conference, although now we don't know if I really have an AN...but I hope I can still post on this board while I am in limbo...my next MRI will be in 9 to 12 months!  Felicia still thinks I have one, and frankly, logically, I think I have one too...what else explains my wonky head?.....but I still am hopeful that maybe it's not).

Gale
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Sister 3MM surgically removed 11/2001.
Me - Tinnitus Jan 2011. MRI April 2011 almost 2MM AN.  Symptoms increased June 2011; MRI over 2MM AN July 2011. July 2012 MRI: AN now 2 MM which ties to symptom decline. July 2013 MRI: barely 2MM Aug 2015: STABLE Aug 2017: STABLE Oct 2019: STABLE!

BigSister

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Re: Hereditary?
« Reply #12 on: August 17, 2011, 11:25:40 am »
I was diagnosed in May 2008 with right side AN of  2.25 cm.  Only problem was slight loss of hearing in my right ear.
My sister had a hearing loss that predated mine by 15 years, and after I found my tumor, guess what?  She went
for an MRI and found a much smaller AN in her ear.
Both our doctors find this "curious" that 2 sisters have ANs, but not any interest in studying further.
Sorry, there is something ,somewhere on the genes!

We are both watch and wait, I just passed by 4th MRI and no change in 4 years.

April (BigSister)
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Martin Rigby

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Re: Hereditary?
« Reply #13 on: August 17, 2011, 06:45:15 pm »
Good discussion. I have been recently diagnosed with a 6mm AN left side.

Parents are fine, bust when discussing with my Aunties it seems there was a major incidience of deafness in the family in the prior generation (their aunties and uncles). My Dad's Mum's side of teh family

I am still investigating, but the story is they where reasonably deaf from mid 40's - 50's (guessing 30-40% down). Two of these people are still alive and aged 93 and 99. Obviously now very deaf and suffering from many other more serious issues. Grandma who is 93 now also has some facial paralysis and issues with her tongue. Could suggest an AN

Suspect 45 years ago deafness was consider a normal part of being aged 50 and people where dismissed from the doctor with little other thought

Regards
Martin

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Derek

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Re: Hereditary?
« Reply #14 on: August 18, 2011, 05:34:30 am »


etc...Suspect 45 years ago deafness was consider a normal part of being aged 50 and people where dismissed from the doctor with little other thought

Regards
Martin
[/quote]

Hi Martin...

Similar to my diagnosis..age 58, my GP insisted the diminished hearing on my right side (AN side) was down to the ageing process...how wrong was he!

Regards

Derek
« Last Edit: August 18, 2011, 05:39:33 am by Derek »
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Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.
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