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Post-Treatment / Re: Acoustic Neuroma and concussion
« Last post by ANSydney on June 19, 2018, 04:58:35 pm »
My head impact was seven years ago (Jun 15 2011). My symptom of hearing loss was 2.5 years after the impact (Jan 16 2014). My first (and diagnostic MRI) was 5.2 years after impact (August 2016), which was 1.8 years ago.

Google gompertzian curve of tumor growth to get an idea of the growth profile. It takes off and then levels off. None of them have specific timing, but perhaps tumors get big enough after only one year to start causing symptoms. How big was your tumor at diagnosis and surgery?
Radiation / Radiosurgery / Re: CyberKnife Journey at Stanford
« Last post by juliawilson on June 19, 2018, 04:39:55 pm »
I've enjoyed reading about your journey. I did CyberKnife with Dr. Chang in March, 2017. Other than about a week of headaches--not bad but noticeable--about four months after treatment, I've had no issues and no need for post-treatment steroids. I know it's easier said than done, but try to settle in for the long term. Or, to use your excellent horse analogy, we have a long gallop ahead of us. Enjoy it!
In answer to your  June 16 query: Yes, the CyberKnife treatment I received was done over three days--about 20 minutes each day.
Microsurgical Options / Re: Length of Recovery & Traveling Home
« Last post by robertweeks on June 19, 2018, 03:58:56 pm »
I also had surgery at House Clinic, three years ago in 2015.  I had retrosigmoid on the right side.  I was in the hospital for five days and then spent 5 days staying in their guest facility next door.  There was no risk in flying after the surgery, but they wanted me to stay close for about ten days to monitor for any complications.   HTH.

I can understand the concern.  I also had a right side AN about the same size as yours.  Based on the MRI, the surgeon recommended translab in order to save the hearing.  I was told I had probably about 60% chance to save the hearing. 

I flew to L.A. for the surgery and went through a battery of tests the day before the surgery.  Through the day of testing, they dropped my chance of retaining hearing to about 40% to 50%.  At the end of the day of testing they suddenly said, "You haven't had such and such test.  You have to have that test right away!" So they bustled me off for a test with the audiologist.  I'm sorry, I don't remember the name of the test, but it had to do with measuring the signal from the auditory nerve across the brain.  The result of that test, at about 7pm the evening before I was supposed to have surgery at 8am the next morning, was that they were not picking up any kind of signal from the auditory nerve across the brain.  This, they said, would make it virtually impossible to preserve the hearing, they dropped the chances to less than ten percent, and switched to recommending retrosigmoid.  Following the surgery they said it was a very good thing that they had switched to retrosigmoid because the AN tumor, which usually adheres to the surface of the nerve, in my case had intruded down into the body of the nerve.  This was why there was no signal and they said made the chance of saving the hearing at 0%.  They said they would not have wanted to try to deal with that tumor in a translab surgery at all. 

So I have lost the hearing in the right ear.  I do have some facial paralysis, but it is not severe.  It is unpleasant, but it is not really a problem.  But, as a mom of two toddlers, I would put a higher price on preserving the hearing, if possible.  One thing I have found that I wasn't prepared for, after losing hearing on one side, is that my ability to triangulate on noises is slim to none.  I can hear my cell phone ringing in the house, but I can't tell where the sound is coming from. 

I know this may sound discouraging.  Certainly, though I was not thrilled with the communication skills of my surgeons, the care and treatment I received was excellent in all respects otherwise.  So, I would say, make sure you get all the necessary tests done ahead of time if at all possible and, like the earlier reply, trust your gut.  And, if you aren't sure, keep getting additional opinions and keep asking questions.    Don't let yourself be crowded into a choice that doesn't feel right.  Generally speaking there is no urgency to having the surgery.  My AN symptoms were already improving somewhat by the time of my surgery, after having been deteriorating over the prior year and a half. 

Post-Treatment / Re: Acoustic Neuroma and concussion
« Last post by robertweeks on June 19, 2018, 03:20:47 pm »
I would say that certainly sounds suspicious, but, in my case, I've been told that the neuroma takes a long time to grow to the point where it becomes large enough to interfere with hearing and balance.  My concussion was only 2 1/2 years prior to my surgery and only one year prior to onset of symptoms of the NA, so I doubt it would be related, unless I am mistaken about how quick the tumor may grow. 
They numb the pin sights with a numbing paste then once that takes effect they give you a shot of novacain in each area where the pins go.  You really won't feel a thing regardless of any anxiety drugs.  I don't remember being sedated in any way but, maybe  I didn't notice if they did.
For those in the 'watch and wait' status / Re: Intracanalicular ANs poll
« Last post by Cityview on June 19, 2018, 02:39:23 pm »
I think all the imaging that is available is a blessing and a curse. On one hand it gives a person the opportunity to address a problem early. On the other hand it's more difficult to know what to do about it. There's a reason why a lot of the studies start with an opening statement such as "the management of small vestibular schwannomas is controversial".
Other diseases are now being managed differently because of small, incidental findings. For example, the ATA has changed the guidelines and thyroid nodules smaller than 1cm are not recommended for biopsy anymore. Also, other small lesions are now sometimes watched instead of being immediately, aggressively treated.

It's always good to know about a potential problem than not, but there are consequences to having all this technology.
Post-Treatment / sunken surgery site
« Last post by marvin65 on June 19, 2018, 02:06:14 pm »
Hello everyone,  did anyone observe that the surgery site sunk a bit.  It is a bit lower than the surrounding area.  Although I feel no pain.
I am almost 8 months post translab.  Initially it was not that way. I just notice it these couple of months. 
Could that fat that was used shrunk a bit ? Has been wondering  these for sometime.
Eye Issues / wet eye
« Last post by marvin65 on June 19, 2018, 01:31:47 pm »
Hello everyone, I am almost 8 months post translab. In the first 2 months after surgery, I have no tear on my AN eye side. I notice on 3rd month. I started to have wet eye on AN side.  I thought that was a good sign,  But now I learn later from reading and observation that the eye overproduced tear and under produced saliva.  Am I right ? Will that be the long term case now or will it still change ?   Does it also mean that my dry eye is solved?  Its no longer dry ?
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