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For those in the 'watch and wait' status / Re: What accounts for some with few symptoms?
« Last post by PaulW on February 21, 2019, 01:55:13 pm »
Most people are unaware of the vestibular ocular reflex and how it affects ANers.
For ANSydney.. this Dr is from Sydney and he developed head impulse testing for detecting vestibular problems. People with AN’s and symptoms often fail this test. Losing your VOR is significant.
https://m.youtube.com/watch?v=769hGL2qKTU
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For those in the 'watch and wait' status / Re: What accounts for some with few symptoms?
« Last post by PaulW on February 21, 2019, 01:41:06 pm »
I think we need to consider what causes the symptoms.
One observation I have made is that symptoms often increase when the tumour reaches 5mm in diameter and starts to compress the nerves and blood vessels that feed the cochlear inside the internal auditory canal. Larger tumours May or may not involve the IAC.
People that don’t have IAC involvement often have larger tumours with less symptoms.

Blood flow to the cochlear.
As the tumour grows it can restrict blood flow to the cochlear.

Just like you can wake up with a numb arm from lack of blood flow, you can have a numb cochlear too. I used to wake up in the morning and my hearing would be poor. As my blood pressure increased my cochlear after half an hour would no longer be numb and my hearing would get better. But while that was happening I would be very dizzy. During the day as you sit up, walk around, your blood pressure changes continually, and with each blood pressure change comes dizziness. You don’t get used to it because it’s a moving target.   Cochlear dysfunction affects the vestibular ocular reflex. It’s the gyroscope for the eyes, your brain can’t addapt. A damaged VOR means you must manually move your eyes, which is tiring!

One day I heard a loud pop in my head, and my hearing got better within half an hour.
My next MRI showed that my internal auditory canal had been deformed by the tumour and was now 7mm in diameter. The tumour had pushed that hard that the bone had been deformed. The extra space available in the IAC meant my symptoms got better.
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AN Issues / Re: New Guy - Strong Vertigo attack question
« Last post by Crazycat on February 21, 2019, 03:43:51 am »
Could be an inner ear infection.

I had the same thing long before my AN in 1983. Woke up one day and the room was spinning. It stayed like that for over a week, gradually easing up. I went to a doctor who told me it was "viral vestibulitis" (inner ear infection) and gave me a
hit of Antivert, more commonly known as "Meclazine". I can't remember if it worked. What I do remember is that the night before my affliction I had gone out to see a loud band at a local club. The loud noise could have set it off. I also recall a strange visual effect I had been experiencing for several weeks before the vertigo. When I'd wake-up, my vision would roll very slowly, from bottom to top, like an out-of-phase horizontal control on an old T.V.. As I went about my day, the rolling would gradually go away. So I knew something wasn't right. But I think it was the loud music that really set it off.

It is interesting that during the period I was getting sick from the AN, I was a working musician, playing 4, 5, and even 6 nights a week, driving all over, virtually deaf in one ear, lightheaded, plagued with double vision, crippling fatigue and malaise. I couldn't call in sick; neither did I have any health insurance. I kept pushing myself until I literally couldn't put one foot in front of the other and I was in pretty good shape at the time, jogging 5 miles a day on trails through the woods.

I had been pulled over marked lanes and suspicion of DWI four times. One time, and for the first time ever, I actually fell asleep behind the wheel ....and survived by the grace of God. I snapped to broadsiding a snow bank against the guardrail on the opposite side of the road. Luckily, no one was coming the other way.

Inner ear infections are not to be taken lightly; I know a girl who lost her hearing in one ear from an inner ear infection.

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Pre-Treatment Options / Re: ANother newbie
« Last post by ANderson1982 on February 18, 2019, 06:42:00 pm »
Thanks everyone for their invaluable comments.

I am at a dilemma between surgery and radiotherapy. I am at my mid 30s and wish for the minimum impact to my life. Surgery sounds like I will need a period to recover functioning...

My doctor has been strongly recommending the knife due to my AN size and my age. I am almost convinced.

I would like to find out more for those when went for radiotherapy with a similar or larger AN. Any negative impact? Heard about the risk if radiation 15yrs down the road but I am not so concerned. I am happy if I can live normally for the next 15 years.

Heard many recommendation to go for the knife for such AN size, would like to know those who will recommend radiotherapy.

Currently, I have tinnitus, 70% hearing loss/speech discrimination on affected ear. No balance problem. Getting more tired and forgetful ( not sure if it is due to AN).



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For those in the 'watch and wait' status / Re: new and weird MRI finding..
« Last post by judyette on February 16, 2019, 07:35:16 pm »
hello.  i realize it's been 15 months since last post to this topic, but just wanted to add that i also have tarlov cysts.  MRI showed one on T-spine, and several in sacral area.  i have pain, numbness, and weakness in left leg and foot, and a moderate amount of low back pain.  I also wondered if these cysts were somehow related to the AN.   
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Facial Issues / Re: Facial Paralysis Recovery Timeline
« Last post by JLR on February 16, 2019, 05:46:01 pm »
Hi Sanderson, don't give up!! I had surgery November 2016.  Balance was terrible. Better now. Deaf right ear from surgery facial paralysis finally improving. Eye can finally close. I am improving very slowly but improving and it took 2 years!  Your only 11 months out. You are definitely going to improve. It takes a lot of time to mend those nerves. Be strong. It takes time. Regards, Joan
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Microsurgical Options / Re: Surgery after regrowth
« Last post by Patti on February 16, 2019, 02:07:33 pm »
Hi Godwin-Doesn't that stink to have regrowth??? Just curious-how big was your first and then the regrowth? And how long in between? Patti
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Liam,
Your approach seems pretty sound.  Here are a few suggestions.  If you want the best answers on radiosurgery, talk to a radiosurgeon, not a regular surgeon, and vice versa.   Surgeons tend to want to operate, and radiosurgeons tend to want to radiate.  There will not be a medical answer for your choice, it will be a personal choice based on your evaluation of the pros and cons.  I had surgery and am very happy with the result.   Dr Chang is supposed to be tops for radiosurgery.

On scuba diving, I and others who have had surgery will tell you that sometimes we can feel it when a change in the weather is coming, and I think it has to do with barometric pressure.  Personally, I would not want to try scuba diving since my surgery, not that I ever did.  I think this would be a good question to ask the doctors - is it advisable for me to scuba dive after treatment?  Their answers may help you decide which way to go.

I think you are looking at hearing the right way.  No one wants to lose it, but many of us have.  For me, it has been a very minor thing.
All the best,
Rich

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Microsurgical Options / Re: Surgery after regrowth
« Last post by v357139 on February 15, 2019, 09:05:14 pm »
Hi Godwin.  Not sure if I spoke to you once.  Sorry for your news.  I think this may be hard info to come by.  But if you talk to a few doctors who have all done a high volume, and ask the same question, and compare the answers, you may get some insight on this.  Doctors at House also do very large volume, and that could be another place to ask the question.

Best of Luck,
Rich
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Balance Issues / Re: ginger for vertigo
« Last post by v357139 on February 15, 2019, 08:44:17 pm »
Ginger is a great health spice.  I use it for my stomach.  Just be careful if you are on other meds like coumadin, because there is some interaction.  Did it help your vertigo?
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