Recent Posts

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Facial Issues / Re: facial plastic & reconstructive surgeons
« Last post by JLR on Today at 04:25:32 pm »
Hi All, has anyone had any luck with NYU Langone for facial rehab.  I've tried acupuncture now I've been reading about facial rehab I.e. Massage at Langone. I think I'm going to call them. Thanks, Joan
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Microsurgical Options / Re: Friedman/Schwartz
« Last post by CHD63 on Today at 03:35:09 pm »
Several forum users have inquired about how to contact Drs. Rick Friedman and Marc Schwartz at the University of California San Diego.

The fastest way is to contact their patient navigator, Kris Siwek, via email or phone call:  ksiwek@ucsd.edu or 262-468-8393.  She will walk you through the entire process of a free consultation, with no obligation for treatment.  You have the option of uploading your MRI, which is free (Kris will tell you how to do this.) or mailing a CD of your MRI to their office:

UCSD Head and Neck Surgery
Attn Kris Siwek
9444 Medical Center Drive
ECOB 3rd Floor 016
La Jolla, CA 92037

After they have received your MRI, you will be called by one of the doctors and given their opinion at no charge.

Hope this helps.

Clarice
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Hi, I went to a tinnitus workshop and would like to share a few things that I had learned.  They had told me to avoid aspirin and tonic water, as it can make it worse. There were some other items as well but these were top of mind.   Also, it was explained to me that typically the sound you hear is the same..it is just a change of venue that seems to make it louder.  For example going to a concert then going into your car..it is only your perception that it is louder because you are now in a quieter environment.  A good example is when you wake up in the middle of the night and turn the light on...it takes a while for you to adjust...same as with the ringing.  This has helped me a lot, as I used to panic that it was getting worse...now i talk my way off the ledge knowing it is the same and not to worry.  I find having a fan on when I sleep helps me not to think about or hear it...background noise is your best friend.   I was diagnosed in April and today I had my MRI followup..fingers crossed it hasn't grown.

Hope this helps  :)
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Hearing Issues / Re: BICROS with bluetooth anyone?
« Last post by joyoreilly on Today at 12:52:48 pm »
I had my 1.7 acoustic neuroma tumor removed 9 weeks ago.  I have an appointment with my audiologist next week to talk about anything to help my hearing.  Heard about the hearing aids that help bring sound over to the deaf ear.  Anyone tried this or can recommend a brand of hearing aid that works.  Have no idea what cost is but my insurance will cover up to $2,500 -
Also wondering if having any type of hearing aid device has helped you be able to locate where sound is coming from.  If someone behind me calls my name I can't figure out from which direction they are calling me.

Also wondering if it really does improve enough to help your deaf side or if it makes things harder
I know I was taught your ear and eyes are married so I am also wondering if by helping the deaf to get some sound from the good ear will that also help balance.

Anyone with any input please reply

Thanks
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Hi, I am the co-leader of the Washington, DC support group!

I've compiled a few recommendations in the area from our support group:
- Julie Shein - Point Performance in Bethesda: http://www.pointperformance.comĀhttps://www.adventisthealthcare.com/services/rehabilitation/outpatient/balance-vestibular-program/#.Vwwur44pBSA
-MedStar National Rehabiliation Network: https://www.medstarnrh.org/our-services/vestibularbalance-rehabilitation/?_ga=2.124915150.572134867.1516114665-594392442.1516114665#q={}

Let me know if you have other questions, or would like to join our mailing list / attend our meetings, the next one is this weekend - Sat Jan 20th in DC!
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Microsurgical Options / Re: Friedman/Schwartz
« Last post by michellef08 on Today at 08:47:18 am »
They did my surgery back at House in 2013 as a team, and they definitely are the dream team! They preserved my hearing with Middle Fossa and I didn't have a single facial or balance issue at all! I'm so excited they are back together, now people don't have to choose between them!
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Physicians / Re: Dr. Marc Schwartz, formerly of House Clinic
« Last post by michellef08 on Today at 08:39:34 am »
Yea, here is the press release from UC San Diego:
https://health.ucsd.edu/news/releases/Pages/2017-11-15-15-renowned-surgeons-launch-acoustic-neuroma-program-at-uc-san-diego-health.aspx

Dr. Marc Schwartz and Dr. Rick Friedman have both moved to UC San Diego at the end of 2017. They did my surgery together at House back in 2013, and I called them the dream team!! They did the Middle Fossa approach and preserved my hearing, and I didn't have a single balance or facial issue!
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thank you both

indeed my tinnitus gets louder in am , it does fluctuate
in intensity

I shall try aspirin though

aspirin can cause the tinnitus to get worse
one guy told me to take tegretol, other told me to
take gabapentin,

perhaps if some cyberknife radiotherapist can let us know
if it is good idea to start treatment early inview of small radiation
dose versus waiting long time when tumour gets larger with more
radiation causing more hearing loss !

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Some people find relief from tinnitus with hearing aids that add noises which distract one from the tinnitus. That is my understanding. Tinnitus comes from the brain and not the ear, so if hearing is lost during surgery, tinnitus can remain or get worse. Perhaps others could chime in and share which devices they use with success.
success of hearing preservation with surgery will depend on many factors such as location and size of tumor, surgical approach and the experience of the surgeons.
Regardless of the size of the tumor it's possible to lose hearing with surgery, radiation or watch and wait. it's also possible to have hearing preservation with any size tumor, whether large or small.
It makes it difficult for patients to make decisions based on hearing. Many doctors advise not making decisions based on hearing, but rather, other factors.

Alan321
Your tumor sounds very different than most. Hopefully others with the same kind will respond.
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Physicians / Looking at Surgeons and Treatment facilities
« Last post by Citadel mom on January 15, 2018, 04:41:02 pm »
Diagnosed with a 3cm AN, know treatment option is Translab. based on size and already have significant loss of hearing with mass effect on brainstem and cerebellum. Already met with Dr. Rivas and Thompson at Vanderbilt, really liked both of them and facility, but concerned with distance (6 1/2 hour drive). Any body had surgery at Vanderbilt with these doctors and don't mind sharing their experience? Had an appointment already set for Duke, Dr. Zomorodi for 25th don't know if should meet with him too just because closer (3 1/2 hours). Any input on him and Duke would be appreciated too.
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