ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: LB on June 13, 2011, 08:01:38 pm
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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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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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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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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.
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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Thanks so much for your recommendations. I'm checking everything out and appreciate your support.
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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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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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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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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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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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I'd definitely get tested for NF2.
Just my two cents worth,
Jan
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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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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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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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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
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Hi Derek
Are you the only person in your extended family with deafness?
Also curious what you attribute the shrinkage of your AN too, have you change your lifestyle in some way recently? I am believe that diet and carb intake may have some bearing on growth rates, I have recently dropped all processed food and suger?
Regards
Martin
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Hi Martin..
There is no history of any hearing related problems within my immediate or extended family.
The 'sticky' thread 'Top Tips For The 'Watch and Wait' Brigade!' which I commenced in 2007 contains a comprehensive account of the healthy diet and exercise regime that I adopted shortly after diagnosis almost 10years ago. I firmly believe that this, together with an ultra positive attitude that I was determined to be in control of the AN and not the other way around, has been instrumental for the reduction in size and present stability....and of course an element of good luck!
Regards
Derek