ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: GattoMarte on July 14, 2016, 11:44:33 am
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Greetings All. Just found this Site today after my wife yesterday was found to have a 5x10x5mm AN affecting her left ear hearing due to AN covering nerve. It is not touching her brain at this time. We are in the process of setting up appointment with Keck Medicine of USC and I will try to update you all with my wife's progress. AN specialist will determine if we 'watch and wait' or Gamma Knife. Wish Good Health and Happiness to all Good Folks here :-)
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Sorry your wife had to join this club. I wish her well on her AN journey. Take care.
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Sorry your wife had to join this club. I wish her well on her AN journey. Take care.
Thank you. We are just glad that the AN was found sooner rather than later. Our family doctor who we have been seeing the last 40 years, has dragged this out for the last nine months saying it was fluid in the ear and kept assuring us it would go away. Very disappointed in his prognosis. We finally got fed up and found an ENT specialist who said he saw no fluid and said to get the MRI.
I've already read through a lot of useful threads here and would like to thank those responsible for this site. The information is extremely helpful. :)
Personally, I had triple bypass heart surgery back in early 2013 so we are no strangers to medical journey's. ;)
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Heard from Keck today. After their review of the MRI images they advise to W&W. We will make an appointment to go and talk with them as soon as we can, but this is not an emergency situation. They want a second MRI in January 2017. So, I will keep this post updated as best as I can. My wife needs to see about getting a hearing aid (aids?).
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GattoMarte
If you wife goes for hearing aids be sure they know for what purpose (that she has A.N.)......the nerve isn't functioning properly in that ear and the aid(s) required aren't likely just the usual ones
Kathleen
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Gattomarte-
I was also treated for fluid on the ears but my PCP did make the ENT referral when my symptoms didn't get any better. My tumor is 1.5cm and I have just elected to have surgery. It isn't scheduled yet, but I will hopefully get the call soon.
Good luck to your wife!
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Hi Gatto Marte,
You and your wife might be interested in these Questions for the Doctors- you can print them out and take them to her next appointment. There is also a Questions for Yourself list. https://www.anausa.org/pretreatment/questions-for-your-physician
Best wishes
Allison Feldman, CEO, ANA
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Thank You All Very Much for the helpful information. My job requires me to travel a bit this time of year so it's hard to find the time to check back here.
We are going to Keck tomorrow morning for our first sit down talk with them.
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Update: We talked with two wonderful Keck doctors last Wednesday. My wife has not developed any other symptoms other than the original partial hearing loss per testing and interview results. So, we now wait for her next MRI results in January to best determine the next step.
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UPDATE: February 8, 2017
Today my wife and I went to Keck Medical Center of USC to be advised of the results my my wife's second MRI, the first being done six months ago. We were told the AN has remained the same and not grown, so, the next step is to schedule yearly MRI's to keep an eye on it. If any dizziness, numbness or facial tics appear we are to immediately contact Keck to take the necessary steps.
So, we are thanking God and all Good People at this time. I will keep this thread updated as time moves along.
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Congratulations to you and your wife. That's a great result.
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Congratulations to you and your wife. That's a great result.
Thank You very much. Best Wishes to you and all here.
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UPDATE:
I last posted back in February, 2017, so I thought I'd keep this thread going with an update.
As of today, June 26, 2017 my wife's AN condition has been stable. There have been a few occasional consecutive days of ringing in her AN ear but that's about it. Her hearing aid has been a huge help in making her and my life easier.
Wish all the best to all you good folks here.
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Congratulations to your wife on one year of watch and wait.
You're working with a great team over there.
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Congratulations to your wife on one year of watch and wait.
You're working with a great team over there.
Thank You. Yes, Keck/USC physicians and staff are awesome.
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Hi,
I am a 78 year old female, diagnosed in March with a AN . Had an MRI, the size on my heathtrak result was 10x4x4mm
I am in watch and wait. My second MRI is scheduled for Aug. 3rd.. My doctor is Barry Hirsh. I dont know where to go from here. I got the impression that age has a lot to do with the treatment. As he said old brains dont like to be lifted. Depending on the results and his suggestion for the future i may need to seek a second opinion. I saw a Dr. lunsford on an AN site. He is also part of UPMC. I would appreciate any advice. Thank you.
PS. MY symptoms were and still are, tintinis, fullness and hearing loss. I thought I might have wax in my ear when I made the appt. to see Dr. Hirsh. totally not prepare for that diagnosis.
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Welcome to the club that nobody wants to be a member of, but everyone is friendly. At age 78 years with a 1.0x0.4x0.4 cm tumor and only hearing loss, tinnitus and fullness, you're best bet is to get an MRI every 6 months and see if it growing. How long have you had the symptoms?
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Second MRI on thursday, August 3rd.. My symptoms started last winter tintinis in left ear and fullness, like water and cant get it out. tThought it might be wax build up. Had my first MRI on Feb. 28th. Diagnosed on march 5th. On wait and watch.I have a hearing loss sometimes I feel a little strange. Very nervous about the upcoming MRI.
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Best wishes with your MRI on August 3. We'd be all interested in next MRI result. Remember the majority of acoustic neuromas don't grow (and even less need treatment).
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Hi Geminigirl. Best wishes from me as well on your MRI on August 3.
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Geminigirl, how did your MRI in August go?
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**** UPDATE **** January 12, 2018 ****
Wifey had her third MRI on January 2. We sent the Image CD to Keck and heard from them yesterday. The doctor said that the Acoustic Neuroma was basically "stable" having grown about 1 millimeter (1/32") in one dimension only since July 2016.
We will be seeing the doctor in the office end of February, so, I'll update here after that.
Hope you all are doing OK and getting through these things well.
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Hi GattoMarte
Glad no further growth. I was just diagnosed Dec 2016. Have had 2 MRIs and no growth. Have very little hearing in left ear and only 12% word recognition. Also have tinnitus in AN ear. Glad good news for your wife. I amon Watch and Wait also.
Just wondering what type of hearing aid she has. I am going to try one out next week but clinic suggested one for unaffected ear as there is slight hearing loss in that ear and they thought extra hesring would help overall. May possibly try out the receiver in left, going to right to help "hearing" from that side. Will see if helps at all. If didn't have AN, right ear wouldn't bebad enough to waarant a hearing aid.
Any thoughts or advice re hearing aids. Anyone?
Thank you for any response receivex.
Nova Scotia, Canada - Watch and Wait
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Hi GattoMarte
Glad no further growth. I was just diagnosed Dec 2016. Have had 2 MRIs and no growth. Have very little hearing in left ear and only 12% word recognition. Also have tinnitus in AN ear. Glad good news for your wife. I amon Watch and Wait also.
Just wondering what type of hearing aid she has. I am going to try one out next week but clinic suggested one for unaffected ear as there is slight hearing loss in that ear and they thought extra hesring would help overall. May possibly try out the receiver in left, going to right to help "hearing" from that side. Will see if helps at all. If didn't have AN, right ear wouldn't bebad enough to waarant a hearing aid.
Any thoughts or advice re hearing aids. Anyone?
Thank you for any response receivex.
Nova Scotia, Canada - Watch and Wait
Hi Joan. Glad the AN is showing no growth. As far as her hearing aid, we went to a local Hearing Aid Center for assistance. This Center did the original hearing test back in 2015 at the hospital.
Her single hearing aid was $1400.00US. This includes lifetime service and adjustment at the center. She is wearing in her good ear and it has been a very big help in improving her hearing. The hearing aid itself has a little round battery and a clear plastic dome to cover the speaker. Honestly, a cheaper aid might work just as well, I really don't know, since we had a little extra money we opted for one that is a bit higher priced but includes good service benefits.
If I remember correctly she has about 50% hearing loss in her good ear and 70% loss in the AN ear. A second hearing aid for the AN ear is an option that we may use in the future if necessary. So far the single aid in her good ear seems to be doing a good enough job.
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****UPDATE****March 6, 2018****
We went to Keck/USC here in Los Angeles for a sit down with our doctor and all looks to be good at this time. A hearing test will be done next December for latest results.
So, unless my wife starts having bouts of dizziness, tinnitis or anything else out of the ordinary, we will have her fourth MRI done next January.
Good Luck all!!!!
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Thanks so much for the updates. They are greatly appreciated by others in AN limbo, also known as Watch and Wait. Glad your wife has not had significant growth and has minimal symptoms. Hope she continues to have this kind of result. It gives the rest of us hope.
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Thanks so much for the updates. They are greatly appreciated by others in AN limbo, also known as Watch and Wait. Glad your wife has not had significant growth and has minimal symptoms. Hope she continues to have this kind of result. It gives the rest of us hope.
Glad to be of help. Best Wishes to All of Us.
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Hi, GattoMarte:
I am a Newbie (3 mos now diagnosed with 9x5x5mm left ear).
After numerous Dr consultations and tests, I have also decided to “W&W”.
I wanted to share these two very enlightening and informative articles that you and your wife may find very educational.
I have decided to take daily baby aspirin (after discussing with my dr) while in “W&W” mode.
We are so fortunate to have the ANA for moral support and information. It has helped me tremendously.
I wish you and your wife the very best on your AN journey.
~Kind Regards to all
https://www.tinnitusformula.com/library/aspirin-slows-acoustic-neuroma-growth/
https://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma/treatment.html
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Hi, GattoMarte:
I am a Newbie (3 mos now diagnosed with 9x5x5mm left ear).
After numerous Dr consultations and tests, I have also decided to “W&W”.
I wanted to share these two very enlightening and informative articles that you and your wife may find very educational.
I have decided to take daily baby aspirin (after discussing with my dr) while in “W&W” mode.
We are so fortunate to have the ANA for moral support and information. It has helped me tremendously.
I wish you and your wife the very best on your AN journey.
~Kind Regards to all
https://www.tinnitusformula.com/library/aspirin-slows-acoustic-neuroma-growth/
https://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma/treatment.html
Thank You. Best Wishes to All of Us here at ANA.
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***UPDATE - February 25, 2019***
Wifey had 4th MRI about a month ago. Our surgeon at Keck USC reviewed last Friday. Slight growth of about 1mm of all three dimensions but surgeon's review with us said this is normal and not to be concerned at this time. So, 5th MRI will be done end of this year unless, of course, she develops ringing in ear, loss of balance, further loss of hearing.
So, hope this information helps. Best wishes to all you good people.
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***UPDATE - December 26, 2019***
AS of November, 2019, my wife's hearing seemed to be a little bit worse. So, we scheduled the next MRI.
MRI results from early December, 2019 showed the AN did increase some from 11mm x 6mm a year ago to a current size of 11mm x 8mm; this information is from our local medical center ENT doctor. We have and appointment with one of the AN Specialists at Keck/USC Los Angeles in February to get a second opinion and will update this thread at that time.
Hope you all are well and finding good answers and results :) :) :) :)
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Good luck with everything!
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Thank You!!!!
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****UPDATE**** February 24, 2020****
We saw our specialist at Keck USC last Friday, February 21, 2020. Still no dizziness. Slight loss of hearing. Slight growth of tumor of 1mm in two of three dimensions. Overall, no significant changes. Will continue to have one MRI done per year and review MRI results with specialist. Will call doctor immediately if any significant changes occur.
Good Luck to all of us!!!!!!!!
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***UPDATE - December 26, 2020***
Greetings and Merry Christmas. Here is my wife's latest update as of today, December 25, 2020:
From the Final Radiology Report, the lesion is now 12 x 6mm which "appears stable". Everything is "unremarkable".
From our videoconference with our otolaryngologist: since she is not having any dizziness, severe degradation of hearing nor any other symptoms we are going to continue our once a year MRI with follow up meetings with him.
We will be seeing our USC Keck Medicine MD, PhD, board certified neurotologist specialist in February to go over the MRI images.
That's all for now. Hope this dreadful year is gone for another century or so. I will post results of our February meeting at that time.
Best Wishes and prayers to all of you good people.
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****UPDATE**** February 11, 2021
Talked with our AN Specialist at Keck USC, Los Angeles, yesterday. She went over the Image CD and advised us that my wife's AN is still stable (this is the fifth year we have been dealing with this). Growth in all three dimensions is minimal, she does not have any balance issues nor major loss of hearing. She does get some occasional noise in her AN ear but it is intermittent and not too invasive. So, we are going to continue our routine and work and pray for continued good health.
Good Luck and Prayers to all you Good People!!!!
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That is awesome!! Glad to know that your wife is doing well! Thanks for the updates. :)
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This is encouraging. Thank you for posting :)
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That is awesome!! Glad to know that your wife is doing well! Thanks for the updates. :)
Thank You as well!!!!
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This is encouraging. Thank you for posting :)
Thank You too :-)
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****UPDATE****February 2, 2022****
Greetings everyone. My wife's seventh MRI was done in December, 2021 and showed no growth. Our office appointment with our Keck USC doctor showed her hearing has remained stable with no further loss. The doctor recommended having the MRI done every two years unless symptoms appear.
So, that's the latest. Hope all you good people are doing OK.
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Thank you for your continual updates. They are very informative.
Best wishes for you and your wife in the future!
Don
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Thank you for your continual updates. They are very informative.
Best wishes for you and your wife in the future!
Don
Thank You Don!
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****UPDATE**** December 27, 2022
Since my wife has not had any issues relating to the acoustic neuroma this year we decided to skip the annual MRI this year (2022). So, the plan for next year is to continue to watch and wait. If anything unusual occurs we will contact our doctor and, if necessary, schedule an MRI. Good Luck to all you good people.
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That really is great news! Thank you for encouraging the rest of us with it!
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That really is great news! Thank you for encouraging the rest of us with it!
:) :) :) :)