Recent Posts

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For those in the 'watch and wait' status / Re: diagnosed last week
« Last post by Sharky on August 20, 2019, 11:33:48 pm »
Hi jpark01 :-)

I was diagnosed end of May this year with a 7mm x 4mm AN. It was an incidental finding of sorts, because they were looking for an optic nerve tumor, but I had also just had a severe bout of vertigo that sent me to my primary care doc. It was interesting timing!

I was so so shocked and scared when I got the diagnosis. It was surreal. I'm coming up now on three months since diagnosis and I can say that, thse days, I feel really pretty chilled out about it all. I had to work through some serious terror, anger, disbelief and, of course, obsessive researching. My symptoms are very mild--ringing in my ear, that "full" feeling in my ear, and some subtle balance issues that typically show up when I'm over-tired and are noticeable mostly only to me. I thought I was having fatigue from the tumor, but that turned out to be low iron, vitamin D, and low B-12. Supplements and a much-improved diet have taken care of that.

At my initial visit, the ENT here in my city said that, because the tumor is small, and I am young (55), he wanted to W&W for six months and then discuss treatment options. However, I've decided to go out of state for treatment, if and when the time comes, and these doctors will not even do surgeries on small ANs. The stance I am taking is that I want to hold off on any treatment for as long as I reasonably can, because of the complications that can arise with surgery or radiation. It's such a personal thing, I know. This is just my story so far, and I hope something in it is helpful to you. Take care. :-)
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Thnak you so much, Bee123 and Sheryl! I'm just now seeing your posts. They give me hope.

Now that I'm past the initial shock, fear, avid researching, and obsessive forum-reading, I've pretty much accepted that I have this thing, and I'm not inclined to let it ruin my day. My symptoms are very mild and, like everyone, I hope they stay that way. If things start going downhill, I know that I'll travel to Vanderbilt for surgery, and then take things from there.
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Pre-Treatment Options / Re: 30 days post diagnosis - unsure what to do
« Last post by Cheryl R on August 20, 2019, 11:03:01 pm »
You should be able to fly that long post op as many go across the US for surgery and are flying home in 2 weeks.       
Every dr has their own protocol of what they use to fix the skull for the closing.      I have been here for a long time and never heard of anyone having an issue with flying and TSA issues.        I also go to same university hospital as Greece Lover and have the same bone flap.
  How much your brain has compensated already plays a part in how your balance will be post op.         I was never dizzy.  Found I did have some balance issues when walked outside.    I never used an assistive device.       Some do.       You will know more after surgery and PT will evaluate you also.   Some people do take vestibular rehab but  I never did and just made sure to walk frequently.        I was back to work as a hospital nurse in 2 months.
                      I hope all goes well for you.                  Cheryl R
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Physicians / Re: Looking for experienced doctors in Florida
« Last post by Maria Odete on August 20, 2019, 08:42:44 pm »
Hello,

I'm adding the following comment to my penultimate post on this thread : ... I was very determined during my hospital admission not to see this Neurotologist again , who performed my Acoustic Neuroma surgery in 1992. Shortly after my discharge from the hospital, I changed my mind and decided to keep seeing him as long as necessary and teach him lessons in humility during consultations with him. I hope he reads this.

Maria Odete

Surgical Team: Dr. Fraser Noel,Neurotologist, Victoria, B.C., Canada and Dr. Michael Boyd, Neurosurgeon, Vancouver, B.C., Canada
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Headaches / Re: Medicines for headache
« Last post by Stephanie on August 20, 2019, 08:25:03 pm »
Hi GB,
I am 9 years post op and still have this problem. I take a lot of Advil.
I tried Tylenol, Gabapentin, and so many more medications that didn't help.
I tend to get these types of headaches (swelling and pulling feeling) from changes in barometric pressure, elevation changes, and if I sleep flat (without a wedge pillow).
In addition to the medications, I have tried nerve block injections, botox, and lymph drainage massage.
The things that work best for me are the lymph drainage massage and Advil. I can't recommend the lymph drainage message enough, the focus of the massage is the head, neck, and spine. I thought it was a joke the first time (you barely feel anything) but it was the fastest and most dramatic relief I have had yet.
The massages were a part of my physical therapy, I went 3 times a week for a few months. I don't have access to therapy anymore so I still get the headaches. My therapist showed my husband the technique so he helps me with it when he can. I have also learned a DIY version that I do often but neither are effective as the therapy session with a trained therapist, this is why I still take a lot of Advil. The Advil helps to keep the swelling down.
I hope you find a treatment that works for you.
Stephanie
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For those in the 'watch and wait' status / Re: New study regarding AN growth
« Last post by ANSydney on August 20, 2019, 05:10:42 pm »
Thanks for that very recent article. The findings surprise me as they are not consistent with other studies. Hopefully this study initiates debate among the profession. And I bet it will.

The study findings may be academic since what really matters is, is it still growing in your case. Waiting for 2 followup MRIs 6 months apart may prevent surgery in some cases since "33% were stable". If it growing rapidly and threatening to exceed 2 cm diameter, you probably want to act.

My examination of studies on what percentage of vestibular schwannoma tumors grow is at https://www.anausa.org/smf/index.php?topic=23404.msg979773728#msg979773728 . My summary of the papers is that about 13% of tumors grow more than 2 mm.
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AN Issues / Re: What's inside the IAC ? and contrast.
« Last post by ANSydney on August 20, 2019, 04:26:46 pm »
I just can't play Dr. with this thing, and wouldn't encourage others to play Dr. either.  Radiologists and surgeons are super smart, they spend years and years and hundreds of thousands of dollars learning how to do it right.  I leave that sort of detail to them - reading MRIs is certainly one of many areas where I won't second-guess a Dr...especially 4 of them.
I agree don't play doctor. However, don't be afraid to do your own research and have a peek yourself. The need, or not the need, for contrast agent is well documented.
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AN Issues / Re: What's inside the IAC ? and contrast.
« Last post by golfguy49 on August 20, 2019, 01:17:35 pm »
I just can't play Dr. with this thing, and wouldn't encourage others to play Dr. either.  Radiologists and surgeons are super smart, they spend years and years and hundreds of thousands of dollars learning how to do it right.  I leave that sort of detail to them - reading MRIs is certainly one of many areas where I won't second-guess a Dr...especially 4 of them.
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For those in the 'watch and wait' status / New study regarding AN growth
« Last post by notaclone13 on August 20, 2019, 10:54:33 am »
Hot off the presses,

J Neurosurg. 2019 Aug 2:1-7. doi: 10.3171/2019.5.JNS1923. [Epub ahead of print]
Volumetric growth rates of untreated vestibular schwannomas.
Schnurman Z1, Nakamura A1, McQuinn MW1, Golfinos JG1, Roland JT2, Kondziolka D1.

Abstract
OBJECTIVE:
There remains a large discrepancy among surgeons in expectations of vestibular schwannoma (VS) growth. The anticipated growth rate of a VS and its potential clinical impact are important factors when deciding whether to observe the lesion over time or to intervene. Previous studies of VS natural growth remain limited, mostly confined to linear measurements, often without high-resolution, thin-sequence imaging. The present study comprehensively assessed natural tumor growth rates using volumetric measurements.
METHODS:
Between 2012 and 2018, 212 treatment-naïve patients diagnosed with a unilateral VS were evaluated. A total of 699 MR images were assessed, with a range of 2-11 MR images per patient. All MR images preceded any intervention, with patients subsequently being observed through completion of data analysis (36%) or treated with stereotactic radiosurgery (32%) or microsurgical resection (32%). To determine precise tumor volumes, the tumor area was outlined on every slice, and the products of the area and slice thickness were summed (99% of scans were ≤ 1-mm slice thickness). A multilevel model with random effects was used to assess the mean volume change over time. Each tumor was categorized as one of the following: growing (volume increase by more than 20% per year), fast growing (volume increase by more than 100% per year), stable (volume change between 20% decrease and 20% increase per year), and shrinking (volume decrease by more than 20% per year).
RESULTS:
The mean VS volumetric growth rate was 33.5% per year (95% CI 26.9%-40.5%, p < 0.001). When assessing the frequencies of individual tumor annual growth rates, 66% demonstrated growth (30% fast growing), 33% were stable, and 1% exhibited shrinking over an average interval of 25 months. Larger tumors were associated with increased absolute growth, but there was no relationship between tumor size and proportional growth rate. There was also no relationship between patient age and tumor growth rate.
CONCLUSIONS:
This study comprehensively assessed VS volumetric growth rates using high-resolution images and was conducted in a large and diverse patient sample. The majority of the tumors exhibited growth, with about one-third growing at a rate of 100% per year. These findings may contribute to a consensus understanding of tumor behavior and inform clinical decisions regarding whether to intervene or observe.
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Radiation / Radiosurgery / Re: My personal gamma knife experience 1-24-13
« Last post by notaclone13 on August 20, 2019, 10:40:48 am »
Robin thanks so much for posting this update. So encouraging to hear about good outcomes. Even more impressive is your dedication to fitness. You have inspired me to re- commit to my own weight loss and fitness goals despite being over 65.
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