Author Topic: Shaky but not shaken  (Read 3482 times)

Skebenga

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Shaky but not shaken
« on: June 22, 2017, 02:58:32 pm »
Hello

I'm a freshly diagnosed AN sufferer, if that's the correct phrase? I'd love some input to help put some of my concerns to rest, if possible.

I started with a blocked left ear that would not clear even with the valsalva manoeuvre. Hearing seemed dull and I favoured the right ear when trying to hear something. A month later I had a cold and my world turned upside down. Any movement caused head spins and vertigo. I was trying to study and it felt like my head was filled with syrup. Tinnitus at a high pitch started. It took three times longer than normal to get through my notes. When the cold passed, the vertigo eased, but the fullness and tinnitus remained with occasional dizzy spells. I felt unsteady as if I'd been drinking. Not drunk, just two drinks too many. That's been constant for months now. I've had 4 attacks of vertigo in that time as well.

To cut a long story short, I've done a battery of tests, most normal, except for the Ecochg which was high. Initial tentative diagnosis was possible Menieres. Then I went to see a Neuro otologist who asked for an MRI.

So now, 6 months into this unsteady journey, they've found a 8x5mm AN on my left side. It's still small and the Neurootologist wants me to see a neurosurgeon to discuss options. I'd like to know what to look out for. He is suggesting Gamma Knife would be my best option while it is still small and before I suffer any permanent damage. I have a small amount of hearing loss at this stage and occasional facial twitches.

I am a professional pilot and obviously this has a serious impact on my job. I haven't been able to fly for 6 months. I'd like to know if there is anyone in a similar position and whether I have any chance of getting my pilots medical back.

I want to be realistic and I don't want to build false hope, so please don't feel you have to spare my feelings. Give me the facts please.

Thanks in advance from this dizzy blonde. Not drunk, I promise!





Symptoms began Dec ‘16
MRI Jun ‘17 8x5 mm AN
MRI Nov ‘17 11x6 mm
Watch and wait
MRI Nov ‘18 22x13 mm
Cyberknife in Feb ‘19

rupert

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Re: Shaky but not shaken
« Reply #1 on: June 22, 2017, 04:00:42 pm »
   Sometimes these things can cause much problems even when they are small. I know that I had some very bad vertigo at several stages almost 10 years before my diagnosis, I assume when it was very small and is first starting to affect the nerves.  That went away mostly after time and I was eventually diagnoses with a 2.2 x 2.6 CM AN.
    These things are growing on the balance and hearing nerves so to give it to you straight, your hearing will probably only get worse.  Have you had hearing tests?  Balance can be hit or miss or frequent or spotty and can change a lot one way or another over time.  Sorry there is nothing concrete there for info but,  symptoms along with results of treatment are very much individual and no one can predict what will or will not be.
    There is some better news in that being small,  you have all options of treatment available to you. It is always considered good advice here to seek out doctors that specialize in treating  AN's. More experience usually equals better outcomes or chances thereof. It is a good idea to get several opinions from doctors and of the several treatment options.  Again, seek out the best.
    My doctors told me there wasn't much I couldn't do after treatment so,  good luck to you.

Zan

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Re: Shaky but not shaken
« Reply #2 on: June 22, 2017, 04:54:11 pm »
Hello
I am new here too.
I am sure you are anxious to get back to work, but I can tell you what I have read over and over again on this web site.  Take a deep breath and give yourself time to absorb the information.  This is a very slow growing tumor and you don't have to decide on your treatment options today, or tomorrow. Apparently, it is very likely that your neurosurgeon will tell you that the fist thing you should do is wait 3-6 months, then get another MRI to see the growth rate.
It is interesting that you mention being sick.  I had a bad cold this week for the first time in years.   It made me so dizzy.  Even though I am feeling better, I am still dizzy.  I am wondering if being sick makes the symptoms worse for a period of time.
Good luck.

ANSydney

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Re: Shaky but not shaken
« Reply #3 on: June 22, 2017, 05:22:22 pm »
Skebenga, welcome to the club that nobody wants to be a member of, but everyone is friendly.

Your case is interesting. An 8 x 5 mm tumor is small, however your symptoms are significant. What symptom do you have that prevents you from piloting?

If you have a cold, and it causes an ear infection, of the non-AN ear, you're going to be much more affected than others. That's because you're already down one vestibular system and the cold may temporarily take out the only remaining one. Dizziness and instability are going to temporarily occur.

Keep a very good eye on your symptoms. Take objective records of your dizziness and have regular hearing tests. Have MRIs every 6 months. If symptoms don't objectively get and stay worse and the MRIs do no show rapid growth, there may be no need to get active treatment. Ever.

Skebenga

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Re: Shaky but not shaken
« Reply #4 on: June 23, 2017, 03:30:26 am »
Hi. Thanks for the welcome and the advice.

I have daily unsteadiness with occasional dizzy spells. Hearing loss so far is 15dB in the higher frequencies. Not able, allowed or willing to fly when dizzy.
Symptoms began Dec ‘16
MRI Jun ‘17 8x5 mm AN
MRI Nov ‘17 11x6 mm
Watch and wait
MRI Nov ‘18 22x13 mm
Cyberknife in Feb ‘19

voron999

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Re: Shaky but not shaken
« Reply #5 on: June 28, 2017, 12:52:29 pm »
Hello!
You and I have very different carriers - IT prof vs. a pilot.
However, even myself I got to think of potential carrier changes that could accommodate AN issues and still give you honest living.
I, for one, could switch to instructing; I think.
Much easier to talk/teach others as of me.

I say be honest and think about this philosophically.
Carrier change is not the end of life; you have to do what you have to do (sooner or later, you get to that point in time).
Jan 11, 2016: 4 x 3 mm nodule in the left ......consistent with an acoustic neuroma.

Skebenga

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Re: Shaky but not shaken
« Reply #6 on: June 29, 2017, 07:00:03 am »
Thanks Voron for the reply.

I understand what you mean and I'm facing this as practically and with as open a mind as possible. I am willing to face whatever outcome there is.

My ENT says that because it is small, normally they would wait and watch, doing regular MRIs to check rate of growth. But because of my symptoms and because of my job, he recommends treatment asap, to try and preserve vestibular function. The outcome doesn't seem certain, and I'm trying to find out if I have reason to hope that if it is treated soon, I may get full health back, so that I can continue my job.

I haven't seen a neurosurgeon yet, so when I do, perhaps I'll have a better idea, but I thought that there is a lot of experience on this board that may be of help.

Thanks again.
Symptoms began Dec ‘16
MRI Jun ‘17 8x5 mm AN
MRI Nov ‘17 11x6 mm
Watch and wait
MRI Nov ‘18 22x13 mm
Cyberknife in Feb ‘19

Director

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Re: Shaky but not shaken
« Reply #7 on: June 29, 2017, 07:38:38 am »
Hi Voron
  One of our board members is a pilot. Let me know if you would like me to put you in touch with him.
Allison Feldman
CEO, ANA
Director@anausa.org

voron999

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Re: Shaky but not shaken
« Reply #8 on: June 29, 2017, 09:05:35 am »
Hi Voron
  One of our board members is a pilot. Let me know if you would like me to put you in touch with him.
Allison Feldman
CEO, ANA
Director@anausa.org

Thanks, but I am not a pilot.
Fortunately, I have a land-based job (though I do climb trees and ladders since my hobbies involve beekeeping and fruit tree management). :)

Skebenga is a pilot, however, and could use advice from other pilots.

Jan 11, 2016: 4 x 3 mm nodule in the left ......consistent with an acoustic neuroma.

Skebenga

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Re: Shaky but not shaken
« Reply #9 on: July 07, 2017, 09:00:52 am »
Hi, I've been traveling, seeing more specialists.

The consensus seems to be to watch and wait.

Thanks for replies, all info is gratefully received.
Symptoms began Dec ‘16
MRI Jun ‘17 8x5 mm AN
MRI Nov ‘17 11x6 mm
Watch and wait
MRI Nov ‘18 22x13 mm
Cyberknife in Feb ‘19

PaulW

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Re: Shaky but not shaken
« Reply #10 on: July 07, 2017, 05:37:51 pm »
You may want to enquire about a non invasive treatment that destroys the balance organ on your AN side. Basically a gentamicin (antibiotic) injection directly into middle ear....
In surgery they cut the balance nerve anyway... which is why your balance eventually improves after surgery.

So this would allow you to stay on W&W hopefully keep your hearing, avoid the risks of surgery, and avoid the unknown potentially long term balance issues with GK or W&W.

I don't know the risks or consequences of the treatment, but it would seem to me that this treatment could potentially get you back in the air without the risk of further random balance issues.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

Cityview

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Re: Shaky but not shaken
« Reply #11 on: July 13, 2017, 06:37:58 am »
when I have asked doctors about the reasons to treat vs watch/wait the answers I have gotten include:

Any or all
1. Growth
2. Balance issues
3. Hearing changes

In fact at my very first consult over three years ago the doctor said watch/wait was fine as long as I wasn't "seeing the room spinning"
So far I haven't experienced that but I imagine it's very difficult.

Truthfully, all of the decision making is patient preference  - with consultation from experts.


« Last Edit: July 13, 2017, 08:31:41 am by Cityview »
5 years ww
small AN

Skebenga

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Re: Shaky but not shaken
« Reply #12 on: November 29, 2018, 12:41:52 pm »
Well, it’s been a year of wait and we did the watch part yesterday. MRI shows my gizmo has now more than doubled to 2.2 x 1.3 cm. My consulatant has referred me to see a neurosurgeon at the Hermitage in Dublin and I have set up an appointment to see another for an additional  opinion. I’m a bit shocked by the growth (I was hoping it was static) although, to be honest, my symptoms of imbalance and fatigue were only getting worse and my hearing had noticeably deteriorated, but I am wondering if there is a point where it is too large for Cyberknife, which my consultant is recommending.

Symptoms began Dec ‘16
MRI Jun ‘17 8x5 mm AN
MRI Nov ‘17 11x6 mm
Watch and wait
MRI Nov ‘18 22x13 mm
Cyberknife in Feb ‘19

golfguy49

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Re: Shaky but not shaken
« Reply #13 on: November 29, 2018, 06:30:16 pm »
Some who have had successful Cyberknife may disagree, but I tend to agree with the 4 surgeons I have seen who all say that I am too young (47) to do Cyberknife.  Cyberknife, in the case of my surgeon(s), seems to be reserved primarily for the older folks where immediate removal of the tumor is not necessary (slower growth, smaller in size) - really as a tool for the aged to avoid going under the real surgical knife and just stop the tumor in its tracks.  The tumor may continue growing and then surgery later in life becomes much more difficult after the tumor has already been zapped with radiation.  Also, if complete removal via surgery is necessary, it is much better to do it while young and also not risk conversion to cancerous tumor by using radiation (low risk).  Given your rapid growth rate, it is surprising to hear they might consider Cyberknife, as I am sure that is the opposite of what my surgeon(s) would say...especially given how symptomatic you are with balance, hearing, and fatigue issues.

There are just my personal opinions after speaking with 4 top surgeons over the past 6 months regarding my own situation.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  Currently evaluating surgery options vs. W/W.  Located in Chicago area.

October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.

October 2019: 14 x 5 x 5mm.  Surgery scheduled for early Dec.

Alyssa

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Re: Shaky but not shaken
« Reply #14 on: November 29, 2018, 11:00:22 pm »
This is a AN pilot post, he eventually flies back to the sky. His story is inspiring me.  You may contact him directly through message or email.

https://www.anausa.org/smf/index.php?topic=23188.0

 


anything
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