Recent Posts

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Facial Issues / Re: selective neurolysis
« Last post by Jackysue on July 07, 2018, 11:29:20 pm »
How long was your wait for a consultation?  Is he booked up for a long time?
Radiation / Radiosurgery / Re: CyberKnife Journey at Stanford
« Last post by Gtmochi on July 06, 2018, 07:33:41 pm »
Thanks, Freelander! Happy Independence Day to you, too!  I am glad Dr. Chang and Dr. Hancock's nurses were so responsive, too! All's been well after my little incident, so fingers crossed!  ;D
Diagnosed Nov17 with 3x4mm lesion. Just had 3rd MRI with no growth. Did you get contrast with the T3 MRI. All MRI’s with contrast in last 7 months and am really not a fan. Doctor says have to have contrast to see tumor that small. Glad to here you have had no growth in 7 yrs. Take care
For those in the 'watch and wait' status / Re: Intracanalicular ANs poll
« Last post by kestes on July 06, 2018, 10:16:06 am »
Hi notaclone.  your symptoms, etc. before diagnosis absolutely identical to mine.  I kept feeling off for about 2 years and if I had not had an "explosion" in my ear I still may not know about it. by explosion I mean it was a screeching noise that happened instantly one day, I had to stop and grab my ear and thought what in the world. No pain at all.  then  Immediately after tinnitus and full feeling in ear started.  Thought it was sinus infection, zpak, and rounds of steroids did not help it so went to ENT who after several tests found it. 

The two hearing plugs I use are Hearos from the Music store or you can get on AMazon and Macks brand from the drug store.  They are incredible so far and I have 4 pairs so I can carry them constantly!  My next mri will be august 16 and will just see what is going on at that time.

I have already had the ABR and VNG tests which help determine how your balance is and how your hearing is being affected.  At first the doctors were recommending Middle Fossa to save hearing but with the results of these tests, they think the surgery would only be 50% or less since it is located deep in the IAC. 

Docs have recommended waiting, getting the 6 month mri and if little to no growth then just continuing to wait.  Knowing I still may lose my hearing, but surgery or GK would result in hearing loss most likely anyway, so I am perfectly fine waiting and going on with life and enjoying every second! 
AN Community / Re: Newly diagnose with AN
« Last post by sg_way on July 05, 2018, 06:57:17 pm »
Hi Dluna,

I'm a newly diagnose (23mm) and from LA too, do you mind sharing which doctor you decided to go with?

Radiation / Radiosurgery / valley hospital or columbia presb
« Last post by rrandy on July 05, 2018, 03:13:25 pm »
Using Dr. Sisti from Columbia Presbyterian
 for upcoming gamma knife treatment.
He uses Columbia's radiology department with Dr. Wang and Valley Hospital with various radiologists.
I've had consultations at both places. Valley is more user friendly and he has only good things to say but I am feeling like maybe I should have the Columbia name behind the treatment.
Wondering if anyone here has any experience with either.


Headaches / Re: Suggestions for Headaches
« Last post by WayneM on July 05, 2018, 12:19:57 pm »
I second the healthy diet suggestion. It also made the world of difference in my case as well.
For those in the 'watch and wait' status / Re: Intracanalicular ANs poll
« Last post by notaclone13 on July 05, 2018, 10:57:56 am »
Hi kestes, welcome to the IAC club.  My 6 month post diagnosis MRI will be in a couple of weeks.  I went to the ENT 6 months ago because I was having occasional, positional pulsatory tinnitus in my right ear. I did not notice any hearing loss, but they found some when they tested.  I had notice occasional bouts of dizziness, and imbalance which I attributed to a different health issue. I had felt off kilter (literally) for about a year but thought it was just due to some work-related stress. At any rate, can you elaborate on what type of music grade ear plugs you bought? I now have almost constant screeching tinnitus in my AN ear, some days worse than others.  I downloaded the free Widex tinnitus app on my iphone and that helps on the bad days.  However, noise seems to aggravate the tinnitus.  I bought some foam ear plugs at Walmart, but they don't stay in place and frankly, a scrunched up cotton ball works better.   So I am curious as to what type of ear plugs you bought that actually work. Thanks
For those in the 'watch and wait' status / Re: Intracanalicular ANs poll
« Last post by kestes on July 05, 2018, 10:13:28 am »
Hi I have a 12X5X5 IAC right ear.

symptoms:  high pitch tinnitus (very tolerable), balance issues and fatigue.

Diagnosed Feb 2018 and will have another MRI Aug 16.  No treatment option yet as no need to until we can get a read on what the tumor is actually doing.  I ride bikes, hike, run, dance, etc.  I don't let the tumor stop me.  I also am taking baby aspiring 2 times daily just to see and I also have adopted a keto lifestyle.  No idea if any of these will affect anything but it sure wont hurt! 

I have found music grade ear plugs are fantastic in loud places (went to a local music store and also purchased some at Rite Aid) I have several pairs around now.  Went to Nashville and hit all the places with music and not a single problem.  Invest in the heavy duty ear plugs and I think it will help tremendously! 
Inquiries / Re: MRI next week...Please help...
« Last post by notaclone13 on July 05, 2018, 09:28:47 am »
Sved, it is human nature to jump to the worse possible conclusion when faced with a possible health issue. I know I certainly have. But people lose hearing for a multitude of reasons, most of which have nothing to do with an acoustic neuroma, which is a relatively rare condition.  So until you know for sure, don’t borrow trouble. Try to relax and don’t think the worse at this point. You have no other symptoms of an acoustic neuroma, such as dizziness and imbalance. As acoustic neuromas are slow growing benign tumors, even if ignored for a couple of years, it would not be likely that the tumor has grown much even if you do have one. So please don’t worry at this point, especially to the point of giving yourself panic attacks. For the time being, think positive.
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